Saturday, October 13, 2018

Oh these boys and their speech!

What to do with these boys. Andrew has had some issues with his speech since preschool. He was boarder line at age 4 and they did not feel he needed therapy at that time. His teachers said they often couldn't understand him so they brought a team in to evaluate him. They said he could just outgrow his speech issues because the sounds he had issues with were normal for many at his age. They informed his school and asked for an eval to be done at age 6.

Fast forward and here we are. Andrew is 6 and in the 1st grade. he had an eval in Kindergarten but they wanted to have one again at age 6. This year he failed his evaluation. I don't seem to notice his speech issues. We understand him and he self teaches if he pronounces words wrong. He even taught himself to stop saying stoon but rather spoon. He practiced in his bed one night and ran upstairs the next morning to tell me he can now say spoon correctly! This was months ago and I feel his speech has improved so much from his own doing. I think as kids we all had issues with certain words. We grow up thinking that is the way they are pronounced but in fact they are not.

So Monday I head to his school in the afternoon to attend my first meeting to approve therapy for any other children besides Brendan. It is a bit odd. I never thought any of them would need services. I have noticed Lily speaks just like her brother so I wonder if she will need it to. I guess time will tell. We plan on sending her to preschool next year. She is beyond shy and if we dare mention school she tells us that she is not going to school and will cry.

I am guessing more meetings are in my future. At least I am used to this whole process. I am glad he will get the help that he needs. He is very smart and blew me away the other night with his homework. They send home packets for us to complete and he knew absolutely everything. He knows all of his letters and the sounds that they make. It seems too easy for him. So although he has speech issues he still understands all of the sounds which is awesome. In Kindergarten he was struggling with writing because the sounds that he pronounced were wrong and he couldn't figure out how to write words out. If getting him help in speech creates less stress for him and writing to be easier then I am all for it. I think he has progressed since last year and he would probably progress on his own but I don't want him to feel inadequate or frustrated with school. It is very important for him to do well and enjoy learning.

He is an amazing kid with a heart of gold. He is sensitive and loving and a great brother. I want the best for him.

Monday, October 8, 2018

He never complains

I think I have shed many more tears than my son. I think I dwell on what he isn't able to do way more than him. I think I freak out about the future more than he ever will. I think I am the one constantly feeling guilty that he sits in his wheelchair too long, hasn't been stretched for the day or needs to take a bike ride. Brendan is perfectly content sitting in his wheelchair.

Some days I wish he had more drive. I wish he had some motivation. I wish he would ask me to get up and walk, take a bike ride, go in his stander or to go on the vibration plate. It is all me all of the time. I always have to ask or tell him that it is time to get out of his chair. MOST of the time he doesn't fight me. He enjoys working out and loves going on bike rides. Some days he isn't in the mood or doesn't want to get off of his computer but he is 15 so I totally get that!

The other night as I was thinking of 1000 irrelevant things instead of going to sleep I realized something. I realized it is probably for the better that he is content. He would be very frustrated otherwise. He doesn't mind that everyone has to help him. He doesn't mind sitting and watching Youtube for hours. He doesn't mind wheeling around instead of walking. Emotionally and mentally I shouldn't want any different for him. He has a long life ahead of him and he will most likely be in a wheelchair his entire life. I personally think if he really wanted to walk in canes or stand up he could but he thinks he can't. He has fears and he just doesn't try. As a mother I have be the drive. I have to demand that he gets off his butt and moves those legs. I have to do the work so that he gets exercise and stretched out. If I don't carve out the time I feel beyond guilty. I sleep better if he has a productive day.


This year he has actually shown some motivation. He always wants sneakers on so that he can use the bathroom on his own. He has come so far and figured it all out completely on his own. The only thing that stinks is that the wrong breaks were installed on his wheelchair when one broke this Summer and I am STILL waiting on the correct parts to come in. This really hinders him because his foot plates can not open all the way and he has a lot of trouble self transferring. I guess I should have offered to pay out of pocket for that item! It is a major safety issue but I guess that doesn't matter. (Can you sense my annoyance?) He has also gotten so much better riding his bike. He used to always want to be pushed or helped up the huge hills. But now he rides a full mile with zero assistance, even up the hills. I have probably mentioned this before but I am super excited. He actually just wheeled out of his bedroom as I was typing trying to get his own shirt off. It was only behind his head while both arms were still in but that is a start! He never dresses or undresses himself. Maybe one day he can help us out. He also did amazing at the dentist last month. He has major sensory issues and he tends to gag. He decided not to eat breakfast so that he wouldn't have any issues and he did it! He even handled a full x ray and had to stay completely still while biting onto something. I was shocked. Maybe he is more motivated than I think?!


Sometimes we battle. We yell. We cry. But no matter what we love each other and I always assure him that everything I do, I am doing for him and to make his life better. One day he will appreciate all that I have done for him. If not I know that I did everything I could for my son with Cerebral Palsy. I am just happy that Brendan is happy. He never pity's himself and he never complains. He is such an awesome kid.

Friday, October 5, 2018

Insurance, Mobility Companies and my Sanity!

Why must our country have ridiculous insurance hoops that we must jump through? Why must it take months to receive an item approved by insurance? Why do people suddenly help you when you offer to pay out of pocket?

Brendan's wheelchair had a serious issue this past week. He came off the bus with a completely broken foot plate. Not only am I still extremely annoyed that I never received a phone call, text or email regarding his broken foot plate but I also couldn't get through to the mobility company. I never even got the full story about how it broke off even after asking multiple people. The only explanation I ever received was that "it just fell off". I don't think that is possible but since no one will tell me what happened in PE that day I guess I will never know.


So my son gets off the bus with his foot dangling and my husband immediately went into Macgyver mode. I called National Seating and Mobility immediately in order to get a replacement and of course there was no answer. The temporary fix didn't last long. Tape and metal don't mix well. Later that night my husband then grabbed an old foot plate from a stroller we do not use and strapped it on with duct tape. We thought it would hold for a while but he came home after one day in school with it hanging down. The tape couldn't hold up with the pressure of his foot.

Let me tell you how frustrating it is when you call a mobility place and never get through. I called 4 times and let it ring a million times. I even tried different extensions. I finally left a voicemail and of course never received a call back. I called the next day and finally someone answered. They wanted me to bring him in to look at it so they could order the part. They said there was no way a tech could come to us. I asked if they had the parts in stock and was told no "so you want me to drive my son there (40 minutes one way) so they can look at his chair and order a part"? I was less than thrilled. We ordered his wheelchair from this company. They have repaired it, ordered parts for it and should know every detail of his chair. Why couldn't someone just look in the computer and figure out what part to order?
Sensing my tone she changed her tune and told me I can send pictures to see if *Seth could see what part he needs to order. So moments later I send off 3 pictures. I was told they would get back to me in the morning.

Fast forward to the next day. I hate seeing my son not sitting properly in his wheelchair but I had to send him off to school anyway. I receive a text message from NSM stating they can order the part based on these pictures but have to go through insurance. I am instantly annoyed. Do you know how long it takes for insurance to approve something and then for you to actually receive it? Way too long on a very important piece of a wheelchair. She said it will go quicker since they don't need doctors approval. I think a day is too long never mind the 3 days it has already been. I asked if she could tell me the exact model of his wheelchair so we could just order the part ourselves. She told me if we go through another vendor they can no longer service his chair! Seriously?! The ONLY important thing right now is to get a part for my son's wheelchair. I text back asking if I could pay out of pocket so they could order the part so we could fix my son's wheelchair ASAP. I am not sure they understood that I wanted this fixed yesterday. She text that they could get me a price quote the next day. So we wait another day.

The next morning I receive a text and now all of the sudden they have the part in stock and I do not have to pay out of pocket or go through insurance. Seriously? It took days to get to this point. I am happy they have the part. This avoids a long waiting period but with that text said "if you can come today between now and 2 pm", UM Okay that is not possible. It is almost 10 am. My son is in school and I am at work. Just picking him up is a process. So at first I am offended because basically it reads that you can have the part for free if you come today. Fortunately they could also fit us in tomorrow at the most inconvenient time, 11 AM. So my kid got to skip school and he was happy as can be. We made our 40 minute commute one way for a 5 minute fix. It is definitely not the correct part but hey his foot plate is attached again and all is well.


It made me stop and think about how stuck we are using insurance. This was his first major issue. We are still waiting on multiple replacements on his wheelchair and I am used to that. I just deal with it. I do get annoyed especially when I was told today that they have no idea when the parts will be in and it has already been months. But this was an emergency and yet no one cared. No one said hey let's make this happen, what can we do to fix his wheelchair. They made this repair sound like it was nearly impossible to pull off in weeks never mind a few days. I still think it should have been repaired much faster. I can't even wrap my head around this idiotic process. I just wanted it fixed as soon as humanly possible and I guess that did happen but only because of me. What if it was a part that cost $1000's and I couldn't just offer to pay out of pocket. What happens to people with power wheelchairs that break and can't be fixed for months? What do they do without their chair working properly? Brendan doesn't have a back up. Even if we took the one from his dads' house he wouldn't be able to be transported to and from school which would make life very difficult. I just think there should be a better way. How long would it have taken if I didn't even think to pay for it instead of waiting for insurance. What if I thought there was no other option? What if I didn't speak up and just did everything they asked me to do, wasting two days to get one simple little part? Blows my mind the world we live in right now. The first thing *Seth said to me was "oh as soon as I heard you wanted to pay out of pocket I had to do something".
Thank you, I think?


I am really appreciative that they did fix it and that I am able to skip work for a few hours on a last minute notice. Not everyone can do that. Not everyone can say sure, I can come at 11 am tomorrow. If we couldn't have made that time we would be waiting until Tuesday! Just mail me the part and I will fix it myself! Something needs to change.


Thursday, September 27, 2018

Do you always wonder if your child has Cerebral Palsy from a birth Injury?

Most of you may know my birth story. It will forever be ingrained in my brain and it isn't a happy memory. I was ignored, I wasn't examined and I was sent home after only having a non stress test all to be rushed back by ambulance with a partial placental abruption. If only my doctor or the nurses listened to me just hours before my son could have been born healthy. Instead he was born blue, had to be resuscitated, intubated (twice due to the wrong tube size) and then brought to a different hospital with a level 3 NICU.

Here is some great information to help you understand how a birth injury can effect your life forever. I know first hand because Brendan has brain damage from loss of oxygen due to medical negligence. I fought and won and am able to give my son the life he deserves. It isn't an easy process but it is worth it. I am so glad that I went through the process because raising a child with special needs is extremely expensive.


Check out Birth Injury Lawyers Alliance of Canada. https://www.bila.ca/

They created this infographic to help us all better understand what could have gone wrong.


Wednesday, September 26, 2018

2 days and 2 months from now...

In 2 days and 2 months from today I will be a mother of a 16 year old. I am not sure how that happened. How has life gone by this quickly? How have I been a mother to a child with cerebral palsy for 16 years? How have I survived the stress, grief, appointments, therapies and all of his behaviors? How have I learned to cope and love and even come to enjoy his idiosyncrasies? Somehow I have. Somehow I have made it this far. Somehow the future is slightly less scary. Somehow the tears have become farther and fewer. Somehow I have reached 100% acceptance. Somehow I have become stronger and wiser. Somehow it will be 16 years or 5,840 days of living a life that I never imagined. He won't be getting his learners permit, he won't attend school dances and possibly not even prom (he doesn't like to), he won't have best friends like I remember but he will have the best life I can give him. I will never stop doing what is best for him.

16 seems like a turning point. I remember counting the days until I turned 16. I couldn't wait to start the new phase in my life. I couldn't wait to get my license and work a job and get a car. He experiences life completely different from what I remember and that often makes me sad. I have to accept that he still enjoys life. He doesn't know any different. I think the hardest part for me is that he won't be able to drive. He has been obsessed with cars since he was very young. He has watched countless videos of 16th birthday surprise vehicles. He has a love for chevrolet. He wants to get a job and always asks if he can go get a job. He always thinks he can do things that he just isn't capable of doing, yet! You never know.

I always keep the hope. I am going to take him to get a state ID so he can still have that piece of plastic similar to a license. He is actually already set up with a company that offers services to help him get a job the summer of being 16. He will work a few hours a week at different jobs over the next years to see what interests him. He is going to get a power wheel chair so that being in the community and working will be easier for him and he will be able to do things more independently.

He acts like a total teenager and hibernates in his room. He back talks when he doesn't want to do something. Thankfully he is still a mama's boy and loves me to death, even when he tries to act like he doesn't. A smirk appears on his face and I walk away smiling knowing that he still completely loves his mom. I have learned to love most of his quirks. I have learned how to better parent him over the years. I believe you have to parent each child differently. They all react differently. They all handle punishment differently. They all certainly behave differently. He needs calm. He needs me to talk through everything. He needs me to explain what I expect and what he did wrong and I need to speak calmly but firmly. We have come a very long way and he has learned to control most of his behaviors. Although he has never had an official autistic diagnosis he definitely has most of the characteristics. Knowing this and learning over the years what works best has helped me become a better and more patient mother. My job is to help him grow into a decent, loving and independent adult. It is a work in progress but I think I am doing an okay job. He has come a very long way over the last few years.

So I have 2 days and 2 months to perfect his epic birthday surprise. We aren't telling anyone so you have to wait and see. I just hope he likes it and isn't disappointed. He is very excited to turn 16 and I have been slowly letting him know that he may not be able to drive. I decided this year it was time to put some doubt in his mind. He thinks he can just go and get a license and drive. It isn't that simple. He is labeled as legally blind. He can not read or write. I explained the test you have to take to get your learners permit but then I read you can actually have someone read you the questions. We may take him to classes and let him take the test. If he fails he fails. We practiced with on line questions on the way to the abilities expo and he actually got a lot of the answers correct. I couldn't believe it. Maybe if there is a will there is a way. I just don't think it will be at age 16 or 17 but maybe one day he will prove us all wrong and actually drive.

We have gotten through all of his siblings birthday's for the year so the countdown is on! 16 here we come!

Sunday, September 23, 2018

Boston Abilities Expo Experience

This was our first visit to an abilities expo. I was oddly excited. We really enjoyed it and spent a solid 4 hours looking and trying out everything. Brendan was a little overwhelmed. He handled it great and tried out bikes, power chairs and the chill out chair.

School has been pushing for a power wheelchair for Brendan. I knew that I wanted him to have one when he turned 18 but I am realizing he may need one sooner. In his high school they start to go out into the work force. They actually go to work for part of the week as they age so this is something he will need before adulthood. I had my heart set on the Permobile standing power chair. I wanted to see all the other options before he trials one. I am a little torn. I loved the Rovi x3. The size, the features and the look of it. Brendan did really well driving them around. One gentleman even commented that he picked it up very quickly for a first time user. I was really proud of him today. He tried everything out without any attitude. Even though he was overwhelmed he didn't break down in any way. He was transferred to many chairs and a few bikes and was amazing through it all.


We also really love the E-Fix power add on drive. These wheels pop onto your manual chair and a joystick is added. Your manual chair becomes your power chair. We love this option because the chair is still lightweight. The base doesn't change and he can still power move his chair. He seemed to like it. You can pop on your regular wheels if you feel power isn't needed like in the house. I feel this is all he really needs to get around but the power chairs do offer some features that I feel he should have.

For instance, the power chairs have seats that raise up so he can be at eye level. It was honestly amazing to look and talk to him at my level. I am always leaning over or crouching down to talk to him. He must always feel beneath everyone. Just talking to him face to face felt amazing! I know standing is extremely beneficial and he doesn't stand enough. High school really slacks off putting him into the stander even though he is supposed to stand daily. This bothers me but I totally get it. It takes a lot of time to transfer him and stand him up to begin a lesson. If he had the Permobile power chair he could easily attach two positioners, push a button and stand up. Sounds simple. Sounds like there could be literally no excuse. He could stand up to reach for things. He could stand up to talk or to simply stretch out his legs if he felt the need. The only downfall is the front wheel drive. It has a wide turning radius and the base looks larger than the Rovi x3. It didn't look large in the expo but in the classroom he would definitely take up some real estate. It is actually a very difficult decision. I need to talk to some mom's or people that use these chairs to make a better decision. I am also going to ask to trial both power chairs. I think using it for a few weeks would help make our decision.


Brendan didn't really have a preference. If we asked what chair he liked he would always say he liked his manual chair the best. I found this baffling because he has always wanted a power chair. He has used his manual chair for almost 8 years now so maybe it is what he is used to. Part of me feels the power chairs are a little overkill for him. I realize we do push him a lot in his manual. He isn't 100% independent in it. He tires or is slow so for him to keep up with us we push him. It would be nice for him to just wheel along side of us and not exert any energy.

We had to have some fun too so we tried out a really cool power assist tandem bike, huka Orion. It was so much fun to wheel around with little effort. He got to sit right next to me. He had a huge smile the whole time. he really enjoyed this bike. However the price tag is large, $8000 large! He also tested out the Freedom Concepts Adventure bike. It is the next size up for him. The largest and we placed an order! He chose red this time. He has had two Freedom Concepts bikes over the last 12 years. I guess he wanted to switch it up. I can't wait for him to fit right on his new bike. His knees are literally hitting his handlebars on his old bike. He has been using it so much so it was a much needed purchase.

We also checked out the Freedom Concepts Chill Out Chair. I recently came across the name and have been wanting to check it out in person. I have been wanting to get him out of his wheelchair off and on so he isn't always sitting in that 90 degree angle. It is super comfortable and has an ottoman. He actually has some growth in the larger chair which is great. He seemed to really like it. It has a tray that can slide over him so he can still use his computer or have a snack. He can stretch out his legs and we can even use e-stim while he sits. It has great positioning. He wanted black so guess what, we ordered one. I can finally stop complaining about him always being in his chair.


Speaking of that I need to get off this computer and go stretch and work him out!




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!