First Look at the Foyer

I celebrated my birthday today.  My sister took me out to lunch and also brought me some pink hydrangeas from her garden.  I put them on my three drawer chest in the foyer.  I still have to install my crystal sconces on either side of the mirror yet, but overall, I love the look of these pink hydrangeas on the chest of drawers. We had a great time visiting over lunch and it's something we don't do often enough. Overall, a really nice day.  I went to visit my Mom at the nursing home prior to going to lunch so it was great to see her as well.

 I haven't done much of anything in here. I suspect I'll paint the walls within the next few months, once I decide on a color. I selected a pale pink paint color for my kitchen and if I like it, I'll use it in here as well. Martha Stewart did one of her guest houses in a pale pink color many years ago and I have always loved it. But for now, for summer, my focus is on the yard.

 

One of the things I like about my new house is that I have an open concept living room/foyer with a vaulted ceiling. The ceilings are nice and tall which allow me to display my beautiful Louis XV mirror. I think these pink hydrangeas look just perfect here.

 One final look....so pretty. I am thankful to have such beautiful things.

First Look :Master Bedroom & Craigslist Headboard

 Whew, I know it's been a while but it's taken a little time to get settled.  Matthew is no longer in school so I don't have a whole lot of time to do projects around the house. I've been in the new house for two months now and things are finally settling down.  As I mentioned previously, the house was a flip so the advantage was that everything was new (except for the air conditioner) however that also meant that it didn't have any window treatments, towel bars, closet shelving, shower curtain rods, etc. Needless to say, I've been very busy.  Scott (ex-husband) has been helping out quite a bit and installing  lot of closet shelving for me. I put in new shelving in the kitchen, coat closet, linen closet and Matt's closet.  There are new towel bars, towel rings, shower curtain rods in the bathroom (post coming soon). The bathroom looks stunning.

In the meantime, I learned that the air conditioner didn't work so I had to have a new air conditioner put in; I sweated it out for a few weeks while I saved the money for it. My brand new dishwasher went out after two weeks and it was out of warranty so I just got that fixed today.  I also purchased all new blinds for the house.  While my washer and dryer were new, the dryer didn't work initially. It turned out the dryer vent was clogged. When I had the home inspection, the washer/dryer had not been installed so there wasn't any way to know. I had that fixed right away.

On the outside, there was a lot of work to do-I removed a ton of vines growing up on the house, had a few trees cut down and Scott and I trimmed a few other trees. Scott told me the neighbors were going to call me, "Mr. T" (he's the actor who cut down a bunch of trees when he moved to Lake Forest, IL and the neighbors were in an uproar over that). The house had been vacant a while so many of the trees were touching the roof so I had to get those removed.  I planted six flats of pink impatients and I put in new mulch.  I still have some more yard work to do and I need to put in some sod on the side yard.  Landscaping will have to wait until the spring however for now, it's mostly clean and neat. I had to laugh because many of the neighbors commented on how great the yard looked and all I did was to clean it up and put some mulch down. They will really be impressed when I actually plant something! I painted my front door (will post pictures once I get the address numbers on it) and in general still have some work to do outside. All of this while cooking from scratch and taking care of Matthew. On to the fun stuff!

 One of the first things I did before I moved was to purchase this headboard. I happened to look out on Craigslist and saw this beauty. I had always loved Claudio Rayes iron headboards,  with all of the scroll work, so when I saw this black/gold headboard, I wanted it. And the price could not be beat.  $40. Yes, only $40.  Sold!  The headboard was so heavy it took 2 men to carry it down and then Scott stored it for me until I closed on the house.  Here is a picture of the headboard without the pillows on it.

 Here is the headboard in my room. One of my favorite things about the new house is that I have a fairly large bedroom. I have a king size bed and I have two three drawer chests, one on each side of the bed and there is still room to spare.

 Each chest of drawers is a little over three feet wide. I painted these black when I had my former apartment and the apartment was so small that I could only fit one of the three drawer chests on the side of the bed. I love symmetry so I am happy that both of them work.

 I have two large closets and then a little room in between to hang my nail polish rack. I swear I get more comments on the nail polish rack when people see my room. I love having them in a rack on the wall so I can pick my polish with the sun shining on the colors. I love that everything is new in my house-all new closet doors, moldings, flooring, etc. 

 This is the view into my hallway. The linen closet is the closet you see in the hall.

 I like having a full length mirror in my room again. In my former apartment, I had this mirror over Matt's bed; I knew I wanted to keep it but there wasn't a lot of space.

 Another view.

 This is the west side of the room. It's pretty hard to take photos in this room with the sun shining in so I closed the blinds. I can't wait until I can afford some drapes to add some softness to the room.

 One of the things I like about my new house is all of the attention to detail. Even the register is pretty in my room. The carpet is ultra padded and feels quite luxurious. This is the only room with carpet; the living areas and Matthew's room are hardwood and the bathroom and laundry have travertine tile. They also put in beautiful pull chains for the light fixtures in the closet.  I don't think I could have selected prettier options! I really feel that this is the perfect house for us.

 

 

 On the opposite side of the room it's empty! I suspect when I am ready to redo the room, I'll add a chest of drawers or some built ins for more storage. For now, I am just enjoying the extra space. It's so calming in my room.  I have so many other projects so this one will have to wait.

 At some point, I'd like to paint the room and get new bedding. I like this soft green bedding by Barbara Barry. I think I'd like a soft green on the walls to make the headboard and three drawer chests pop against the wall.

 I am not really fond of this gold bedding in this room. It looks great in person but totally loses something when I take photos. The wall color is a pale cream almost yellow and at my former apartment, they had a strong taupe/tan on the walls that complimented the bedding much better. I found the color too contemporary for my taste and now that I am in my permanent home, I plan on using a much softer palette. As for the photos, I took these using my phone however I think my camera photos are a bit better. That's all for now. I'll try to post my bathroom pics soon. I have a few more to take.

Personalizing Your Trash Can

Sometimes, moving in can be overwhelming. It seems like there are a million things to do, one of which was to get a trash can. In our city, while we can purchase them at a big box store, it's a better deal to purchase them from the city. Of course, I chose the largest trash can they offered.  And I've been filling it every week!  

Here is the trash can "before" the new numbers.

 I wanted to put my address on it but it needed to look pretty.  When I was growing up, we had aluminum trash cans with lids on them. Back then, if someone put their address on them, they spray painted it in very large numbers on the can, often with black spray paint. The numbers were so large that they took up nearly all of the space on the can. I think this is because the "Dads" were in charge of the trash cans back then.  They'd spray paint those numbers on the can and it didn't really matter how it looked, as long as it was functional. Fast forward to 2013...I think I can not only put my address on it to make it functional, but it should be beautiful as well.

I went online to view some the fonts however I really liked this font. I thought it would look both pretty and artsy at the same time.  Originally, I was going to put it on the front of the can, however I think it looks much better on the side. I ordered the numbers from Wall Words, then followed the instructions.  I leveled the numbers and centered them on the can.  I peeled the backing off and then used the plastic card to smooth out the air bubbles.

And here is the "after".  I really liked the way it turned out. I like the size of the numbers and it is now both pretty and functional.

 Do you put your address on your garbage can?

 In other news, Matthew has been doing a little better this week.  He was having a lot of choking issues over these past few months. With his progressive disease, he's not able to swallow his own secretions so he chokes on them unless I suction them out. It's a lot of work sometimes. He was also having more seizures. We went to the neurologist last week and he adjusted his vagus nerve stimulator and he's been doing much better. The seizures decreased and he is not choking so much. My best guess is that the seizures caused the excess saliva and then he'd choke on it. 

 I'll have some more projects to share soon. I am waiting for some things to be installed and then we can take a looky loo around the new house and I can show you around.  I just ordered the shower curtain tonight then the bathroom will be done.

Our New House

 I just wanted to share pictures of our new home.  I am sorry this took so long however I needed to take care of some things first.  I started shopping for a new home in February.  Homes started selling really fast and it was difficult to drop everything with Dear Son (Matthew) and run and look at these homes. Many of the foreclosures had multiple bids even in you saw the home within a few hours of the listing. At the start of this process, I knew I wanted a ranch home and not a townhome or a condo or anything else.  I suspected I'd end up with a 50's ranch home.  The problem was that I couldn't get Matthew in the home, meaning the doors weren't wide enough for his wheelchair or the doorway had too many turns. Even when I could get him into a home, there weren't any homes that I saw that I could get his wheelchair into the bedroom. I figured I'd have to redo the doorways to do that.  The market was moving so fast on affordable ranch homes in the area I wanted. I was looking to stay in the same county and had one or two key towns that I was targeting. Both had great school districts and were in good neighborhoods. I bid on three separate homes and lost out on all three. The first home I bid on, had multiple offers before I even bid, one of which had been accepted.  I started working with one real estate person however she wasn't available to show me this home until Monday and I had requested to see it on a Friday.  Of course, they accepted a bid on Saturday so by the time I saw it on Sunday (with a different realtor), they had already accepted a bid. The home was perfect for us. 

Since the homes were moving fast, I began to get creative and started looking at some overpriced homes to determine if I could bid on those. I found a great ranch home down the street from the first home I bid on. It turned out that it had been on the market a while and was in great condition. I bid on the home and with zero competition, I had high hopes they might accept. It was a divorce situation however and the husband and wife had been ordered to liquidate all of their properties (they had four). The wife refused to respond to any and all offers on the house however the husband's attorney had the power of attorney and could sign for the wife. It looked like it would work out. At the last minute, the wife ended up keeping the home since one of her other homes sold, so I was out of luck.

I bid on a third home down the street. I essentially bid on three homes on the same street. I lost out on that home due to a bidding war and I wasn't comfortable increasing my bid. I was getting pretty discouraged at that point mainly since there just weren't any homes available. I had scoured the internet for a home but nothing was happening. I was worried I wouldn't find something before my least expired. While I could have extended my lease, I really didn't want to.

By this time, I was really down. I decided to look at this one townhome in our area because it was right on the walking trail. It had a great location, great landscaping however it needed updating. It was difficult to get Matthew into the home and the only doorway I could get the wheelchair in had a turn that was difficult.  The worse feature was the popcorn ceiling. I wanted to put crown molding in the place however when I researched it some more, most of those popcorn ceilings contained asbestos and since asbestos is a leading cause of lung cancer and since Matthew has respiratory issues and weak lungs, I decided to pass on that one.

Finally, I decided to see this townhome. I had seen it a few months prior however I really wanted a home and not a townhome so I passed on it. This time, it just clicked.  The open floor plan is perfect for Matthew. There is a bedroom off the front door that has double doors making it easy to get his wheelchair in his room. There is plenty of room in the living area for his wheelchair. The townhome was a flip and everything has been redone so it's like buying a brand new place.  This place was only 3 miles from our apartment (we lived on a golf course) and is in a great town. The high school is one of the top high schools in the state and all of the schools (elementary, junior high and high school) are rated 10/10.

Here is a picture of the entrance. Dear Son's (Matthew's) room is off to the right with the double french doors.

Here is the living area-these are the real estate photos with the staging.

 This is the master bedroom.

 My favorite part of the house is the bathroom. It has beautiful travertine tile and a stunning vanity. The pictures don't do it justice. I like to say that our home is functional for Matthew and pretty for me. They also put travertine tile in the laundry room. I think my first words when I saw the house was that, "I'd be over the moon if I got to do laundry in a room with travertine tile." It's just so pretty.

 I like the wood floors. There are bronze accents throughout. They really paid attention to detail and made everything pretty. There are beautiful pull chains in the master bedroom closet. The garage flooring has a special coating and is very pretty. Overall, nearly everything was done beautifully.

 Here is a picture of Matt's room.

I purchased the home on March 1st. The mortgage approval process went really fast.  The loan was ready to close in 3 weeks.  I waited to close until early April due to my current apartment lease. My lease was set to expire at the end of May but I was able to get out of it a month early.  Once the loan closed, I started moving things over to the new house. I moved everything myself and had movers come and move just the furniture. It was a lot on top of caring for Matthew, cooking all of his food from scratch. I felt like I worked 24 hours a day for several months! I was exhausted. The new home has worked out pretty well. Everything was new except for the air conditioner.  All appliances were new and the only one I needed to purchase was a refrigerator. I purchased a used one for now.  Of course since everything was new, that meant I didn't know how to work anything.  My new dryer isn't drying clothes very well so I need to have them come out. My air conditioner isn't cooling very well but other than that, things are going o.k.  I am working on getting Matthew enrolled at this new school system.

I officially moved last Friday and I turned in the apartement keys on Tuesday. I am looking forward to getting some rest soon.  I'll show some pictures once I get things set up. Because it was redone, there weren't any curtain rods, blinds, shelving, etc. I had to put in new blinds plus lots of shelving. I redid the kitchen pantry shelving and replaced the 12 inch shelves with 16 inch shelving. There wasn't any shelving in the linen closet so I had to get that done. Dad installed all of it for me. There is still a lot to be done-towel bars to install, my headboard needs to be attached, Matt's closet needs to be redone and my crystal sconces need to be hung yet.  I want to change the paint as well. Overall, I am very happy. I think it's the perfect home for us and I look forward to many years here.

Moving Soon

 

I've been waiting to share this and it won't be much longer.  I am getting ready to close on our new house in the next two weeks. Everything is done and approved so it's just a matter of seeing if all of the parties can close a little sooner. Once that is done, I'll show you our new place.

The best part about the new place is that it is absolutely perfect for Dear Son. It's an open floor plan with a beautiful bedroom with double french doors off of the living area. The double french doors make it very wheelchair accessible for him. 

I don't want to reveal too much more but I think you'll be surprised.  Originally, I was looking for a 50's ranch with hardwood floors however finding an affordable one was extremely difficult.  In addition, there proved to be many challenges. Most of the 50's ranches had smaller doorways and I couldn't get the wheelchair in the rooms, and often times in the house itself. Many of the bathrooms were too small to get his bathroom wheelchair in (Dad has a smaller, portable wheelchair that he can get Dear Son into the bathroom and then he transfer him to the hydraulic bath chair.). Some of the ranches had a step or two and that made it difficult as well.

We are really excited to move to our new home.  Of course that means lots of new projects that I'll get to share.  I think the best part is that this process couldn't have gone smoother.  It was a very competitive market shopping for the home but once I found the right place, things went very well. Our current space is quite small so it will be great to have more space. I can't wait to put up a Christmas tree this year and to decorate for all of the holidays. I can't wait to plant flowers and so much more.  I'll probably wait to paint until I am in there however. Originally I planned to paint it all ahead of time however I was able to get out of my lease a month early so I need to speed things up a bit. The photo above is a picture of my former home-I sold it some ten years ago but I always loved it. It lived really well. It will be great to have beautiful home again.

 

 

Small Victory! He Can Move His Right Arm!

It's been a long time since I posted, but it's been very busy here.  Perhaps the best news is that Dear Son continues to improve.  As I mentioned previously, his new blenderized diet has improved his dystonia (movement disorder) immensely. For the first time in 21 years, he is able to move his right arm on his own to help put on his t-shirt. I put the arm hole over his arm and he is able to move it slightly to push it through. He is really trying to do this and he's never had any real use of his arms/hands.

 I just took this picture the other day-he needs a shave but overall looks pretty good.

 

As a little boy, he had intense physical, occupational and speech therapy since he was three years old. Shortly thereafter, we had an evaluation at the Rehabilitation Institute of Chicago to determine what was wrong with his arms/hands but the intense thereapy never worked. We had additional outside therapy (outside of school) when he was around ten or so to try to get his arms and legs working better however nothing really worked.  He always used his mouth to operate things like his Barney (chewed on his hand to make him talk) or used his head to butt into an object to let you know he wanted that object or to make it work.

 

When he was in high school, his teacher had a water bottle that she rigged up to help him water the plants. She would place her hand under his forearm and when she felt a muscle move, she would squeeze the bottle (her hand on top of his hand) to help him water the plants. That was the most he could really do. He did enjoy putting his hands in the flour for dog biscuits but overall his arms/hands have never really been functional.

 

When he went to the transition program (it's a day program that they go to from ages 18-22), one of the goals I had was for them to do range of motion exercises for him for his arms and legs to keep them from getting contracted. At that time, he had just come home from the hospital after having the swine flu and he was not able to move his big toe, let alone a foot, a leg or his arms/hands.  I still felt it was important to do that to keep him from getting contracted because at that time, I had great difficulty in trying to get him to straighten his leg. I knew that couldn't be comfortable and I worried it was painful for him as well.

 

Since that time, they have continued to do his exercises however once he started his Now Foods Organic Coconut Oil regime (it's the ONLY brand that works for him) and new blenderized diet made from real food (I took him off of commercial formula via the g tube and  feed him a blenderized diet made from scratch and feed it through his feeding tube), his legs began to move (see ball kicking video where he kicked the ball 10 times) and now he is able to move his arms. The journey has been amazing: The first step was that he began to enjoy his arm exercises. Next, they noticed that he had more trouble moving his left arm than his right, because the dystonia was worse on the left side. Now the aide asks him if he's ready to move his left arm and he give her an eye blink for yes, to let her know when he's ready. Often times, it just takes him a few seconds (10-20 seconds) for him to be able to relax that arm to move it. Then he began to move his arm slightly which I had never seen him do before. And then, in the past two weeks, he started trying to lift his arm up for exercises and trying to move his right arm into his t-shirt.

 

Of the two arms, his right arm works much better/easier than the left. I have him lying on his bed when I get him dressed for school or when I change his diaper. I place the t-shirt over his head and then open up the right arm hole and place it over his hand. As he moves his hand to try to push it through, I pull the t-shirt down over his arm to help, lol.  He's only able to move his arm a few inches but that is a lot of progress in a short amount of time. He now looks forward to it.  I tell him how proud I am of him and I talked to him about how he should be proud of himself too!

 

It took months to get this far.  Just a few months ago, I noticed his dystonia was getting better and that he could move his arms better and I had a catch phrase that I used to reinforce it....I'd say that, "your arms move like but tah!". Positive reinforcement goes a long way with him. Now it's pretty rewarding to see him be able to move his arm in a more functional way.

 

I should also mention that his cognitive ability has improved dramatically as well.  Since December, he was having episodes where he didn't want to kick the ball. The aide, who works with him every day, mentioned it to his teacher and they decided to call in the physical therapist to take a look. He was having seizures at that time, so they rescheduled it. Anyway, the physical therapist came to evaluate him. The aide was explaining to her that he hasn't wanted to do his leg exercises and she wanted to know if there was something wrong with his legs or if it was just a matter that he didn't want to do them. Well, as she was explaining it to the therapist, he got a big smile on his face and started kicking his left leg and then kicked his right leg  to let them know that "could" move it but that he didn't want to.  The aide joked that he was showing off and that when it came time to do his exercises, that he wouldn't do them for her. Sure enough, when the therapist left and it came time to do them, he didn't want to do them. He just laughed when she teased him that he didn't want to do it. It was great knowing that he is able to make choices and he totally understood what they were saying. Everyone got a good laugh over that.  I did have a conversation with him about the importance of doing his exercises since exercise and moving his body is important with his progressive disease.

 

I think the best part is that it just goes to show that you are never to old to meet your goals. I never would have thought that he'd have any arm/hand movement and certainly would not have thought that he'd be able to do this after twenty some years. I realize that he's not going to be able to dress himself or operate a remote control or feed  himself or anything like that. But for him to be able to help to put on his t-shirt, for him to be able to let me know if his arm hurts and to let me know when he's ready, those are victories for sure.  I'll take a small victory any day.

Christmas 2012

We had a nice Christmas.  We went over to Dear Son's paternal Grandma's for Christmas.  She had the entire immediate family there including all of the grandkids and great grandkids. Grandma is 91 now, and reminds us of that every day. 

She ordered some pies from Baker's Square and then forgot which location she ordered them from so they had to call to verify the location prior to picking them up, lol.

She's had it at her house for so many years although she has it catered now instead of cooking everything.  There are other family members that bring the turkey and a ton of desserts. Dear Son's Aunt is an amazing baker and makes a ton of different cookies and other Christmas treats that are not only delicious but beautiful.

The great grandkids where there too.  One of the them got a new hat and she was glad to model it for me and put her hands up so I could take the picture. She is a real cutie.  She ran up and threw her arms around her Great Grandma the minute she came into the house.  She got a huge pink dollhouse for Christmas that had an elevator.  When I asked her what her favorite gift was, she said "a Barbie".  I hope Santa didn't hear that after bringing that huge dollhouse.

Dear Son got a new winter hat from his Dad.  I just loved how his face lit up when his Dad was opening up the present for him. I quickly grabbed my phone to take some pictures.  Dear Son has never been able to open any presents since his hands don't work and he can't grab anything. When he was a baby, I used to wrap everything then unwrap it all to open it. I got smarter as the years went on and switched to gift bags to save myself some time.  Dear Son got some new pants, new pj/lounging pants, new hat, shirts, carousel and money. I didn't decorate our apartment for Christmas this year.  I had stored our Christmas decorations at Dad's and he forgot to bring them over and then it got too late. I decided that since we'll be moving in a few months that I'd skip the decorations this year.  One thing that was really cute though, was that Dear Son was awake nearly the whole night pror to Christmas Day in anticipation of Santa.  He was so excited to open presents.

In other news, December 20th marked the one year anniversary of Dear Son's real food blenderized diet. As you may recall, Dear Son eats via a feeding tube and last year I got rid of the formula and switched him over to a real food blenderized diet. He's doing great on this new diet.  We went to the doctor two weeks ago and he lost more weight. 

 

• Dear Son has now lost 18.6 pounds since I changed his diet. That's great for someone who is essentially an invalid and doesn't move much.
• His cognitive skills are much better. Both his brain and his body work so much better now.  He is now able to communicate with eye blinks in response to yes/no questions. On the Friday before vacation, he has a blast at school because the kids in his class came up to talk to him and ask him questions. He responded with eye blinks and then that kid told another one and soon they all came up to talk to him and ask him questions. Dear Son was positively glowing when his nursing aide told me all of this after school.  In twenty one years, Dear Son has never been able to do this so it's really wonderful.
• His body works better. His dystonia (movement disorder that makes it hard to move since your body is contracted and doesn't relax) is much improved. I can lift up his arm and he no longer has any resistance. I tease him and say his arms, "move like buttah" and he smiles every time.
• His acne improved significantly. He went from bad acne to mild and nearly clear skin.
• He's never sick now even though kids/teachers at school get sick. Some of them got the colds/flu but not Dear Son. How cool is that? He used to be the first one sick and now that he's on a real food diet plus the Now Foods Organic Virgin Coconut Oil, he's been pneumonia free for over two years now and has not had any hospitalizations for pneumonia.
• He looks healthy!

I am also giving myself some credit. This is a huge committment on my part. I make nearly all of his foods. In the past year, all of the bread has been homemade, all of his protein sources are organic, he gets eleven servings of fruits/vegetables a day (some organic, some regular), omega 3's and probiotics. This means that when I get tired, I can't go through a drive through or put a frozen pizza in the oven for him. I've made everything from scratch for him for one year. There were only three times in the past year that I have him formula instead of making him real food.  All of his meals take two hours to administer since he gets four cups of blended food/water per meal and he gets one cup of blended food every thirty minutes. I wouldn't trade these results for the world though. It's also really easy to put together since I use an exchange type system. It is a ton of cooking though.

 

One benefit of his blenderized diet was at an office visit. We went to his wheelchair check up recently after getting some new parts. The wheelchair vendor, who's fitted all Dear Son's wheelchairs since he was three, couldn't figure out what was different. When I mentioned his acne was improved, he exclaimed, "That's what different! I thought Dear Son had just come back from vacation because he looked so good!" He went on and said he was amazed at the change.

 

Overall, it's been a great year. But the best is when I see his happy face.  You can tell that he not only looks healthy now but he feels great.  Here is another picture of Dear Son with his new hat that he got for Christmas, posing with his Dad. I like this picture since you can see how good Dear Son looks and because you can see how much his Dad loves him.

 

I'd also like to thank all of my readers for your continued support and comments. It's so nice to have people interested in Dear Son.  Wishing you all some rest and happy holidays.

Making a List and Checking It Twice... The Importance of Having a Pre-Op and Post-Op Plan

After Dear Son's recent surgery, I made a list of things that made it successful this time. One thing I noticed was that while I had a great pre-op plan, I really didn't have a post-op plan. I was so worried about getting through the surgery that I totally forgot about it. I realized this last week when he was starting to cough and had some breathing issues. I was able to turn things around by increasing the Now Foods Organic Virgin Coconut Oil and increasing his nebulizer (breathing) treatments. I realized then that I needed to have a better post op plan and that I needed to document it for future surgeries.

 

Prior to his surgery, I focused on keeping him well and making sure he was as healthy as could be before the surgery. Typically, his diet can range from 30-75% organic per week and prior to the surgery, I made certain to increase that to 75% or more. I made sure all of his fruit was organic so that he'd have as many antioxidants and as few toxins as possible. While normally, he gets 1 tbsp of Now Foods Organic Virgin Coconut Oil to prevent pneumonia, I gave him 2 tbsp/day. I gave him a breathing treatment the morning of the surgery, the first treatment he had since May of this year since he really didn't need them anymore.

 

For post-op, I realize that I needed to do a few things:

• Increases Miralax to twice a day for the first 10 days after surgery.  Since Dear Son couldn't be repositioned much in bed due to his incision, he wasn't moving around as much making it more difficult to have a bowel movement. In addition, the anesthesia made him more constipated so he needs additional help. He was constipated for 9 days after the surgery and is now back to normal.
• For the coconut oil, I'll increase it to twice a day for the first week, then cut back to once a day for the second week but give him 2 tbsp. For the third week, he can go back to 1 tbsp/day. This way, it will keep him from getting any pneumonia, when he can't be moved as much. The additional coconut oil will also help him overcome the constipation from the surgery.
• I think he benefits from nebulizer treatments for a while after surgery. I'll do 2 treatments/day week one and then go down to 1 treatment a day for the next week or so and then off the treatments.
• I'll use the Scopolamine patch to dry  up secretions, if they get too intense. On Friday, I noticed he was choking on his secretions and coughing a lot. I put the patch on for one day and it dried up secretions enough that he could rest comfortably. Less secretions means that he has less chance of aspiration.
• Chest pt-I was doing some chest pt after the surgery so I would just make certain to do it a few times a day, every day to keep his lungs clear.

Since Dear Son is medically fragile and since he needs this Vagus Nerve Stimulator to control seizures, I know that I need to have a great pre and post surgical plan in place for any future surgeries. I feel confident now that I have a good plan in place for the future.

 

Dear Son is doing much better than he was a week ago. His bowels are moving daily, he looks good and I continue to give him one nebulizer treatment a day. He smiles when he sees me get it out so I know it helps him.I suspect I can stop that in another week or so. 

 

My goal is to keep him the best he can be. It's been wonderful this year to see him improve so much with this blenderized diet. He is so much better cognitively and it's working great on every level. It's also been a lot of fun seeing him enjoy life so much and for the first time in umpteen years, it seems like things were easier for him to be him.   As a mother, all you ever really want for your kids is to see them happy. For a kid like Dear Son, keeping him well and keeping him healthy requires constant diligence since even minor slip ups can have a huge impact on him.

Tomorrow he goes back to school so it should be an exciting day. He is really looking forward to it and I feel confident that he is ready.

Medical Update: Gliches

Things seemed to go well for the surgery.  After the surgery, it took around 12 hours or so for his respirations to increase and to start getting back to normal. I felt pretty good about everything for a while however on Friday, the day after Thanksgiving, I noticed his breathing was starting to sound a bit loud. He was coughing more, or trying to cough. He was wretching a bit and he sounded pretty noisy. Anyway, I gave him a nebulizer (breathing) treatment and it seemed to help. His oxygen saturation level improved and went from 90 to 94. Due to the surgery, he's only been able to lie on his right side so the concern was that perhaps a right lung pneumonia might be starting. I have been turning him on his left side for short periods however his lungs sound so bad that I worry he can't breathe so I end up turning him back over within an hour or so. I also make sure I am totally awake when I do that since I worry he'll choke on his own secretions since he can't roll over on his own. Dear Son had been sleeping more and more and things didn't seem quite right. In addition, he hadn't been urinating  as much or having bowel movements as often. I started doing nebulizer treatments once a day, increased his Miralax to twice a day,  and did some chest pt. 

 

Around 1 a.m. or so this morning, I gave him his seizure medications (he gets them every six hours) and he sounded poor.I also gave him an additional dose of the Now Foods Organic Coconut Oil in case he's coming down with pneumonia. He's at high risk for pneumonia after the surgery.  I did some chest pt and gave him a nebulizer treatment at 2 a.m. and he sounds much better. His oxygen saturation was 93 after the treatment and he is breathing much, much better and he's stopped coughing.

 

I'll probably call the doctor tomorrow. I wonder if the anesthesia made it harder for him to have a bowel movement and I'd like some clarity on the lungs. I am not sure if I need to be doing anything else for him at this time. Our clinic visit is in a little less than 2 weeks and we should be able to get the settings on his Vagus Nerve Stimulator increased at that time so that should help these smaller seizures. Overall, I still think things are o.k. however I am a little concerned that this noisy breathing is not going away.

Happy Thanksgiving

Today I am most thankful that Dear Son made it through his surgery. This photo was from the hospital. He's doing pretty good...we're home and he's happy. I am still a little afraid to turn him on his left side since that is where the incision is but I am able to sit him up in the Lazy Boy swivel chair by using the hoyer lift. He enjoyed sitting there and listening to his music with his headphones.

 

Also, it's been 11 months since I started him on his blenderized diet made from real food.  That means that for the first time in 8 years, he was able to have a full Thanksgiving meal. It was blended up in the Blendtec of course and given through his feeding tube but it was still nice that he could smell the food and have some turkey.

 

In looking back on the surgery, I think they did a few things that made it successful for Dear Son this time. I think have an anesthesiologist that was board certified in anesthesia and critical care helped. They were able to use a shorter acting sedation which lessened the respiratory depression. Second, because they were aware of his risks of respiratory depression, they were able to put the breathing tube in differently this time (last time they didn't use it at all). Also, there were two other things that helped. We used the scopolamine patch, a patch that dries up his saliva.  I think this helped a lot because it took about 12 hours after he got out of surgery before his respirations increased to a more normal range.  I doubt he could have coughed very well to clear up the saliva prior to that and if he couldn't cough, he would have been at higher risk for aspirating the secretions into his lungs. And finally, anesthesia recommended that he have a nebulizer treatment with albuteral the morning of the surgery and prior to his surgery to open his bronchial airways. I gave him a treatment at 8:30 a.m. the morning of the surgery. His surgery was scheduled for 12:30 p.m. and it was started around 2:45 p.m.and they finished in a little over 2 hours or so if I recall. I think all of these things helped.

 

 

 

This picture was taken on Wednesday, the day after the surgery. You can see he's pretty happy. He is still having some breakthrough seizures however. When they turn the device on, they start him on a lower setting and work up to his previous setting. Currently, the device cycles on every 3 minutes and the last one cycled every 20 seconds. We'll see if he can make it to his follow up visit.

 

He looks pretty good now. All in all, a lot to be thankful for!