Dream Mom

Blenderized Diet-A New Beginning

2012-01-17T09:28:00.003-06:00

Dear Son’s Blenderized Diet is going amazingly well. As you know, I received a Blendtec blender for Christmas and was able to start transitioning Dear Son from formula to a “real food” diet. Dear Son has been using a feeding tube since 2004 for medications and in 2006, had to transition to formula and could not longer eat foods by mouth due to aspiration issues.

In the beginning, my goals were quite simple. I wanted to feed him real foods to help build his immune system. I researched blenderized diets, foods to help his immune system and read everything I could on the internet to assist with this transition. I started the transition in December but there was a steep learning curve. Things didn’t work out in the beginning and I had to go back to the drawing board and try to figure out how to adminster the food.

I finally got the hang of it and on December 20th I was able to start feeding him “real food” for dinner. The transition went so well that two weeks later, I added “real food” for lunch. And then my life totally changed. Dear Son began sleeping through the night. Apparently, he must have been hungry which is why he didn’t sleep well. I had no idea since I had been following doctor’s instructions to decrease his formula intake to help control his weight. Well, when I transitioned him to real food, I researched not only foods to help his immune system but I really worked on trying to make sure he was getting enough fiber in his diet to help with his bowel movements. (Caution-You do need to pay attention and make sure that they are getting enough water when you increase the fiber otherwise they will get backed up.)So even though his calories were the same, the fiber appeared to help him “feel full” and he slept through the night. Now certainly, I’ve known for some time that fiber makes you feel full however I never thought it would have had this kind of impact for Dear Son. I figured this out after about the fifth day when he no longer woke me up. For the first time in ten years, I was able to get more than two consecutive hours of sleep while caring for Dear Son. He slept so well in fact, that I had to force myself to get up to get his medications since he no longer woke me up. In the last ten years, the only time I’ve ever had to set the alarm clock was on school days, so that I could get up at 3:40 a.m. to get his food started in the feeding bag for school. This is life changing. For the last ten years, I have been up multiple times per night and I worried about the long term effects of chronic sleep deprivation on my health. There are many studies that document these effects and I considered chronic sleep deprivation my number one health issue.

Where Dear Son is concerned, the fact that he is sleeping soundly will help him as well. On a cellular level, his body will be able to repair itself now that he is sleeping soundly as well! I can only imagine what a difference it will make over time for him as well.

Not only is Dear Son sleeping well but his bowel movements are normal. When he was on formula, he required Miralax to help with motility (he has motility issues related to his gene mutation). Even with the Miralax, it was a fine line. He either had no stools or drippy stools. Now he has at least one soft stool per day. With the formula, he was getting 6 grams of fiber/day and now that I feed him “real food”, he has on average, 20 grams of fiber between lunch and dinner. I still have him on Miralax but will wean him off over time. I plan on continuing lunch and dinner meals with the real food for a while before transitioning breakfast.

Overall, everything seems better. I’ve been using Livestrong.com to track his calories, protein, carbs, fat and fiber and then inputting all of this information into an Excel spreadsheet. I created formulas so that I know precisely how many calories he has per day plus all of the other nutrition information.

In addition, I use a recipe software program to record meals I’ve created for him. That way, I can save time by having meals created and calorie counts all figured out.

I have reviewed Dear Son’s new feeding plan with his doctor and he approves. I had finally located a registered dietician who is an advocate of blenderized diets and will be setting up an appointment to review his meal plans and make sure that I am not missing anything.

Overall, it is clearly the best decision I have made in the last ten years. I plan on doing a blenderized diet series to walk through everything a parent will need to transition from a formula to a blenderized diet. In the meantime, I am having the time of my life cooking for Dear Son. It is the greatest feeling to be able to cook a real meal for him!

Do you feed your child a blenderized diet? If so, what is the one thing or best tip you think all parents should know?

Great Item for Special Needs Kids

2011-12-28T10:25:00.005-06:00

Photo 1: American Sales Inflatable Pull Sled

I came across a sales flyer today that had a great item for special needs kids. This is a 33 Inch Inflatable Pull Sled. The reason that I think it would work well is because it has a tall back. If you look at the photo, the back comes to the top of the child's head. I checked the reviews and they said that it was perfect for an 18 month old child. You may need to review the dimensions to see if it would work for your child. This sled is offered by American Sales. The regular price is $29.99 and it's on sale for $19.99. You can see this sled and purchase it here. This sled comes in two styles-see the photo above and the photo below.

Photo 2: American Sales Inflatable Pull Sled

The reason this sled would work well, is that if you have a child that has poor trunk control or poor head control, the sled would support the child's head and body and it would be soft. A child with poor trunk control or poor head control needs more support not less. This sled allows for maximum support. You can see that a bit in the first photo, where it looks like the child is almost leaning back; that is how a special needs child would look in the sled whereas in the second photo, you can clearly see that this child can sit up on his own. I would imagine it would help if you had a strap of sorts to secure your child even more. If your child receives any kind of physical therapy, you probably already have something like that.

I went on the internet to see if I could find other sleds that had a tall back like this one, however I could not. Most of the sleds that have "any" back at all, only come to the middle of the child's back. You can see in this next photo how the back is not tall enough to support a special needs child's torso nor is it tall enough to provide support for a child's head. If you do choose a wooden sled like this for a child, you would need to make certain that the wood is strong enough to support a child. Many of these wooden sleds have sides that are flimsy and aren't designed to hold a child in place.

This is so aggravating to me because it wouldn't take a lot for manufacturer's to make sleds with taller backs to support the kids. What I have learned over the years, is that when you make items that work well for special needs kids, it's also preferable for all kids. I remember years ago taking Dear Son to the park to swing. He required one of the swings with the tall backs that would support his torso and head. While there were many regular swings available, most kids and parents preferred the swings with the taller backs. It would be wonderful if manufacturers started with a concept of universal design then designed toys for kids based on that.

As for the sled, this goes without saying however I imagine you will be pulling your child in this sled, not sending a special needs child down a hill in it. I doubt a special needs child would have any skills to be able to stop themselves if they tipped over in it. I would also recommend a helmet as well.

I remember taking Dear Son sledding around the house in one of the wooden sleds with a back on the sled, similar to the photo above where the back only went up half way. This was all they had some twenty years ago. It didn't provide enough support and when I pulled the sled, it stuck a bit and the first thing that happened was that he went face first in the snow and he hated sledding after that, lol. That's all part of experiencing new things. As parents of special needs kids, we have to walk a fine line between letting our kids experience things like snow and sledding and understanding that the sled might tip over and they might get snow on their faces. This is very different however than sending them down a hill on a sled. If you want them to experience that, then the mother or the father gets on a toboggan, holding the kid securely in front and you go down a small hill.

Here's hoping you get a chance to get outdoors a bit and enjoy the winter weather.

Merry Christmas!

2011-12-24T15:36:00.010-06:00

I just want to wish all of you a Merry Christmas. Dear Son and I thank you for all of your support. I thought you might enjoy a few holiday photos of our studio apartment. Starting with the living area...

The view into my bedroom...

My cat kept running over to each section of the apartment as I took photos so he's in quite a few of them...

Although my place is small in size, I went for all out glamour. The gold bedding was perfect for Christmas.

Some pretty candle rings on the crystal and gold sconces.

I love the simplicity of the bedding...just one display pillow. Next year, I might try swapping out the display pillow for one with burgundy, cream and gold.

Since I only have room for a small table on the right side of the room, I kept the decor to scale.

Moving around the room...

I didn't do a lot in the bathroom. I did add a crystal Christmas tree dish edged in gold but didn't get a chance to get a photo of that.

Regardless, a little decor for the towel bar. The Noel ornament was a gift from Dear Son's babysitter. She was an older lady and was great with him. She worked for us for a few years.

This Christmas photo is one of my favorites. Dear Son was only six weeks old when this was taken. My sister made the Santa hat and bib.

This was one of his first Christmas type photos in the mall. He was actually really fussy but it looks like he's smiling. I don't think he cared for the sweater, lol. He couldn't sit up at this age but was propped. If you look closely, you can see his eyes were a bit crossed as well. He had surgery a few years later.

Moving along to Dear Son's side of the room. I could do much over here since I had to keep the floor space open in order to move around. He has a hoyer lift that I keep on this side and although I store his wheelchair in the hallway, I couldn't put a tree on this side since I need to be able to move him around. I did add lights in the window and some beautiful silver deer to the mirror.

Wiggles, the cat, refused to get out of the pictures so I told him if he wanted to be in the pictures, he had to wear a Santa hat. He didn't care for that very much.

You can see the lights in the mirror.

Here's the cat after I made him wear the hat; he doesn't like it as you can tell by his face.

This is my favorite photo. On Dear Son's dresser is his Mr. Christmas musical train that we got him last year. He loves listening to the Christmas music and watching the train going around. In this picture, the cat was just near the train and made him laugh but I couldn't get the photo in time.

And finally the outside view. You can see the stockings in the window and the wreath and lighting on the balcony next to it. That is right outside my window.

I hope you enjoyed our holiday tour. Have a wonderful holiday.

Merry Christmas to Dear Son from Blendtec!

2011-12-22T00:44:00.009-06:00

As many of you know, I’ve been a huge advocate of Now Foods Organic Virgin Coconut Oil for Dear Son. Once I started using it for Dear Son, I was able to nip any colds, flu or pneumonias from the start and since using it daily, Dear Son has not been hospitalized for pneumonia in 15 months. Prior to that, he had two to three a year. As you know, Dear Son has had a pretty rough time these past few years due to numerous hospitalizations. In 2009, the day before his Make a Wish trip, he came down with the swine flu along with a viral pneumonia and nearly died. At that time, the doctors told me that they did not think they could save Dear Son any more and that he would most likely die of pneumonia. He had several more hospitalizations after that and in May of last year, he was finally well enough to take his Make a Wish trip.

All total, it took six months from his hospitalization in 2009 for him to be able to sit up for two hours, long enough to make the trip to Disney in Florida. He still wasn’t well and we had to limit our activities. We had a wonderful time though. While we were there, we went to Universal Studios. One of my favorite memories from the trip was when we walked through the entry gates. They were enormous and it was like walking through the gates of heaven. As we walked through, I began to cry. We had spent months waiting to go on Dear Son’s Make a Wish Trip and we talked about it forever and when the swine flu happened, I thought we’d never make it. I felt like a failure in that I thought I waited too long to take the trip and thought he was going to die, having never made it. I had planned his Make a Wish Trip to coincide with his 18th birthday and instead, he got the swine flu the day before we left and he had respiratory failure the following day and was on a ventilator fighting for his life on his 18th birthday.

The Make a Wish trip was powerful for all of us. One of the things that it did for me and for us was to give us something to look forward to. When you care for a special needs child, it’s hard to do normal tasks of daily living so you don’t do as much as able bodied people because, well, everything is sooooo hard. But it wasn’t just that we had something to look forward to, the powerful part was that we broke the cycle of going to the hospital. For many years, the only placed we ever packed for was the hospital. Dear Son has been hospitalized some 70 plus times in 20 years and while most people have a packing list for their vacation, I had a packing list for the hospital.

After our trip, I vowed that I never wanted to go back to the hospital. I began researching things for us and discovered green spinach smoothies and organic, virgin coconut oil. I began drinking smoothies and was amazed at how I was able to relieve the pain from my arthritis with these amazing drinks. I started in June of 2010 and never looked back. Late last year, I discovered organic, virgin coconut oil and began giving it to Dear Son. I soon learned how it would prevent colds, flu and pneumonia in him. It tooks months to figure out the right dose for Dear Son but I did and I am proud to say that it has now been 15 months since he’s been hospitalized with pneumonia. Certainly he’s had a few hospitalizations since then, but NONE have been for pneumonia.

A few months ago, I decided I wanted more for him. I thought that while the organic coconut oil was great once he had an illness, if I could build his immune system up, I could PREVENT sickness before it starts. I started reading about how I might use the nutrition in real foods and give that to him and take him off of formula feedings. (I had tried giving him real foods blended up but had failed since the food kept clogging the tube and I just gave up. )I made a list of all of my nutritional goals for him along with all of his conditions and began researching foods that would help each of his conditions. To give him real foods though would require a high powered commercial type blender, like a Blendtec or VitaMix. I researched the blenders and watched numerous videos and loved the Blendtec from the start. The Blendtec Total Blender would pulverize the food well, was easy to clean and fit under the cabinets and best of all, didn’t require a tamper. The only problem was that I couldn’t afford it. I mean these blenders sell for nearly $500 and I work part time so I can care for Dear Son who requires 24/7 care.

In early November, I sat Dear Son’s Dad down and told him I wanted a Blendtec for Christmas for Dear Son and I. I told him that I knew it was expensive, but that was the only thing I wanted for Dear Son. I normally never ask him for any Christmas gifts although he always gets Dear Son and I something nice. He hemmed and hawed a bit and I told him that I didn’t need an answer right away and that he should think about it. Then he said he didn’t think I’d make the food for him. But I persisted. He knew that I had been drinking green spinach smoothies for around 18 months and that I was into organic food and that it wasn’t a whim. He also knows I take really good care of Dear Son as does he. Then he asked what I’d do when Dear Son came to his house for the weekend. I said I would make all of Dear Son’s food and send it over. I sent him Blendtec videos and he still said no. Then I entered a Christmas Wish program on a local radio station asking for a Blendtec blender for Dear Son. It was the only thing I asked for.

Shortly before Thanksgiving, Dad asked for Christmas ideas for Dear Son. I told him that the only thing I wanted for Christmas was a Blendtec. I said I’d send him a list of some other options and sent him a list with the Blendtec at the top of the list. Here is what I wrote:

Blendtec Blender-"This is the only thing I want for Dear Son and I. I know
it’s expensive, but I can make his food and build his immunity to keep him well.
I’d rather have gift cards for the blender than anything else."

Right before Thanksgiving, I went to the Blendtec demo at our local Costco. They were offering the Blendtec and two blending jars for $474.99. I saw the demo and was excited. I called Dear Son’s Dad on the way home and told him about the demo. I tried the smoothies there and could taste the difference in the smoothness. I needed the blender to pulverize the food enough to get it through Dear Son’s feeding tube. The only thing I wasn’t clear on was whether or not there was BPA in the blender jars. So I sent Blendtec’s Customer Service an email regarding that issue.

Around this time, Dad called me and said he’d get the blender for us for Christmas. Blendtec responded to my email and clarified that the jars did not contain BPA and that they switched to BPA free jars in 2009. I thanked the customer service person and told her a little about Dear Son and how excited I was to get a Blendtec and start making his food to build up his immune system. And that was that.

Some two weeks later, I got an email from Blendtec. The person I wrote to had forwarded my email to their executives and they wanted to talk to me. They asked me for my phone number and the best time to call. A few hours later, I received a call from the customer service person. She said that she had forwarded my email to the executives at Blendtec and they wanted to send me a Blendtec blender! Can you believe that? I couldn’t! How cool is that? I mean, they had no idea how much I wanted a Blendtec and that it was the only thing I asked for at Christmas. They didn’t know how much I had been through with Dear Son or anything like that and yet, they offered to send me a reconditioned Blendtec blender. It was so exciting!

So let me show you my new baby….what do you think?

In this next photo, I am making tomato soup. It was delicious! Both Dear Son and I had some. I put his in through his gtube!

In this next photo, is Dear Son's first entire blended meal. I gave it to him today. This is a full day's meal although I am only giving him one blended meal a day for the first month as I need to transition him from formula feeds to blended foods gradually. More about that later. I created this entire day's meal. It includes: organic banana, organic strawberries, orange, organic spinach, organic broccoli, organic carrots, home made bread, organic chicken breasts, organic onion, walnuts (for omega 3's) and organic milk. It felt so good to give him this rather than formula. There was so much joy in making this for him! I got to be a real Mom again and make my son a "real" meal. Let me tell you, there was a lot of love in my kitchen today as I made up his food!

In this next photo, is the first smoothie I made in my new Blendtec!

So, all in all, a very exciting gift. It was so unexpected! Sometimes, Christmas wishes do come true!

Since I received the blender, I've been using it every day. I'll write more posts later on how to make a blended diet. In the meantime, Dad returned the Blendtec he purchased for me and instead, he'll give us the money to purchase some other items we need. And of course, I wrote Blendtec a lovely thank you note regarding our new blender.

What a wonderful way to end 2011. I just love this blender and it's amazing all of the things you can make. Everything I have made is just delicious. Thank you Blendtec for a wonderful gift and amazing product!

Note: If you'd like more information or to read more reviews on the Blendtec Four Side Blender, you can check it out here at my Amazon Store.

Best Toys and Gifts for Special Needs Children

2011-11-28T01:30:00.001-06:00

Back in 2006, I wrote a blog post titled, "Best Toys and Gifts for Special Needs Children". Since that time, it's been one of my most popular posts. Last year, I updated it and I thought I might reprint it again. I poured over the toy catalogs and websites looking for those toys that I thought were really good. I was amazed to find that there still wasn't a lot to pick from so I decided to do a few things to make it easier. First, I created a link at the top of my blog for "best toys and gifts" and I've added all of the toys I'll talk about today. I have included pictures and links for each toy along with a description of why I like the toy and how I think the child would use the toy or an explanation of how Dear Son used the toy. Disabled children enjoy many of the same toys that normal kids do however when they play with the toy, they play with it whatever way is easiest for them. In Dear Son's case, he had poor trunk control, couldn't sit up, no use of his arms or hands but liked to play with things with his legs, feet and/or mouth. I have also included a link for all of the toys today to the Amazon website. If you can use this link, I'd appreciate it-it doesn't cost you any more for the toy than going to Amazon directly, but Amazon pays a small referral fee and I use this to help with Dear Son.

Some of the best toys can be found in a few places:

1) The 0-24 month aisle typically has the best selection of toys that severely disabled children can actually do. Most of the toys in this aisle require gross hand or foot movements to activate.
The down side of this aisle is that often disabled children's chronological age exceeds their developmental age so sometimes these items might work for the child however the child is too large or tall for the item.

2) Many stores such as Target or Walmart have these cheap toy aisles where you can get toys for $20 and under. In these aisles, you'll find things like musical keyboards, etc. What is great about these aisles is that these toys are kept "simple" which means they are easier to operate for disabled kids. Often times, toys can be too complex for our kids. In this aisle, you'll find a simple keyboard that plays entire songs when you press one key. In the more expensive aisles, you'll find keyboards where the keys light up to show a child where to press, in hopes of helping them learn to play. Or the keyboard will come with a microphone for the kid to hold and sing. Often times, you don't need any of those things. Simple is best.

3) Be sure to check out Walgreens and drugstores for toys. One of the best toys Dear Son ever owned was this train that I got at Walgreens. It went around a 36 inch round track. I set the train and tracks on the family room coffee table and he would lean on the table and use his arm to knock the train off it's track. Then he would laugh. He loved working hard to get his arm over enough to knock the train off. I wished I could have had a tunnel for the train too; he would have enjoyed that. I tried to purchased nicer trains after that but the Lionel ones didn't work as well for Dear Son-the track was too sensitive and the train kept coming off. With the Walgreen's train, Dear Son could be a little rougher and knock into the table and the train would keep moving.

4) Amazon-It's often hard to get out and shop with a disabled child so it's easier just to shop online with Amazon and have it delivered to your door.

Without further delay, here are toys that I recommend. For your convenience, I attached a link to Amazon and have also listed the current price of the toy as of today.

Electronic Talking Silly 6 Pins by Hasbro $44.95

I can't say enough good things about this product. This is a great product for special needs children who have poor arm/hand control or poor trunk control. They can knock the pins over several ways-with their hands, their head, their arms or by bumping the table. My son couldn't roll the ball but loved knocking them down by the ways I described. He loved the music it played and got such a kick out of things crashing. In addition, it was a great way to help him learn to use his hands/arms in occupational therapy by knocking the pins down.

Musical Hands Mat $39.95

My son used a musical mat similar to this when he was a baby and learning to roll over. The physical therapist would lie my son on the mat and then help him roll over. As the child rolls over, the music is their reward thus helping them work on rolling over. This mat allows you to set it up to hear each note or to hear complete songs. When babies can't move at all, you want a maximum reward for a small movement, meaning you want to activate the music with the slightest movement. I don't think they'll use it like the child shows in the photo, meaning placing their hand on it but rather as a tool to help them learn to roll over.

Fisher-Price Precious Planet Kick and Play PianoFrom Fisher-Price $29.99

This toy would be great for a child who had good foot/leg control but limited hand control. It would encourage them to move their feet. Also, if placed in their crib, or even on the floor, it would be easy to activate with the slightest movement.

Vtech Little Smart First Words Plus Toy From vtech

Five stars for this toy! I used this toy when my son was very small and I wasn't sure if he even knew what was going on. I would hit the Mama button and after a while, he was able to find that button and hit it. He was able to learn where the Mama button was and also some of the other buttons. This was great because he couldn't speak. I did work with him on this toy every day so it wasn't like he learned it by himself. When he pushed on the buttons, he did it with his mouth/chin, not his hands (Dear Son didn't have any use of his hands/fingers.)

Here are two examples of these bounce back dolls. The base is filled with sand and the toy is made of vinyl.

Rocket USA Bozo Bop Bag $16.99From Rocket USA

This product is great for a child who can't sit up but can use his legs. They can lay on the floor and use their legs to kick the Bozo down and it bounces back up. It's important to remember that special needs kids need ways to release energy just like regular kids do. My Dear Son didn't have use of his hands or arms but his legs and feet worked well. He loved this. The other reason this is good is because as they are kicking and moving their legs, they are strengthening their core which is great for kids with low trunk control or for kids who can't walk. Any time you can help them increase their core muscles, it will help them for walking.

Rocket USA 46 Inch Bam Bam Bop Bag Obama $34.98From Rocket USA

See Bozo review for comments.

Easy-Twist Play Tent House: Premium JUMBO Size Six Sided Hexagon $38.60From eWonderWorld

This toy is great if your child can't sit up. My son had no trunk control but good use of his legs. He loved to lie down in the ball pit and take his legs and press down on the sides of the tent to try to knock it over. Often times, he'd play and then get tired and liked to fall asleep in there with balls on him of course! This ball pit is similar to the one he had and he was able to lie on his back in there and not choke on anything. I would not recommend lying a child who can't roll over face down in there. I never did! That being said, I believe it to be safe or I wouldn't recommend it. This was one of my son's favorite toys. **You need to order balls to go in here! 200 Plastic Pit Balls for Play Tents: 4 Colors - Red, Yellow, Green, Blue $42.60From eWonderWorld

These are the balls to go in the ball pit.

Alex Ready, Set, Go! Red Trike $49.99 on sale (Regular Price $199.99) From Alex Toys

Love this trike! Oh, how I wish they had something like this when Dear Son was young! I like the fact that it has a tall back, has seatbelts and straps, has a umbrella to protect against the sun and has a handle to push them. I think this would be a five star toy! Great for a child with poor trunk control but legs/feet that move.

Playskool Chuck My Talking Truck $31.58 From Playskool

Dear Son loved Chuck the Talking Truck, especially when he crashed into the wall or something. It's been upgraded since then and Chuck "comes" when you call him, meaning it's voice activated. Regardless, I think this would encourage vocalizations of some kind with the kids. Even if your child couldn't vocalize, you could call the truck.

Photo of Dear Son listening to, "Twas the Night Before Christmas Story" by Mr. Christmas.

Mr. Christmas Winter Wonderland Village Christmas $55.60

This is the item that I ordered for Dear Son this Christmas. It's a train that goes around the village which is comprised of a church, townhouse and Christmas tree. It plays 15 Christmas carols and 15 year round classics. This also comes with an A/C adapter. This items typically retails for $80 or more however I found the best price at Amazon. The A/C adapter can drive up the price a bit on these products however it's really great. Dear Son listens to these so much that I'd have to replace the batteries constantly so the A/C adapter is appreciated. This item is fairly small, only 10.75 inches wide which will be perfect for his nightstand since he has to lie down a lot since he can't sit very long. Also, he loves trains so this product will be perfect for him. He'll love to watch that train go round and round and the music will be very soothing. One thing I personally like about Mr. Christmas products is that the music is really nice and doesn't get on your nerves after hours of non-stop use. As with all Mr. Christmas products, they come with a volume control.

Mr. Christmas Symphony Surprise

My son loved this item. Mr. Christmas makes high quality musical items that my son would watch for hours. What's great about Mr. Christmas musical items, versus other musical products, is that they have a volume control and the sound quality of the music is good. Cheaper musical items have poor sound quality or the volume control is really loud and scares the kids or is annoying. Mr. Christmas items have been a favorite of my son's for years. While this one is currently unavailable on Amazon, I have purchased Mr. Christmas musical toys at Target, American Sales or home improvement stores. Each year, Mr. Christmas develops new musical items. You can check the Mr. Christmas website and then locate a retailer from there. If I recall, that’s how I located the Mr. Christmas Symphony Surprise; we got it at Menards for $79.99.

Child's Rocking Chair - Espresso Brown Finish $55.99From Table & Chairs

Child's 2-Slat Rocking Chair – Red $47.78 From Kid Kraft

Angel Line Country Adult Rocker $137.49From Angel Line

My son had poor trunk control and no use of his arms and hands, was wheelchair bound but had good use of his legs and feet. He loved using a rocking chair. The rocking chair gave him the freedom to move around the room and offered support. He would sit in the chair and scoot the chair by moving his feet. The rocking chair helped him practice his balance by constantly working his torso. What is important is that you need the back of the chair to be tall enough to support their back and their head. The top of the child's head should be even with the top piece on the back of the chair since they need head support. You can not leave a child unattended in this chair nor use it near stairs obviously. My son loved to sit in it and scoot over to the window, lean his head on the window and look out. There are many wooden rocking chairs to pick from on Amazon so be sure to check them out and get the right height.

Radio Flyer Pathfinder Wagon Red From Radio Flyer $59.54

My son had poor trunk control and was wheelchair bound. He loved the red flyer wagon and this one is great because it has a taller back which would provide support for kids with poor trunk control. It also comes with a seatbelt. I walked my son every night in his wagon and he enjoyed it more than walks in his wheelchair. You want to make sure that their head is supported by the backrest. I've read some comments on turning and I don't know about that. When my son was small we had the Red Flyer with the wooden sides. I would think you should be o.k. I would recommend the umbrella for days when you want to take a special needs child outside. Often times, they can't wear sunglasses or they fall off so an umbrella would make it easier on them especially if they can't move their head to keep their eyes out of the sun.

Radio Flyer Umbrella Accessory $17.82 From Radio Flyer

You may want to consider this accessory to add on to the wagon. If your child is special needs, they may not want to wear sunglasses or may not have enough head control to keep their eyes out of the sun. Also, on really hot days, you want to keep them from getting sunburned so this is a great idea. I have to wonder if you might also be able to clip this umbrella to their wheelchair.

Elmo Farm Fun Video Play-A-Sound $17.95From PIL

I like this book for several reasons. First, Dear Son loved it when I read books that had some sound for the different animals or characters. From a developmental standpoint, I liked it because he soon learned to "anticipate" when the sound was coming in the story, especially for sounds he liked. That helped me understand what information he was processing in his head. This book goes a step beyond that and not only gives the sound of a horse galloping but shows the horse galloping on the LCD screen. Often times it's helpful for children with disabilities to learn new information when they get information from different senses; in this case, they can "hear" the horse and "see" the horse. I'd recommend this book or other books that are "press and play" so to speak, even if they don't have the LCD screen.

Baby Einstein Press and Play Pal Toy, Panda $34.98 From Baby Einstein

This toy is similar to a toy my son loved. By pressing the hands or feet of the toy, different instruments are activated. My son had no use of his hands but I imagine he would press on the toy with his feet or bite on it with his mouth. You would soon learn which sounds are pleasing or interesting to your child. Also, the music calms them. My son had a similar toy that he used at bedtime and he pressed it often as a way to soothe himself to sleep or when he had seizures.

Cat-One of the best things Dear Son really enjoys is our cat. A cat makes a great pet for a severely disabled child who can’t walk or move much because the cat is active and can do things that will make the kids laugh. The reason I would choose a cat over a dog is simple. With a child in a wheelchair, it’s often too hard to walk a dog with the child or there are many times when you can’t leave the child in the house to go out and walk the dog.

When choosing a cat, I referred to the book ASPCA-The American Society for Prevention of Cruelty to Animals to help me find a cat that met our needs. I looked for a cat that was: 1) good with kids 2) lap cat 3) liked to play.

To this day, Dear Son loves our cat. The cat meows when he wants Dear Son to pet him. I lift the cat up to Dear Son’s bed and then take Dear Son’s hand to pet the cat. The cat kisses (sniffs) Dear Son. The cat also loves to sit on the armrest of Dear Son’s wheelchair before and after school. The cat also loves Dear Son’s art projects from school. He likes art projects with pipe cleaners (now called “fuzzy sticks”, lol). Dear Son gets a kick out of the cat playing with his projects.

Original Slinky $6.87
by Poof Slinky

Plastic Slinky (Colors May Vary) $6.82
by Slinky

Dear Son's occupational therapist recommended a slinky and he loved it. What's great about a slinky for disabled kids is that it doesn't require much movement from the child to get the slinky moving. If a child has difficulty moving or controlling their arm, this is perfect for them.

Stocking Stuffers

Veggie Tales Silly Songs Brush-a-long Musical Toothbrush $3.99 From Veggie Tales

This musical toothbrush runs for 2 minutes-the recommended brushing time. What is great about these toothbrushes is that the handle is wider which would make it easier for a child with special needs who has poor hand control to grip. While you may still need to add padding to make it easier, it's a great start. I used these for lab blood draws to, to distract my son while the tech was drawing blood. I liked musical toothbrushes versus other toys because they were slim and easily portable versus larger toys that were musical.

Spider Man Musical Toothbrush $6.95

Great for a stocking stuffer. Music plays for two minutes. Comes in red or blue. Not only is 2 minutes the recommended amount of time to brush your teeth but I took a musical toothbrush along to a blood draw. I held the toothbrush in front of my child and pushed the button; he was distracted by the music and the lab tech was able to draw his blood without any crying!

Sesame Street Finger Paint Bubble Bath $6.95From Sesame Street

Nice stocking stuffer. This is something to make bathtime fun. The way I would use it for my disabled son was to use the paints to write "I Love You" or something on him at bathtime. It's hard when your child can't play with something but you still can do things to make bathtime fun for them.

Hohner Kids Single 5" High Cage Bell, Assorted Colors $4.80From Hohner Kids

Nice stocking stuffer. This price is for one bell. Dear Son liked this type of bell-he would pick it up between his toes and shake it.

These are my absolute best toy/gift ideas for special needs children. I hope this list will help you find some gifts or give you some ideas for your special needs child. In the future, you can click on the store link at the top of my blog and it will link you to any and all gift ideas.

Note: Dear Son is nineteen years old and suffers from seizures, dystonia and is severely delayed as a result of a random mutation of the ARX gene. He also has a progressive neurological disease.

Thanksgiving Prep and New Recipes

2011-11-22T22:20:00.017-06:00

This year, I am tweeking my Thanksgiving menu a bit. Since it's easier to stay at home and cook versus trying to get out somewhere with Dear Son, I'll be cooking at home for four people. While I am still serving the same favorites that I do every year, I have decided to try two new recipes and change up the turkey. Whatttttttttttt???? You heard that right...the theme this year is an easy, breezy, lip smackin' Thanksgiving meal.

Let's revisit my Thanksgiving menu and talk about the normal preparation. My typical menu goes something like this:

Whole Turkey cooked in my Showtime Rotisserie

Sweet Potatoes

Broccoli

Grandma's Homemade Stuffing Recipe

Rachael Ray's Apple Crisp with Vanilla Ice Cream

This year, I am doing a few enchancements:

Switching to all organic food when possible.

Changing from cooking a whole turkey to cooking turkey breasts.

Making my own cornbread using the Neely's Honey Cornbread Muffin recipe for my homemade stuffing recipe. Update: I made the Neely's Honey Cornbread recipe tonight and added 1 cup of organic sweet corn off the cob that I got from the farm this summer. I chopped it in the food processor and added it to the wet ingredients. I baked the cornbread in a 13 x 9 pan for 25 minutes (you could go a few minutes less). I knew something really special was going on when the smell of the fresh sweet corn permeated my kitchen while it was baking. After it was done, I tried a small piece with some organic butter. It was amazing. Delicious. Will never make any other cornbread recipe again. Thanks Gina and Pat Neely!

Trying a new five star Apple Crisp recipe by the Neely's. I've never tried Pat and Gina Neely's recipes before so I am anxious to see how I like them.

Let's see what this looks like.

Instead of cooking a whole turkey, I'll be cooking turkey breasts. After all, that is the part that I like best and truth be told, I don't care for dark meat, the legs, the skin or anything else. I know, I know, a freak of nature, but that's just the way it is. I love turkey breast! Anyway, in this month's House Beautiful Magazine, Tyler Florence talked about cooking turkey breasts as opposed to cooking a whole turkey. In it, he says, "Roasting a whole turkey to get a perfectly cooked breast is the equivalent of cooking half a cow for a nice filet mignon." I couldn't have said it better, so out with old and in with the new. We are trying it this way for 2011. In the article, he actually has you take a turkey and cut out the backbone, then cook it flat. Actually, if truth be told, one of the reasons I am trying it this way is because it's just so darn simple. I have a Breville Smart Oven, which is a countertop convection/toaster oven and it cooks turkey, chicken and beef amazingly well. I got this oven as a gift from my sister last year and make everything in it. It turns out fantastic and is easy to clean. Who doesn't want easy on Thanksgiving? Last year, I was reading through the reviews on the oven and people stated that the only thing they didn't make in the oven was a turkey so I decided to make turkey breasts in there and they were amazing. Typically, I cook all organic meat and poultry in there and it turns out great every time. The organic chicken not only cooks fast, but it moist on the inside and yet the outside is moist as well and not dry. Fantastic. So this year, I purchased turkey breast to cook in there. Yes, I could have purchased a whole turkey and removed the backbone but then I'd still have a whole turkey, lol. Instead, I decided just to purchase the turkey breast. One tip is that if you like, you can purchase the turkey breast in a bag; Butterball makes them as do a few others. However, instead of cooking the turkey breast in the plastic bag, just thaw it in the refrigerator two days ahead of time then remove the plastic bag and cook the turkey breasts on a grill pan in the convection oven. Due to concerns over BPA, I would never, ever, cook anything in the oven with a plastic bag. Certainly, an organic free range whole turkey would be a lovely choice however when I priced organic whole turkeys last year from various farms, the price was around $150 or so, so it was cost prohibitive. Unlike organic chicken breasts, which is easier to find, organic turkey or organic turkey breasts are a bit tougher to find at local stores.

Broccoli-In the past year, I switched to organic foods so this year, I'll be making organic broccoli.

Sweet potatoes-I love sweet potatoes and typically prefer organic sweet potatoes over regular golden potatoes however since Dad is coming for dinner, he prefers golden potatoes so I'll make homemade, organic garlic mashed potatoes (made with organic golden potatoes, organic milk, organic garlic and organic butter).

Stuffing-I make my Mom's homemade stuffing and the stuffing calls for breadcrumbs and cornbread crumbs. For many years, I purchased herb seasoned bread crumbs and last year, I used my own bread crumbs made from my own bread that I make in my Zojirushi Mini Breadmaker. I have had a breadmaker since 2008 and bake all of my own bread, rolls, pizza dough, cinnamon rolls, hamburger buns, etc. from scratch. There is NO comparison to using homemade bread crumbs versus store bought. None. The taste difference is spectacular!

Two weeks ago, I tested out a new cornbread recipe from Allrecipes.com In my Mom's recipe, she used the Jiffy Cornbread Muffin Mix. I knew there was a better way but I hadn't tried any cornbread recipes. After selecting the Allrecipes cornbread recipe, I made it and found it to be good but it crumbled easily. More searching led me to the Neely's Cornbread recipe, which received a 5 star rating. It's made with honey which I am guessing acts as a binder to hold the cornbread together better and add moisture. So this year, I'll make the Neely's Cornbread recipe, made with organic corn meal. In addition, I have some organic sweet corn that I purchased this summer and have just enough to crush up and mix with the actual cornbread. Imagine that, cornbread made with real corn! There was one other enhancement that I wanted to do but didn't get a change. The Neely recipe is made with honey. I had hoped to get a jar of honey at the Arboretum, and made from bees at the Arboretum, but I didn't get a chance to get there. Next year, I'll purchase the honey in season and have it for Thanksgiving. That will be a real treat. This year though, store bought honey will suffice.

Next, I'll try the Neely's Apple Crisp. They add maple syrup and pecans to their's versus Rachael Ray's Apple Crisp which is simple but delicious. I purchased organic apples for the apple crisp and have real maple syrup from Vermont so it should be delicious. Topped of course, with real vanilla ice cream. Another tip is to prepare the Apple Crisp and then put it in the oven to bake right before you sit down to dinner. That way, by the time you are done eating, it's ready to take out of the oven and it's nice and hot, perfect for serving. In addition, you have that wonderful smell of the apples and cinnamon while you eat.

I try to keep Thanksgiving fairly simple, I mean how much food can you really eat in one day? I do however enjoy the taste of homemade food and because organic food has better flavor, you really get a nice explosion of taste.

Today, I made homemade bread to use for breadcrumbs. Tomorrow, I'll make the cornbread and crush up the breadcrumbs for the stuffing. Other than that, I should be ready to go.

On Thanksgiving morning, I'll use the same cooking schedule that I use every year. It can be a lot trying to get everything cooked on top of taking care of Dear Son but I find by using a schedule, it's much easier. Basically, it's just a list that I typed up that tells me what I need to do at what time so that everything will be ready on time. I find that it helps a lot since I don't have to recreate the time schedule every year. I keep this schedule in my Home Manual under holidays so I can grab and go every year. That's it for this year. Are you doing anything different for Thanksgiving this year? Are there any recipes that your family really enjoys?

Note: If you want to see more of my kitchen recommendations, click here, then scroll down to the bottom of the page and click on, "Great Kitchen Gifts". You can also find it by clicking on the, "Shop-Toys & Gifts for Special Needs Children" then scrolling to the bottom of the page.

All of the tablescape photos are from my former apartment. You can see the rest of my photos, which I refer to as my, "Sugar Maple Tablescape" in it's entirety by clicking here.

Drug Shortages

2011-11-02T19:22:00.008-05:00

In the past week, we encountered another drug shortage for one of Dear Son's medications. Dear Son wears a Transderm Scopolamine drug patch to dry up secretions in his throat. Dear Son's muscles have deteriorated and he has excess saliva that causes him to cough, choke and is at risk for aspiration. Recently, I was notified by Walgreen's that due to a manufacturing issue, they could not get any Scopolamine since it's been on back order for months. This is the second time this year, that we have been plagued by drug shortages, first with Klonopin and now with Scopolamine.

I was unable to find another pharmacy that had some Scopolamine so we had to switch to an alternative, Robinul. We had tried it several years ago and it didn't work for Dear Son. He has been on it for four days now and it still doesn't work. He chokes more every night and he's awake a lot from choking and I am awake worrying he'll choke to death and getting up to help him stay on his side and to suction him.

Several years ago, we tried botox injections to decrease the saliva however the effect was short lived. It lasted about two weeks and then it no longer worked.

Drug shortages are becoming more frequent and becoming a problem. When you have patients like Dear Son, whose life depends on these drugs, it's scary. Often, I can't find information on the FDAs website but I did locate the reason for the Scopolamine shortage on this website by the American Society of Health System Pharmacists. They list the reason for the shortage as, "increased demand". No release dates are given as to when it might be back in stock.

Drug shortages are serious problems. In September, there was a public workshop addressing drug shortages. Douglas Throckmorton, Deputy Director of the FDA's Center for Drug Evaluation and Research (CDER) states,

"Despite the efforts of all the partners in the room, and particularly the FDA, our drug shortages are getting worse and not better."

At this meeting, they urged all of the stakeholders to work together towards a solution. This problem has become so large that:

The FDA acknowledged that drug shortages for 2011 have already surpassed the 178 new shortages of medically necessary drugs in 2010 per Edward Cox, who is part of the four person team that constitutes CDER's Drug Shortage Program.

The FDA also reports that many of these recent shortages involve emergecy medicine drugs, cancer drugs, anesthetics and electrolyes, to name a few.

One proposed solution was suggested by DeWayne Pursley, neonatologist-in-chief at Beth Israel Deaconess Medical Center in Boston,who asked FDA, " to develop a list of critical medications and establish a federal stockpile of them and a fair and equitable method for distributing them. "

It's a bit shocking to even read a statement like that. I mean, I would have thought that a system would have been in place regarding critical medicines. Worse, it's hard to believe that more of these drug shortages are occurring. Dear Son has been on seizure medications since he's been two months old (he'll turn 20 in 10 days) and during that time, there was only one drug shortage. I remember one time there was an issue with Dilantin due to a fire in the warehouse that caused a drug shortage. Other than that, I can't remember any others and yet, in 2011, two of his medications have encountered shortages.

According to this public workshop, drug shortages are occurring for several reasons: Problems with product quality due to manufacturing issues, delay or capacity issues, and contractural obligations of manufacturers to reuse manufacturing lines to make other medications under contract. This problem can result in one manufacturer stopping production on multiple drugs to make drugs under contract.

At a minimum, ASHP's Director of Medication-Use Quality Improvement, Bona Benjamin, urged all involved stakeholders to support the "federal Preserving Access to Life-Saving Medications Act." The purpose of this bill is to require manufacturers to promptly notify the FDA of any manufacturing issues that may result in a shortage and also require them to notify the FDA six months prior to discontinuing any drug. Ironically, while the drugs they may discontinue may be critical or medically necessary, the FDA can't force any manufacturer to continue making a particular drug.

As a result of these shortages, I am shocked to learn that there really aren't any safeguards in place at the present time. Not only are there patients like Dear Son who depend on these drugs, but what about those drugs that would be medically necessary in case of a global disaster?

And finally, if nothing else, you would think that with the focus on saving healthcare costs, that medical safeguards would be put in place to prevent these shortages. After all, when we lack critical or medically necessary drugs, we increase the risk to patients for worse case scenarios which escalate costs. For example, the lack of Scopolamine could cause Dear Son to choke or aspirate, leading to an aspiration pneumonia which would result in a hospitalization. That hospitalization would most likely last a week or so and have billed charges associated of $40-$50k.

If nothing else, the one thing that typically gets people to take action is when the costs outweigh the current process, which is to do nothing. So in this case, what about the dollars that are spent on hospitalizations that occur as a result of a drug shortage? If a person on Medicaid or Medicare sustained a hospitalization that resulted in $40k or more in billed charges, you have to wonder at what point the federal government will step in and say enough is enough and enact a bill to force manufacturers to maintain supplies of critical drugs. Of course, first, they'll have to get a commission together, then do a huge study that will cost millions of dollars only to learn that yes, indeed, drug shortages cost money due to adverse events suffered from the lack of availability of critical medications. In the meantime, I can only hope that this shortage gets resolved so Dear Son and I can get some sleep.

Facebook Halloween Costume Tutorial

2011-10-30T00:39:00.013-05:00

Thank you for all of your comments regarding the cancellation of Dear Son’s Halloween party. I appreciate your support. I will be following up with the Special Education Co-op on this issue next week; my mother was critically ill in the hospital so I was unable to follow up prior to this. As a result, this week, I nixed the elaborate Halloween costume for Dear Son that I was sooooo excited about. It was by far, the most elaborate costume I would have made to date. I was so depressed over that decision; I know it sounds silly but I really do love making these costumes! I hope the decision over the Halloween party will be reversed for next Halloween and perhaps I can do it then.
Although the wheelchair costume was out, I still wanted to create a fun little costume for Halloween so I thought I’d create a costume that any teenager could wear. This costume is fun and so simple.

The beauty of this project is that it’s fairly quick and the foam pieces are the exact same size as the styrofoam piece which makes everything go really smoothly. Essentially, we are making a Facebook costume and the concept is to make the costume look like a book so when your face is inserted, people will put 2 + 2 together and go, “Oh, Face + Book = “Facebook!”.

Here is what you need:

Styrofoam piece
5 foam pieces-3 medium blue, 1 white and 1 light blue (If you can’t find a lighter blue, you can use a felt piece like I did.)
Glue-I used hot glue however a spray glue might work better.

I purchased the styrofoam piece and foam at Michael's.

Here are the steps:

1) Leave the plastic on the Styrofoam.
2) Take a piece of paper and draw a circle around your face.
3) Cut the circle out of the piece of paper and place it around your face to make sure the paper is slightly larger than your face so the Styrofoam piece will sit on your face. Take time to do this step or the costume will be wasted if you cut it wrong.

4) With the plastic still on the styrofoam, take the piece of paper and center it on the lower part of the styrofoam. You’ll want to leave around 2 inches or so on the bottom and just center it in the piece of styrofoam. Basically, what you want to do is to make sure that you have enough left on the bottom and the sides of the styrofoam so it doesn’t break when you cut it or put the costume on. As Norm Abram of, “This Old House” used to say, “Measure twice, cut once”. Thankfully, I learned something after watching 1.5 million episodes of, “This Old House”.
5) With the plastic in place, outline the shape of your face with a pen. You’ll mark this right on the plastic that covers the styrofoam.

6) Place the styrofoam piece on a bamboo cutting board. With the plastic still on, score the plastic/styrofoam with a knife, scissors or exacto knife. Because I am not a crafter, and got rid of any crafting supplies I had when I moved, I used a scissors, lol.
7) Once it’s scored, gently cut through the styrofoam with a knife. I found a knife with a serrated edge worked great for this part. You must take your time though or the styrofoam will break. Leaving the plastic on, helps control all of that styrofoam from getting everywhere; o.k. not totally, but it helps a bit.
8) Remove plastic and cut remainder of the styrofoam.
9) Remove the staples from the foam piece gently so you don’t make impression marks into the foam.
10) Once it’s cut, dust off the styrofoam and cutting board and lay the blue foam piece on the cutting board and place the styrofoam piece over it. I layed the foam piece with the staple holes at the bottom of the styrofoam. Trace the outline of the hole, then cut the foam.
11) Glue the foam on the styrofoam. I used a little bit of hot glue but I think spray glue would work better. With hot glue, you have to make sure you don’t use too much or you’ll melt the foam. Also, you have all of those hot glue strings to remove.
12) Repeat these steps with your other piece of blue foam. The front and back pieces are basically done.

13) Next, we are going to work on the sides of the book. Take a ruler and measure the side of the styrofoam. Take the last blue foam piece and mark the width of the styrofoam with a ruler. The beauty of this project is that the foam piece is the exact same size as the styrofoam so you only make one cut. Cut the foam piece the width of the styrofoam.
14) Before you glue it on, you’ll want to write the “author’s name” on the book. In this case, I used Mark Zuckerberg’s name. I place the last name first, followed by a comma, and then his first name. On the bottom, I made up some numbers, like they have on the library books.

15) Glue the blue piece on the side of the book.

16) Take the white foam pieces and use the same measurements you had for the width of the styrofoam and cut three pieces the length of the foam.

17) Draw lines in blue on the white pieces of foam. These lines are to make it look like they are the pages of a book. Don’t get too complicated here, keep it simple. Three or four lines will do. They don’t even have to be perfectly straight.

18) For the front of the costume, we now need to make the Facebook logo. I used a light blue felt piece but it was hard to cut. In retrospect, I’d use a foam piece instead. It would be much easier to cut and stand out better. I cut out a square on a piece of paper first to make sure I had the size I wanted. Then I place it on the costume to make sure the proportions were what I wanted. Then I placed the square on the felt and cut it.
19) For the letter “f”, I simply wrote it on a sheet of paper first, when I had the size I wanted, I traced it onto the white foam. When you place the “f” on the white foam, flip the “f” over so it’s backwards. That way, when you trace the “f”, your markings for the tracing will be on the back side of the letter “f” and won’t show when you glue it on the blue felt square.
20) Glue the letter “f” on the blue felt square.

21) Glue the blue felt square on the front of the styrofoam.

22) For the back of the costume, I drew a “thumbs up hand” on a piece of paper. Once I liked the size, I traced it on the white foam. Again, turn the drawing over so when you trace the piece, the markings will appear on the “back” of the hand.
23) Glue the “thumbs up hand” on the board.

24) Next, cut a small square of blue felt for the cuff. I place a dot on the cuff but you could get fancy and use a rhinestone sticky piece or even a button. I had neither on hand, so I used a pen.
25) Take a piece of the blue foam (I used the cut out scrap from the face piece.) and place the “thumbs up hand” on it. Above it, write the word, “Like” above the hand.
26) Cut out a square around the “thumbs up hand” and the word, “Like”.
27) Glue the square on the back of the costume.

You are done!

Check out my handsome boy! Here are pics of the completed costume: front, side and back! (Whoops, the back of the costume with the "like" logo is at the top of the post!)

While we are not going out for Halloween, we did have a little fun taking pictures of his costume. It's not the ideal costume for a boy in a wheelchair however it was good to do something instead of doing nothing. Since we live in an apartment, we won't be going Trick or Treating. They did have some Trick or Treating near us on Friday however I am trying to keep Dear Son well and it didn't make much sense to take him out in the cold weather since he's medically fragile.

I hope you enjoyed his Facebook Halloween Costume! We'll be putting it out on Facebook too!

Note: Dear Son is nineteen years old and suffers from seizures, dytonia and severe developmental delay as a result of a random mutation of the ARX gene. In addition, he suffers from a progressive neurological disorder.

No Halloween Party Allowed at School! (Due to Religious Reasons)

2011-10-16T10:26:00.013-05:00

I spent yesterday morning working on Dear Son's Halloween costume. As you may recall, I love making costumes for Dear Son and especially love making costumes using his wheelchair as a prop to bring these costumes from ordinary to "over the top". Last year I wrote this post on how to use the wheelchair to make costumes for kids with special needs and showed you all of his costumes from past years.
Last year, Dear Son was a bed bug and this year's costume was destined to be the best and most creative one I've ever done. I even posted about it in January.

Part of the joy of creating these costumes, is talking about them with Dear Son. Dear Son doesn't speak and let's face it, he can't move much so often times he's lying in bed or sitting in the chair and I talk excitedly about how much fun Halloween will be when he's in his costume and how much everyone is going to like it. He's loves a party and he loves being the center of attention. It doesn't matter if it's his birthday party or whatever, he loves it when I tell him everyone will sing, "Happy Birthday" to him or when I tell him everyone will say, "Great costume Dear Son". He just loves it. When you have a child like Dear Son, 90% of the exitement is the "anticipation" of doing something. Unlike other kids, who are able to get around and do more things on their own or even with their families, these kids can't do anything unless someone helps them. One of my main concerns about his "Make a Wish Trip" was whether we'd ever get there. We talked about it for 5 months and then he got the swine flu the day before we were supposed to leave and was on a ventilator. He was in the hosptial for a month and then it took another 6 months to recover. I worried we'd never get there.
Yesterday was no different. I started construction on the costume and spent the better part of the morning cutting up boxes, taping them together and getting the foundation or structure of the costume together. I was hoping to get the prop part of the costume finished this week and then start on the clothing part next week after I knew what the colors would be of the prop. Since Halloween falls on a Monday this year, I decided to email his teacher to verify the date of the Halloween party since Dear Son only attends school on Tuesday, Wednesday and Fridays due to his health. The doctor won't allow more days since Dear Son can't make it through the day. I was hoping I could get an exception from the doctor to attend school for Halloween and more importantly, I'd have to make bus arrangements one week in advance in order for them to transport him to school. I thought they might have the party on Friday or Monday and thought I should ask. After all, the whole purpose of this costume is for the party. It's not like we would go Trick or Treating. Dear Son has a feeding tube and can't eat by mouth.

Today, I received this response from his teacher:

"We are not having a Halloween party this year because of a religious conflict with another student in our class. We decided that we would have a fall harvest party (no costumes) and winter and spring holiday parties as the public schools do in order to respect those who do not celebrate the Christian Holidays. Sorry about this but we are obligated to remain sensitive to others' religious views. "

I must say I am quite surprised. In my entire life, I have never met anyone who talked about nor celebrated Halloween in any religious fashion. (My point is not that the religious issue isn't valid but more to the point, that in general, most people don't associate it in a religious context and even many Christian churches still allow Halloween parties.) Even if they had a fall harvest party with a costume, would that have been horrible? I mean, shouldn't the fun of all the kids be considered and couldn't they have done that while still being respectful of everyone? And what is typically done at these Halloween parties anyway? Isn't it just food, music, dancing, dressing up in costumes and having a few good laughs while listening to Monster Mash? That's what they did last year and the kids had a great time.

Overall, I am a bit annoyed. As a mother of a special needs child, Halloween isn't always easy. It's hard finding costumes for your kids when they can't do the things other kids can do. It's not easy when they can't walk taking them out for, "Trick or Treating". I can remember many years we never went out Trick or Treating because Dear Son wasn't feeling well or it just didn't make sense to take a disabled kid out in cold, rainy weather to go Trick or Treating when he couldn't eat the candy nor even say, "Trick or Treat". In fact, when Dear Son was growing up, there was only one year I ever took him out in the neighborhood for Halloween. It was the year, he was the Cat in the Hat. I finally got over worrying about what people would think since he couldn't say, "Trick or Treat" or walk and took him out in his wheelchair. I hooked up his communication device to the foot rest on his wheelchair and programmed in my voice to say, "Trick or Treat". Then I had to train him and tell him that we were going Trick or Treating and telling him that he should push the button with his foot (his left foot was the easiest way for him to operate the communication device since he didn't have any use of his arms/hands) to say, "Trick or Treat" and then people would put candy in his pumpkin. I had to get a special hook for his wheelchair to hold the pumpkin since he couldn't hold it and I couldn't push the wheelchair and hold it. We had a ball. Of course, it wasn't easy. He'd hit the button with his foot when we were between houses and then when we'd get to the door, I'd tell him to say, "Trick or Treat" and hit the button and he wouldn't, lol. We did this through the neighborhood. When people would see him, they would comment on how cute he was and he would smile. He loved all of the attention. Then they would put a million pieces of candy in his bucket. I would tell them he couldn't eat it but I swear, most people would put a giant handful of all kinds of candy in his bucket. That was then.

And now, we can't have a Halloween Party because of religious reasons. Really?

Note: Dear Son is nineteen years old and suffers from seizures, dytonia and severe developmental delay as a result of a random mutation of the ARX gene. In addition, he suffers from a progressive neurological disorder.

Medical Emergency

2011-10-13T22:11:00.000-05:00

Photo of Dad and Dear Son. Dear Son has some seizure issues when he changes positions from lying to sitting so Dad sits him on the edge of the bed and holds onto him until Dear Son "gets his bearings". I decided to take this photo of them while we were waiting.

On Tuesday night, we had a medical emergency however in this case, it wasn't Dear Son, it was my Mom. She is currently in a nursing home and had been not been eating for the past week and was very weak, confused and had episodes of vomiting. Her symptons had started about two weeks ago with a fever and then the nursing home inserted a catheter to get a urine sample to see if she had a urinary tract infection (UTI) (Mom has been unable to walk since having plantar fasciitis in February and through medical missteps never recovered. In August, she was diagnosed as having mild dementia. She is in a wheelchair.). The nursing home diagnosed her with a UTI and gave her a 7 day course of antibiotics. Upon completion of that, my Mom seemed to get worse. She had some vomiting, didn't want to eat and was very weak. She was worried that her cancer was back (She had colon cancer 7 years ago and skin cancer.)

Sister sees her daily and had contacted her Cancer Doc and requested a call with Nursing Home Doctor. Nursing Home Doc never returned call from Cancer Doc (it's been over a week) and we pressed Nursing Home to return calls. Nursing Home had said all Mom's labs were fine and they had no explanation for her not eating or vomiting. Sister asked if and when they would repeat labs to confirm the UTI was gone and they told her they would not do it for another 10 days.

During the past 10 days, Mom had three falls at the nursing home. In Fall #1, she slipped off the wheelchair, and Fall #2 and Fall #3 were falls out of bed. They said she did not get hurt and when I questioned my Mom, she said her hip hurt but overall she thought she was o.k.

Her confusion got worse this week. I visited on Monday and she was in the lunchroom so I said I would wait in her room. She forgot I was there or that I even spoke with her. Another family member visited later in the day and Sister came at night to see her. When Sister inquired about visitors that day, she said no one came to see her.

Last night Sister called me in a panic and said she didn't think Mom looked good and wanted to know what she should do. Sister thought she should be evaluated at a hospital but the Nursing Home begged her to wait until Nursing Home Doc arrived, which would be about an hour. Paramedics had been called and Nursing Home asked if they could "clean her up" before they took her to the hospital. When the staff turned Mom over to change her, she screamed out in pain. Sister asked how long that's been going on and they said this was the "first time" she complained of pain. They tried to talk Sister in leaving Mom there until Nursing Home Doc could see her and Sister called me in a panic asking what she should do.

I told Sister to get her to the hospital asap. If she was sick and Sister was that concerned, then she should be evaluated in the ER. Worse case scenario, if nothing was wrong, (remember Nursing Home said all labs were fine) then no harm would be done by having her go to the ER however on the flip side, I thought it would be good for the ER to document some of her isssues, determine the source of her pain, as well as run labs to see where she was at. That way, if she was injured in the falls or whatever, they would find that.

Sister was not able to stay at the Local Hospital so I called my nursing friend to come over and stay with Dear Son so I could go. I wanted to go to provide information and to see what was going on. When I arrived, Sister was there and the CT scan had been doing showing a perforation of some kind. While we were waiting for the results, I noticed my Mom's hands turning dark grey, almost black. I had never seen anything like this and I ran to get some help. The nurse wasn't concerned and thought she'd be o.k. and I told her to get the doctor in immediately. He came in and nearly turned white. He started tapping on her chest, trying to get her to come to and asked for the remaining monitors to be turned on. At that point, her oxygen was 92, which wasn't horrible however we were losing her and the ER Doc said he could not make any promises she would make it.

Tests results came back and the ER Doc said there appeared to be a perforation of some sort however they weren't sure where. He explained that they would most likely need to do exploratory surgery to find out however they wanted to know her Advance Directives first to see if we even wanted to do the surgery. My Mom had made it very clear that she wanted a Do Not Resusitate a few months back and Sister informed the ER Doc she was a DNR. He said once the Surgeon arrived and evaluated her, that we'd have to make a decision with regards to surgery. I said that if something was perforated, that I thought she should have surgery to fix it. I mean, even if a patient is a DNR, in my opinion, it wouldn't be humane to let sepsis set in and for the patient to die. I thought she should have surgery to fix the issue and then see how she was doing after that. Sister wasn't so sure although she was very stressed and does not have much experience in these situations.

Photo of Sister pointing to pus in the catheter.

The Surgeon arrived to review the CT scan and prepare for possible surgery. Prior to that, they put a cateter in and were astounded at the results. Instead of urine, the tube was filled with pus. There was so much in fact, that the Surgeon said he had never, ever seen that much. He was so astonished, that he needed to call in two other doctors.

Photo of pus that drained in the first few minutes of putting in the catheter; this was in the ER.

The Surgeon reviewed the CT scan and then examined my Mom. He said there was no perforation in the GI tract and no perforation in her abdomen; in addition, there was no "free air". The good news was that her belly was reasonably soft (hard is bad). He said he thought her bladder was acting as an abscess and caused the pain. They diagnosed her with Acute Renal Failure, dehydration and admitted her to the Critical Care Unit.

They are treating her with Zosyn, a broad spectrum antibiotic as well as treating her for dehydration. At this point, the infection is quite serious and they can't make any guarantees on her recovery. The good news however is that despite the severity of the infection, her breathing and oxygen saturation were better than they would have expected. She is expected to remain in the CCU for four days or so.

Yesterday, I went to visit her in the morning and there was still pus draining from her bladder. They are astounded there is still pus draining. The urology consult came in yesterday and said that the bladder walls were so inflamed and that she had a, "whopper of an infection". Her kidneys are very impaired and not even operating at 50%. There is a lot of inflammation in her pelvis. At the nursing home, they had been giving her Naprosyn which was not good for the kidneys. The urologist doesn't think there is a tear but the infection is severe. They may be able to do another CT scan in a day or so but have to wait for some of the inflammation to subside. The CT scan they performed on Tuesday was without contrast. At this point, they aren't sure if she'll need surgery or not but if she does, she will be a higher risk because her blood pressure is so low (It was 78/59 yesterday morning.).

Today was better. The white blood cell count is dropping which means the antibiotic is working. Her white blood cell counts were 16. 8 when she came in and are now 11.8 (10 is normal). So far, the blood cultures for sepsis are not growing, which is good. I was unable to see her today since Dear Son doesn't attend school every day (he is only allowed to go three mornings a week) however other family members visited and I'll be able to see her tomorrow when Dear Son goes to school.

At this point, we hope things turn out o.k. This is Nursing Home #2 for my Mom. I had approval in August to get her into a four star nursing home however she was on the waiting list for so long that when the approval came in, she preferred to stay here. The 4 star nursing home has better medical care which is one of the main reasons I preferred it. Needless to say, she will not be returning home to Nursing Home #2 and we will most likely file a complaint against them. We suspect that when Nursing Home #2 inserted a catheter to take the urine sample, that she was infected. Worse, they ignored the infection and she nearly died. Sister made some calls and we should be able to get her in the better nursing home once she is released from the hospital.

All in all, a stressful week. On a better note, Dear Son's seizures had improved a lot. For several weeks he was having terrible seizures and things are much better. He's had some motility issues (he has them related to his gene defect), which caused some bloating and weight gain but those appear to be resolving as well. As a result of the weight gain, he's been getting extremely hard for me to move. While the weight gain is most likely the result of the motility issue, I've decreased his calories to lower his weight.

I hope at some point, life will get a little better overall. I'd really like to live a normal life, without all of these medical issues.

Rehab Equipment Exchange

2011-10-06T21:16:00.009-05:00

Photo of Dear Son's Gait Trainer

I am excited to share with you today a wonderful resource for parents of special needs children. For many years, when Dear Son was younger, I often wanted an extra walker (gait trainer) to help Dear Son learn to walk. While the insurance company was able to assist us in purchasing a walker, it was sent to school where the therapists worked with Dear Son to help him walk. Dear Son was transported to school in a wheelchair and it was too difficult to send the walker to and from school every day on the bus so we ended up leaving the walker at school all the time. While this was great for school, it didn't give us the opportunity to work on walking at home. With the price of the walkers, we weren't able to purchase a second walker for home use. We would have been open to a used walker but with all of the customizations on his equipment, we were hard pressed to even find a walker similar to what he used let alone one with all of the customizations.

From time to time, we would hear of someone that "may" have some equipment we needed but more often than not, it was never a match. But that was then.

This is now....enter Rehab Equipment Exchange. This is a brilliant website devoted to facilitating the exchange of used rehabilitation equipment. On this website, you can buy, sell or donate used equipment, anything from wheelchairs to walkers, assistive technology and just about anything that is used to assist people with disabilities. Think of it as a Craigslist for used equipment.

It works like this. You go to the website and select the type of equipment you are interested in, whether it's pediatric or adult. On the site, you can browse equipment for sale, or place an ad of equipment you are looking for. When you spot an ad that you are interested in, you jot the ad number down and contact the site which is managed by a physical therapist. They send you an email with the other person's contact information and then you can proceed from there.

I had an opportunity to use this site earlier this summer. Prior to moving, I had Dear Son's old gait trainer in my garage. I had a hard time parting with it when I learned he could no longer walk a few years ago. At the time, I wasn't ready to donate it to the school system because it meant that I had to accept the fact that Dear Son would never walk again. You can read about that here. It's been several years since that time and prior to moving, I had checked with school and the Easter Seals to see if they had a need for this gait trainer and they did not. Once I started googling equipment, I came across the Rehab Equipment Exchange website. On the site, I found a lady who was looking for this exact gait trainer for her son. She lived in another state so I got an estimate on the shipping charges and she purchased the gait trainer for a fee and paid for the shipping. It was an exciting time for both of us. I was able to use the money to cover some of our moving expenses for the new apartment and she was able to purchase a walker to help her son walk. What a wonderful feeling to know that Dear Son's gait trainer was going to another young man who had a dream to walk. I cleaned the gait trainer up and shined it as nice as I could. After all, I remember how excited I was when Dear Son began to walk and the gait trainer wasn't just about walking it was about giving hope to another family, hope that their son would be able to walk one day on his own.

After having used this service, I have a few tips:

1) Once you have decided what you want to sell, check your invoice to determine the size and the features for your equipment. In your ad, you'll need to specify the size of the equipment and the features and your invoice is a good place to start.

2) If you don't have your original invoice, go out to other therapy vendors and check out their ads for that equipment. Once you are there, you will see the different sizes, measurements and options for that piece of equipment. Take measurements of your equipment and match it up to the site so you know exactly what size you have and accessories you have so you can place that in your ad. Sometimes, after many years, it may be hard to remember if you purchased the medium, large or extra large of a certain piece of equipment. It's also hard to remember what comes standard and what pieces are additional.

3) Once you have the item, the size and the accessories for your sale item, go to the Rehab Equipment Exchange website and peruse the sale ads. This will give you an idea of the price range for your equipment so you can price it accordingly. I think it's helpful to browse the ads for, "equipment wanted" to see what price people are willing to pay.

4) After you've decided on a price, it would be helpful to get a shipping quote. Make sure to go to Fed Ex or UPS and have your item boxed and weighed so you have an accurate number. For example, I paid $80 to have the gait trainer boxed by UPS. While I could have boxed it myself, I really wasn't certain how to box it properly to keep it from getting damaged in shipment so it was worth it for me to let them box it, even for $80. From there, I had them take exact measurements and weigh the item. Originally, prior to boxing the item, they estimated the shipping charge to be around $100. After they had it boxed, the actual shipping estimate was $200! We had the shipping charges done at Fed Ex and the price was similar. You want to know what your shipping charge will be so you can include it in your ad.

5) Be sure to list the price for the equipment and then the shipping price. In my case, I charged for the item and the shipping but did not charge the customer for the box. You want to make sure that you list both the price and mention that shipping is extra otherwise, you will can take a big hit just on the shipping. When I was on the site, I noticed that most of the equipment and buyers were out of state so that appears to be the norm and not the exception. As a result, shipping charges are important.

6) Don't forget to insure your package.

7) Use Paypal for security purposes. I accepted payment via Paypal and then shipped the item to the customer.

Overall, it was a great experience. I was happy that I was able to sell this item and thrilled that another young man was able to use it. The mother who purchased the item also stated that she would be interested in any other equipment we had for sale. It had been many years since he used this walker and I didn't have any other equipment for sale however you can see that once you have a buyer, they may have an interest in purchasing other equipment from you.

2011-10-05T01:11:00.003-05:00

First, thank you all for your concern. Over the past week, I've received quite a few emails and then some comments inquiring about us. I am sorry for the long delay between postings and a bit embarrassed that I created such concern.

Overall, Dear Son is doing o.k. That being said, it hasn't been particularly easy these past few weeks. Dear Son began having a lot of seizures about three weeks or so ago. He began having multiple seizures a day, with one or two a day, getting quite long anywhere from 10-25 minutes. I kept thinking they would get better and finally called the doctor. Hindsight is always 20/20 in these cases because when I am so tired, it's more difficult to realize that things are out of control until things settle down and I get more sleep. Then I look back and realize how challenging it was for him. The doctor increased one of his medications however right after that, Dear Son had a terrible seizure and I nearly had to call 911. Fortunately, I was able to get it under control with some Diastat (it's a rectal valium for seizures) and then it was shortly after that, another day or so when the increased medication dose took effect and help stopped the many of the seizures. Most days, it got better, but we still had a few days of issues and then he began sleeping entire days and nights. I called the doctor again and he removed all of the increased medication and made another change on Monday.

While this was going on, it has become increasingly hard to move Dear Son. While he can sit up, I still need to roll him over at night which involves a fair amount of effort. I have to lift his hips, then lift his upper body to position him plus position his arms and hands. To be quite honest, I am exhausted. He is well over six feet tall and 200 pounds so he is a big man. It's hard to tell that he is so tall because he doesn't stand however his legs are long, his torso is long and he's got a pretty large amount of muscle for a kid that is unable to walk/stand. It is hard work and I am physically wiped out. I don't like to say anything because I love my Dear Son but he is one handsome, tall, big man, lol but I am probably getting closer to the point where I am going to need additional help now and then to care for him.

The increased seizures meant I was up a lot at night, as in sometimes 10-15 times a night between 1 a.m. and 5 a.m. so that made things tiring hence, no posts. In addition, my Mom is in a nursing home and has had multiple set backs. In February, she went into a nursing home with plantar fasciitis and then became sick. She was horribly sick for a while and then had a difficult time with recovery. During this time, I believe she had a stroke although they did not confirm this. Later in the summer, she had some psych testing done and they confirmed that she has mild dementia (vascular dementia). I've been trying to visit her when Dear Son goes to school so this has taken up some of my free time, which hasn't been much. She has had some additional issues but I won't go into that here.

Most recently, I have been working hard to treat some breathing issues Dear Son is having. He began having some issues on Monday and I treated him with additional coconut oil in the morning and then went to work. I was up at 12:45 a.m. with him and then again at 3:45 a..m. this morning to get his feeding started. When I realized his oxygen saturation was really low (in the 80s), I needed to do a breathing treatment right away and started that at 3:50 a.m. I also gave him some organic coconut oil. I was able to get his oxygen up to 92 and then gave him a second treatment at 6 a.m. before school. He was happy by 6:30 and was able to go to school, have a good day and came home. The nurse at school confirmed that his lungs sounds were clear although she could hear congestion in his upper chest. Everything seemed o.k. until 1 a.m. so I am currently doing another nebulizer treatment to help his breathe a little easier tonight. I'll get to bed when this is done and then get up at 3:45 a.m. to start his g tube feeding before school.

Regarding the organic, virgin coconut oil, I've said quite a few times how well this stuff works for Dear Son. On September 13th, we celebrated one year with no hospitalizations for pneumonia. Prior to using the Now Organic Virgin Coconut Oil, he was hospitalized two to three times a year for pneumonia. Yay Dear Son! About two weeks ago however, the editor (CEO) of a major coconut oil brand, stole my blog content and added it to his website claiming that (his brand) the organic, virgin coconut oil cured paralysis in Dear Son! I happened to find this when I googled for something else. I contacted the editor which turned out to be the CEO of a major coconut oil brand and told him to remove all content, that it was copyright protected and that he had no right to add a sensational and false headline to my content and then print the content with my name on it!!!!!!!!!!!!!!!!!!! The original title of my blog post was something like, "Office Visit Update" and then he wrote a new headline on how the coconut oil cured paralysis in Dear Son and followed it up with my entire blog post and photos of Dear Son! I sent him a terse email and told him to remove the content immediately and also informed him that Dear Son was NEVER paralyzed. He was quite unprofessional about the entire matter. It bothered me that someone would just blatently steal my content and when I told him to remove the content and he told me I should ask him nice. I reminded him that he stole the content. Anyway, so that is why I mention the brand Now Foods with the organic, virgin coconut oil. That is a great brand and the only one that we use. You have to watch out for some of these other unscrupulous companies that will steal content to sell product. Shame on them.

Enough with his medical news, now on to the fun stuff. Halloween is right around the corner and I hopefully will be doing a grand costume for Dear Son. This is probably the most elaborate costume I have ever done and providing things go well, it will be his best costume ever or I won't do it at all. Sketches are complete and the list of things I need for construction is done. I hope to start construction in the next week or so. I have to order a wig for Dear Son and hopefully he'll wear it. On the other hand, I have a few clues for you:

It involves music.

There is a lot of sparkle and glitter involved (Yes, that part scares Dad and I too!)

There will be a wig.

This costume is not on any Halloween website nor is there a wig for this character on any Halloween website.

I chose this costume because this character is sitting down and I thought it would be great in incorporate the wheelchair into the costume.

I'll try to get a little bit better about posting. I haven't had a full night's sleep in nearly three weeks but Dear Son's Dad will take him this weekend so once I get caught up a bit, I should be good. On another note, I am considering converting Dear Sonn over from a commercial formula to making all of his g tube feedings myself. I just started researching it and know I'll need a commercial blender for this but if anyone has any suggestions or has done this, I would be interested in hearing about it. I am going to make an appointment with a nutritionist over the next month or so to begin some discussions. In the meantime, I found a Yahoo group dedicated to those who make their own tube feedings. I also have found a few websites touching on this but none that I am enamored with.

Thank you all again for your concern. It was quite touching.

Studio Apartment Bedroom Makeover

2011-08-25T22:58:00.027-05:00

Now that I have been moved in for a little over two months, I decided to start tackling these painting projects. Once the kitchen was completed, I knew I wanted to start painting the furniture. I must admit, I was a little nervous to paint this chest of drawers since I really liked the hand painting on them but it was also driving me crazy that it didn't match Dear Son's bed. Here is a picture of his room before I painted the chest of drawers.
And here is the after. I am so pleased with the way it turned out.

I actually had two of these dressers in my former apartment. I had one on each side of my king size bed. Here is picture of my master bedroom in my former apartment. I loved the curve on these chest of drawers as well as the hand painting on them. I thought they were very romantic. When I moved to my new apartment however, I didn't have room for both of them in my bedroom so instead of getting rid of one of them, I decided to use one in my master bedroom and one in Dear Son's room. Here is a close up of the painting on the drawers. I removed the drawers and hardware and decided to take a close up of the drawers.

I was very nervous about painting them because I liked them so much. I decided to follow the Just a Girl Blog Furniture Painting instructions. Her furniture always looks amazing. Of course, after reading through the instructions, I changed a few things. First, I cleaned all of my furniture with cleaning products I had on hand. I prefer natural cleaners so that is what I did. Next, I decided to forgo priming the dressers since the color was already dark and I knew I would be painting them black. I went to Home Depot and asked for furniture paint and decided to try Rustoleum's furniture paint which is a low luster formula. If would have helped if I would have taken a picture of the can before I started painting. I painted both dressers black even though I am only posting pictures of the one I used in Dear Son's room. Basically, I forgot to take an after picture showing my whole bed along with the dresser, lol. Here is a picture of the dresser after two coats. I think it turned out great. I should also mention that these dressers were distressed when I purchased them so I didn't attempt to patch anything but instead left them distressed.
Chris's painting instructions were excellent. She used a foam roller and foam brushes which is how I typically paint furniture. The only catch was that these dressers were full of curves making it nearly impossible! No only were the sides of the dressers curved but each drawer was curved as well. Some of the drawers were concave and some were convex! Talk about a nightmare! I had more trouble on the concave drawers but it still turned out nicely.

What made it more challenging was that I had to do all of this very quickly. Dad takes Dear Son on Saturday night so I had to get both of these dressers painted in a little over a day. Since I live in a studio apartment, I had to paint them right in the room. I covered the carpet well and didn't spill any paint.

Because the light (daylight) is behind the dresser, it made it difficult to see the paint job.

I ended up using some silk flowers on his dresser because it was more budget friendly. I still prefer to use a dresser scarf. I always love the crisp, ironed cotton in contrast to the black dresser. I closed the blinds and took some pictures at night to give you a better view of the dresser.

Here is another daytime photo. I love this picture because the flowers are reflected in the mirror.

Another photo.

I was really glad I painted his dresser. The black seems really fresh and makes the whole place feel new.

Here is a photo of Dear Son's bedroom in our old apartment. You may recall, Dear Son's bed is a hospital bed and the headboard and footboard slip over the hospital bed. These are Tendercare Hospital Beds. Click here to view the You Tube Video for Tendercare Beds. Hard to believe his bed is a hospital bed! You can click here to see what Dear Son's hospital bed looked like before we got the Tendercare Beds. I love this bed! You have to admit, if I didn't tell you this was a hospital bed, you probably wouldn't have known it.

The bedding is from Pottery Barn. I chose yellow for Dear Son's bedding for two reasons. First, yellow, white and black is a classic color combination and I thought that looked nice. Second, Dear Son is such a happy young man and was always a happy kid. I think if Dear Son were a color, he would be yellow like the sun because he is always so happy:) I think every kid is a color; you can tell by their personalities. Some kids are orange, some kids are red, etc. Dear Son, he's a yellow for sure.

The mirror is from Pottery Barn as well. The photo over Dear Son's bed is of the Arboretum near our home. I took the picture in the fall when the leaves were changing. Dear Son and I used to go to the Arboretum a lot when he was younger.

One last look. I hope you enjoyed his newly painted dresser! Linking to Just A Girl Show and Share Day.

Summer 2011

2011-08-21T21:24:00.010-05:00

The weather was beautiful so Dear Son and I went out for a nice walk in our neighborhood. This picture was taken on the walking trail which surrounds the golf course and runs along the river.

He's not feeling very well. He's been feeling hot the past two days and I think he was coming down with a pneumonia. His breathing deteriorated last night and I ended up doing a nebulizer treatment around 1 a.m. this morning and then I stayed up until nearly 4 a.m. watching over him. His oxygen saturation had dropped to around 87 or so, which is quite low, so I wasn't sure if we were going to have to take a trip to the ER or not. When he gets sick like that, I never allow myself to go to sleep in case he needs me. Around 4 a.m. though, I felt comfortable enough to lie down but I slept on the sofa near his bed so I could hear him breathe.
I ended up giving him several nebulizer treatments today and gave him one prior to our walk; I also gave him some extra doses of the organic, virgin coconut oil to help get rid of any infection. Usually, he smiles when I take him for a walk. Since his lunch takes three hours via his gtube, I just hook the pump on the wheelchair and take a walk. That way, he can eat and we can get outside. I call this a "picnic lunch".

This is the bridge over the river that runs along the golf course.

I like the perennials that are planted here.

This is the view as we head back home. It's my favorite part of the walk. It always looks different depending on the season. I never get tired of it. I also joined the Arboretum this year, which is located a few miles from our apartment, so I'll be walking the trails more once fall rolls around.

More views. It's so relaxing.

It's nice because you always run into people on the trail.

The picture below is a picture of the new flowers/landscaping they planted this year. We had new owners take over and they removed the fountains and annuals and planted perennials instead. I still miss the fountains however the perennials look nice too.

I removed the particulars on the entrance sign in the photo below. This is the street to our complex.

More pics of the flowers.

I like all of the brick and classic architecture.

This is the view as you turn into the clubhouse. Our clubhouse is gorgeous as is the pool.

One last picture of Dear Son as we head home. He looks pretty tired by now. On a different note, I painted his dresser last weekend so I'll try to post those pics towards the end of the week. I am hoping he'll sleep well and feel better so I can get some sleep. I think he seems better tonight but we'll have to wait and see. It's a little different when you have a child that is medically fragile and severely disabled like Dear Son, versus a normal child that is ambulatory. It's a lot easier to keep kids healthy when they can walk, sit up and eat on their own.

Update: Between the nebulizer treatments and the organic virgin coconut oil, Dear Son recovered just fine and by the time he went to school on Wednesday, the 24th, the nurse said his lungs sounded perfectly clear.

Sneak Peek: Studio Kitchen

2011-08-04T21:04:00.012-05:00

Today we are previewing the kitchen of my studio apartment. At first glance, it looked liked it had the same amount of space as my previous apartment (view that kitchen makeover here)since the number of the cabinets was almost the same however once I got in the space, I learned that some of the cabinets weren't as deep as my prior apartment. Overall, of all the rooms, this one had the most space.
This is how the kitchen looked when I toured the apartment. This apartment was a model for the studio apartment, hence the red accessories. I don't think it was staged particularly well and I certainly don't care for white walls. But here is the before photo with their accessories.

When I moved in, the walls were white of course. White walls = renter, lol. Of course you know that I would not live with white walls for long. Give me 24 hours and a can of paint and they'll be gone. Dad took Dear Son at 7:30 on Saturday night so I got started painting my kitchen. It felt like an episode of Trading Spaces in terms of the time crunch since I only had 24 hours to move everything out, sand the walls, wash the walls, tape them and then paint. It's not a large space just lots of detail since there aren't any full walls. I simply used the same paint that I had in my former apartment. I had some left so it was easy. I did run out though and purchased two little testers to finish it off today.You know that I wouldn't live with walls that weren't totally painted, right?

I really like this color because it's fresh. When I paint a room, especially an apartment, it makes it seem more like a home. I really can't understand people who leave their walls white. Here's another picture of the kitchen as they staged it before I moved in.

And here it is after I painted it. Of course, I like mine better, lol. You know that when I move, I have to paint it white again but really, why live with white walls because of that.

Some people don't know how to pick a paint color so I'll share my secrets for picking a paint color.

1) Figure out a general color that you want. As a general rule, pick a color out of something you already have in the room. For example, if you want to paint the room blue and there is blue in the pillow, try to match that shade of blue, assuming you like it.

2) The absolute simplest way to pick a color is if you like a color that is already in the room, say in the pillow or a rug, take it with you to the store and have it color matched. If the color is not in the room, but say, you have a sweater that you love and you love the color, take that with and have the paint color matched. Home Depot can do this for you.

3) Suppose however that you are selecting a new color and don't have any items to work from meaning there aren't any items in the room in that color. This is easy. So let's say you want to paint your room blue, go to the paint store and pick up as many paint chips as you can in the shade of blue that you think you like. You are not selecting the paint yet, just picking up paint chips. You don't even have to worry about what brand of paint yet, just start by picking up a bunch of swatches. I might go home with some 20 different swatches of blue paint. This means 20 different pieces of paper, some of which will have 5 different shades of blue on them.

4) Now that you are home, you are going to hold these paint swatches up against the wall in the room you want to paint. You are going to do this in broad daylight with the daylight shining in on the wall. At this time, you'll hold them up to the wall. Within 5 minutes, you'll eliminate 90% of the swatches you just brought home. You'll know immediately what colors won't work in your room and you'll toss them.

5) Now then, you'll already have a few you like. Tape those to the wall leaving some space between them. For the next 24 hours, you are going to come and check out those swatches. When you see ones you know you don't like, get rid of it. By this time, you'll be down to 3 or 4 paint colors.

6) You'll want to look at these colors in all different lights. Your favorite color in the daytime, may wash out at night and at night you'll have a different favorite color. It will be interesting to see the color with your lamps on at night versus straight daylight. No worries. Continue the process for 24 hours and look at them and soon you'll pick the color that you liked best during all of the different times of day.

7) Within 24 or 48 hours, you'll have picked the paint color you like best. Now you will take the swatch to the paint store and select your brand of paint and the color. If you like the brand of paint that matches the swatch, fine, if not, purchase the brand of paint you like and have it color matched. Buy as much paint as you'll need up front. One tip is that when you buy the paint, they'll put the formula on the top of the paint can. Tape over the formula with clear tape when you get home and once you are done with the paint, you can keep the lid and you'll know exactly what the paint formula is in case you want more.

This is my own system and one I have used for some 15 years now. I've never regretted any paint color using my own method. If you are really unsure as to where to start with even selecting a general color, look at your wardrobe. What color is the article of clothing that you like to wear or what color is one you get the most compliments on? Another tip is selecting a color similar to a room you've seen in a magazine or online.

Here is a picture of the kitchen showing the flooring.

Probably my favorite part of the entire apartment is the view from the kitchen. I love to cook and look out at the trees. We get a lot of daylight in the apartment which is nice. I also have a nice prep area for cooking.

Here is another view. I used the same chandelier from my former kitchen. Not only is the chandelier pretty but more importantly is the task lighting. I really need task lighting, especially at night for washing dishes or in the winter. Apartments don't come with task lighting which is a shame. If I owned the place, I would have an electrical box (not sure what it's called) installed in the ceiling so I could have overhead lighting without any cords. When I had our home built, I made sure all of the bedrooms had overhead lighting installed. On the down side, I only have a one bowl sink. I think it should be mandatory to have two bowls. I mean really.

My pretty soap container.

Another before picture of the apartment before I moved in.

In this section, I added a shelf so I could store more things. I added these baskets. One stores Dear Son's formula and the other one stores his medications and syringes. It was difficult because we had to install the shelf above the phone jack. If I owned the place, I could remove it. Dad installed all of the shelving for me throughout the apartment. In this case, I just took the shelf I had installed in my previous apartment. Luckily the dimensions were identical even though the kitchens were totally different. Here you can see the shelf. I think it makes it look a lot more modern. I also changed all of the hardware and put on glass knobs. I saved the apartment hardware so I can swap it back when I move.

Since I didn't have a kitchen pantry, I needed to make one. Here is a picture of the other side of the kitchen before I moved in. The door you see is the laundry room but if you look to the side, you'll see the front door and next to that is the foyer closet. One other thing regarding the kitchen was that there wasn't any space for my pretty chalkboard. The light switch and the security system made it impossible to use that wall so I ended up using a large clock that I had instead.

In this photo you can see the foyer closet. Since it's a tiny studio apartment, at only 650 square feet, I needed to utilize every square inch of space efficiently. I couldn't afford the luxury of letting the foyer closet go to waste. I decided to make that into a kitchen pantry instead of using it as a foyer closet.

Here is a picture of the closet before I moved in. It had two shelves plus an electrical box for the security system.

Since I have to return everything to it's original condition when I move out, I decided to leave the two existing shelves and to add adjustable shelving to the remainder of the closet. I used Rubbermaid shelving from Menards and used this shelving system that attaches to the wall. It's quite simple actually. You attach the two rear vertical posts to a horizontal piece and screw all of them into the walls. Once that is done, you simply place the braces on the vertical posts and the shelves where you need them. Of course, I always sketch out a plan on where I'll put things before I ever go to the store. I think this closet cost around $100 to do; I don't remember exactly. The beauty of this system is that when I move, I can remove the posts and take everything with. I installed this system when I did a little girl's playroom a few years ago. Here is a look at the entire closet.

A view of the top shelves. I labeled them so you could see how I used them. Remember, the first two shelves are the existing shelves that were already in the foyer closet.

The lower half of the pantry looks like this. Sorry about the blender but the glass part was in the dishwasher when I took this photo.

So far, the kitchen pantry works really well. Now normally, I wouldn't recommend taking your foyer closet and making it into a pantry however this is a very small space. Also, I had thought out about where I would put our winter coats now that we didn't have a closet. I have a mirror/coat rack that hangs on the wall so we'll use that.

From here on out, there are only minor projects left in the kitchen. I still need to get some paper to line the drawers and a few more accessories but other than that, I am fine with how it looks and functions.

I hope you liked the sneak peek of my studio apartment kitchen.

Studio Apartment Sneak Peek: Master Bedroom

2011-07-27T09:37:00.014-05:00

Today I'll give you a sneak peak at my master bedroom. You might think that living in a 650 square foot studio means you have to "think small" but you would be wrong. I decided to keep my king size bed, along with matching three drawer chests (I use them as nightstands.) along with everything else I loved. In the end, I was able to create my glamourous master bedroom, despite the apartment's small size. I think Ryan Korban, an interior designer, said it best when he was interviewed recently for Decorati's Designer Profile,

"I would love to see people really let go of square footage. For small spaces to exist with large spaces without turning it into a "small" spaces story. Our obsession with size has always confused. I was always concered with good taste not size."

You can read the rest of his article here, titled, "A Return of Romance".

Let's take a look at the floor plan. My master bedroom is called the "sleeping room" in the floor plan. As you may recall, I used the living area to create Dear Son's room.

Here is a photo of the room before I moved in. Not particularly charming. Since the entire apartment was already painted this taupe color, I decided to keep it. That would save me some time in not having to paint the walls and then re-paint them back. Since I just moved in a month or so ago, I wasn't too excited about re-painting since I had to do that in my former apartment. This color was different for me. It's bolder than what I prefer. I love soft, muted colors and this color is a bit deeper and more modern in my opinion. My design preferences lean toward classic and traditional design.

Every room has challenges. Most of the time, they aren't a big deal; you just figure out what they are and work around them. It's kind of like selecting clothes. Each person knows their assets and liabilities and dresses accordingly (hopefully). Rooms are no different. In this room, we have a few challenges. In a small space, some of them become more important than if you had a home because there just aren't any other options for furniture placement. This room is pretty good except for the return air vent located near the floor. That means that you can't place furniture in front of it or it will block the vent. Had they placed this near the ceiling, furniture placement would be better, although it may not look as pretty. In this space, ceiling placement would have been helpful. The room, at only 11 feet wide, meant that I could only use one of my three drawer matching chest of drawers. Since I didn't want to break up a set, I used the other one in Dear Son's room. I ended up having to purchase a piece of furniture for the other side of the bed, but I'll get to that later. The other issue is that of the smoke detector. Does it really need to be right over the bed? I think not.
I would have preferred to have this chandelier over my bed.

So now that you've seen the before, let's get to the "after".

For this room, I wanted to keep my bed, chest of drawers and crystal bedside lamps. I also loved the picture over my bed that I had in my previous bedroom. It had a grayish blue tone to it so I was a bit perplexed at first as to what color I would use in this room. Since I was short on storage space, I also needed to find a place for some things that I loved, namely the Louis XV reproduction mirror, my crystal sconces and my living room lamps. I tried the mirror over the bed however it reflected Dear Son's feeding pump across the room and it was not a pretty view. The only wall I had left was the wall the mirror is on.

I used the drapery rod and drapes from my former living room. I would like to replace them with gold embroidered sheers. I took the living room lamps that I loved and used them behind the sofa for reading lamps.

I kept my crystal scones, that were previously paired with my mirror in the dining room of my former apartment, and placed them on either side of the print. The print is a favorite of mine. I purchased it at Bombay Company many years ago. The print is by Jack Vittriano and is called, "Dance Me to the End of Love". I used the sheets that I already had as well.

Since the other chest of drawers didn't fit on the other side of the bed, I needed to find a table of sorts to hold the lamp. I measured the height of the chest of drawers and then found a small table for the other side of the bed. I needed the height of the tables to be the same so the lamp height would be identical, otherwise, it would look disjointed. I think the new table turned out perfect.

They say that if you buy what you love, it will all go together. Here is a picture of my living room lamps, which I love. Notice how the pattern on the lamp matches the pattern on the bed. The gold color works as well.Even my cat looks great on this bedding. The gold bedding matches his eyes. Of course, he didn't want to open them for the photo, lol.

Let's talk about the bedding a bit. Once I decided to keep the paint color, I wasn't sure what type of bedding that I wanted. What I wanted and what I could afford were two different things. I like Horchow's bedding but most of that was above what I could afford. So, I went with Plan B, and purchased a bed in a bag. I looked online and found some Donna Karan bedding in gold and Barbara Barry bedding in a pastel blue that I really liked, but I fell in love with this gold bedding. I should also mention that when you select colors for your home, you should always select colors that look good on you, for your room. That way, you'll always look good in your home. You'd never buy an outfit in a color that wouldn't look good on you, so why would you put a color that clashes with your skin tone in your home?

In searching for the perfect comforter, I came across what I thought was the perfect one. It was taupe and blue and so glamourous. When I got it home however, there were just too many decorative pillows. It was overwhelming. While it did look nice I just didn't want to remove seven pillows from the bed every night. I'd like to think it was "too much bed for the room", lol. Instead, I found out that some manufacturers now make a bed in the bag with four pieces: two shams, a dust ruffle and a comforter. That was perfect. My new bedding is just that, four pieces. I purchased one decorative pillow for it and I think the room looks just right.

Not only does this comforter look luxurious, but it feels luxurious. I don't think I've ever had a comforter that is this comfortable. If you put your leg or foot on the comforter, it's like placing it on a pillow. It is that incredible. Although this isn't a great picture, I really love the dust ruffle. They did it in a crinkle fabric; I find it very feminine and very glam.

I plan on adding a pair of gold luxe pillows on the sofa to compliment the bedding and make it seem more like one space.

Here the draperies are down. I like adding draperies to a room for softness.

Moving on in the room to storage. If you look closely, you see that I stored all of Dear Son's formula in here, along with some of his changing supplies, namely bed pads and diaper inserts. Can you find them?

They are behind the sofa. I kept a small bookshelf from my previous apartment and decided to try it behind the sofa as a sofa table. I figured if it worked, I would get a real sofa table that is wide enough. This actually works great. A sofa table would be nicer though since it is wider and I could place the lamps a bit further apart which would be more pleasing to the eye.

Here is a peek at what is behind the sofa. I have Dear Son's bed pads (blue) and diaper inserts (top packages) on the left, my tools are in the three drawer pull out bins. On the top shelf in the center is the drawer hardware and any parts that belong to the apartment (I changed out my kitchen hardware for glass knobs so I have to keep the originals and replace them when I move.) In the next two bins on the top shelf are my office supplies. On the bottom shelf are boots and off season shoes.

Small space storage is a bit more compact than regular storage or organizing. Inside the shoe type bins, I simply used plastic bags to sort contents. If I had more space, I'd use three drawer bins or something else. Since I have such a small space, everything must be edited and I keep only what I use. I'll print proper labels later; I've only been in a month and I've had to edit everything. I do have all of my electronics/cords labeled in their plastic bags.

I did the same thing for office supplies.

To the right of the bookshelf is Dear Son's formula. It has to be temperature controlled since it's real food so I couldn't put it in my storage unit since it would be too hot. He is on gtube feeds to I have 6-8 cases of formula to store at any given time. The cat likes to sit on top of it so he has a little blanket that I use on top.

More unglamours photos. I haven't had a chance to do a whole lot yet, with Dear Son home, but I wanted to show you how I used the space to date. Here is the closet for the master bedroom. This is the only closet in the apartment other than the foyer closet and laundry room closet. This closet needs to perform many functions.

Here's how I planned on using it. Prior to moving in, I had to measure out the exact width of hanging space so I knew how much clothes would fit. Remember all of the functions this closet needs to do. It needs to have space for Dear Son's clothes, my clothes, along with all of the stuff in a typical linen closet. I also needed a place for my file cabinet, Dear Son's medical supplies and some home office supplies and books. Small space storage is about maximizing all of your spaces.

I also installed hooks on the side of the closet for Dear Son's hoyer lift and for his Chicago Bears snuggie. I didn't want these items sitting out so I had to find a place for them. I also had to find a place for my vacuum. Tiny spaces equal tiny vacuum cleaners. Don't be fooled though, this vacuum cleaner is amazing!

Moving around the room, you'll see the hooks for Dear Son's sling and snuggie along with a place for my work bag. On the far wall is home office supplies and books.

On the back wall is the file cabinet, some long hanging clothes and moving around the closet, we see the medical bins on the top shelf and Dear Son's hanging clothes. I keep his off season coats elsewhere. Had I not purged his clothes regularly, this move would have been a nightmare trying to edit an entire household in three weeks along with moving my Mom into a nursing home and all of the associated paperwork, plus selling my furniture and everything else.

I edited my clothes and have two bins in storage with clothes I am not using. Not too bad though. I think I did a pretty good job of editing shoes and everything else.

Here are Dear Son's medical bins.

On the right hand side are the supplies from our linen closet, which I showed you previously.

Overall, everything works pretty well. Small space living is pretty easy. It's easy to clean and everything takes less time. The only rule for studio apartment living is that since everything in your home is on display, you have to be diligent about keeping everything neat. I still have some projects to do like painting the chest of drawers black to match the picture frame (and also to match Dear Son's chest of drawers), re-label the bags in the bins, add some gold pillows to the sofa and things like that. Overall, I am very happy with it. I hope you enjoyed a sneak peek at my new bedroom.

Sneak Peek: Studio Apartment Bathroom

2011-07-22T22:28:00.013-05:00

In keeping with the sneak peek of my new studio apartment, I thought I'd show you the bathroom next. The best part about having a small 650 square foot bathroom is that there is only one to clean! Yay! If you are downsizing, perhaps the best tip I can give you is to embrace it. I happen to love small space living however there will always be two ways to look at everything in a small space; the glass is either half full or half empty. If you stay focused on what you are giving up, in terms of space, you will be miserable. Instead, keep the focus on what you are gaining....more time, less to care for, less cleaning, etc. Once you embrace it, you will find yourself never wanting to go back.

That being said, you do need to look at things differently. As a reminder, here is the floor plan. It's a reverse floor plan so my layout would be flipped over.
While I still have a fair amount of projects to do in here, most of the problems with the bathroom are solved. It's pretty much looked like this since day 1. I used most of what I already had. I wanted the space to look elegant, feminine and simple. I think I succeeded.

Here is what the space looked like before.

One advantage was the circular shower curtain. This design gives you more elbow room when you shower but does take up a bit more floor space. I've used it for a month now and love it. I never liked shower doors.

That doesn't mean the bathroom was without problems. There were several in fact. Perhaps the most glaring issue was the toilet paper holder that was located behind the toilet and about six inches from the floor. This would be great if you were 12 inches tall. Not so great to reach behind and below you. Also, paper would then fall onto the floor. Another big issue was the lack of space...no linen closet, no space for a wastebasket, no place for a bathroom scale. These are things you notice once you move in. And no, there wasn't a linen closet outside the bathroom either. And what about all of those mirrors. Do you like wall to wall mirrors in the bathroom?

The first thing I did was to contact the apartment complex and had them put knobs on the cabinet. Next, I went about solving all of these issues. I leaned a picture against the mirror to block part of the mirror. It also gives a pretty focal point when you look into the bathroom.

Next, I installed a new toilet paper holder across from the toilet. There wasn't a lot of room next to the toilet and I thought locating it across from the toilet, would be a bit nicer. I had this nickel toilet paper holder so I decided to use it. You can see it in the photo below.

Moving around the bathroom, I placed this pretty crystal vase with some white silk roses in there. It mimics the roses in the photo. I added a little glass flower vase. The glass and crystal in the room add elegance but visually do not take up much space.

I purchased a glass lotion dispenser for my liquid soap. It holds more soap and because it's built for lotion, it's a bit sturdier.

I added some vinyl letters in a script pattern to add some elegance to the room.

Here is another view. You can see the curved shower curtain, the picture and if you look close, the toilet paper holder near the floor. I keep toilet paper on it just because the white paper draws less attention to it than if it were bare. Because it's an apartment and not my home, I left it there. If I owned this place, I would have removed it and touched up the wall.

Here's a close up of my toilet paper holder. It's by Phylrich. Phylrich makes really nice hardware. It's easy to install, sturdy and beautiful.

One of my projects is to paint this bathroom. Once that is done, I'll line the drawers. For now, let's take a closer look inside the cabinets and drawers to see how I've solved the space problems of no linen closet, no storage space, etc. Here is my medicine cabinet. I tend to keep it fairly simple. In addition, I pay attention to the toxins in health and beauty products so less is more in my opinion. I try to use the Cosmetics Database to research the toxins in each product. I still have some work to do.

Underneath the sink, I kept it simple again. I don't like a lot of stuff. I stored only the products that I need and use every day in here.

On the left side, I store my hair dryer, curlers and hair spray. As a general rule, I try to stay away from plastic storage containers, first because of concerns about BPA and second because plastic is not very "green". In some instances, it works. I like pull out storage bins in the bathroom. If I owned this place, I would put in pull out drawers and not use plastic storage bins. Also, to line the cabinets, I used hand towels. I had recently purchased some hand towels and had a dozen of them. Since I live in a small space, I really only need to use six at any given time so I took the extra ones and used it to line the bottom of the cabinet. When you move you have to make certain all of your cabinets and drawers are totally clean or you are charged for it so I was certain to put something down right away. Once I paint the place, I'll line it properly.

The top bin is for my velcro rollers and the lower bin for my hair dryer.

The hair dryer...

My rollers and hair spray....

On the right side, I store my toilet paper and a sponge and some baking soda for cleaning the sink. I think the sponge looks pretty in my crystal dish, don't you? It makes everything look a bit more elegant. It looks better when I have more toilet paper stored in here but this is how it looked today.

Here's a closer look.

A look at the drawers....the top left drawer holds my coconut oil. I use Now Foods Organic Coconut Oil. It's great as an eye make up remover, a moisturizer, an anti-aging cream (better than anything else you'll ever buy). I also have a few hair bands and other hair supplies like bobby pins and clips for putting my hair up.

In the drawer on the right side, I store my combs and brushes. I use all of these. I got rid of anything I didn't use. I still need to line the drawes but like I said, I'll do that once I select a paint color.

Since there wasn't a linen closet, I used part of the bedroom closet as a linen closet. This one closet has many functions: it's part linen closet, stores my clothes, Dear Son's clothes, Dear Son's supplies, his slings for the hoyer lift and anything else we need. I'll show you the entire closet when I reveal my glamourous bedroom but until then, I'll just focus on the bathroom storage.

Once I moved to this small space, I had to change the way I organized things. In my former apartment, I had my make up organized differently: eye shadow, mascara, lipstick, etc. Due to the space constraints, I only have one bin for make up. There just isn't space to do things differently. I keep the nail polish remover and a nail vase (full of nail implements) in here as well. The tall crystal dish stores q-tips and the smaller crystal dish stores cotton balls. I used to have these on display in my former bathroom but could not display them in this bathroom due to a lack of space. This works fine though.

Beneath that shelf, I have a few other bins. I store Dear Son's battery for his hydraulic bath lift, some first aid products, feminine care products and some sewing/crafts bin. I had to combine all first aid products to save space. Ditto for sewing and crafts. I also have a three drawer pull out bin for nail implements, razors and a travel drawer with items used for travel. I can't say I was wild about combining all of our first aid into one bin however I needed to save space. Prior to moving, I had separated the supplies into various categories.

One tip I can give you regarding small spaces and stuff in general is this. While it's great to get rid of things you don't use, moving to a small space does not mean you need to get rid of everything. Also, while it's great to maximize storage space in a small space, there will also be limits to that storage. You can maximize the storage space but at some point, you may simply need more space. You need to decide how you want to live. I can tell you after living in this small space for almost two months (it's 650 square feet) that I really like it. I definitely think the 850 square feet I had previously was nice and a bit easier to live in since I could separate things like first aid products etc. however I can also tell you that I am so relaxed in this new space. Everything is so easy and takes such little time. I can vacuum the entire apartment in under 4 minutes and it's under 6 minutes by the time I clean the filter and put the vacuum away. You can't beat that. The other thing that is important to remember is why you are moving to a smaller space. They increased my rent in my previous apartment and while I could have moved to a different apartment complex and had the same amount of space, if not more, I chose to downsize to a studio at the same complex, since our complex is so nice. It has walking trails, a gorgeous pool and beautiful landscaping. It's a luxury apartment complex and for me, I enjoy coming home to a pretty space. People tend to associate downsizing with negative connotations...like job loss, etc. Downsizing should be viewed as freedom and easy living. It's important to remember too, that small spaces don't need to be minimalistic. They can be luxurious and glamourous too.

The next shelf is Dear Son's bath supplies. Dad gives him a bath and takes his supplies into the bathroom in this bin. I also bought him a kneezie (it's a sponge that you kneel on when you garden to make it easier to kneel) to use in the bathroom since he has to get on his knees in order to bathe Dear Son due to Dear Son's disabilities. The hydraulic bath lift lowers Dear Son in/out of the water however Dad still has to transfer him from the wheelchair to the bath chair and back again. The black box is haircutting supplies. Dad cuts Dear Son's hair since it's easier than lifting him and taking him to a barber shop.

Since I don't have a formal linen closet, I placed a hand painted three drawer chest outside of my bathroom and use it for towel storage. This used to be in my living room at my former apartment. The second drawer stores my bath towels. Since I live in 650 square feet, you don't need a ton of towels. Six is plenty. You'll find when you downsize, that six is all you need of most anything...anything from dishes to glasses, etc.

I used my label maker to add labels to the drawers. I am the only one that uses the drawers, but still. I like things to look nice and it's so much nicer to open a beautiful chest of drawers to reach for a bath towel. I also like having white towels.

The top drawer stores hand towels and wash clothes. It also stores kitchen towels but that's another day's sneak peek.

And the wash cloths...

Everything is labeled. So much prettier than a standard linen closet, don't you think?

So in summary, I still have a few projects to do:

1) Paint the bathroom.

2) Line the drawers.

3) Re-label bins.

4) Replace hardware with glass knobs.

5) Replace plastic bins in the drawers with glass dishes.

Until then, it's simple, organized....

and beautiful. I hope you enjoyed the sneak peek of my new studio apartment bathroom.

Coming soon....my glamourous bedroom!

Sneak Peek: Dear Son's Room

2011-07-18T22:28:00.017-05:00

Today, I am showing photos of Dear Son's room. Approximately, one month ago we moved to a smaller apartment, a 650 square foot studio apartment to be exact. That is a pretty small space when you are caring for a severely disabled young man who is a bit high maintenance. After all, I have a wheelchair, a hydraulic bath chair, an IV pole, a hoyer lift, a hospital bed and then all of his supplies: 5-8 cases of formula, 200 bed pads, 80-100 diapers plus suction machine supplies, syringes, feeding tubes, oxygen supplies and well, you get the idea. I have rented a small storage unit that is approximately 5 x 4 feet and that has worked well for the bath chair, but everything else I am storing in the apartment. Actually, I leave the wheelchair in the hallway but everything else is here.

As a reminder, here is a copy of the floor plan. It's a reverse floor plan so you need to flip it over to match our space layout. Dear Son's room is actually what is considered the living room on the floor plan. You'll see later in the week, where I put the sofa and how I managed to squeeze a living area into the plan.

Here is a photo of the space before we moved in. What appealed to me about the space was all of the light, the trees and the crown molding. We had it in our other apartment but it still looks nice. I measured all of the rooms and then created a space plan before I moved in. A space plan is nothing more than figuring out where you are going to put your furniture. I created a space plan for the entire floor plan and that helped me identify which furniture I would keep and which furniture I would sell.

One of the first things I did was to place his bed near the wall. Because his hospital bed is an extra long twin and because of the custom headboard and footboard, it's longer and takes up more space leaving less space for wall storage.His nightstand was a bit too small for the new place and I felt a three drawer chest would work better. Here is a photo of his former room at our old apartment.

I had a pair of matching three drawer chests that I had in my former bedroom and I loved them. Instead of getting rid of them and breaking up the set, I used one in Dear Son's room and one in mine. I'd prefer a straight sided three drawer chest however I don't want to get rid of a matching pair of chests. I plan on painting this chest black and adding some chrome handles. House Beautiful showed some boat cleats that looked really nice and they suggested using these as dresser handles although I haven't had time to look elsewhere at drawer hardware.

Since there were three large windows, I had two options that I liked. The first option was more modern; I could add three pieces of molding to the tops of each of the three windows to finish them off. My second option was to soften the windows with drapes. Since I prefer classic, traditional decor, I knew that I'd add draperies. To soften the windows, I used some drapery panels that I purchased from IKEA a few years ago for my tablescaping. IKEA sells each pair for $4.99 so it was less than $10 for drapes for all of the windows. Dear Son's Dad was nice enough to hang the curtain rods and put up all of the shelving in the apartment. Because the space was so small, it was challenging moving around the apartment until everything was installed. That nearly drove me crazy.
I placed the panels between the windows and used a black curtain rod that I already had. I love the way it softens the windows. It's really hard to take a picture of it because there is so much light coming into the room but it looks amazing when you walk in. One of my favorite things is also the trees outside. I can see them from my kitchen when I cook and you can't help but notice them. We can hear the birds singing all the time. It's just lovely.

I took a photo of Dear Son that an artist sketched at our Make a Wish Trip last year and hung it next to the drapes.

You can see more of the trees here. I also used the lamp from our former apartment. I covered the shade myself.

I had to keep Dear Son's Lazy Boy recliner. It's the only chair he can sit in since he can't support himself in a sitting position very well. One of the first things Dear Son does when he gets in the recliner is to use his feet to spin it around so he can look out the window. Last year at this time, he couldn't move his feet or legs at all. Since he's been on the coconut oil, he's regained the use of his feet and legs.

Once I get the dresser painted black and the new hardware put on, I'll take some new photos with some pretty fresh flowers and also put Dear Son's yellow sham on the bed. I was pressed for time so I omitted it in the photos.

I had a full length silver mirror that I purchased from Pottery Barn many years ago that I used in my bedroom. I didn't want to store it since I didn't want it to get broken so Dear Son's Dad suggested I put it over Dear Son's bed. It really reflects a lot of light and once I get the hanging impatients on the patio, it will reflect the flowers in the mirror.

In my former apartment, Dear Son had a small t.v. and I had a larger one in the living room.

For this new space, I decided to move the larger t.v. over near Dear Son since he couldn't see the smaller t.v. very well. He has a vertical gaze palsy making it harder to look up to see the t.v. so this was a better solution. Dear Son's Dad however felt that the t.v. should be wall mounted so he purchased it as a gift for me for my birthday on July 8th. I did strongly suggest that a pampering gift, like a pedicure, would be more exciting to me than a "wall mount" however he really wanted the wall mounted television. I think he wanted this so he could sit in Dear Son's recliner when he was babysitting and watch t.v.:) He was pretty excited about my new gift until I told him that now Dear Son's bedroom looks EXACTLY like a hospital room. I don't think he thought that was funny but seriously, the hospital has a big screen t.v. that is wall mounted, and a recliner, a hospital bed and an IV pole. You be the judge, lol.

The advantage to the wall mount is that you can see this t.v. from various parts of the room. It makes sense once you see where the sofa resides. After living with it for the last week or so, I am glad he installed it. While I don't watch t.v. very much, Dear Son is able to see t.v. much better and he likes it.
Currently, I have a black bookshelf that stores all of Dear Son's changing supplies. I am thinking about installing vertical shelves beneath the television and then storing all of Dear Son's changing supplies in the same baskets that I used in my kitchen. I can't install any shelving with a depth larger than 12 inches and because there is very little room at the end of Dear Son's bed, I'll need to use these longer baskets so I can slide them in/out of the shelves to make it more functional.That gives some continuity to the space. The Container Store has a photo which gives you an idea of what I am thinking about.

Another view of the room.
I think the best part of the room for me is that Dear Son gets to be a part of everything and see all of our visitors. Since he can't sit up for more than two hours at a time, he is in bed a lot. This way, he gets to see everyone versus being in his bedroom. Also, it's nice because we can watch a show together.

I asked Dear Son what his favorite part about the apartment was...he was lying in bed and he looked right out towards his window. He loves looking out the window and since we face east, it's nice and bright. At night, he likes to listen and watch his carousel.

One last look at Dear Son's room.

Sneak Peek of the New Patio

2011-07-15T21:24:00.015-05:00

Photo of my former patio, many years ago.

For the next few posts, I thought I'd show some pictures of my new studio apartment. There is still a lot of work to be done but the basics are complete. I moved in one month ago, downsizing from an 850 square foot apartment to a 650 square foot studio apartment. So far, it's been really nice and I am very happy.

Let's take a look at the floor plan. As you can see the patio is very small, only 8 feet x 5 feet compared to the larger patio that I had many years ago in the photo above.
This is a picture of the patio when I moved in.

This is how it looks now. There is still a lot of work to do. One of the things I like is the french door that goes out to the patio. That is a lot prettier than a standard patio door.

One of the things that I would like to do is to add some hanging impatiens at the top of the grate similar to the ones you see in a former patio (see photo below) that I had many years ago.

When you downsize, often you need to use your furniture in new ways. From this photo, you can see I took Dear Son's nightstand and used it out on the patio. The nightstand/table is the perfect size between the two rocking chairs and there is room on the top to hold a drink of iced tea or something. Also, the bottom door opens up for storage. I am storing magazines (Veranda and House Beautiful) in the drawer. I still have Dear Son's drawer liner in there and will replace that with a pretty pink toile paper once I get the table repainted.In the lower part of the nightstand, I put a basket of my patio garden tools along with some organic potting soil. I'd like to replace the plastic bin with something more natural and more green, like a basket, but for now, it's functional. I kept all of my favorite garden tools and kept only the ones I can use on the patio. I also kept my garden clogs since I still trim my former MIL bushes on occasion. I still need to paint the nightstand white along with repainting both of the rockers white. I was also thinking of adding some pillows for color to the rockers. I love these pillows and originally wanted to purchase them for my living room however now that I've moved, I think they would be perfect for the patio once everything is painted white.One of the things I also wanted to add was some prettiness to the patio. I started with a white ceramic clock, then added an iron bunny that I purchased some ten years ago when I visited the Filoli Garden in California. They are the largest formal garden in the U.S. One of my dreams is to travel and visit all of the beautiful flower and water gardens in the world. I also have a pretty little pot for some impatients. Finally, I added this picture of Dear Son. I took it when he was only four years old and it's one of my favorite pictures. I wasn't certain where I would put it however it just seemed right when I added the pink impatiens.

The apartment complex I live in is considered a luxury apartment complex for the area; it is situated on a golf course along the river. There are rent premiums for the golf course view however I have the back of the property for which there is no premium, lol. I still enjoy a view of all of the trees:) And I get to hear the birds singing very early in the morning. They usually start around 3 a.m. This is the view from my patio.

Another view from the patio.I'd also like to add some hanging flowers on the patio similar to the ones I hung on my former patio (many years ago).

One of my favorite parts of my new patio are these pictures of Dear Son. He was only four years old at the time and it was around 8 a.m. in the morning. He had on his Disney shirt and his new "wide leg" jeans in a size 4 slim. It still makes me laugh because I had the hardest time purchasing clothes for him when he was a little boy because he was so slim. The pictures are also my favorite because they are pictures of my two favorite things: flowers and little boys. I used to tell Dear Son that all the time when he was little. Flowers and children are still my favorite things.

These pictures were taken in front of our house.

Let's take a closer look at these cute pictures. "Four" was a cute year! I took pictures of the single photos from this picture so there is a bit of glare, lol.

So to summarize, I have a lot of projects to do:

Paint rocking chairs and table.

Add pillows to rockers.

Re-line drawer with pink toile paper.

Replace bin with a natural basket.

Add hanging impatients and baskets.

Replace cream monogrammed linen coasters with white ones.

There will always be a lot of projects to do but until then, I'll leave you with a photo of my finished patio from many years ago.

Apartment Kitchen Makeover

2011-07-11T21:47:00.028-05:00

Shortly before I moved, I decided to make over my kitchen. It was the last room to do but I kept putting it off for fear I'd have to move as soon and that is exactly what happened. Regardless, it turned out really pretty. Here is the after photo.

This is what it looked like before, very plain. I really hadn't done anything with it. It was functional and that is about it. It was too much work to paint, since I'd have to re-paint it back to white when I moved, so I never did anything to it.

My first project was to add a kitchen chalkboard. As you may recall, I took a gold mirror I had, removed it, painted the frame white and then painted the back of the mirror with chalkboard paint. That way, if I ever tired of the chalkboard, I could still use it as a mirror.

Here is the mirror before.

And here it is after. I must say, after using this chalkboard for months, that I absolutely loved it. I use it to write notes for Dad, last minute to do items, inspirational sayings, holiday messages and just about everything. If you are making a chlakboard, I would recommend that you do a large one like this one. Anything smaller or shorter, wouldn't work as well.

Next to the mirror, I added some decorative plates. I fell in love with this pattern and had purchased a platter off ebay and then located these saucers on ebay for my kitchen. Here is another photo of my completed kitchen; you can see the matching platter over the stove.

Let's take a closer look. Since it was an apartment kitchen, I was stuck with some ugly things, namely gold hinges on the cabinets, outdated white hardware, old vinyl floors, a wall mounted phone outlet and white appliances from 1995. So my only option was to paint.

Over the stove, I mounted a platter I had that I liked. To fill the space and to add some interest, I added the words, "Bon Appetit!". I sold my microwave and got a Breville Smart Oven. Actually, my sister was nice enough to purchase it for me since she knew I wanted one. I call my Smart Oven, my Easy Bake Oven because it's so easy to use and the clean up is a breeze. Which would you rather clean, a giant oven or a small, easy bake oven. Plus, the oven cooks great! A close up of the platter.

I wanted a vintage type feel to the kitchen, so I replaced the white ball hardware with some glass knobs. With concerns over BPA, toxins and just generally trying to be "green", I tried to use all natural materials for my kitchen makeover. For this makeover, I used a vintage platter and saucers (reused), natural materials like glass for the hardware and then woven baskets. I also reused or repurposed my mirror into a chalkboard. Here is the glass knobs that I used.

I used an antique chandelier that I had and had it rewired into a hanging lamp. That is another way that I stayed "green" so to speak.

Moving around the room, on top of the refrigerator I used a woven basket. I needed a large one to store Dear Son's feeding bags. This basket stores two weeks of bags.

On the left side of the kitchen, is where I keep Dear Son's medicine and formula. The basket on the right, stores his formula and the basket on the left, stores his medicines and syringes. I forgot to take a picture of it before I moved. This is one of the few pictures that I had of this.

I moved into my new apartment so quickly that I didn't realize I didn't have any photos of this side of the room...hence these photos with the oranges, lol.

Here is the before photo. I relocated all of the bins on top of the cabinets to the laundry room by adding more shelving in there.

Here is a pretty after photo. You can also see the pretty glass hardware.

Here is the formula that is stored inside the basket.

Another view...I just love the colors in this kitchen. The soft green walls, the white roses, the white cabinets and the natural baskets.

I also wanted a pretty kitchen. Here I used one of the vases that I got a long time ago when I received some birthday roses. I thought it would be pretty to use to hold kitchen utensils. Not only is it pretty, but no one else will have one like it. I also think it's romantic.

Here is some more detail.

Here I am in my kitchen...o.k., not really, but I do wear my hair like this a lot in the summer. Also, this is how I'd like to look in my kitchen. You have to admit, the apron is very glam. Photo credit: Haute Hostess Aprons...Glam It Up Luxe Apron.

Let's get cooking shall we. In my kitchen, I try not to use unhealthy pots and pans...no teflon, no aluminum, etc. My pots and pans are stainless steel.

My kitchen even looks pretty when I am cooking. I love the stainless steel with the pretty green paint color. Looks very fresh.

I used vintage glass relish trays, that I purchased for $.99, as spoon rests. It completes the vintage feel of the kitchen, plus it's made of glass, a healthy kitchen material.

Aren't they pretty?

One thing I would love to have is this Kitchen Aid mixer. I love the paint color plus this mixer has the internal gears made of metal, not plastic.

Here is a view of the kitchen looking out into my living room. This is the before photo.

And this is the after photo. I used the lamp for task lighting but I was able to replace the lamp with the chandelier for task lighting. On this side of the room, I had a crystal clock, again keeping with the vintage theme. I also used some vintage glass dishes to store yeast and salt for breadmaking. The white sugar bowl is from my fine bone china set; it's Spode Mansard. I love that pattern as much today as when I purchased it. I also think the glass dishes are more interesting than if I purchased a modern set of three matching bowls/dishes. And definitely, much prettier.

One project I wasn't able to get done was to replace the faucet. My sister had a polished nickel faucet with crystal knobs that she had purchased for her home but later changed. Once I decided to move, I didn't change the faucet. Next to the sink, is a soap dish. It's new and it's glass. I purchased some vinyl lettering in a script font to add some elegance to the kitchen. Here is a close up.

A view from the opposite direction.

One other addition was a polished nickel towel bar to hold my dish drying mat. I use, "The Original Dish Drying Mat". It's a microfiber mat that wicks the water away from your dishes allowing them to dry faster.
Here is a close up of the polished nickel towel bar.

To complete my kitchen makeover, I added a monogram to my dust pan. It's the same Edwardian script font that I used for my soap dish and for the "Bon Appetit" lettering. I already had the black and white broom. Who says housework needs to be boring?

Here it is hanging in my laundry room. I loved seeing the monogram when I opened the door.

And that completes my apartment kitchen makeover...
Bon Appetit!

One last look!

Linking to: Delightful Order Inspiring Thursday Party, My Romantic Home Show and Tell Friday, Just a Girl Show and Share Day.

Home from the Hospital

2011-06-27T09:26:00.003-05:00

Dear Son was released from Big Academic Medical Center yesterday. They will treat him as if it were osteomyelitis so he'll be on antibiotics for another four weeks. The antibiotics are given every 8 hours and Dear Son gets all of his other medications every 6 hours so essentially, I'll be giving meds 6 times a day (6 a.m., 8 a.m., noon, 4 p.m., 6 p.m. midnight). The antibiotic needs to be every 8 hours so he can maintain the level in his system so there isn't room for any variation there. Giving meds 6 times a day plus getting up to turn him over at night will be a pretty tough schedule on top of getting up at 3:48 a.m. to start feedings on school days. I'll try to take a picture of Dear Son's foot but he's sleeping right now and I can't get a photo. It looks much better than it did when we went in althought it still varies a bit.

They have told me that it will take weeks for the swelling to go down and for the color to return. In a normal person, it might take 7-10 days however in a person like Dear Son, whose circulatory system is compromised, it will take longer. I wanted to know what symptoms would be a red flag for me so I would know when I need to call someone. They told me I need to call them if for any of these three things: fever, increased redness or increased pain.

We have three follow up appointments scheduled: infectious diseases, orthopedic surgery and pediatric neurology. I think we are covered, lol.

It's good to be home. Today, Dad will come over and I will go out and get the shelving for the laundry room.

Back to the Hospital

2011-06-25T23:07:00.005-05:00

Dear Son's foot never really got any better and we had a follow up visit with neurology this week. Dear Son was released on June 15th and one of the residents had set up a hospital follow up visit with orthopedic surgery on a day that Dad worked so we couldn't make it. Attempts to reschedule were problematic since the clinic dates were on days Dad worked but we eventually agreed on a follow up for July 13th. We had a neurology follow up visit on Wednesday, June 22nd so we agreed that if there was an urgent issue, that neuro could address it.

As I mentioned, Dear Son's foot never improved despite the fact that he was on two antibiotics (Clindamycin and Rocephin) for 10 days. When Dear Son's neurologist saw his foot in clinic on Wednesday, he ordered us to go straight to the hospital for admission. Dear Son's foot would require a 10-14 day dose of IV antibiotics. He called and got Dear Son admitted, then contacted Infectious Diseases and ordered an xray of the foot/ankle and an MRI for Dear Son. The plan was that Ped Neuro Nurse would be present to turn off Dear Son's VNS so they could perform the MRI. She was leaving for vacation on Friday so we had two days to get this done. The neurologist was leaving on vacation for several weeks so he arranged for another Neuro Attending to follow us.

Infectious Diseases was consulted and they reviewed Dear Son's records and performed some basic lab work. They determined that Dear Son had a Methicillin Sensitive Staphylococcus Aureus (MSSA) and not a Methicillin Resistant Staphylococcus Aureus (MRSA). (A simplistic explanation is that MRSA infection is resistant to all methicillin type antibiotics whereas a MSSA is resistant to "some".) When Dear Son was hospitalized at Big Academic Medical Center earlier this month, the Peds and Orthopedic Attendings treated Dear Son's foot infection as a cellulitis caused by MRSA. The antibiotics they prescribed, while correct for a MRSA infection, were not effective for a MSSA. So Infectious Diseases changed the IV antibiotic to Cefazolin and after the first IV dose, Dear Son's foot started looking better. It has since been a bit variable and today looked worse than yesterday.

They did an xray of the foot and ankle and that was normal however they were unable to do an MRI. Dear Son has a Vagus Nerve Stimulator and to perform an MRI, they need to shut off the device (it's implanted under his armpit and has a lead that goes to the vagus nerve) and use a special head coil so that there isn't any injury to him. Apparently, they couldn't use the head coil because the cord wasn't long enough to be able to use the coil and get Dear Son into the MRI machine far enough to perform an MRI of his foot. The purpose of the MRI was to determine if the infection in his foot had gone into the bone. If it did, then his diagnosis would be osteomyelitis (infection of the bone) and not cellulitis. They discussed performing an MRI with a lower magnet setting however they would not be able to get as detailed images so they nixed the MRI.

Instead, they decided to perform a bone scan. With a bone scan, a radioactive tracer is injected into the IV and once it's disseminated, they take images of his foot in three distinct phases. The bone scan came back abnormal and showed increased blood flow to several areas of the foot however the test could not conclude if the infection was in the tissue or in the bone. I saw the images on the scan since I went with Dear Son for the scan and it was quite inflammed. Dear Son enjoyed the bone scan quite a bit though. There were two young female students present for the exam. He nearly strained his neck trying to look back at them since they were behind him on the table. Finally, I asked one of them to come in front so he could see them. He liked the fact they had to hold onto him in the exam, lol.

Because they could not rule out osteomyelitis, they have elected to treat Dear Son with antibiotics for four weeks. The Infectious Disease Attending will come by tomorrow and we'll map out a plan.

As I mentioned in my previous posts, I never felt really confident that they were on the right path when he was hospitalized earlier this month. I even contacted the pediatric neurology social worker (Dear Son's Ped Neuro Doc and Nurse were at a seminar and weren't available that week) and told her that I thought Dear Son needed a consult with Infectious Diseases and asked how we might set that up without stepping on any of the Attendings toes. She had contacted me the next day about that however by that time the Ortho Surgeon Attending had made plans for discharge and he was confident the infection wasn't a blood clot or bone infection, so I didn't pursue it.

I had extensive conversations today with various specialities surrounding a diagnosis of osteomyelitis versus cellulitis. Overall, I was concerend about a few things:

If it were a bone infection, I wanted to know how it was treated-was it treated surgically, via antibiotic therapy or something else? Dear Son is a high surgical risk since there is a risk of respiratory depression from sedation so if a surgery was required, this would present a huge risk. They explained to me that the treatment for osteomyelitis is antibiotics not surgery, unless an abscess is involved.

Another concern was if this infection could spread to other areas of Dear Son's body. Specifically, I was worried about a lung infection since Dear Son can't clear his airways, has risks of aspiration, and because they don't think they can save him anymore if he gets a pneumonia. The response from the docs was that we shouldn't have to worry about the infection spreading since it most likely was contained by the antibiotics. Dear Son doesn't have a fever and isn't terribly sick otherwise, he'd be in the ICU. So the good news is that this doesn't appear to be a concern.

I also needed more information on what healing would look like meaning how I would know if his foot was getting better. They had told me that his foot would take weeks to heal and that it wouldn't look better for several weeks. Since the color, swelling and bruising wouldn't go away, I needed to understand how I would know if things had gotten worse. So let's say we go home, I didn't want to assume the antibiotics were working and then find out the infection had spread. My biggest concern in this case was that I might miss the fact that the infection had spread and then we'd be in a situation that would require surgery or we'd have an infection so severe, they couldn't save Dear Son. Since I didn't have any experience with cellutilis or osteomyelitis, these were questions I had. As a mother, my main concern is that I need to be able to understand when I need to seek treatment for Dear Son and having a foot that won't look better for weeks makes that task harder.

Additional tests. The bone scan summary included a recommendation of an MRI or white blood cell scan to confirm a bone infection. I was interested to see if there was a test to confirm specifically if he had a bone infection or not. We knew they couldn't do the MRI but after some discussion with the docs today, it was suggested that as long as they treat Dear Son for a bone infection with antibiotics for four weeks, that should resolve the issue. We'll have some discussions tomorrow with the Infectious Diseases Attending to see if there is anything else to be done.

They have indicated that they'd be comfortable sending him home with antibiotics via the gtube for four weeks so I suspect we may not be there much longer. I am not certain if they will consult Orthopedic Surgery again on Monday but it appears we are close to resolving this issue.

I just hope everything starts getting better. I am really tired after moving, issues with my Mom and these hospitalizations. I am anxious to settle into our new apartment and relax and most importantly, I hope Dear Son feels better soon.

Some notes of interest...One interesting thing happened last night. Our evening nurse was one that has taken care of Dear Son for years. We were talking and she said that all of the nurses had been talking and that I was considered the favorite patient (well, patient's Mom, lol) on the floor because of the good care and love I have for Dear Son.

The second thing that struck me in the hospital was when I read the bone scan summary. The clinical information on the summary described Dear Son as a "19 year old man"...I couldn't help but think, "What? When did this happen? This is my baby, lol." My how they grow so fast!

And finally, when Dear Son went in for his foot x-ray, the technician said was telling everyone that she remembered Dear Son when he was just a little baby. She's been there some twenty plus years and she's done multiple xrays on Dear Son. It's hard to believe how many of these people remember Dear Son. Even the resident we had in 2009, popped in to see us as well as one of the other techs that was passing by in the hallway. It is wonderful though.

Home

2011-06-17T22:19:00.004-05:00

Dear Son was released from the hospital on Wednesday. They did not perform any surgery on his foot and sent him home on two antibiotics (Clindamycin and Rocephin). I am not confident that they are working and expressed my concern several times at the hospital. The Peds Attending stated that as long as it didn't get worse, the antibiotics were working. I mentioned that he has times where his foot looks worse, more red and hot and they explained that this should not happen since it should not be variable. They had the Orthopedic Surgeon Attending look at his foot and he felt that this was the right course of antibiotics and assured me he did not think it was a blood clot nor did he think it was an infection of the bone. This doc has seen Dear Son in clinic once a year for the past two years so I went along with his recommendation. I don't have any experience with this type of infection.

We have been home for 48 hours and there still is no change in his foot. It is still red, still very swollen and the mark they drew around the infected area has not subsided. We have follow up next week.

On a different note, there were a few highlights of the hospitalization. While it was terribly depressing to be in the hospital, the good news was that Dear Son has been 9 months without a pneumonia and that is really the most important thing. Other highlights include:

Nurses-All of the nurses were great this time. Perhaps the best in 19 years. They all were nice, did their jobs well and were really helpful. Now that Dear Son is 19, it's pretty hard to change his diaper on the hospital bed since the mattress is quite firm. At home, we have a hospital bed with a foam mattress and I can bounce him a bit when I turn him and it makes it easier. At the hospital, it is very hard to turn him and I needed help for every diaper change. They helped me and it was great. At night, he needs to be turned a lot, on average every two hours; it's not only to prevent pressure sores but because he chokes on his saliva when he's on his left side so he needs to be turned fairly quickly. I had asked if they could turn him at night from 12:30 a.m. to 5 a.m. so I could sleep and they did that. Not only did they take care of this along with any diaper changes, they did it quietly and I hardly knew they were there. I even offered to help at 2 a.m. and they said no! So I actually just went back to sleep and let them do that. The one night nurse was fairly short which means it's a lot harder for someone shorter to move a big man like Dear Son and yet she did the best job. She planned it out to turn him at 2 a.m., 4 a.m. and 6 a.m. and did all of them. She had someone to help her but she was great. All of them did a great job but the night nurses had it the hardest. I made sure to thank each of them for their help.

For the ultrasound, we had to take Dear Son to another room. The nurse and I waited while the tech did her job. As she started the ultrasound, Dear Son began to wince in pain. I saw his fists clench and his face grimace. I went over to him and sang softly to him, while holding his hand and stroking his hair. He fell asleep within minutes and the tech did her job and Dear Son didn't feel any more pain. They had explained to me on the first day that his foot would be very painful to the touch, almost like touching an inflammed pimple so I imagine it was quite painful when the tech was pushing on it. In retrospect, they should have offered Dear Son some Tylenol prior to this test to help him with the pain. I am glad I was able to calm him and help him out. It made me smile when I heard him practically snoring once I started singing to him, lol.

For bathing, they had a cleanser that you could apply and leave on the skin or wash off. Of course, I opted to wash it off however I applied it with a soothing, almost massage like quality as I gave Dear Son his sponge bath. He had a big smile on his face and it made the whole thing fun. I really try to elevate ordinary experiences into something special to help make life more enjoyable for him and for myself.

The best part was towards the end of our visit. Every day, there are an endless number of doctors and residents that come to see Dear Son's foot and poke around on it. I could tell Dear Son was feeling more pain the past few days and most of the time he has a pretty high pain threshold. He rarely fusses for blood draws or for pain in general but when he does, I know it's huge. Anyway, he was trying to be brave and not moan or anything when they touched his foot. I told him after the Peds Attending Doctor had left that when any of the doctors touched his foot, that he needed to let them know if it hurt him. I said the only way they will know is if he tells them. Shortly after that the Attending Ortho Surgeon came in; he knows Dear Son since we see him in clinic once a year. Well, when he touched Dear Son's foot, Dear Son made a noise and I told Dear Son that was good that he let the doc know. I told the doc the story and he told Dear Son that was good that he let him know he was in pain. The whole thing just made me smile.

It is good to be home in our new apartment. Overall, I really like it. It's very pretty. Some of the things that I like are my new kitchen that is larger than my former apartment and has more prep space for cooking. Dear Son and I are going to celebrate moving in by baking a cake for my Mom. Dear Son loves to cook and the kitchen is large enough to get his wheelchair in there. Other things I love is the view. We have three windows that look out to a large tree along with all of the trees lining the rear of the property. We hear the birds singing every morning. In addition, I have a small patio with two rocking chairs. I can see my pink impatiens from my bed so that is a real plus. On an organizing note, I managed to get one closet done with closet organizers put in and I'll show those pictures soon. Dad helped thankfully. And yes, the place is very teeny tiny (650 square feet) and while I do think I can make it work, I must say that 850 square feet was a bit more palatable. I have had to sell or donate a few things that I really liked but don't think I'd like to go any smaller. I still have pictures and drapery rods to hang plus lots of furniture painting to do but it's hard when Dear Son's not in school. He doesn't start summer school until July 5th.

On another good note, we are one step closer to getting my Mom into the nursing home of our choice. There was one that I really liked that required a residency waiver as part of the admission process. My Mom lived out of county and this nursing home is in my county. I wrote a letter to the Health and Human Services Board, plus called and emailed all of the county board members and went to the Health and Human Services Committee County Board Meeting. I signed up to speak to present my case. She was approved! Essentially, this nursing home is better than most and gets high marks; what makes it different from the others is that it is funded in part by the county. I toured the place last month and thought it was the best place for my Mom. The nursing home has approved her admission but it will be a few weeks until they have a bed for her. Our whole family is excited and we have all worked hard on the admission.

Thank you for all of the comments and well wishes for Dear Son. He is fairly happy although still in some pain.

Hospitalization

2011-06-13T23:11:00.004-05:00

The move went well and things are slowly getting back to normal. On Saturday morning however, I noticed a 3 x 3 inch spot on the top of Dear Son's foot that seemed unusual. By the afternoon, the red spot had spread, become extremely hot to the touch (even after icing), swelling had increased and brusing appeared on Dear Son's foot. I made a call and was instructed to bring him to the emergency room at Big Academic Medical Center.

We went to the ER and once the Attending Physician saw his foot, he said he would most likely admit Dear Son to the hospital. They started an IV, drew some blood for labs and did a blood culture. He was admitted that evening and started on IV antibiotics.

On Sunday, they continued the IV antibiotics and diagnosed him with Cellulitis, a somewhat common bacterial infection that typically presents through an open cut however Dear Son didn't have any. (All photos were taken on Sunday.)

By the afternoon, around 3:30 p.m. the foot had started to look better however at 5:30 p.m., just two hours later, the redness had spread over his ankle, the bruising had expanded and the swelling had increased. I contacted the Pediatric Attending and they consulted with the Orthopedic Surgeon. The Peds Group started a second IV antibiotic however the foot never improved.

Today, Orthopedics recommeded an ultrasound of his foot. Due to Dear Son's VNS, they opted for an ultrasound versus an MRI. The ultrasound was done to determine if there was pus or fluid beneath the skin. (Typically, for this type of infection, there is fluid or pus or whatever beneath the skin and draining of this fluid helps resolve the infection.) In Dear Son's case however, the ultrasound showed only swelling and no pus or fluid beneath the skin. They came back this afternoon and decided to give another dose of the second IV antibiotic to see if that might help. Tomorrow the Orthopedic Surgeon may do an exploratory surgery to find the source of this infection.

It's really a fluky thing however I am concerned. I do not like the fact that it is not getting better and his foot has now swelling even more and is quite tall. I am also uncomfortable with the bruising since he did not injure his foot in any way. He does not have a fever, which is good however things aren't really improving. We will be there a few more day until they get this figured out and resolved.

Apartment Fire

2011-05-19T10:17:00.006-05:00

I've written many times about the importance of having an emergency information sheet in case of a medical emergency however what happens in case of a fire? Well, today, we found out.

As you know, I am busy preparing for the move to our new apartment. I've been selling furniture, editing some things as well as finding a long term care facility (nursing home) for my mother. Life is extremely busy. I had asked Dad to stop by before work today to help me move a piece of furniture into the garage since I had someone coming to see it today. This was 5:20 a.m. After he left, I took a shower and proceeded to do hair and makeup and was done by 6:15 a.m. My dining room was emptied out and I had all the contents of the armoire ready to be boxed up for moving.

Around 7:15 a.m. or so the fire alarm had gone off. Typically, it's a false alarm. I checked the hallways to see if there was smoke and checked outside but didn't see anything. Dear Son was in bed getting his breakfast via the feeding tube. When the alarm didn't go off, I began to get a little nervous and brought in the wheelchair from the garage. By then, I heard a second set of sirens coming our way so I started to get worried there was a real fire. As I was securing Dear Son with the hoyer lift and into the wheelchair, I heard the firemen knocking on the apartment doors. Then I knew it was probably real. I should probably say too, that getting Dear Son out of bed with the hoyer lift and into the wheelchair takes a little time. It can be very stressful in an emergency since it's not a quick process.

Dear Son was still in his pajamas however I grabbed a blanket to put over him. When I opened the apartment door, the fireman was next door and I asked him which direction I needed to exit. I had to exit left instead of right. I got outside with Dear Son and it wasn't long until the smoke began pouring out of the end unit, next to mine. They broke the windows to get in and hooked up the hose to the fire hydrant. There were a lot of emergency personnel around so I notified the firemen that two little children (under the age of 5-I believe one is 18 months or so and the other is 4) live there and that the father may be sleeping since I thought he worked nights. A short time later someone told me that the children had been taken out however I later learned that was erroneous. About ten minutes later, they had rescued the kids and they were taken to the hospital. Then it got weird. While everyone had evacuated from the building, one of the fireman came over and asked me quietly if the parents were home since they couldn't locate them. I said that I thought the father worked nights and the mother worked days. Unable to locate them, they came back again and asked if I knew where they worked. I did not but suggested they speak with the maintenance man who had access to the corporate office.

As we waited outside, I couldn't help but think about my possessions. I had just moved all of the furniture I wanted to sell to my garage so what was left in my apartment were things I wanted to keep. I was worried those might be destroyed. Actually, I thought to myself that if I did all of that work of moving furniture the night before and then a few hours later, it was destroyed, I'd be peeved, lol.

To make a long story short, no one died. They had to use a ladder to go up to the second floor to help with the fire. Because our apartment complex is fully sprinklered, the fire was contained to just that unit. I have eight sprinklers in my apartment alone. While I was out there, the Fire Prevention Bureau Chief was there and was talking to me. (Not sure why I was so popular out there since the whole apartment complex was there but the firemen kept singling me out.) We talked a bit about the fire and then I asked him some questions about the procedure for notifying 911 that Dear Son was disabled in case of a fire. Typically, there is a form you can fill out online to register with them. This form notifies them that someone needs assistance to get out. Since he was there, I figured I'd ask since it was on my to do list. Currently, I live on the first floor so I wasn't too worried because I have a few exits and I could evaculate Dear Son by carrying him or lifting him out the window if I had to. (Yes, I am a strong Mama:) He told me to contact the EMS Coordinator. You can call them or go online and once you tell them that you have a person who will need assistance, if you ever call 911 or if there is a fire in the complex, a flag will come up in the system as soon as the alarm goes off and they know who needs to be rescued. After the fire was out and everything was said and done, he stopped by my apartment to give me the phone number and website. Since our new studio apartment will be on a higher floor, I needed to make certain that they have Dear Son's information in the system in case we need to be rescued.

Anyway, we were unable to go back into our apartment for over two hours. Dear Son had not had his morning seizure medicines and I was getting worried. They came and asked me if I needed any meds for him and offered to go in and get it for me but stated I was not allowed to enter the building. Luckily, I keep an emergency backpack on Dear Son's wheelchair all the time. Included in the backpack is a day's worth of medicine. I didn't need to go in since I had everything I needed. I left to go over to the clubhouse to give it to him however they gave us approval to return at that time. I was thankful that I had his emergency backpack. In addition, because I had packed his wheelchair for school on Friday (he attends three mornings a week-Tuesday, Wednesday and Fridays), I had extra shirts and pants in the backpack to put on since it was cold outside. While I did have a blanket on him, I put the clothes on his as well. I do keep an extra set of clothes in the emergency backpack too, but it was all a good reminder that we need to be prepared for a fire. While I have kept an emergency backpack for years for Dear Son, I never imagined using it for a fire.

In addition, I went to tour a nursing home for my mother yesterday. Medicare.gov has a nursing home finder and includes the ratings for fire safety. This particular nursing home wasn't fully sprinklered and I had inquired about that on my tour yesterday. The Social Worker had informed me that only the public corridors had sprinklers and the rooms did not. I asked what would happen in the case of a fire. She said they would close the patient's door to the rooms. The rooms have fire doors so they are good for three hours. If a fire were to occur and required evacuation, they would evacuate to the next building laterally (meaning they would go from the second floor of the burning building to the second floor of the attached non burning building). Since the Fire Prevention Bureau Chief was talking to me, I asked him about this to find out if her answers were good in terms of fire safety and if I asked the right question(s).

He stated that a fire door is good for three hours provided there isn't a fire, meaning it's good for heat and smoke for three hours but if there were a real fire, the door wouldn't last the full three hours. In case of a fire, it's doubtful the fire would spread from room to room because fire spreads from the first floor up, not laterally. He said the question to ask is if there is a fire wall between the buildings. If there are two buildings and each building has a separate address, then there is a definite fire wall between them; if not, you need to ask. I always worry about fires and evacuating disabled people in the case of a fire. While I know I could evacuate Dear Son, I had many sleepless nights when my Mom first went into a nursing home wondering who would evacuate her in the case of a fire when you have so many patients in wheelchairs. It's really something to think about. I made a decision for Dear Son a long time ago that I would never, ever leave his side in a fire. Either we get out together or we perish together. There is no other option.

The children in the next apartment were taken to the hospital. I don't know their status. The apartment was boarded up and the tenants can not return until the building has been properly cleaned by a fire clean up crew (meaning a firm that specializes in cleaning every item in your home after a fire). They were not able to remove any items from the apartment at all. The father mumbled that he wasn't certain if he had renter's insurance however I am certain that is unlikely. You are required to provide proof of renter's insurance here any time you sign your lease. I am sure he forgot with the stress of the morning. The people have to check with the landlord to see if they have a place for them to stay or to see if they need to go to a hotel.

In the end, we all need to be prepared for every emergency. For children like Dear Son, we need to make sure we are prepared by having their information on file with the fire department and by having an emergency bag. For nursing homes, you need to look online to see what the reports show and ask appropriate questions.

When I returned to my apartment, I noticed the water had leaked into my closet so everything had to be removed. They came and vacuumed up the water and sprayed a chemical on the carpet to remove the smoky smell. I could still smell some smoke residue all day in the bedroom and closet.

I guess sometimes, when it rains, it pours. I will pray for my neighbors tonight. I am certain they have a lot to be concerned with at this time. The Fire Prevention Bureau Chief stated that had our apartment complex not been fully sprinklered, that this fire would have displaced quite a few families. I am thankful today for our sprinklers. Had I not had an apartment complex with them, it may not have been a good ending.

Update: I read today that the cause of the fire was sparked by candles and incense in a hallway closet that was part of a religious shrine. The open flame was too close to combustable material and investigators determined the cause of the fire was "accidental". The two children were rescued from a bedroom and taken to the hospital and were treated for smoke inhalation and released.

Moving On...

2011-05-14T11:07:00.008-05:00

Photo is of the entrance to the Riverwalk.

In the past few weeks, things have been quite busy. My Mom remains in a rehabilitation facility and has been there for over two months now. Unfortunately, via some medical missteps, it looks like she will not return to independent living. I've been visiting her while Dear Son is at school, and that has taken up a lot of my spare time.

In addition, my apartment lease was coming up for renewal at the end of July. New owners purchased the property last year and are converting it to more of a resort community and therefore have raised the rents significantly. My new rent increased $300 if I took a 12 month lease and would increase $500/month for a month to month lease. Since I couldn't afford a rent increase, I began looking for a new apartment.

My apartment search was unsuccessful, in a way. Due to Dear Son's medical needs, I require a washer/dryer in the unit versus doing laundry outside of the apartment. In our area, only luxury apartments offer this amenity; the rest of the apartments have a general laundry area. In addition, I needed wide, three foot doorways to get him in/out of the apartment, plus plenty of room to get him in/out of the bathroom in a wheelchair. We also loved the riverwalk trail that you see in all of these photos. We walk them some eight months out of the year. I looked at other places but they either didn't meet our needs or were very "apartment" looking, for lack of a better term.

Photo is of the Riverwalk where the new owners cut down the trees. It always makes me sad when I see this. I doubt they consulted an arborist. They wanted to clear the trees to give tenants the view of the river and of the golf course. Unfortunately, there was a lot of wildlife in there.

During this time, I also checked out the Studio Apartment at my current property. It looked too small online to meet our needs but on a whim, I decided to check it out since the rent was close to what I was paying now. It turns out that while it was small, it was wheelchair accessible and met all of our needs. I liked the crown molding and I wouldn't have to give up our pretty riverwalk. I decided I'd rather have an apartment that was smaller and nicer than a larger apartment that wasn't as pretty or more "apartment looking". When I looked at other places, I could find some that were very pretty on the inside but didn't have a walking trail for us. Since we spend a lot of time walking, this was high on my priority list. Our current place had both and it was affordable. On the down side, it is 200 square feet less! I am moving from 850 square feet to 650 square feet with a disabled child in a wheelchair (translated it means he has lots of medical equipment/stuff, lol). On the plus side, with the addition of a small storage unit on the property, my new rent will be $30 more. In the past, they had given me a garage at no charge, to help with Dear Son however I will no longer have a garage.

While that sounds good, I needed to act fast to secure the new apartment. I had a choice of June 1st or June 15th and I chose June 1st since it would be a lot harder moving Dear Son once he is out of school. That means, I need to be ready to move in three weeks!

The new smaller apartment will be a challenge, in terms of space. While I love small space living, this borders a little too small for my taste however I know I can make it work and have it still look great. In these next few weeks, I need to pack, paint and clean my current apartment, plus sell some furniture. I also need to edit a lot of things because there isn't room in the new space for them. That's a lot to do! While I am organized, I needed to draw up a space plan on where everything will reside in the new space. That means, I need to change things around and re-organize items to fit the new space. I am doing all of that before I move.

In addition to doing all of that, plus visiting my Mom and taking care of Dear Son, I need to assist with the transfer of my Mom to a skilled nursing home. We did a Care Meeting this week and she will be discharged in less than two weeks. I found a wonderful organization that will help you navigate the system and help you find facilities called, "A Place for Mom". This website will match you up with an Elder Care Advisor to help facilitate the transition. They are paid by the facilities so there is no cost to you. The advantage is that since they help so many families, they also have a good idea of which facilities people like and don't like. If there are too many complaints regarding a facility, they will not refer you.

Currently, I am working on discharge planning and securing 24/7 care for her so she can return to her home for two weeks after discharge and then transition to a nursing home. That is a lot of change for her so I am working hard to be as understanding and compassionate as I can be to help her with this transition.

All of this has left little time for blogging, however I hope to start blogging regularly now.

Photo is of Dear Son after one of our walking sessions.

Now, onto the new space. Here is the floor plan of our new studio apartment.

Here is a photo of the "sleeping room".

Here is a photo of the other side of the room, which will be where Dear Son's bedroom will be. Due to Dear Son's disabilities, it helps me when I can see him and hear him since he can't move on his own. I know that is probably difficult to understand if you've never taken care of someone who requires round the clock care, but is understandable if you've been in my shoes.

A view of our tiny closet. This is a clothing closet AND it's our linen closet. Imagine that. I guess I will be purging some of my skinny clothes, lol. Only room to keep one size of clothing in there. I don't think I've ever met a woman with only one size in her closet. Have you?

I plan on having the living area in the center of the space. Here is a picture to give you an idea. I'll have the sofa at the end of my bed similar to this photo. In this photo however, the sofa is a bit too wide for the bed. It's pretty nonetheless.

A view of the kitchen with some ugly staging. Really ugly. On the plus side, I'll be taking pictures of my pretty kitchen tonight so hopefully I'll be sharing them with you in a day or so. I'll be painting this kitchen a new color too, changing the hardware, etc. In essence, making it look pretty.

That's all for now. Soon I'll be known as the Queen of Small Space Living. I have a lot of ideas on how to transform the space as well as utilize every nook and cranny. I'll be writing about those too.

Happy Mother's Day!

2011-05-08T11:14:00.004-05:00

Here is wishing all of the mothers a very happy mother's day! Dear Son made this card and these flowers at school for me.

On Wednesday, he came home from school and there was a note from the teacher that Dear Son had made "something special" for "someone special" and that he picked the colors for it. Typically, the way he would choose the colors is that they would present him with two different colors and he would have to select the color he wanted by gazing at it with his eyes or moving his head in the direction of the color. I told him that whoever would get that would be very lucky because he was very good at picking colors, lol. He smiled and was just beaming. I went on and on about what a good color picker he was and how lucky they would be. He loved it all. That my friends, seeing the joy in his face and eyes, was my mother's day gift. As a mother, all I have ever wanted was to see my son happy.

On Friday, he got off the bus, carrying the flowers in his hands. Actually, they were propped in his hands since he can't hold on to them and he was so proud. As he got off the bus, a gust of wind came up and blew them away but I managed to get them.

When we got inside, I oohed and awwed over them and he just beamed. Don't you love it when they do that?

Today, we'll take a walk outside and enjoy the beautiful weather together!

You have to admit, these tissue flowers are really pretty. I think you'll agree he's a great "color picker", lol.

Have a wonderful mother's day!

Happy Easter~Someone Special 2011: Charlotte's Web

2011-04-23T20:40:00.014-05:00

Every year, many of the local Lion’s Clubs in the surrounding area host an annual event called, “Someone Special” where they celebrate the mentally and physically challenged disabled children and adults in the area. The concept is that they are special and in turn, they deserve a “special afternoon where they are comfortable, happy and celebrated for who they are.”

Photo Credit: Drury Lane Theatre

This year, the event would be E.B. White's "Charlotte's Web". The Lions Club has hosted this event for many years now, although we were unable to attend the last few years since Dear Son was often sick. This year they hosted 750 people. I personally love this event for several reasons, the first of course, is the beautiful theatre. If there is one thing I love, it's a gorgeous chandelier.

You have to love such an elegant setting.

It's been a few years since we've been here, but I couldn't help but notice how much Dear Son has grown! Here is a photo from six years ago when he was only 13. He looks so young!

Here he is with the clowns! I don't think he was as impressed with them today.
I think he outgrew the clowns a while back; here he is in 2007, four years ago. He looks like he's ready to cry or something, lol.Even Dad tried to get him to enjoy the clown.
Our next step is off to get the tickets!
From there, we had to wait a bit so we took some pictures. Here I am with Dear Son.And a picture with Dad.

The program for today...Check in and meet the clowns. Check. Enjoy the play. Have lunch in the Grand Ballroom with a special appearance by Ronald McDonald.
Next is off to see the play. Pretty theatre. Of course I took more pictures of the chandeliers. You know I really like them.They cleared out a special section in the rear of the theatre, just for the wheelchair guests. It worked out great. Here is Dear Son waiting for the play to begin.I couldn't help but take a picture of this pretty little girl all dressed up for the event. She was sitting in front of us and when I asked if I could take her picture, she jumped up and twirled around. It was cute.More chandelier photos. Yes, I am obsessed. I love pretty, elegant things.More pics of the kids in wheelchairs in the back of the theatre.Another picture of Dear Son.

After the play, it was off to the Grand Ballroom for lunch. Dear Son really enjoys this part. He likes all of the balloons and all of the people. He liked his pink pig too. They gave all of the kids a pink pig Beanie Baby to go along with the event today.
Here he is at the event in 2005 admiring the balloons. They put a balloon on each chair and then the kids get to keep the balloon when they are done. You can see how much better Dear Son was back then. He looked heathier, was more animated and able to enjoy the day.Finally a little smile. He's looking up at the balloons.
He ended up falling asleep during the meal which was around 11: 20 a.m. or so. One of the men at our table asked why he was sleeping. I guess it's hard for people to understand when kids aren't well. Dear Son isn't able to stay awake for a full day or even half day at this point. He does all he can to be awake and present three mornings a week when he goes to school. He sleeps the entire day after that. Just disease progression.Here is another picture (above) after lunch. He is holding his little pig. If you look closely, you can see his yellow balloon in the mirror. I tied it around his wrist. He really loves playing with balloons. What a difference from four years ago where he was laughing all the time.

More laughter...
Playing with the balloon was short lived. Umm...Dad accidently let it go...
As we were leaving, Ronald McDonald walked by...I mentioned to Dear Son that he was probably going to McDonald's. He thought that was funny. Ah, I can still make him laugh.

A special thanks to the Lions Club for making it such a great day.

Happy Easter!

Klonopin Manufacturing Issue?

2011-04-21T16:15:00.004-05:00

Is anyone having an issue getting Klonopin filled? Our local Walgreen's filled a partial order last month and said they could not fill the remainder of the order due to a "manufacturing issue". They said the problem started with the 2 mg tablets and then patients taking the 2 mg tablets switched over to the 1 mg tablets and now those are gone. In addition, the product was on back order for months and now they will no longer accept Klonopin prescriptions. I contacted them again this month and was told there was a manufacturing issue and it could not be filled. I asked to speak with the pharmacist there and she did not have any other information other than the information from the wholesaler that said it was on backorder. I contacted Osco Drug and they mentioned the same thing.

I contacted our neurologist at Big Academic Medical Center and this is the first he's heard of this issue. (Big Academic Medical Center uses the generic Clonazepam in their formulary.)

I went to Roche and couldn't find any press releases on any issues so I sent them an email and left them a voice mail. I also went to FDA.gov to determine if there were any safety recalls or issues and couldn't find anything. I've done countless google searches and have not found any information.

Interestingly enough, I did find a post where someone mentioned that pharmacies were being pressured by insurance companies to only offer the generic drugs in an effort to reduce their costs.

I am aware that the Klonopin wafer was discontinued however these are Klonopin tablets. We have attempted the generic Clonazepam a few years ago and it was not very effective and Dear Son had an increase in seizures.

Thanks.

Individual Education Plan Follow Up

2011-04-03T20:06:00.013-05:00

Photo of Dear Son and Mr. H (his classroom aide) in the pool at summer school.

Several weeks ago I wrote a series of posts on, "How to Raise a Happy and Healthy Severely Disabled Child". As a follow up to that post, I thought I would share some of the comments that were included in the hard copy of Dear Son's Individual Education Plan (IEP) meeting that I received this week. Dear Son's IEP was in early March and is a meeting where a student's individual education goals are made and shared with the entire team. They also summarize the student's achievement in the past year in several key areas: academic achievement, social/emotional/behavioral functioning, cognitive functioning as well as several other areas. Many of the summaries demonstrate Dear Son's happiness and are a pleasure to read. Some of the comments that made me smile were:

-"He loves being part of the group and is always smiling when other are around."

-"He continues to track voices and activity and especially enjoys it when other students are misbehaving."

-"He enjoys being positioned where he can view the most activity."

-"He is very easy going and "goes with the flow" when the schedule is changed." (A change in routine or schedule is not easy for some disabled children.)

But my favorite comments were given by the Occupational Therapists when she had to list Dear Son's strengths. She wrote:

-"Very engaging and aware of others and his environment."

-"Gets excited about novel and preferred activities."

-"Laughs joyfully."

-"Has preferences and attempts to actively influence situations in the classroom."

-"Can really have a presence in the classroom."

His challenges were the things that he couldn't change such as being dependent for all self care and mobility and limited communication skills.

Overall, I have a nice young man who is happy and is a pleasure to be around. His teacher said that the students and staff really enjoy it when he comes to school and they all wish he could attend daily (he is only able to attend three days a week due to his endurance/medical issues). In addition, he is much like any other teenager, wanting to check out the action and laughing when things go wrong. I love the fact that he is an easygoing young man.

Photo of Dear Son at his classroom graduation party last year.

This IEP summary has been similar to nearly all of the rest of them over the past eighteen years (well, technically, he didn't start school until he was three, lol). While it may be true that some children have issues that even the best care and love can't resolve, I feel good that the hard work that Dad and I have done over the years has paid off. I tell Dear Son every day that I have the "greatest kid in the whole world" and I mean it. But to see things in print, still continues to make my day, even after all of these years.

Note: Dear Son is nineteen years old and attends a day program offered through the school district for developmentally delayed students 18 and older. Dear Son has intractable seizures, dystonia (movement disorder) and is severely developmentally delayed as a result of a random mutation of the ARX gene; he also has a progressive neurological disorder.

Delay

2011-03-09T23:27:00.006-06:00

I am sorry about the delay in postings. My mother is in a rehabilitation facility (physical therapy) and is having several medical issues that are not being addressed properly and without intervention, she could have died. We are still not where we need to be but I met with the Adminstrator today to resolve these. This is proving to be a lot on top of caring for Dear Son. This has been enormously stressful for me. I can honestly say that I have not been this stressed in years. I haven't been able to sleep this week since I have been sick with worry. As a general rule, I am not that type of person but when you know your mother is being neglected and suffering, it's really hard to function. My sister and I are working together on my mother's behalf, which makes it easier.

On a positive note, Dear Son continues to do well. He still has some bad seizures but overall is making some remarkable progress. This week, he was able to raise his chin up when I shaved under his chin. Each time I asked him to lift his chin up, he was able to do it. I was so proud of him and so excited! This has never happened before. In the past, I might ask him to do something and you could see he understood it and wanted to do it but it would take a little while for him to get his body working and then he may only be able to do part of what I asked. Now that he's taking the organic, virgin, coconut oil, he seems to be able to coordinate his mind/body better. I have increased his dose from 1 tsp to 1 tbsp/day and that seems to work better for him.

In addition to moving his chin up, he was able to move his hand out of the way the other day, prior to me lowering the bed rails. Typically, I have to move his hand out of the way, before I lower it. The other day, he moved it out of the way himself. This was huge! I can not explain why this necessarily is working so well for him but only that everything seems to be better. Please note, Dear Son stills sleeps a lot after school and it hasn't changed his diagnosis or anything but he definitely looks better, seems happier and is able to do more things than he has done in the last few years.

IEP(Individual Education Plans): What Should You Do When They No Longer Meet Goals

2011-03-02T21:11:00.004-06:00

Today was Dear Son's IEP (Individual Education Plan) meeting. This is an annual event where the parents, staff (teacher, therapists, district) sit down together and go over progress during the past year and set new goals for the coming year. It can be an exciting time and a time to get involved in your child's education. In the early years, I would start a few weeks prior, creating what I thought were meaningful goals for Dear Son and working with the therapists to create goals that I thought would add real meaning to Dear Son's life. This means goals that would help Dear Son do what he wanted to do.

Over the past few years, Dear Son had numerous hospitalizations and has been diagnosed with a progressive neurological disease. During that time, it was a lot of work for him to be able to come to school at all and just make it through the day. Some days he would sleep at school but it was also good sometimes to get him up for the sake of his lungs, move him around and aspire to a somewhat normal life. During this time, it was also apparent that the old goals of putting Dear Son in a stander to help him get stronger and stand, were no longer "appropriate goals". From there, I had to shift the focus to more of a caretaker or caregiving goals. The staff wasn't quite sure what to make of this in the beginning, since they were used to more formal or traditional goals however as we go into the second year of these "caregiving goals", I think they are infinitely more comfortable with them. These caregiver goals were things that the doctors recommended that we do to keep Dear Son well. Instead of therapy goals, I like to call this, "Dear Son's Wellness Plan". This shifts boths the goals and the mindset to that of preserving health and wellness and doing things that help Dear Son maintain the health he has. For example, I have asked his school nurse to perform the following tasks when he goes to school:

Range of motion on his arms, legs and fingers to preserve mobility and to prevent contractures.
Massages his arms and feet with lotion while he is in his wheelchair; this prevents edema.
Listens to his lungs so I know if they are clear or if he is coming down with something.
Performs chest PT to help keep his lungs clear.
Go to the mat table for more chest PT.
Works on endurance for sitting. They allow him to sit up as long as possible and then move him to the mat table to lie down once he verbalizes it or simply after a set period of time.
Gives him 1/2 can of formula prior to coming home for lunch so he won't be hungry.

I have explained to the group that the two main priorities are: respiratory and leg massage. Since Dear Son can't clear his airway, it's important to perform chest pt daily. At home I use the nebulizer once a day and do chest pt and when he's at school, the nurse performs chest pt. The cardiologist at Big Academic Medical Center recommends leg and foot massage to keep the edema (swelling) down in his legs and feet. I do this daily at home and it makes a big difference. Massaging his feet and legs daily keep the swelling down. Even missing a day makes a difference since you can feel the hardness in his legs. In terms of his throat, when he started getting some congestion, I wasn't clear if it was due to his throat muscles deteriorating and if it was saliva or true congestion so I asked if they could listen to his lungs every day and let me know.

In addition to these things, he participates in the class for morning homeroom and morning exercises. He listens to music and is given sensory items on a tray that he likes to feel and which helps him move his hands. He enjoys things like rice or cooking and mixing things with his hands. These encourage movement. They also use a therapy ball with him and another student to help him continue to move his legs. I talked to them earlier this year about working on his legs and showed him some exercises I was doing with a therapy ball to help keep them moving and active. For a long time, this wasn't working at all, but now, after starting the coconut oil, he seems better able to move and function easier. For his hands, they also have him hold onto musical instruments which he enjoys. All of these things help Dear Son keep some use of his hands.

The school has also offered to help me with any of the tasks that I do at home. It is a lot of work caring for Dear Son 24/7, especially with the medication schedule and giving him medications every six hours as well as starting the early morning feedings plus repositioning him in his bed and turning him over every two hours. Today, we agreed that they would help with his arm splints at school, placing them on his hands/arms. I also asked them about helping me with his oral/motor therapy for speech therapy. Last year's speech therapist created a plan to help him relax his muscles so I could brush his tongue easier. By brushing his tongue and keeping the bacteria at bay, it helps keep him well.

Dear Son also has a bus aide that helps him on the bus. He makes sure that Dear Son has his hat/scarf on when he enters and exits the bus and that he gets on the bus quickly in the cold weather to lessen his exposure to the cold.

Overall, it was a good meeting. By getting everyone involved and having everyone help with his care, Dear Son benefits by getting all of his medical needs met by a variety of people, plus he has fun! His teacher is wonderful and patient. She had Dear Son a few years back so she knows what motivates him. His therapists are working with the nurse to help create meaningful tasks that help Dear Son stay well. They also incorporate his wellness plan into the classroom activities. For example, they talked today on how they do chest pt to the music when they have music therapy in class. This makes it a lot more fun that doing chest pt without music.

Perhaps the most surprising thing at the meeting today was that they told me that Dear Son enjoys sign language. The Social Worker has been introducing sign language to the class. Just words here and there but she hasn't put the words together for a sentence just yet. They say that Dear Son is fascinated with this. Dear Son does not have nor does he have any hearing issues and for all functional purposes, does not have use of his hands. I have to wonder though what he is thinking. I wonder if because he is non-verbal, that perhaps when everyone uses sign language, it may level the playing field. So not only can't he talk, but no one else can. I find it fascinating and wonder what he is thinking. I also love the fact that I found out something new that I didn't know about my lovely Dear Son. Don't you just love it when you find out things about your children that you didn't know?

Overall, it was a great meeting. I feel that Dear Son is getting the best possible care out of his education and that he is in a good spot. I can not emphasize enough how important these tasks are to helping him stay well and I am blessed to have so many people help him achieve these goals.

So in the end, the IEP can be just as valuable when your child has medical needs or has a progressive disease as when they don't. Shifting the focus from goals to wellness still has a positive impact on your child and also helps them be the best they can be. And ultimately, that's the goal of the IEP.

And finally, thank you to everyone for all of the wonderful comments on Dear Son's You Tube video, both on the blog and on Facebook. It was really nice.

Sunday Visitation with Mom

2011-03-01T23:18:00.006-06:00

I walked out into the hallway, past the parade of wheelchairs filled with old, dying women and men, and into the lounge area. The nurse had come into my mother’s room to assist her with the bed pan so I took it as my cue to leave the room. I provide enough care to Dear Son at home and it’s hard to take on any more here. I walked into the lounge and sat at the table, turned off the t.v. that no one was watching, and looked through one of the magazines that had been sitting in the magazine rack. This particular therapy rehabilitation center was better than most, in my opinion, because the smell of urine didn’t permeate your pores when you entered the facility. The staff seemed friendly, nice and respectful of the patients that were there. I must say that even after a few visits to see my mother, I remain somewhat impressed with the facility, despite it’s outdated decorating. No one said a place has to be well decorated to be good but gosh, the shadowboxes of the straw hats with silk flowers around them really dated the place. So that’s where those awful decorated straw hats went.

It was Sunday and one of my two days off for the month. Dad takes Dear Son every other weekend, after he works a full twelve hour day on Saturday, so I get Saturday night, Sunday and then Monday morning to sleep in, sort of, or at least sleep in until I have to get up for work. I had slept in until 7 a.m. on Sunday and came to see my mother in the afternoon. Despite my limited time off, I was looking forward to the visit. No one knows better than me, just how long the days can be, when you are stuck in these facilities. I’ve done enough hospital visits with Dear Son to understand that horrible feeling, as if you are never going home.

What bothers me most about these places are the people in the wheelchairs that sit in the hallways. Most of them are sleeping and look like they are propped up in the chairs to die. I suspect that all of the therapy in the world won’t heal them because the emotional depression will kill them first. The lack of caring on the family members part, is evident in these expressionless bodies. It’s sad really. As I walk down the halls I was reminded of the physical therapy rehabilitation facility that Dear Son went to a few years ago. It was an adult facility that had a small children’s ward or group of rooms. The children’s rooms were located at the end of the hall off the main area. There were electronic codes to access the rooms so that the adult dementia patients or anyone else couldn’t access the children. I spent the whole time there with Dear Son as I normally do, but the part that bothered me the most was the walk down the hallway with all of the wheelchairs lined up. The old men and women littered the hallway so much so that there was barely any space between the chairs. As I would walk down the hall towards Dear Son’s room, a few of the men would yell out at me, trying to get my attention. It was a bit frightening I must say. I guess the first thing that came to my mind that it was more like a scene from , “One Flew Over the Cuckoo’s Nest” than anything else. In reality, these were nothing more than very lonely people, some with dementia I am sure ,but mostly, just lonely people that had been here a very long time. It bothered me that no one came to visit these people, but it bothered me even more that no one came to visit these kids. One of Dear Son’s former classmates was in the room next to ours and her mother never came to visit in the weeks we were there. I wrote about it here, a very long time ago.

This time though, it was Sunday. I was here to see my Mom and was sitting in the lounge. This place also does manicures for the patients and my Mom was the recipient of a manicure and dry shampoo the other day, both of which she loved. She raved about how nice her nails looked and how good her hair felt. As I waited in the lounge for the staff to help my mother with her “business”, I overheard another lady talking to her mother. The lady was mid sixties, I’d say, dressed very elegantly in black from head to toe. Her mother, some twenty plus years older, sat engaged, in a wheelchair. The lady was giving her Mom a manicure and talking to her as they went along. She was telling her Mom about the car she owned, a Jetta, and how she recently got a magazine from them on how to "jazz up" her Jetta. She explained that they had floor mats with the Jetta logo on them and how she wanted the Jetta sunglasses that she spied in the magazine. She went on to say that she showed her son the sunglasses when her son pointed out that they weren’t sunglasses but tailpipes for the Jetta that had white circles around them! With that, I let out a big laugh, since I just couldn’t help myself. After all, it was too funny. The women were cracking up as well and they delighted in the fact that I found it funny as well. At that moment I thought about the mother in the wheelchair and just how rich she was. She was rich because her daughter had taken time out of her day to spend with her. Not just talk to her but to laugh with her, have a real conversation with her and to pamper her. Yes, she was rich compared to the lady sitting outside the lounge area, just eight feet away, who moaned every three seconds and never stopped. Pain, perhaps. Most likely, just lonliness.

About that time, my ten minutes or so was up. That’s about the time it takes the staff and my Mom to do her “business” in the room so I returned. Sister and friend were there and the three of us talked some more keeping my Mom entertained. My sister had made a blanket for her, with cardinals on it, my Mom’s favorite bird. My Mom has been at the facility for nearly a week and every day my sister has come with new flowers for her. Orange tulips on day 2, yellow daffodils on day 3, yellow roses on day 4, pussy willows on day 5, etc. Sister and I had been splitting up the time with my Mom, making sure one of us could be there every day. We sat around talking, having some good laughs and overall trying to keep my mother’s spirits up. I knew only too well, that the time we spent there would not be long enough. After all, when you are in a hospital or any facility day after day, there is nothing you want more than a home cooked meal, to sleep in your own bed and to be in your own home.

After a few hours, I left the facility. As I walked down the hall, I saw the same people sitting along the walls. There weren’t as many in the hallway as there were at the other facility Dear Son was at a few years ago, but still, these were people who were forgotten. True, there were people in the rooms that just as lonely and bored, but the people in the hallway bothered me the most. Bothered me, because I knew that this goes on all over the country. As I waited for the elevator, I couldn’t help but wonder, “What the heck were people doing that they were too busy to visit?” I mean really? There isn’t any time in their day to visit their family? None? I try not to be judgmental but gosh, these are some pretty long days. Is this the best we can do for these people?

As I waited what seemed like an eternity for the elevator, I heard the staff member talking to the patients in the hallway. He was a chipper man doing his best to keep the spirits up at the facility. He was trying to get a response from a woman regarding whether or not she wanted a manicure. She said nothing and sat there motionless in her chair. In desperation, he gave her a choice: he said, "Would you rather be dumped in the river or have a manicure?" The ladies laughed at his good naturedness and I knew at that moment that he was worth every penny that they were paying him. The elevator door opened and with that I left. As I dropped off the visitor pass, I counted my blessings. With that, the wind hit my face and cold, damp air shocked me back into my own world. How blessed I was to be walking outdoors, to go home and have a home cooked meal, and to sleep in my own bed. Rich I’d say, yes, I am rich.

Dear Son "You Tube" Video

2011-02-28T19:33:00.008-06:00

I received the video of Dear Son at school today. I added in the post below but thought people might miss it. The school linked the video via a private account on You Tube so it's only available via the link. Unfortunately, the video is sideways, not sure how to fix that. The good news is that you can see Dear Son in rocking chair, sitting up with his head up, smiling, laughing and moving his feet rocking the rocking chair. You may remember that in many of his photos last year, he couldn't lift his head. Of course, you'll hear the country music in the background, lol. They have his head propped a bit since he needs some support for the back of his head and the back of the rocker isn't quite tall enough. You can see and hear his teacher in the link. This is pretty amazing to me-I never thought he'd regain the use of his feet again. I mentioned previously how well he was doing since I started him on the organic, virgin coconut oil but you can see for yourself what a difference it made. But the best part is that he is really happy. I just love that. I hope you like it too.

http://www.youtube.com/watch?v=khCTr92BA40

As I mentioned here, I felt that coconut oil was helping Dear Son. I had been using it for a few months when I read about a physician, Dr. Mary Newport who started using it to help her husband with Alzheimer’s disease. Recently, she gave an update on the improvements her husband experienced since starting coconut oil in 2009 and how he is doing today, February of 2011. For more information on coconut oil, you can check out these links on Dr. Newport’s website here.

Pretty Tablescape Inspiration, Family Crisis and Dear Son You Tube Video Link!

2011-02-27T22:42:00.011-06:00

It's been a difficult week. About ten days or so ago, my mother was admitted to the hospital for foot pain when she was unable to walk. The diagnosis was Plantar Fasciitis. At the time of admission, she presented with a fever of 102 so they ran some tests and determined she had pneumonia and gave her antibiotics. This was on a Saturday. By Monday, they decided to transition her to a rehabilitation facility for rehab on her foot since she was unable to weight bear, go to the bathroom or take care of herself. She refused and insisted on going home. They set up home healthcare to come the next day and the hospital social worker called me that evening insisting I talk to my siblings and force her to go to rehab.

To make a long story short, they dropped my mother off at home even though she couldn't stand, walk, go the bathroom or take care of herself. I had tried calling her and was unable to get in touch with her for hours. I finally talked to her and she explained that she couldn't move. I couldn't go down to help her since I had Dear Son and don't have a wheelchair van. Well, after my call, since she couldn't stand, she tried to crawl to the bathroom and injured her hand and couldn't get up. She was lying on the floor and couldn't do anything, even answer the phone. When the home healthcare agency didn't get an answer the next day, they called 911 and they came to get her off the floor and put her on the sofa.

After Dear Son went to school, I drove down to her apartment to check on her and arrived ten minutes after 911 had arrived. I was shocked at the condition of my mother. I found my mother sitting in her walker, unable to stand, weight bear and she could barely sit. Her neck was stiff (she had issues with it for a few weeks and had seen her doctor who said it was stress related) and she couldn't move it. She was weak and could barely speak. The phone base was under the end table-she knocked it off when she tried to reach it.

I got her some food and water and asked her when the last time she ate was. She said at the hospital, nearly 24 hours prior. Upon further questioning, she had not been able to go to the bathroom either. She injured her hand trying to crawl to the bathroom and now was unable to use her hand at all. Needless to say, I was upset with the hospital releasing an 84 year old woman who had no way to care for herself. She could easily have died. She had no food or water for 24 hours annd could not access any. She seemed better once she was able to eat and I still had trouble convincing her that she had to go to rehab! All in all, a huge mess. I helped her the best I could then had to leave to get Dear Son. I finally convinced her to go to rehab that night and then called my sister who worked with the social worker and handled it from there. Once she was in rehab, I could finally sleep that night.

Things should have gone better from here on out but didn't. She ended up two days later with the Norovirus that had been going around the facility. In addition, she was diagnosed with pneumonia which the first hospital had diagnosed, then released her and said she didn't have it. Most likely she had it and it got worse when they stopped the antibiotics on Monday. The hand was x-rayed and they said it wasn't broke or sprained and yet it was swollen to twice it's size and purple by Tuesday evening, the day of admission to the rehab (xray was the next day upon my request).

So the bottom line is my Mom is in a rehab facility with a virus, with pneumonia, with a foot issue and can no longer feed herself, hold onto a walker, go to the bathroom and can't even sit up by herself. All in the last ten days. I've been visiting her when Dear Son goes to school and went last night and today.

Anyway, I have a lot on my plate right now so I will take a week or so off from posting. I am very concerned since she is so weak. It is going to be a very long road to recovery at this point. She needs to get over the pneumonia and the virus, get some strength back, have her hand heal then sit up, weight bear and go to the bathroom. At this point, they are attempting therapy however she isn't able to do much being sick. I know from my experience with Dear Son that every day they lie in bed, they get weaker, making recovery less likely. And yes, the first hospital was clearly negligent and there are more details than I can include here.

On a brighter note, I found a few items at Michael's this week and started making a tablescape. I didn't get very far once this all happened but I managed to take a few starting photos. I had hoped to do a "proper" tablescape but it never materialized so this is it for now. Once this gets resolved, I'll have more time to play-I wanted to add a tablecloth, some netting and basically dress the tablescape up properly however I never made it. In the meantime, you can see my inspiration for this table. I found the polka dot jumbo daisies and decided to use them on the plates. I wasn't looking for them of course but when I saw them, they screamed "spring"! For me, these pretty polka dot daisies reminded me of a pretty Easter outfit and black patent leather heels and just basically spring! Anyway, I purchased some black ribbon with white stitching and wrapped them around the Spode Mansard white bone china plates. I topped them with the jumbo daisies. Next, I added a few pops of color with the yellow silk flowers. I doubled layered the place mats, using a silver lame threaded placemat, topped with a black placemat, then layered with a silver metallic charger. My next steps will be a white tablecloth, white netting over the tablecloth with black ribbon ties for the corners so give it some softness. I'll add candles and perhaps some fresh yellow flowers. But here is a picture of it for now.

Kitchen redecorating is nearly done. I got a few of the mail order items in this week so I was excited. I need to get a chandelier rewired and then some new paper for the drawers. I am not sure if I'll have time to take the light fixture in to be rewired right now. I have one other decorative item that should arrive in a few days.

In the meantime, I'll show you the new mongram that arrived this week. I hang my dustpan up on the wall of my laundry room and got tired of looking at the back of a white dustpan every time I opened the door. So I ordered a monogram for the back. At least the dustpan looks pretty with my black and white striped broom (Trying to make cleaning fun, lol.) Anyway, I can't make the ugly apartment vinyl floors look better but at least my dustpan looks good. While I was at it, I ordered some black numbers for my apartment door. I used to have a wreath on it but I felt the whole wreath thing was a bit dated so I opted for a more modern look.

Dear Son is doing pretty good. They took some video at school of him two weeks ago sitting in a rocker and rocking. Once they put it on You Tube, I'll try to share it with you. They are waiting for approval to do so from the school. Dear Son is moving his legs a lot! He even kicked the wall when he was in his bed. I don't think he's been able to move his legs in bed in some four years or so. Typically, he doesn't move them at all, even an inch. In addition, he lifted his right arm up during cooking at school. He hasn't done that in years.

How To Raise a Happy and Healthy Severely Disabled Child-Part III of III

2011-02-17T19:57:00.005-06:00

Section V: Advocacy and Compassion-Perhaps the earliest lesson I learned is learning to put myself into Dear Son’s shoes and doing for him and treating him as I would like to be treated. Sometimes this is harder than it looks because we aren’t used to analyzing every tidbit of our day through someone else’s eyes. Also, because they can’t speak, we often may not be aware that they don’t like something so we have to learn to view every action of the day from their point of view. Once we learn how to do this, we have to teach others to do the same thing. And that is where the advocacy comes in. We help teach others how to treat our children well. A side effect of this is that we also help build our child’s self esteem in that they see us fighting for them which sends the message to them that they are important. That’s a win for all of us!

1) Put yourself in their shoes. When you have a child with multiple disabilities, you have to put yourself in their shoes in every situation, so you know what to do. For example, if you are giving them a bath, you don’t want their back to lean against a cold bathtub. No one likes that. This was probably one of the first things I thought of. The list could go on. In essence, be kind to them. Do unto them as you would like to be cared for. Always ask yourself, how would I like to be treated? Or if they are recommending a medical procedure, ask yourself if you would allow it to be done to you, if not, then decline. Lots of people will recommend things, it’s up to you to be the best advocate and gatekeeper of sorts for your child.

2) Make sure they aren’t hungry. When children can’t feed themselves, you have to pay attention to the number of hours between meals. They have little stomachs so often you can’t let them go some 5-6 hours between meals. It’s easy to forget when they can’t tell you. When they are on gtube feedings, it can be hard too. I know for Dear Son, there are days when he wakes up at 3:30 or 4 a.m. If I’ve tried everything else and he still fusses, I know it’s because he’s hungry (he’s on 1250 calories a day) so I’ll start his feeding. I know if he’s hungry because once I start it, he’ll stop fussing. It’s not often that he wants it started early, but I pay attention to when he does. Another example is earlier this year. On school days, I start Dear Son’s feeding at 3:48 a.m. and it’s done around 6:30 a.m. or so. He goes a half day so he doesn’t leave school until noon and gets home around 12:25 p.m. and doesn’t get lunch started until 12:45 p.m. or so. That’s 6 hours and it was too long! I talked to the nurse at school and we agreed that on school days, she’ll give him ½ can of formula at 11:30 a.m. That way, he has something in his stomach until he gets home and I can feed him his entire lunch.

3) Learn to be an advocate for your child. How does this help your child developmentally? Let me give you an example. I taught a Parent Home Medical Organization (Parent HMO, a Dream Organizer product) class at a local facility for the parent support group. One of the mothers explained that the staff was unable to feed her child at school since the child refused to eat for them. The problem was that the child was difficult to feed however not impossible to feed. The mother had come to school to try to help but in the end, the child refused to eat for the staff the next day. Essentially, the child refused to eat at school, day after day, and would come home at 3:30 p.m., run into the house and devour everything she could. This was not right. The child was so hungry that she had to go to school all day without eating anything. The mother and I talked some more and I explained that she would need to go to the school every day at lunchtime (she didn’t work) and sit with the staff until they were able to feed the child. Sometimes, we have to go out on a limb for our kids. Sometimes, it’s uncomfortable. Sometimes, our kids have a lot of quirks like this little girl who didn’t want anyone to feed her but her Mom. But we have to go to bat and make it easier for our kids. It’s not right that the little girl can’t eat lunch every day. And it’s even harder when we as parents are pushed into the uncomfortable role of being their advocate. It can be really hard to stand up for them and if a person isn’t used to speaking up, even harder. I struggled with this in the beginning too for my own Dear Son. What I learned was that if I changed my perspective from seeing myself as Dear Son’s mother to seeing myself as Dear Son’s advocate, it would be much easier. I would imagine instead that I was paid to be his advocate. When I shifted my thinking to being his advocate, it was much easier to fight for anything for my best client. That helped me a lot. Learn to be your child’s best advocate so they don’t have to be hungry all day or whatever the case may be. Children can’t learn if they are hungry. Give your little ones a chance.

4) Set health goals. It’s easy to go with the flow when you have a special needs child. After all, there are so many appointments. Instead of being reactive, learn to be proactive. Figure out what steps you can take when your child begins having issues and have a plan. Set health goals. For example, my goal for Dear Son is to go one year without hospitalizations for pneumonia. I am working very hard to keep him healthy and well and so far, he has not been hospitalized in six months for pneumonia. I have a distinct plan written out on all of the things that I will do to help prevent pneumonia. In addition, work with your doctor to find out what you need to do. For example, when Dear Son sounds congested, I need a plan for the nebulizer-how often should treatments be performed for example.

5) Let them know that you want the best for them and are rooting for them. I have a few catch phrases that I use and I tell Dear Son all the time. They are:

"Where you go, I go." I tell Dear Son all the time that wherever he goes, I go. I use whatever example there is, meaning if he has to go to the hospital or whatever. What this means is that his Mama will be there to guide things, to speak for him since he can not and to make life easier. He always has a big smile on his face when I tell him this. He knows I will make things easier for him. I often follow this catch phrase by using an example for whatever situation that we’ll be in. He always knows I have his back.

"We go together like peanut butter and jelly." I tell him this as if it were meant to be. We are better together. I want him to know that no matter what happens to him, he will always have a guardian angel at his side and that we were meant to stand together. I want him to have no fear and to understand that he is not a burden but a blessing to me and that together we will conquer it all.

My philosophy is this-I want to be the best mother and the best advocate for Dear Son. I treat him as I would like to be treated, if I were disabled. I treat him as if he were the greatest blessing I would ever receive in life, because he is. When people see how you treat your child and that you want the absolute best for them, one of two things will happen: 1) They will get on board and do the best and right thing for them. 2) They will go out of their way to take care of them. Another funny thing will happen, you will always get great service. People are busy in their jobs today and sometimes they have to cut corners. They don’t cut corners for the kid whose mother will be watching over them and whose mother will make the staff accountable. I am not suggesting that you be an ogre or that you are not courteous in any way, but rather, when people know that you are watching, they treat your child as they should be treated.

Section VI-Life Lessons. These are things that have taken me a while to learn but also allowed me to grow personally.

1) Ask for help. You may be confused as to how asking for help benefits your child. Asking other people helps the child and it helps you. It helps you in that it’s less stress since you don’t have to do everything. Less stress for you equals better sleep, better health and allows you to focus on the most important things. For the child, it’s great because it gives them interaction with many people and that’s good for them. Having a lot of people care for them, help them feel loved and cared for. For example, now that Dear Son is older, it’s a lot of work. Dad helps out by picking up all of Dear Son’s prescriptions, buying wipes, accepting delivery of supplies and picking up anything we need during the week, since I can’t get out of the house with Dear Son. At school, I have the nurse who cares for Dear Son, listen to his lungs each day, so that I know if he’s getting pneumonia. I also have them do other things such as massage his legs and other therapies. I have his bus aide help me with his outerwear (clothing) while on the bus. I have talked to him to make sure that Dear Son has his mittens on and scarf covering his mouth before he gets off the bus; I explained Dear Son’s prior history of pneumonia and how he can’t clear his airways, so now the bus aide, gladly helps. The bus driver, knowing Dear Son’s medical history, pulls up in our apartment driveway so that Dear Son has limited exposure to the cold. People want to help but sometimes you have to explain to them what they can do to help you. Asking for help and accepting help are still the two hardest things for me to do but I am finally learning to do both of them a little more, now that he is older.

2) Be willing to put yourself on the line for them. Ten years ago I made a difficult decision. It was really the only one that I could make however it was by far, the most challenging. Shortly after I got divorced, I decided to sell my house and move to be closer to work. I was having difficulty finding younger workers to come into my home (to babysit) that were reliable and that could take good care of Dear Son. I made the difficult decision to sell my house and move closer to my job. My house sold within days and closed a month later. I wanted to take my time to find a home so I rented an apartment. Six months later, my job ended due to a massive corporate layoff. I interviewed for new jobs however they were too far away and would require that I hire people to come into my home and get Dear Son’s medications and get him off to school and get him off the bus. At that point, his medical needs began to change and I realized that even if I could afford to have staff to do these things, that I would never be comfortable with that. What if they didn’t show up? Then what? What if he didn’t get his medications on time? There were so many variables that I finally gave up and decided to stay home with him and work part time. I took a 95% pay cut to do this. Please understand too, that we just don’t have adequate daycare for severely disabled children. Had I had access to daycare like the majority of working parents of normal children, I may have been able to work full time, but closer to home, but being a single parent, my options were next to none. Sometimes, providing the best care is being there. That is just my opinion so please do what works for you. This is the solution that worked best for us.

And finally, it’s easy to become overwhelmed with the care that is involved in taking care of a severely disabled child. It’s a lot of work. I can remember stories from my mother on how hard my paternal Grandmother worked to take care of seven kids after her husband died when my Dad was only two years old. I don’t ever want people to remember me as a mother who had a burden in life. Instead, I always want to be remembered as the mother whose greatest joy and blessing in life was her son. I want my Dear Son to know that he is and will always be the apple of my eye and I hope I radiate to others that regardless of anything that is going on in my life, that my greatest joy is my Dear Son. When we shift our perspective from burden to blessing, we have the ability to offer our children amazing gifts in life. As you go through life with your child, there will be many opportunities where it will be easy to get discouraged. It will be up to you to be flexible enough to see through opportunities in a different light. And lastly, I always try to remember to look at life through my son’s eyes. I try to see what he sees, feel what he feels. When you do that, your own perspective is widened and you are opened to a tremendous internal growth. When I look at the person I was and look at the person I have become, I wouldn’t trade for a minute the new respect and compassion that I have for others. Seeing the journey of the disabled first hand, through my son’s eyes, have opened my heart in a way that is forever changed.

You can read Part I of the series here; Part I focuses on laying the foundation and getting organized.

You can read Part II of the series here; Part II focuses on building their self esteem, learning to communicate and mothering tips.