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Saturday, January 20, 2018

New AFO's

We got to pick up his new AFO's. Of course his old shoes didn't fit so we immediately had to go shoe shopping as always. We go to Yorker shoes. They are great and always have shoes that fit over his braces. We love New Balance. They hold up really well and come in wide and extra wide. Since his foot is longer now we normally only need a wide. He needed a 6 1/2 to fit over his braces which I think is 1 1/2 sizes larger than his actual shoe size.

He asked for red and I was picturing this horrible bright red brace but shame on me for even doubting his orthotist to not come through with an awesome looking brace. I actually love them. He chose some very bright blue sneakers to fit over them. I was shocked he didn't want to go with the black pair but he said "nope, I don't want those". Maybe because his last pair were black. He likes to switch it up.

The worst part about new braces is adjusting. He tries them on and they get adjusted while we are there but we are never lucky enough to leave and have no issues. They are actually making huge marks on his ankles which is not normal for him. He can't even wear them until they get adjusted. I have never seen marks like these before. Normally he just gets some redness. Fortunately she will come out to his school so we shouldn't have to drive out to the city again. I just don't know how long it wil be until she can come out this way and he hasn't been able to wear his braces for a few months now.

I will get some better pictures next week and let you know if he is walking better with them. I am happy that he still walks with flat feet nearly 3 years after SDR. I do wish that his right foot wouldn't rotate outwards as much as it does. I feel like it is worse than it ever has been and I have no idea why. I have brought it up to multiple people including therapists and doctors and no one really knows why or has any advice to help it stop rotating. His body is a never ending battle, well his right side anyway. His left side looks pretty darn good. If his right side matched he would be doing very well right now but it doesn't. His right side has always been worse off and is not catching up even with SDR, SPML and a ton of strength training. Before we went into the shoe store he saw snow and asked to go step in it. This is not something he ever asks to do. I was happy he wanted to go be a boy for a moment.

So here is to another year of leg braces. They look huge. They used to be so little and cute back when he was 1 years old. This must be his 15th pair. I used to keep them all to see his growth but my husband got fed up with that idea when he found 6 pair in his closet one year.

Tuesday, January 16, 2018

It's that time again.....appointments

I am not sure why Winter is when most of his appointments have to occur but here we are yet again. We are picking up his new AFO's on Friday. February 2nd he has his yearly physical at the pediatrican and then February 26th he has the dreaded cardiology for his echocardigram. He also will need a dentist appointment soon and a wheelchair adjustment/parts order.

Brendan is becoming more decisive lately. I usually go over color options before we head into his casting appointment but for some reason I forgot. Katie, his orthotist, asked what color he wanted and he immediately exclaimed, red! I was impressed with his instant decision. Maybe he was already thinking about it before we arrived. I am slightly bummed we are back in AFO's after SDR but this type is necessary due to his crouched walking. We bought an ankle sport brace to use on his right leg while he works out. This allows him to gain muscle instead of the braces doing all of the work. I asked his orthotist if we could pay out of pocket for SMO's to use while working out and she suggested the sport brace instead. His left ankle is not as weak so he just wears it on one side.

I find the pediatrician appointment not very necessary although this time I may discuss a view things. I am thinking of having him try medical marijuana. I know this is a controversial topic but I have read many positive effects. Brendan isn't one to talk about or express pain. I think he has become accustomed to chronic pain. I don't want him to live a life in pain and cerebral palsy tends to cause more and more pain as they age. I have also read that it can help relax the body and help hips slide back into place. As you know Brendan's left hip is teetering on needing surgery. I have a lot more research to do but I want the script so I have the option once I am ready to make the decision. Feel free to leave comments on this subject!

It has already been 2 years since Brendan had his heart checked. At age 5 he had his Atrial Spetal Defect closed which has since (finally) healed nicely. However, we have also been watching his enlarged aorta. I was actually blindsided with this information a few years ago. We have only been to 1 heart appointment that I left happy and carefree. He has seen this doctor since he was 11 months old and apparently had always been watching his aorta but never told me. This may have been because I literally broke down hsyterically crying when I was told about his ASD. It was a very difficult time in my life and I had found out so many things were wrong with my baby. Something being wrong with his heart was the last straw. I apologized and was mortified but I could not control my emotions. Brendan is not one to receive good news regarding his body. Even after his ASD was surgerically repaired it had 'leaks' that we had to watch. 2 years ago was the first time in his life we were allowed to wait 2 years instead of 1 for an echocardigram. His leaks seemed to have disapeared and his aorta didn't seem to be a major conern.The doctor isn't sure if his aorta is actually enlarged or if it is a normal size for Brendan. I think since Brendan is so small for his age the charts may be off. He is 15 but far from the size of most 15 year olds. He is only 80lbs and only 4'10" so I often wonder if his heart doesn't match his body. I guess we will know more after this appointment since he has grown a lot in the last 2 years. I have put the fear out of my mind. I was told he would need open heart surgery to repair this or his life expectancy would be shortened to 35. I honestly can't fathom any of this and since the doctor didn't act like this was a definite diagnosis I decided to just give it time. The time has come.

This is our life. Sometimes I can't believe what we have been through when I write it all out. Being born at 33 weeks and losing oxygen has caused all of this. So many tears. So much stress. So many gray hairs!!!! But somehow we have made it 15 years. He is happy. I am still sane. I still can't think about the future becuase that seriously scares me to death so I continue to take this journey in life day by day.

Friday, January 12, 2018

Accessible Van Shopping

Brendan is growing and is OUTGROWING our side entry Toyota Sienna. I didn't even realize this was a possibility but apparently it has happened to other people as well. He got a larger wheelchair frame 2 years ago and we have been struggling to get him into the van since. It has really begun to bother me. I can hardly reach around his chair to get the tie downs around his chair. It is also very difficult to wheel him in and turn him into position. His tip wheels get stuck on the tie down system and then his feet get stuck on the seat in front of him. We have had this van for nearly 7 years and I was hoping to keep it for at least 10 but we will sell it and put the money towards the new vehicle.

There are so many options. Since we have a large family we can only go with the mini van or full size van. I decided against the full size even though we probably should have that size to fit our family comfortably. I didn't want to drive that huge van around everywhere and worry about roof clearance or parking garages. I hope I don't regret it.


Side Entry Rear Entry (short cut) Rear Entry (long cut) Manual Ramp Electric Ramp

We need the long cut also due to our family size. I am going with the manual ramp this time because it will be quicker to open and we will have less maintance down the road. However I have never had any major issues with our electric ramp. In the cold it can take a few tries to open. I think this is pretty common.

I have learned a lot researching. Right now the leftover 2017 Toyota Sienna's are selling at amazing prices. Search on line and always ask for the e price. It is worth the phone calls and emails. They seriously give you an amazing price. Also get an eprice from all dealerships in your area to help you get the lowest price at the dealership you want. I found purchasing your own vehicle (as long as you get a good deal) and install a rear entry conversion is the most cost effective way to go. Purchasing an already converted vehicle is much less time consuming but it also seems to be the most expensive option. We did the that the first time around when I had no clue about accessible vehicles. We just stopped in at a mobility place and bought one. I won't lie, it has been amazing over the last 6 1/2 years. It has definitely saved my back and neck from NOT lifting his equipment nor him in and out of vehicles. But he is now 15 and it is time to get a different style. One important note: If you purchase a van to convert do not get All Wheel Drive. You can not covert it so only buy Front Wheel Drive. I have also read that some conversions and even some van makes are not wide enough and some chairs don't fit in between the seats. We need this van to last through multiple chair growths. Research is a must! Ask all the questions to make sure you ge the right conversion for your family. Toyota is wider and longer than some vans which helps make the conversion work well for a large family.

Our Plan:

Buy a 2017 leftover Toyota Sienna XLE (they are also offering 0% financing right now) and then ship it off to convert it with a long cut manual rear entry. I am also going with the ez lock system so I just have ot wheel Brendan in and he locks in. No need for tie downs. No more bending over and strapping his chair in 4 locations. The EZ lock system is the most exciting part for me. Since we have a lot of kids we neeed to add a folding bench seat in the rear. We unfold it after we lock Brendan in. That will be the most annoying part but we are very limited on options. I have also read that some conversions are not wide enough and some chairs don't fit in between the seats. We need this van to last through multiple chair growths. Research is a must! Ask all the questions to make sure you ge the right conversion for your family.

Once we have our new van in our hands I will post about the process in detail and all of the companies I went through. I am still figuring out some last minute details.

We will be selling our van ourselves. We asked Toyota about trading it in and they couldn't even come up with a price to give us. We asked for a certain amount and they didn't think they could give us the amount we asked for so we passed. They actually never even offered us a dollar amount. I appreciated their honesty.

Rear entry are harder to find and after researching I found Side entry is more popular and take up over 70% of the market. I always thought rear entry were more popular. Maybe they were 6 years ago.

So hopefully in a month or so we will have our new van. I will take some video's of hooking him into both vans.

Saturday, January 6, 2018

Happy New Year! Welcome 2018

It is hard to belive it is already 2018! This year flew by. Our children had a wonderful Christmas. This year was a bit different because both my Mom and my In Laws went off for the Winter. My mom is in AZ and my inlaws are in FL. They chose a great year to escape New England as we are stuck in single digits a bit too much for my liking. Our youngest already turned 3 just a few days ago, Now that is it crazy.

It was a pretty easy year. Our business is going well and the kids are all healthy and happy. Actually the 3 year old is down and out with a fever right now. Hoping she feels good tomorrow, it will be day 3. Four kids are now in school which makes life a bit easier. Lily is getting older and easier to take care of especially while at work. I hope 2018 is just as good to us.

Brendan didn't need any surgeries and has had good behavior especially for being 15. We continue to work out multiple times every single week. This is very important after SDR. February marks 3 years since he had SDR (Selective Dorsal Rhizotomy) which also amazes me. Time sure flies by as you age. He has been growing constantly and it is causing a lot of issues with his body. We work hard to overcome the challenges but somehow CP always seems to win! We have been watching his hips often but his left hip is staying at around 40% out. I have 4 orthopedics who tell me we should perform surgery and one out of state ortho that says not to. I am extremely torn. It is one surgery I do not want to repeat. I have been told oposite opinions about how he will be after the surgery. One doctor told me he will never walk well again, not even how he is walking now. I have had another doctor tell me he will get back to where he is and hopefully surpass this level. Then I have the out of state doctor tell me what I want to hear and that is many people live with a hip that is 40% out just fine and never need surgery. I just read about an adult wishing she had the surgery when she was younger because her hip is causing pain and a poor gait. His hip never leaves my mind and I hope I am making the right decision but sometimes when I see him walk or stand I wonder if he should have the surgery. I wish I could forsee the future and then make the right decision. Wouldn't that be lovely?

Brendan is still improving on his speech. He keeps coming up with these sentances that make me laugh only because I don't expect to hear them out of his mouth. Sometimes his 10 year old sister and I repeat what he says at the same exact time. We both can't believe what he says which I find adorable. I love when she is shocked at what he says just as I am. I wish I could remember some phrases from the last week but my brain isn't working as well these days. I never ever expected him to speak as he does today and I am thrilled that the brain constantly heals and improves.

Brendan received a Keurig for his birthday and is obsessed with it. He has either coffee or hot chocolate every day. He can make it all on his own but I have to help him add ice, cream and sugar. How can I say no when he yells "I made it all on my own mom"?

He started to be able to stand up on his own lifting himself off of a kaye bench. We work on this nearly every single day. He has major balance issues. Honestly I am not sure if he has any balance at all. It is the one thing I wish would come to him but it just is not. We have been using estim on his quads because his brain wasn't activating that muscle at all and it is working! He is now activating them after a few months. His glutes don't activate either but somehow I think that may be mean to estim his glutes!!

We have a 3 week intensive therapy coming up. NAPA is opening up a location near us so we can commute every day. I figured it was worth a shot and I don't need to disrupt this family too much since we can commute every day. I am worried about his crouching and feel he needs SPML yet again. I really hope it doesn't effect his efforts or progression during the NAPA intensive. I will be diligent with stretching and working out for the next few months. He will attend at the end of June a few weeks after they open their new location. SO EXCITING!

Another exciting month will be April. My in law are bringing everyone down along with my sister in law, her boyfriend and their daughter during the whole week of April vacation. We have never done anything on a school vacation so it is a little exciting. Some of the kids have never flown so they are nervous for their first flight. The girls are getting older and can potentially fly down on their own in the future during school vacations so I am glad we get to all go together for their first flight. Brendan and I can certainly show them the ropes!

I still have my 'I hate CP days' lately but I continue to just take it day by day. I get too stressed out if I live life any other way. We will continue to work hard and appreciate any progression that Brendan has and just enjoy our lives.

Here's to 2018!!!

Brendan is really growing up on me!