Wednesday, June 13, 2018

Life has been non stop... SPML AGAIN and NAPA has begun

I always want to come here yet never have the time. I honestly do not get any time for myself. Having 5 kids and their sports and therapy all while running a business leave very little time for me.

Brendan joined Drama this year as well as basketball. Some days he had both! He was in a school play (very small part) but it was so great to see him part of something like that. He absolutely loved it. They did Little Shop of Horrors and it was an excellent play. His siblings wanted to watch it multiple times and then we had to rent the movie. Brendan's challenger basketball team won the state champs! They rode the bus back to school with a police escort. HOW COOL?!

Brendan has been growing like a weed. He hit 5' tall which means he is catching up to me! His knees became crouched so badly again that I knew he needed SPML, again. This was his 3rd round. Although his spasticity is gone he still has some tone issues and his tendons don't grow properly due to having spasticity for 12 years. As he grows his tendons can't keep up which makes them short compared to his bones and muscles. He needs them feathered so than can stretch out and allow his legs to stand straight and tall. He also has very weak glutes and quads from 12 years of his body not allowing him to use the correct muscles to stand and walk. This all prevents him from being able to stand straight. This causes him to become exhausted while walking. Fortunately we had signed up for NAPA last year which started this week. Dr. Nuzzo's staff squeezed him in weeks before so we could continue with therapy. Otherwise I would have had to cancel because therapy wouldn't have been very benficial with legs that couldn't stand properly. I am so glad it all worked out. There are amazing people in this world.

Sports are slowing down and soon we will be camping, finally! But first Brendan has 3 weeks of intensive therapy with NAPA. They recently opened a center in Waltham, MA. I signed him up a year ago and suddenly the time has come. We commute daily which takes about 4 hours total. He has 3 hours of therapy and is doing amazing! I wasn't sure how he would act. The only therapist that could get him to work was Mike Poole. Yet he is going and smiling and working and I am shocked! He has 2 hours of neuro suit and one hour of cage therapy. He has one hour with an OT with the neuro suit on and one with PT. He is 3 days in and has such a great attitude. I am so beyond proud of him. I think he is already getting tired so I am not how I will feel during week 3. I hope he can rest well on the weekend and plow through week 2 and 3. Luckily his dad has a hot tub and pool so he can relax and heat those muscles up.

My main goal is for him to gain some stamina in his walker. I hope I learn some new tricks on strength training. I already have seen a few more things I want to order for his home therapy room. It is a huge commitment and I love that our family makes it work. I am so happy we can commute and I can still be home for the morning routine and be home in time to help with dinner. His hours of therapy worked out perfectly and saved us some time sitting in traffic.

Wish us luck! 12 more days to go! Once he is done that will be 45 hours of therapy under his belt!


Wednesday, March 14, 2018

SDR 3 Year Anniversary (forgot to post OOPS)

This month marks 3 years since Brendan had SDR. Everyone always said time flies as you age and it surely does. Life has been different ever since he had surgery. He has come so far in every way. He is such a great kid but can still drive me insane daily. Looking back I still believe it was the best decision we could have made for him.

3 years later and I still work him out religously. He is still off all medications. His sentence structure has improved imensly. He can speak complete sentences and carry on conversations which I absolutely love. He had an Iphone for 5 years and switched over to the Samsung android and has learned how to use it all on his own and handles it great. I am impressed. He still uses his walker to all doctors appointments and short outings. He attends physical therapy once a week and has the best therapist that pushes him and doesn't put up with his shinanigans. We even laugh, a lot. Brendan is his typical self and the whole facility has fallen in love with him. He jokes around with all of them and his therapist recently pranked him which he found extremely funny. He loves pranks.

Does he walk in canes? No. Does he stand on his own? No. Does he still need a wheelchair? Yes. However, I still think this was the best surgery we could have had him go through. Being off life long medication is absolutely amazing. He is so much happier. I think he was in a lot of pain and we just didn't know. He is a tough kid and doesn't complain much about pain. I had to read him a questionaire regarding depression in the pediatricians office today and he said "I feel good" and all his answers were positive. He has so much more control of his body and can help a lot more with transfers and do many transfers all on his own. Yesterday at therapy he was able to turn himself around in the front seat of the van and slide down into his walker. I didn't have to lift him. I held his walker and his right hand. He was nervous but did it and then said "Can I do that next time, too"? He also comes with me to the grocery store weekly (accept if it is pouring rain, freezing cold or snowing) and walks so get some exercise. Sometimes I watch his pre SDR walking video to remind me how far he has come. Sometimes it's the little things that make me think "wow, he has come such a long way". For instance, he can now get a real haircut at the barber shop. He says things such as "I am quite hungry" and has self pride during work outs because he can actually complete tasks that we ask him to do"

February 20th marks 3 full years. It has been a ton of work but this new life has become routine. He enjoys working out. Some days he 'needs' to work out. He has so much pent up energy and is very relaxed and zen afterwards.

Still no regrets.

Tuesday, March 13, 2018

Shoes Shoes Shoes

Finding shoes to fit over these new braces has proven difficult. I took him to our usual shoe store immediately after picking up his braces but for some reason they didn't do the job they normally do. 3 pair later we finally have some that fit.

Yorker shoes usually is quick and painless and the shoes last the next year. An older gentleman helped us out this time and unfortunately I should have paid more attention. Normally they choose the perfect pair, they fit and we leave. This time I noticed the gentleman was having trouble getting the left one to slide on but I thought he just wasn't strong enough. I didn't look at the shoes because he did manage to get them on and off we went. They are New Balance but he heals are not rigid which makes it nearly impossible to slip the sneaker over the heal of the AFO. It seriously took me over 5 minutes to get his left shoe on one day while trying to leave his doctor's appointment and I was determined to find shoes that fit after that ordeal. I had a moment of panic that I didn't think I would be able to get his sneaker on and they are too big for him to walk well with without his AFO on. His stepdad tpyically gets him dressed and ready to go for the day so I didn't realize how difficult they were to get on. Really wish he had filled me in on this. I would have got a replacement right away.

They look sharp but not worth the effort!


Getting to the store isn't the easiest thing to do having 5 children and now that he has drama and basketball after school it is even more difficult. I decided to buy online which I never do and went with the new Nike FLyease. I measured according to their website and ordered $90 sneakers. So excited to get them after all the hype. They looked awesome and were a size 6.5 which isn't too much larger than his regular shoe size. We get them within a few weeks and they do not fit at all. They won't even slide over his foot the entire way. So they are being shipped back. Total bummer. They looked awesome but total fail.


I then asked his father to grab some sneakers if he had time over the weekend. He did bring him however the shoes are a size 9 which is 2 1/2 sizes bigger than he needs. He wears a size 4 without braces. Size 6 1/2 to fit over the braces. They look enormous and he doesn't always walk well when they are too big. I like as close to his size as possible.

Fortunately I went to a consignment store over the weekend that I frequent for the kids while they had their $1 sale going on. I decided to grab some sneakers that I saw. They were Reebok size 6 1/2. I thought why not for a DOLLAR! Low and behold they fit and look awesome because they are red and black which match his braces. So after all that the $1 shoes worked without even trying them on. This is what excites me in life. Pretty sad, I know! I am just happy I don't have to fight getting his sneakers on while trying to get out of a doctor's exam room.


Once again something so easy as buying new sneakers turns into a big ordeal that takes over a month to correct. This is just life with CP.

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.

Options:


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!