Happy Valentine's Day!

Today, we are having a Valentine's Centerpiece Party. Cindy, from "My Romantic Home" is hosting this. Beginning Thursday morning, there will be links from her website to everyone that has created a Valentine's Day centerpiece or February centerpiece.

If you are a Romantic Home Blog reader, thank you for stopping by. I am Dream Mom and I write stories about my seventeen year old severely disabled son, organizing and anything else that is going on in our lives.

Dream Mom's Valentine Centerpiece

About the centerpiece:

• I purchased the red "love" placemats a few weeks ago. The rest of the items were things I had around my apartment.
• The red ceramic container the roses are in, was originally a Christmas gift. It was filled with chocolates and came with a lid. I originally put it in my box for Goodwill donations, however I decided to use it for a vase. I took a cherub Christmas ornament and glued it to the box.
• I love to use white roses in my apartment. I have them in a crystal vase in my living room and in my master bedroom, I have them in a beautiful depression glass bowl on one of my nightstands. For this centerpiece, the roses are silk however real roses could have been used. I much prefer real flowers though.
• The ecru placemat is a vintage hankerchief that my mother used at her wedding. I've had it for many years and could never figure out where to use it. Since I wanted to create a feminine centerpiece, I knew this would be perfect.
• The candles I had since I use them often for dinner.
• As an added touch, I hung two cherubs ornaments with crystals from the chandelier.

I had hope to create a "Flickr badge" to make it look more professional. I worked on that for quite a while but could not figure out how to get it working. I created the sets, linked it to the blog, but ran into problems connecting it to the groups. I confess to being technically challenged however the Flickr directions could be improved! Finally, I deleted it since I didn't have more time. Sigh.

Thank you Cindy for doing this. It was a pleasure to take time last weekend to be creative and put this together! Click here to return to the "My Romantic Home" blog to view more centerpieces.

The Bed

I was kind of surprised when I read her post. The bed, that she described so eloquently, provided exactly the function as my own. She wrote,

“…little did i know of the many days i'd lay on it overwhelmed by life's circumstances, physically drained from caring for my daughter disabled with cp, and alone, as a single woman, a single parent disabled by rheumatoid arthritis and obesity. This is a mahogany four poster bed with pineapple finials topping each post. It is a huge bed sometimes shared by my oldest daughter where she empties her heart to me, tells me how much i mean to her, and where we giggle and laugh together about silly inane things.”

Of all of the things that I own, my bed, in it’s king size glory, provides the most comfort. I had purchased the mattress right after my divorce. It seemed like a good feng shui kind of thing to do, I mean, a bed would signal a new beginning. I had purchased the mattress, when I still had the corporate job. I went to a higher end retailer and checked out all of the mattresses. Instead of looking at any of them by price, I decided to find the one that was the most comfortable. Once I did that, then I would check out the price tag to make sure I could afford it. I selected a luxury mattress, for it’s firm support, eight way hand tied construction and over a thousand coils for back support. The luxury mattress did not disappoint. I added a featherbed on top of the mattress and then some luxurious sheets. It was and still is the most comfortable bed I have ever slept in. Little did I know the bed would provide me with more than a good night’s sleep in the years to come.

About a year after purchasing the bed, my job ended along with some seven hundred others at our company. The bed, would become my haven, soothing my tired ego when I couldn’t find a job. Little did I know that once I did find a job, I wouldn’t be able to work since there wasn’t any daycare to be had, for someone like Dear Son. I was then back at square one.

Over the years, my bed would comfort me when I would lie there from exhaustion. I remember when Dear Son was younger, prior to the VNS (Vagus Nerve Stimulator), he would have seizures all day and night. I would try to keep my eyes open but at some point, they would refuse. At that point, my eyes would have to defer judgment to my hands. It was there that I would hold Dear Son’s hands, his chunky fingers in stark contrast to his reed thin body, and when they would shake violently, I knew he was having a seizure and I would wake up and attend to him. If it weren’t for the big bed, I couldn’t have done that.

A few years after that, I remember my bed providing the support I needed, when my spirit was depressed. Between caring for Dear Son and missing the income of a full time job due to a lack of daycare for the disabled, my heart was heavy wondering if life would ever get better again. I missed working and I missed having money. People would say that the Lord doesn’t give you more than you could handle however I remember praying one night, that he would make it easier for me, since I could no longer handle all of the hardships. Within the next two weeks, things changed and some good things happened. But it was my bed that carried me through.

I remember too the days and weeks after my back surgery. I had to sleep in my living room chair in the months up until the surgery, because the pain down my leg was so severe. In the chair, there was one position, that if I sat perfectly upright and perfectly still, the pain would lessen. After the surgery, I would lie on my bed and be thankful that I had such a good mattress. It made my recovery go faster.

Today, my bed still provides much comfort. Caring for Dear Son is a twenty four hour a day job and to do it well takes a lot. Owning a business on top of that and keeping everything clean and organized, can be a lot some days. Most of the time, I am looking forward to my free night, every other weekend, when I get twenty four hours of uninterrupted time. I retire early, mainly from exhaustion. To be able to sleep and not have to get up to give medications, to start a feeding pump, to change a diaper or to roll Dear Son over is a blessing. It’s not that I don’t love him, because I do, but everyone needs a good night’s sleep in order to continue to provide a high level of care. On those weekends, I always sleep in, getting up at 7 a.m. and going on-line and then retiring back to bed for a few more hours. My cat knows the routine all too well. Sometimes, I’ll even watch t.v. in bed since to be able to lie there and do nothing is the ultimate luxury.

So reading that this mother of a special needs child would find comfort when life was overwhelming and be comforted when she was physically drained, made me realize the importance my own bed had become in my life. Her description was perfect and I wondered how many other mothers of special needs children felt the same way. We are so blessed to have these children in our lives and I’d never be able to function without my beautiful Dear Son. But our beds, well, they are our back up. They are the Plan B. They are our support when we have no one else and nothing left to give. They are a place to restore our tired feet and souls so we could get up another day and take care of our children who love and need us so much. As for the other mother of a disabled child, I am sure we are part of some secret underground club, where the password is “sleep”.

Dream Mom Blog Enhancements!

You may have noticed several changes over the weekend to my blog. I’d like to take a minute to tell you about them.

New Template! By now, you have noticed the new green template. I was forced to change the template this weekend in order to take advantage of some new blogger features.

Wikio Universal RSS Feed! On the top right hand corner of my blog, you will notice a “subscribe” button. This button allows you to add my blog to whatever RSS feed (news aggregator) that you use. In simple terms, any time I write a new post or update my blog, you will be notified or get the new post on your RSS feed. Once you click on it, several choices for the RSS feed will come up.

More On This Topic! On the right side bar of my blog, you will notice a heading called, “More On This Topic” that has links to some of my previous posts and other posts on related topics. This is a result of a new feature to my site called, “Pluck on Demand”.

In 2006, I received an invitation from Pluck Corporation to become part of BlogBurst, the world’s largest blog syndication network. Recently, Pluck Corporation introduced a new product called, “Pluck on Demand” which uses simple widgets imbedded in my site, to bring you related articles, videos, and blog posts from leading sources. When you click on a related headline link on my blog, a new page is generated within my blog where the full article, post, or video can be viewed. These articles are pre-packaged with display and video advertising which can earn the publisher and myself revenue. This is not unlike the Google ads, which earn the blog publisher revenue. To date, I have not earned any revenue from this blog, so that would be nice. (I have no idea what that means, in dollar amounts, but with Google ads, the amounts were marginal.)

My blog, “Dream Mom” was selected as a beta for this new product. To add Pluck on Demand, required that I do a few things. The first was to update my blog to a new template. The new template included upgraded layouts and HTML code which allowed me to add the widgets. Adding the widgets required a blank post called, “Related Content”, which you saw on Saturday. In the background of that page, was the code required to do that. Now when I write a post, other posts, articles, video and ads will appear under the heading, “More On This Topic”. I have no control over that content and the content may or may not change when I write a post since it matches on content.

New Links! I updated the links section to include some new blogs that I like. Some of my favorites include: My Romantic Home, Hillbilly Housewife (love that name!), Productivity 501, Unclutterer and TenderCare Beds. Cindy writes My Romantic Home and never ceases to amaze me with all of the projects she does to make her home more beautiful. She takes flea market finds and makes them into treasures. She takes exceptional photos and it is truly a pleasure to visit her blog to see what kinds of things she has for us every day. Her home has been featured on HGTV's "Rate My Space". Susanne from the Hillbilly Housewife has a recipes section on her blog that is pretty good. She takes time to explain cooking terms which is helpful for a novice like me. Productivity 501 is an excellent blog that is vastly underrated. There are so many great articles and content that I can't say enough good things about it. One of my favorite blogs is, "Unclutterer". It's a blog that discusses things related to organizing. Of course, I would love that. It's a great place for us "born organized" folks to hang out and comment on our organizing systems. There are also all of the old favorites from Fat Doctor (who recently adopted a little girl) to Poppy Q, the world's most beautiful cat! I hope you enjoy some of the new reads!

Additional Content! Finally, you’ll be seeing some new content from me this year. While I adore Dear Son, I don’t have enough stories to fill all of my posts. I will continue to write stories about him but will also expand my postings to include other topics that are of interest to me and hopefully to you, but also posts that are timely to a publisher. An example of this post, would be the previous one with regards to, “Best Things About a Recession”. I've been quite busy with work related projects this week so I'll try to be a bit better about adding more moving forward.

Thank you for all of your support. I hope you will enjoy the new content.

BEST THINGS ABOUT A RECESSION

It’s pretty interesting to see the changes people are making in light of the recession. People are spending less, reassessing their priorities, working harder to keep the jobs they have and basically having to chose, some for the first time, between luxuries and necessities. It is interesting too, what one person defines as a luxury, is another person’s necessity.

In many ways, I am able to sit back and feel fairly calm these days. I learned many of these lessons and had to make many choices several years ago, when I too was the victim of a massive corporate layoff during the last recession in 2001. The difference was, that a lack of any kind of daycare for severely disabled children like Dear Son, meant that my corporate life was essentially over. In the meantime, I learned many lessons. There are many things that I wouldn’t change, even if I were to return to work full time. I have come to enjoy many of these changes. Instead of focusing and listing everything I lost, I thought it might be interesting to focus on what I gained. I thought it might be interesting to share them with others who are going through similar times. So here goes:

Photo of my kitchen at my former house.

LEARN TO COOK One of the first lessons I learned was that I could no longer spend a lot of money at the grocery store. I also learned that the easiest way to stretch a dollar was to cook everything from scratch. Sure I could have used some coupons, but most of the coupons are really for processed foods. At that time, I scaled my grocery bill down to $40 a week, for Dear Son and I. That meant processed or convenience foods of any kind were out of the question. Over half was for fruits and vegetables and the rest was staples to make everything else. I began to watch the Food Network to learn how to cook. I watched it religiously for six months, trying out tons of new recipes from nearly every chef. I soon learned which ones I liked best. Once I did that, I began to read about the super foods and learned to incorporate more of them into our diet. It was amazing how much more energy I had. Soon I started going to the farmer’s market and purchasing fresher food that was more local. We ate very well and he especially loved all of the home cooked meals. I consider that such a blessing today now that he can no longer eat. If I hadn’t done that, I would missed out on all of the wonderful memories today. Although Dear Son has lost his ability to swallow food, he still remembers the good meals.

Today, I still make nearly everything from scratch and am always looking for a something new I can make. Making your own food tastes a whole lot better and there isn’t anything in there that you can’t pronounce or that you need to worry about. Just recently, I got a new breadmaker for Christmas, the Zojirushi Mini Home Bakery which makes one pound loaves of bread. Now I make my own flaxseed bread, hamburger buns, jam and soon I’ll try making the pizza dough. I found a recipe for homemade ketchup in my bread cookbook so I give that a try.

SIMPLIFY. I love paying bills every month because there aren’t many. Just rent, insurance, utilities and that’s about it. Once you begin to simplify, it’s amazing how much time is freed up. Paying bills on-line is even easier, taking only seconds and no time at all if you set up your payments to go out on a certain day every month.

Photo of my apartment door in my 750 square foot apartment.

DOWNSIZE. At first, it was difficult. I went from a 1750 square foot home to an 1100 square foot apartment to a 750 square foot apartment. I got rid of a lot of stuff. Gone are the multiple Christmas trees, Christmas tree lights and all kinds of stuff. What’s left is easy to care for and things I love. More important is the time I gained. I can’t believe how much time and energy it took to keep everything clean and maintain all of that. It’s so much easier now. Learning to live simply and elegantly feels good. Photo of Dear Son's simple hospital bed.

LIVE WITH LESS. Living with less is easy. There is less to clean and it’s less expensive. There is only one toilet to clean instead of three, only one car to drive and maintain (and it’s small at that) and fewer clothes. Living with less, doesn’t mean you still can’t have nice things. In fact, it’s often quite the opposite. Think fewer but nicer.

WASTE LESS. I am almost ashamed to think that I used to throw out leftovers. Now, I make less and waste hardly anything. I learned how to freeze foods and make single serving quantities of things.

SPEND AND CONSUME LESS. Sure it’s better for the planet but the real reason I consumed less is that I couldn’t buy as much. The best part about consuming less is that you have a lot more time on your hands. Buying less means less to maintain, less to process (no need to spend time putting away all of those items when you get home) and more time to spend on the things you love. I got a library card and started checking out books at the library instead of buying them all. Now I still buy books, but only after I have read them and only if it’s a book that I love and will read again.

MORE FAMILY TIME. I spend a lot more time with Dear Son now that I work less hours. It’s great to be able to spend time with your kids. I doubt he misses the finer things. I know that he would miss his Mom.

Kitchen "after" photo, staged by Dream Organizers.

START YOUR OWN BUSINESS. I really loved my former career but at some point, not being able to find daycare for Dear Son meant I could no longer work full time. I needed to let that go. I never wanted to start my own business however now I have a small business that I love. I do what I love to do and I work around Dear Son’s schedule. I spend more time with him and yet I am able to keep a roof over my head.

Photo of my patio at my former apartment. A nice place to relax.

TAKE TIME FOR YOURSELF EVERY DAY. I remember when I worked full time, there were many days when I hardly had time to go to the bathroom. Every second of every day was filled to the brim so I could get everything done. Now I am certainly busy, but I’ve learned to take a few minutes to myself every day, to keep me centered and calm. I’ll never get sucked into a lifestyle where I can’t find three minutes to myself every day.

The walking trail near our home where Dear Son and I walk most days in the summer.

GET HEALTHY. Learning to cook was part of it. Not having access to health insurance was a driving force. I eat better and exercise more now that I have more time. When you pay out of pocket to see a doctor, you eat a lot better and take care of yourself better so you don’t get sick.

BEAUTY COMES FROM THE INSIDE OUT. I learned that beauty comes from the inside out, not the outside in. When I worked full time, I could afford expensive cosmetics. Once I scaled down my lifestyle, I learned that when you provide your body with optimum nutrition, water and exercise, you can skip the expensive wrinkle creams. You can’t purchase good skin in a bottle.
Photo of Dear Son-13,5 years old.

COUNT MY BLESSINGS. Not a day goes by when I don’t count my blessings. I start all of my prayers by being thankful for what I have. I never realized how blessed I was until my situation changed. Now I am thankful for my lovely Dear Son and everything I have. I have learned that no matter what I am going through, there is always someone that is having a harder day and needs my help or my prayers. I have learned that sharing my blessings and good fortunes with others, especially those who need it the most, is a privilege and a blessing in itself.

Update

Dear Son will be admitted to Big Academic Medical Center for some EEG testing for a few days. We are scheduled for tomorrow however I am hoping I can get them to let him be admitted later today, so Dear Son's Dad can help me lift him in/out of the car. I forget that I can no longer handle him. Dear Son appears to be having some seizure issues however at this point, it's pretty hard to determine, without an EEG, the presence of seizures. Sometimes, there are no outward signs and we learn he is seizing all the time; other times, we see outward signs but no presence of them on the EEG.

I apologize for the delay in posting recently. I switched to a new ISP and I've been transferring my e-mails to my new account. I tried to use True Switch for that service however they transferred some and then the process was aborted. I searched for another service however I couldn't find one on-line so I ended up doing this manually. Yikes, what a job. I had been with the same ISP for over eight years.

As a result of the admission, I probably won't be posting for a few days. Photo above is of Dear Son at school last November. They made dog treats and sold them at the school fair with proceeds going to the local Humane Society. Dear Son loved making them. He especially loved it when his teacher tossed flour on his tray. Dear Son's hands are not functional and he's been working very hard this year on learning to use them. You can see the dystonic nature of his hands in this picture. All of his fingers are also double jointed and lack tone which make using his hands more problematic. You can see the finished treats in his hands. It's probably my favorite picture of him. His teacher has really done an outstanding job of helping his use his hands in a variety of tasks throughout the day and in ways that not only challenge Dear Son but things he really enjoys. I think they made these dog treats every day for around two months. He certainly enjoyed making them.

Happy Holidays 2008

Our holiday card.

The coffee table above and living room below.

The tree and Dear Son's glider chair (above) and the foyer (below).

The armoire (this is my pantry) in the dining room of my apartment (above). Picture of our short legged kitty giving Dear Son's picture a kiss (below).

Photo of Dear Son's long legs (below) followed by the three drawer chest in the living room. And lastly, a picture of Wiggles the cat in his Santa hat. I made him and Dear Son wear them at the same time. Wiggles actually allowed me to put it on this year (probably because it made Dear Son laugh) and take some pictures of it.

The last few weeks have been a little more challenging than most. Typically, Christmas break or any school break takes a lot of my time. More often than not, it means twenty four hour a day care. Normally, Dear Son attends school for part of the day. The school days make it easier in terms of care since school does the lunch feeding as well as a few diaper changes. As Dear Son has grown, the amount of physical energy it takes to care for him has increased. Simple tasks, like rolling him over at night are different now that he is quite tall and heavier. I apologize for not posting much but I haven't had much of a break. Dear Son's father has taken him overnight tonight since I work tomorrow so I had a few hours to catch up.

Dear Son's seizures seem to have increased as well. We had some excellent results in early December following an increase in his Vagus Nerve Stimulator. For the first two weeks of the increase, he only had one really bad seizure. Since that time, things have deteriorated a bit. He seems to be much more agitated along with several seizure type episodes. In addition, he is not able to control his saliva very well so there is more night time choking. I suspect this is another indication of possible seizure activity. We are scheduled for an extended EEG monitoring in January to determine exactly what is happening. Dear Son's seizures have changed over time; we have times when he does not show outward signs of a seizure and yet, the EEG shows otherwise. His EEGs are always abnormal, however some of them tend to be worse than others.

Christmas was rather nice. We went to Grandma's house for Christmas dinner. The most challenging part of any invitation is getting Dear Son into and out of the car. Dear Son's father came on his lunch hour and lifted Dear Son into the car for me and then went back to work. I had other family members that helped me get him in/out of the car and assisted me with the hoyer lift throughout the day. Unfortunately, things didn't go as well when we got home. The driveway was a sheet of ice. I was able to place a 5 x 5 foot mat on the ground so I could lift Dear Son out of the car and into his wheelchair. The mat would prevent slipping and falling on the ice. Unfortunately, Dear Son was exhausted from the day and could not sit up any longer. When I attempted to lift him out of the car, he pushed back to lie down. When he did this, he slid off the front seat and onto the floor of the car. I was able to lift him back up on the seat however he leaned back again and when I lifted him he went down on the ground. Luckily, I had the mat beneath him. He wasn't injured at all and I held him as he went down so he didn't get hurt in any way. I did have to call 911 and have the paramedics come help me lift him off the ground. I explained that there weren't any injuries and that he was just exhausted and could not weight bear. One of the paramedics recognized Dear Son from a previous call. In the end, when I asked them for what information was needed (for billing), they declined and said to, "Have a nice evening." All in all, a nice holiday.

I am posting a few Christmas pics from this year as well as our holiday card for 2008. I prefer to take Dear Son's picture in a regular chair, as opposed to his wheelchair however this may be the last year for that. As you can see from the picture, he can't sit up very well at all anymore. I put him in the rocker since it supports him more than the glider chair. He didn't smile this year although it was probably because he was working so hard to sit up.

As always, thank you for your support throughout the year and your interest in Dear Son. We hope you have a wonderful 2009.

Interview with Dream Mom

My thanks to Deborah at 5 Minutes for Special Needs for her lovely interview. She contacted me a few weeks ago for this and it published today. Deborah also writes a blog of her own, detailing her life with her special needs son.

Designed to Sell Meets Designed to "Live"

Living Room South Wall-After Photo

As stated in my profile, I have a organization and staging business that I run while Dear Son is in school. Here is one of my latest projects.

This client had a new home and wanted some ideas on decorating. She was frustrated because they had a beautiful home but somehow, it just wasn't coming together. She had purchased and returned many items when finally she called me to help her stage her home. She wanted to surprise her husband when he came back from a business trip. Staging is not only for selling your home, but even better when you want to live in your home. In the same way you might go to a new hair salon for a new hairstyle, staging allows you to show off your home to it's best ability and to show off your own personal style. Sometimes, we have all of the right things, we just need help in pulling it all together. This is how I did it.

In the before photos, the room isn't very inviting. The curved sofa is against the wall with a baby rocker. On the east wall, the cat condo sits in front of the window and the chair sits in the corner of the room making conversation with someone on the sofa difficult. The bookshelf leans against the wall but doesn't relate to the living room and there isn't any flow or continuity from the living room to the dining room.

On the plus side, the furniture is nice. The client stated she didn't care for the sofa and she would be fine if we replaced it. The house had recently been painted so every room is ready to go. All of the paint coordinates with the furniture and the client has nice accessories. Most of the errors, so to speak in this room, have to do with furniture placement.

Living Room South Wall with Sofa Before

Living Room East Wall

Living Room West Wall

I had her send me some photos of her home and asked her a few questions to determine her decorating preferences and style and to learn how she wanted the rooms to feel. I asked her what items she wanted to keep and what items she wasn't attached to. From there, I created a staging plan. I did all of the following in four hours. In every case, I used things she had in other parts of her home or in her basement. In addition, I made some suggestions on other things she could add to each of the rooms. Working with the client, I made all of these changes in one four hour session and we didn't spend one dime. In the end, I made some suggestions on things she could add in each room and showed her some photos of what to look for when she went shopping for those items.

After Photo of West/North Wall.

By far the most dramatic change to her home came in the living room. By simply moving the furniture and using accessories found in other parts of her home, I was able to create a beautiful living room filled with colors she liked and accessories she chose herself. I simply put her things together in a different way. The curved sofa or "floating" sofa as it is called, was moved away from the wall (hence the name, "floating" sofa). The round coffee table complements the curved sofa. The matching chair pulls out the color of the woodwork and wrought iron railings of the staircase. The red pillows and red vases complement the room but more importantly tie the living room and dining room together. The circular or round shape is repeated throughout the room. In addition, I have attached a few before photos to show you where she was using these items before staging.

After Photo of East Wall.

Before home staging:

-Console and mirror were used in the foyer. (After staging, moved to living room east wall.)

-Coffee table was being used in the family room. (After staging, moved to living room.)

-Pillows were on a bench in the master bedroom. (After staging, moved to sofa and dining room chairs.)

-Ottoman was used in the master bedroom bath. (After staging, used as an end table.)

-Glass table top was on an end table in the basement. (After staging, used as a top to create an end table with the ottoman.)

-Living room centerpiece was on a sofa table in the upstairs hallway.

-Red vases and accent pieces were stored in the basement.

-Candleholders were from the master bedroom dresser top. (After staging, they are on the console table in the east wall photo.)

After the living room was completed, the homeowner only needed to purchase two items. I recommended a tall wrought iron lamp for the southwest corner of the room and a circular glass top for the end table. (We had used a rectangular top from another end table in the house until she could purchase a circular one.)

Dining Room: In the before photo-there is a picture on the south wall, to the right of the window. The tulips flowers on the dining room table are too "light" for the room meaning it's a spring time flower in a bold room. The deep red color dictates a more appropriate flower. The red placements on the table are too formal with the rustic wood table and leather chairs.

Dining Room Before

Dining Room After

In the After photo, the placemats have been removed. We used a centerpiece that is more appropriate in scale to the room. I recommended some flowers and a vase from Pottery Barn to replace the centerpiece. The new centerpiece is a white birch vase with deep red mums in a tall vase. You can see the pillows have been added to the dining room chairs in the corner. These pillows are similar to the ones in the living room. What you can't see is that the picture has been removed. A mirror has been added to the west wall (still needs to be hung). I added red glass accessories to the table beneath the mirror however you can't see that because the mirror was waiting to be hung. I also recommended that a wrought iron fixture with red and brown colored crystals be added to add some sparkle. The client later added a linear wrought iron fixture which complements the room.

FOYER-These are pictures of the foyer. In the before photo, the rug was too small and the foyer was cluttered. To remedy this, the clutter was removed and a larger rug, that was more appropriate in scale was used. The homeowner already had this rug, but didn't know where to put it.

Foyer Before

Foyer-After


Powder Room Before (without the rug).

Powder Room After (With the rug from the foyer.)

Master Bedroom-The Master Bedroom was fairly simple. I added the homeowner's previous red bedding, which she had stored in the basement, to add some color to the room. It makes the room look a little more polished.

Master Bedroom Before-

Master Bedroom After-See below.


The homeowner loved the changes. More importantly, I used nearly everything she already had and things that she picked out previously. I did all of these changes in one "four hour" session. More importantly, she called the next morning and said her husband returned from his business trip and was "blown away" with their new living room. He liked it so much, they hired me to do the rest of their home. I have since made furniture and design recommendations for the rest of their home and they have purchased many of the items I recommended. The husband commented that they had tried using two different designers to help them pull together their home and yet they liked this the best.

Stocking Stuffers

I remember when Dear Son was a little boy. It was always hard around Christmas trying to find the right toys for him. It seemed like my life was forever entrenched in the Toys R Us aisle for kids 0-12 months. Year after year, that was my aisle. When Dear Son was a baby, he never hit any of his milestones. Even after that, the milestones were few and far between. Shopping for Christmas toys was a reminder of that. As his chronological age grew, his developmental age remained the same.

When Dear Son missed his milestones, I began to write him a letter from Santa that I would put in his stocking. The letter would highlight the one or two things that Dear Son accomplished that year, with glowing words of praise from the one and only Santa. It was a reminder of sorts, that we were moving forward and that while his accomplishments may be small, they were accomplishments, nonetheless. Each year, the letter would be written on a colored sheet of construction paper and placed in his stocking. And every year, the letter would end the same way, “All my love, Santa.” Some years, I’d write the letter at three a.m., after I came home from singing in the church choir for midnight mass. Other years, it was done sooner. I am not sure who the letter was really for, if it was for him or if it was for me, but it worked.

On Christmas day, or sometimes even a day later, I would sit Dear Son on my lap, and we’d look in his stocking for the letter. I’d read the letter to him and he just loved it. More often than not, we’d read the letter over and over. He seemed to enjoy it as much the fifth time, as he did the first. Although the letter was short on accomplishments, it was big on love.

Somewhere along the way, I stopped writing the letters from Santa. I am reminded of them when I hang the stocking or when I look through his memory box. But this Christmas, the memory of that letter, keeps coming back.

At the beginning of the year, Dear Son would sit up in his rocker, his head pressed against the window, and look out the patio door. He’d watch the ducks, birdies and ground squirrel that would come up to eat the bird seed. Over time, he began to fall over to his right side. After repeatedly sitting him back up in his rocker, I began to move the rocker over to the dining room table. It was there he would listen to his music, with his head lying on the table. Soon, the image of his head against the window looking out, was just a distant memory.

Over the last few weeks, he began to cry out when he was at the table. He could no longer sit up for more than an hour and a half and needed to lie down. The first time it happened, I thought he might be tired or getting sick, but now, I know we are heading down the path, losing skills along the way. Saturdays are the worst. Just this Saturday, he was up from 8 a.m. to 10:30 a.m. and then had to lie down and slept until I got him up from 3:30 p.m. to 5 p.m. It’s almost like clockwork now. He hits the ninety minute mark and he cries out to let me know he needs to lie down. Once he’s in his bed, he smiles at me, as if to thank me, then quickly falls asleep. The house is quiet, too quiet for a weekend. It feels lonely too.

As Christmas approaches, I am reminded of those letters to Santa, each with the little milestones. The milestones, that took years in the making, are going away, and going away quickly. I am missing my Dear Son already. It’s too early for a silent night.

Slip Sliding Away

Dear Son was looking forward to his birthday. We had been talking about it for weeks now. Typically, I’ll send a cake to school and they will celebrate there, in addition to our little party at home. Dear Son loves a party and loves it even more when everyone sings to him. I was looking forward to it too, but was trying to figure out what I could get him, in addition to some new clothes. What he really needed was a new leather rocker/recliner, like the one at his Grandma’s house. Her rocker/recliner is very large, made of dark brown leather and has a lot of padding. Most important, it has a tall back to support Dear Son’s head and neck. That, along with the large armrests, make it perfect for Dear Son. He loves to sit in it and look out the window. What’s nice is that if you are sitting on the sofa in the living room and say something to him, he can take his foot and swivel the rocker around to face you. I like that because it gives Dear Son a chance to do what he wants to do, instead of waiting for someone to turn him around. I think that is important. In addition, it provides more support, something he badly needs now that he is deteriorating.

I had made up my mind years ago, when he got his first wheelchair, that I’d never use that in our home as a chair for him. Eating in it was fine, or transporting him in it was fine, but just letting him sit in a wheelchair, seemed almost cruel. Sitting in the chair, without being able to move around unless someone did it for you, just wasn’t right. Once I found his first rocker, my problem was solved. He either used that or walked on his knees. Now he can’t really do either.

I got him a special chair, among other things, for his birthday. The chair, was a mission styled glider, with a burgundy leather seat cushion. What I really needed was a new leather rocker/recliner for him, but I couldn’t afford one. This chair was used actually, but would meet his needs perfectly. The back was tall to support his head and neck and the arm rests were not only wooden, but nice and wide, to provide support for his forearms. He had actually used the chair nearly two years ago, during a family outing at my sister’s fiance’s summer home. At his house, it was the only chair Dear Son could use. He was happy to get out of his wheelchair to sit in the chair. At that time, he couldn’t sit very long, let’s say three hours or so before he’d have to lie down. But the chair, he really enjoyed. He sat there for hours with us, rocking the chair by pushing his foot against the hardwood floors. Dear Son’s feet have always worked fairly well and although he can’t stand or walk, he can move them fairly easily.

A few weeks back my sister’s fiancé was looking to get a new chair for his house. He asked if I might want the chair for Dear Son. I agreed and he promptly bought the chair over. I decided to give it to Dear Son as a birthday present, along with some other items. I hid the chair in the garage and covered it up so he wouldn’t see it, until the big day.

His birthday arrived. I had the new glider sitting in the living room when he came home from school. He liked it and was eager to try it out. He sat in it and it supported him well. It took him a while before he used the glider portion though. He just kind of sat in there. I was excited that it worked for him. The only downside was that once he was in the chair, I couldn’t really turn the chair around, like I could his rocker. This was a bit problematic since once I sat him in the chair, I couldn’t move the chair to the dining room table so he could listen to his country music after school. He liked to sit in his rocker after school, with his head lying on the table and listen to his music. The glider then, was used mainly on weekends.

Typically, on a Saturday, I’d get him up and sit him in the chair. He had deteriorated enough that I could no longer use the rocking chair, since he’d fall over. The new leather glider had solved that problem or so I thought. Just last week, after sitting in it for a few minutes, he slid right out of the glider and onto the floor. I was right there to catch him, and he wasn’t hurt, but still, it was a problem. This week, we used the chair even more, while he was on Thanksgiving break, and it happened a few more times. Further evidence he was deteriorating. He’ll be sitting there, the tone just leaves his body and he slides right out onto the floor.

Soon, I began to do a work around though. I’d start him in the glider and then after he’s up for a little bit, transition him to his rocker and sit him next to the dining room table. Once he’s there, he’ll rest his head on the table and listen to music for a while. When he gets tired, he’ll yell out and that means he’s getting tired and needs to lie down. But today was frustrating. He couldn’t sit in the glider and he couldn’t sit in the rocker. Each time, he’d fall over to the right until I finally had to take the hoyer lift and put him back in his bed so he could lie down. It was frustrating because I wondered what I would do once he couldn’t sit up anymore. True, I could use the wheelchair but that is stationary. It was then that I realized that things were probably not ever getting better. I knew the path we were going down but I guess I expected that one day, he wouldn’t be able to do these things and then I’d know. Instead, it’s not really like that. They lose a little bit every day and you make adjustments, until one day, they can’t do it at all.

It reminded me of when he was little and learning to walk. I kept waiting for that big day when he could walk. I remember trying to define what that day would be. Would it be the day he took a step in his walker, the day he walked in his walker or the day he could walk by himself in the walker or what? It was none of those. It just happened gradually. And losing his ability to sit up, will happen the same way.

Note: Dear Son is seventeen years old and suffers from a progressive neurological disease and intractable seizures as a result of a random mutation of the ARX gene. This mutation causes Infantile Spasms, dystonia and severe mental retardation.

Photos are of Dear Son a few days after his birthday.

Best Toys and Gifts for Special Needs Children

I remember it very distinctly. I was standing in the Toys R Us store trying to find “one” toy that I could buy Dear Son for Christmas. It wasn’t that I couldn’t afford more than one toy, it was rather that with his disabilities, there weren’t any toys that he could do himself, that we didn’t already have. I walked around for quite some time, when I got stuck in one of the aisles behind two young boys fighting over all their toys. They had an entire cart full of toys and were begging for more. Somehow, at that moment, life didn’t seem too fair. I just needed one toy, that didn’t require the use of your hands, your fingers, that didn’t require you to be able to sit, to be able to roll over or to use your voice. I needed something that didn’t flash or vibrate (since he had seizures and these could bring them on). I wanted to surprise him, to make him smile. I was, after all, Santa.Many of the toys I saw, didn’t work for one reason or another, or I had already purchased them. Most of my family, preferred to give me money, so I could select the toys. Typically, this would mean a two hour shopping trip, only to come home with a few five dollar toys, but nothing exciting or of any consequence. I should also explain that some of the challenges parents of special needs children face, is finding toys that match their “developmental” age especially when their “chronological” age is much larger. I decided to put together a list of Dear Son’s favorite toys over the years, in hopes that I might be able to assist other parents of children with severe disabilities, in finding toys for Christmas. I will also show you a picture when I can and tell you what types of things you should look for or what made this particular toy a favorite.To give you a little history, Dear Son is severely developmentally delayed (retarded), has no use of his hands or arms, is non-verbal, can not walk, can not talk, can not feed himself and is totally dependent on someone. For many years, Dear Son could not roll over. As time passed, he was able to walk on his knees and roll over. Today, he can do neither.

Wooden Rocking Chair- We purchased a wood rocker at a furniture store many years ago. We happened to find this rocker while we were looking to purchase some dining room chairs. Dear Son was getting fussy in his wheelchair so I put him in this child's maple rocker while we purchased our chairs. The rocking chair worked so well, we purchased it for Dear Son. What was great about this rocker was that it had a tall back, which supported his trunk and the back of his head. This rocker was made of maple, but was still light enough for him to scoot around the house on the carpet with it. He took his feet and scooted side to side to move it and then loved to lean forward and look out the window. I liked it because he could get around the house easily and independently. It was much better than sitting in a wheelchair all day or lying on the floor. We’d take this rocker to family outings or simply when we went somewhere, like to see fireworks on the fourth of July. It’s the only seat he was able to stay in. A regular chair didn’t work because he would fall off the chair and because he couldn’t move the chair around the room. Many physical therapists have never heard of a child using a rocker to get around in like this, but once they saw him, they agreed it worked. From a therapeutic standpoint, the rocker also helped his balance. He still uses a rocker today, only he can’t get around in it like he once did and it’s now much larger. I found some child rockers at this website. I like the one pictured here because it has a higher back. I understand that Cracker Barrel has some nice rocking chairs and I have noticed some of the best ones (and best price too) at a large antiques market in our area.When selecting a rocker, it’s important that the rocker isn’t too tall, that the child’s foot can rest flat on the floor so he/she can maneuver the chair around the room. Finally, stay away from the combination wood and wicker rockers since they are often too heavy for the kids to maneuver. The all wooden ones work best. Dear Son had one from a furniture store that was done in a maple wood with a clear finish that we loved. If your child has the use of his hands, select one that has horizontal slats on the back, uniform in nature, so they can grip the slats and pull themselves into a standing position. If they are severely disabled, this won’t matter and vertical slats would work just as well. Dear Son has enjoyed a rocker from ages three on up.Microsoft

Acti-Mates Barney-This is the original talking Barney that Microsoft made and then discontinued in 2000. Copies are still available on eBay.Why it works? Because Dear Son was non-verbal, this toy became his best friend. It could talk when he couldn’t. If you pressed Barney’s hands, he would sing and if you pressed his feet, he would talk. It didn’t require a lot of pressure to activate him. The reason it worked for Dear Son was that he could use his mouth and bite on Barney’s hands to get them to work. If Dear Son was sitting, he would take his left foot and step on Barney’s feet and he would talk. This toy was worth every penny. We have had about six of these in his life. There are so many severely disabled children who love this particular Barney, that it’s truly amazing. None of the newer type Barney’s work as well as this one. If you wanted to select a similar toy, look for a talking toy that does not require your hands or arms to operate and that could be activated by a foot, a child biting on it or by light pressure. Some of the talking toys that I have seen, require you to press on the chest of the toy or to press a disc in the hand. This is not something that a severely disabled child could do.

Bedtime Barney-This particular Barney has a star on his chest and is actually called a Bedtime Barney. When you press on the star, Barney sings several bedtime songs that help Dear Son fall asleep. Each song gets softer and softer and has lots of yawns in between. The lights get dimmer and dimmer until they fall asleep. What’s great about this Barney is that the star on Barney’s chest is large enough and made of a hard plastic so Dear Son could take his head or his chin and press on Barney’s chest to get it to work. He loves to sleep with Barney in his arms. The blue stocking cap night cap that Barney wears is very soft and Dear Son likes the feel of it against his skin. You don’t even have to be disabled for this one, since many kids love it. I have seen this Barney available in most toy stores and the retail section of Target and other discount stores however I had trouble locating it on a website.

Ball Pit-Dear Son loved a ball pit. He loved to lie in the ball pit and would often fall asleep in there. They are pretty safe and you can wash the plastic balls in the dishwasher to sanitize them. What to look for: You want one that is open on top (unless you want to chase the balls all over your family room when they kick them out) and one with a large enough door that is zippered so you can lift the child into the ball pit. I would try to stick with one around four feet by four feet so it doesn’t overwhelm your family room. I have seen some of these used outdoors however I would only recommend them for indoor use since things could crawl into it if it were outdoors.

Cat-You may wonder why a cat would make a good pet versus a dog or another animal. The reason I like a cat for Dear Son is that it is easier to take care of-as a single mother, I can't leave Dear Son unattended while I take the dog for a walk. He enjoys the cat because the cat is playful and gets into things. Dear Son can't get into things so he enjoys watching the cat do this or watching the cat "get in trouble" doing something he shouldn't. The cat provides a lot of enjoyment for Dear Son. Currently, our cat will stand on the edge of the edge of the bed and meow when he wants Dear Son to pet him. I'll bring the cat over to Dear Son, take Dear Son's hand while holding the cat with the other one, and then pet the cat. Dear Son really likes it. It's important to note that you want a cat that is playful, a lap cat and one that is good with children. We have a Munchkin cat (breed) and that is perfect for him. They are smart, great with kids and a lap cat.

Pop-up Tent-Any pop-up tent will do providing the size is right for your child. Dear Son would lie on his back in the tent, and then take his legs and kick the ceiling of the tent, practically knocking it over. It was great exercise for his abdominals and a great way to get rid of extra energy. If your child is Special Needs, see if you can get a child’s sleeping bag to put on the bottom of the tent to make it softer for them to lie on (it also helps to have it there in case they have an accident i.e. diaper leakage). You can find these at most toy stores. For an older child, GapKids makes one every spring and they also sell a child’s sleeping bag to match. I tried to find some examples of this type of tent and I see that they have a lot of them out there. There are three things you want to look for: 1) the tent should have a bottom (many of the ones I viewed did not) 2) it should be a pop-up type with no assembly required and 3) it should have a fabric door that closes off the front. While I left the fabric door open most of the time, Dear Son loved that it would fall half way closed. As an added bonus, he nearly always took a nap in his tent. It remains one of his favorite toys to this day and he still takes a nap in it.

Radio Flyer Wagon-My son loved this wagon. It was perfect for walks. What made this toy perfect was the tall sides and back of the wagon. The tall back allowed extra support for his back when sitting in the wagon. We had a wood one however the newer ones are plastic but should work just as well. Train-The best train we ever got was one from Walgreen’s. It was a battery operated small train that had a 36 inch round track that fit on the coffee table in the family room. Dear Son loved to sit on the floor and lean against the coffee table to watch and listen to the train. He loved it even more when he could take his arm and de-rail the train. This might take twenty tries and an awfully long time but he could do it. And when he did, he would laugh some big belly laughs. This toy was great from a therapeutic standpoint to encourage use of his arms. I purchased more expensive trains from Lionel but they didn’t work as well since the track was too sensitive. A tunnel is a great idea too if you can find one for the train. What to look for: Look for a train with a small track, unless you have a lot of room. I like the battery operated ones best. Make sure you can access the batteries easily. Most of these cheaper trains work best however access to the batteries are difficult due to the small screws used.

Mr. Christmas Musical Carousels-Mr. Christmas makes a great line of musical carousels. What is great about Mr. Christmas items is that they have a lot of songs, both Christmas and non-Christmas on the carousels and they have a volume control. The volume control is a big deal since many of the cheaper carousels you buy don’t have a volume control and they volume is too loud. Also, the quality of the music is great on them. When you listen to a cheaper carousel, the music quality is scratchy. Dear Son loved to listen and watch the carousel. He especially loved one with horses. I have tried other musical toys/carousels but the Mr. Christmas ones are the absolute best. Do not bother with any other brand. This year, I purchased the Mr. Christmas Symphony Surprise-Santa's Workshop. Four windows open in the house to reveal musical animated Gingerbread musicians. It plays fifty songs in four part harmony, 25 Christmas and 25 non-Christmas favorites and includes a real clock. The web site will give available stores however I was able to find this one at our local Meijer store even though the web site only gave the Grand Rapids Michigan Meijer store as one of the available locations.

Swing-An outdoor swing is essential for them. What you want is a swing with a tall back to support them. You can find them for several hundred dollars in a therapy catalog however I suspect you can now find them in a toy store or on-line much cheaper. Every child loves the tall back, not just children with disabilities. You can often see examples of this type of swing in many parks across the country. They are most often in red, have a high back and nearly every child and adult will use them, disabled or not.

Television near their bed.-One of the most surprising things that Dear Son loved was a television he had in one of the rehabilitation hospitals he frequented. This particular hospital had a small t.v. right next to his bed. He loved it. A television across the room was of less interest to him. The small size is important too-I am guessing this one was around a 13 inch screen which is just about right.

Videos- His absolute favorite movie was, “A Very Goofy Christmas”. He would laugh big belly laughs over this one movie.

Silly Six Pins-This is a bowling game where the bowling pins talk. We never used the bowling ball but instead set up the pins on our kitchen table on a placemat. I would pull Dear Son up to the table in his wheelchair, with only his lap strap fastened, and he would lean forward and use his head to knock the pins down. The bowling pins would talk to him to help encourage this action. This activity helped strengthen his trunk control and he loved it. As a reminder, the age of destruction preceeds the age of construction so developmentally, things that crash will always be a better choice than things for them to build.

IPOD-My son loves to listen to music so any of the IPODs would be an excellent choice. You do have to be careful that you watch the volume control since they can’t turn the volume up or down themselves.

Musical Mat- This is a musical mat that is about two feet wide and two feet tall that lies on the floor. When you press on the mat, it plays music. This is a great toy for an infant or toddler who is having difficulty in learning to roll over. You can practice helping them roll over and when they roll, they will be rewarded with music. Dear Son enjoyed this toy.

Musical toothbrush-Disney and several other manufacturers make a musical toothbrush that is great. I never used them for brushing teeth though. I used it to occupy Dear Son when he was getting a lab test or a shot. The song usually lasts three to five minutes or so, just long enough to keep his attention on the music and by the time the song is done, they have completed the shot without any crying. For Dear Son, he loved music and attended to things he heard vs. things he saw. The small size of the toothbrush made it great for taking along, as opposed to the size of a regular musical toy. These can also be used for tooth brushing however I tended to prefer the Oral B types for that.

Stocking Stuffers- Some great stocking stuffers include:

-Slinky-because it doesn’t take much hand control to get it to roll over.
-Bubble bath.
-Bath paints-you can squirt it on the child and write his name or “I love you” on his chest when you give them a bath. The color makes it fun.
-Other fun gifts ideas include movie gift cards, museum gift cards or in our state, we have a wonderful Arboretum with some fantastic trails. A membership card is a great gift.
-Babysitting coupons so the parents can go out to dinner is always appreciated. So often with Special Needs children, none of the family wants to babysit since they are afraid or it’s too much work. While that may be true, there is often a time when the child is sleeping, that the parents can go out for a quick dinner.

And the best gift of all-a note from Santa! When my son didn’t hit any milestones his first year, I was devasted. I had nothing to write in his baby book. I decided to write him a letter from Santa every year and include in it, the two or three things that he did accomplish. Santa would tell Dear Son how proud he was that he was able to work so hard and accomplish these things. The letter would be written on construction paper, in crayon and end the same way, “All my love, Santa”. I would roll up the letter and put it in his stocking. He loved to sit on my lap while I would read the letter.

These are my absolute best toy/gift ideas for Special Needs Children.

12/20/10-Recently, I compiled a list of toys/gifts for special needs children. Click here to see them. I will also tell you why I think a particular toy is good for these kids as well as tell you how the child will play with it and/or what to look for in a particular toy. I have included links to Amazon so you can order it and have it delivered to save you time from having to go out. I will be adding additional items throughout the year, that I think would work for these kids. Please be sure to save this link for all future gifts (both birthday, Christmas and otherwise).
*I originally published this on 12/4/06 however due to the high number of google requests for gifts for special needs children, I am reprinting it.

Update, Nestle Compleat and Kangaroo ePump Reviews

I wanted to apologize for the delay in posting. I'll be writing a new post this weekend on Dear Son's recent 17th birthday. I haven't had a lot of time lately and I appreciate all of the visits to my site to check for new posts.

Things are getting more challenging in terms of caring for Dear Son. Not only does he continue to grow but as he gets more complex, the daily tasks seem to be taking their toll on me. None of the tasks by themselves are that difficult, but being on 24/7 can be tough without much sleep. He seems to be getting taller and heavier every day. While his waist/pant size has remained the same for the last year, his shoulders are getting much broader and he is outgrowing all of his shirts. I am buying him XL shirts and and they are no longer enormous but look to be about the right size. (Gasp!) The added size is exhausting me in terms of caring for him. On the weekends, when he is not in school, it takes a lot of energy just to care for him whether it's transitioning him from the rocker to the glider chair, changing his diaper or simply rolling him over and lifting his hips. I do love caring for him though and he is and will always be the best part of my day and the best part of my life. I am enormously blessed to be his mother.

The feeding pump issues I experienced with the new Kangaroo ePump have been resolved. A few weeks ago, Dear Son got the new pump and the pump was failing to pull the formula down the tubing. The problem was twofold. Dear Son's new formula, Nestle Compleat, which I absolutely love, is made from real food and is much thicker than his prior formula, Pedia Sure Enteral with fiber. As a result, the ePump could not pull the formula down the tubing after the initial use of the feeding bag. I solved this issue by putting 60 cc of water in the bag and starting the pump. The pump was able to pull the water through the tubing easier and once I got the pump running, I could add the formula.

The second problem with the ePump had to do with the feeding bags. There is a piece on the bags that should rotate so the bag snaps into place allowing the mechanism to rotate thereby pulling the formula through the bag. Once the bag is refrigerated (You are allotted one bag per day and you refrigerate the bag between meals.), the piece on the bag gets stuck and will not rotate. Since it won't rotate, it fails to lock into place and no formula gets pulled through the bag. Dear Son's Dad resolved that issue with a screwdriver. You can manually turn the piece to line it up and then when you place it into the ePump, it falls into place and the mechanism will rotate freely. So while it is a pain to pull out the screwdriver at every meal to resolve this, it does work.

Ironically, the home health vendor was not able to resolve the problems and I got a replacement pump before we were able to resolve the issues on our own. Secondly, I sent an e-mail to Kangaroo and they were not helpful. Their only suggestion was not removing the bag from the ePump. I explained that was not an option since 1) bacteria could grow if the bag is left out all day and 2) the bag needed to be removed so I could send the pump to school. I also stated that they needed to re-visit the ePump since it should be able to pull the formula down through the bag and that the bag should not have these issues. Kangaroo never bothered to respond. Parents should not have this much difficulty in light of the other issues we experience.

Some weeks later, our home health vendor had a delay in shipping the Nestle Compleat and I had to use to old formula, PediaSure. It was extremely thin and ran down through the bag. I guess since the Nestle Compleat is much thicker and made from real food, it presents a larger challenge. I can't imagine children would feel full on a formula that is as thin as water either.

Regarding the Nestle Compleat formula, I can't say enough good things about it. Dear Son changed formula a few weeks back. I began working with a new GI nutritionist as a major children's hospital. Dear Son needed to transition to an adult formula and I asked if there was a "natural" formula. She recommened Nestle Compleat, a blenderized formula made from "real food". It contains carrots, chicken, tomatos, peas and cranberry juice along with BeneFiber. This formula is much thicker than his previous formula, smells great and he seems to be more satisfied and not as hungry as the previous formula. In addition, it seems much easier on his system. Dear Son has motility issues related to his gene mutation and the Nestle Compleat has drastically improved his bowel movements. Previously, he might go three or four days without a bowel movement and then have a few on one day. This is not uncommon from what I have learned from other special needs children. With the Nestle Compleat formula, Dear Son has one bowel movement every day and sometimes two. If he has two then he may skip a day but he is much more regular. Although I have not been able to reduce or eliminate his Miralax (he gets one tbsp. per day), this seems much better. I should also mention that this formula has more protein in it and that meets his needs better.

The only downside to the Nestle Complet is the size of the cans. Previously, his other formula came in 8 oz. cans. This formula, comes in 8.25 oz cans which is a little more work for me. Before, I gave Dear Son two cans at each meal. With the new size, I give 1.5 cans for breakfast, 2 cans for lunch, 2 cans less 60 cc for dinner and then the final 60 cc at midnight. This is a bit of a pain on top of giving 12 meds four times a day, tracking bowel movements, taking care of Dear Son and running a business.

The new ePump, despite it's faults above, has given me one major benefit. I can set up the empty bag in the ePump at midnight so it's ready to go in the morning. I have to start the feeding at 4:15 a.m. so it's done by 6:30 a.m. so he can get ready for school. Having the bag set up allows me to hit just a few buttons in the morning and then I can get back to bed. This is important since I give his last meds at midnight and I am often up a few times in between. Also, the fact that he is getting less formula for breakfast (he gets water in addition to the formula at each meal) means that I can get up at 4:15 a.m. to get the ePump started versus 3:30 a.m. with the PediaSure. Honestly, I could never get up at 3:30 a.m. and was always behind the eight ball in the morning getting the formula ready. Now, I can honestly say that I am up for 4:15 a.m. feeds almost 100% of the time.

In terms of Dear Son, he seems to be having more seizures again. Not only that, but he is choking a lot more at night on his saliva, despite wearing the Scopalamine patch (it reduces choking since it dries up his secretions). I am very concerned about this because I am worried he will choke on his secretions and it also raises the possibility that we may need to revisit surgical removal of his saliva glands. In the interim, I have contacted the neurologist and I'll get some blood levels tomorrow for Dear Son and we will go from there.

Physically, he continues to decline, at least in terms of sitting. He can not support himself and falls repeatedly to the right side. I got him a new living room chair for his birthday and while that supports him better, he looked terrible in the pictures I took of him since he can not sit up straight. I was so excited about the pictures and then disappointed when I saw them. He can't take a nice picture when he slouches in the chair.

On the plus side, he is working extremely hard at school attempting to use his hands and arms. His teacher has done a wonderful job of incorporating fun tasks that require him to use his hands throughout the day. I went to school recently to learn how he has been doing some of these tasks. It was quite amazing. He is now able to move his fingers slightly to water the plants. His teacher has a special water bottle that she places in his hands. His hand goes on the top, one of hers goes on the bottom and her other hand goes under his elbow. When she feels the movement of his tendons, she squeezes the bottom of the water bottle so he gets the "reward" component for moving his fingers ever so slightly. Dear Son is so proud of this. And I am proud of him.

In terms of myself, I have been busy caring for Dear Son and been more exhausted than normal from a lack of sleep. I have also been busy painting my living room, foyer and dining room. Although I live in an apartment, I decided I needed to repaint the walls to freshen them up. I sanded them lightly, washed them all, applied painter's tape and then painted them all. Once that was done, I decided to paint over the green accent wall in the dining room. I painted it the same color as the rest of the room and I really don't like it. It looks very boring and dull now. Althought I not normally a fan of accent walls, it allowed me to have some color in an apartment without having to paint all of the walls back to a neutral color when I move. I will probably choose a new color in January and re-paint again.

I also hope to show you a new project that I completed recently. I had a new client with a beautiful new home that wanted to spruce it up a bit. So in this case, instead of staging to sell her house, I staged it to live. She allotted a budget for some new furniture however I was able to transform a few rooms using existing furniture. Her living room went from empty to "amazing". You won't believe the transformation! I have some before photos showing the placement of the furniture and accessories in the other rooms and then you'll see the after photos using her existing stuff. In four hours, I'll show you how some small changes made for some exciting results.

I'll try to post a story this weekend. In addition, I have been asked to complete an blogger interview. I'll share that with you once it's complete.

As always, thank you for your interest in Dear Son. I appreciate your interest and always enjoy reading the wonderful comments.

P.S. Reuters picked up one of our blog postings recently. Yay!