New School Visit!

Well I was impressed!! This school is amazing especially for a public school. I knew we lived in a great town but I never expected the school to look the way it did and have everything a disabled child would need. I had my hopes up and they were surpassed. The school was completely renovated and reconstructed. They have seperate OT and speech classrooms along with a large sensory and PT room. He will only be in the all inclusive for around 3 hours a day. He will be with typical 1st grades for science, social studies and everything such as music, art, gym... I am very excited for him to start in this school. His new teacher is young and energetic. They have computers in the room and one is a touch screen. Brendan already tried that out as soon as he saw it. The have a handicap accessible bathroom off their classroom and access to the playground. It is designed very well and I am excited for him to be with typical peers more because that is what he needs. He went to visit the typical 1st grade classroom and everyone stared since he wheeled himself in but they all said hello and smiled. One boy said "that's a wheelchair" and a few children walked up to him and talked to him. I think he will fit in just fine! He was shy but soon he will show them his personality and everyone will love him as everyone always does.

Big Boy Underwear and a New School!

Yes Brendan is 8 but he wets the bed constantly. That is until recently. He has worn pullups to bed for years. I realized I couldn't remember the last time he had an accident and let him wear his underwear to bed last night. He woke up dry! He was very proud of himself. Lately he keeps asking me why he needs to wear a diaper as I put his pullup on. I explain it isn't a diaper and when he can stay dry he can just wear underwear. I am very proud of my boy. I am excited for him to be growing up and becoming more and more independant everyday. He is so smart and has a drive to be like everyone else. GO BRENDAN!

Random: Brendan's speech is really coming along. He is creating very complex sentences and thoughts lately which is different for him. The other morning he said to me: "Mommy my belly is telling me it wants to eat" It is hard to believe that my child who could only say a few words 4 years ago can say something like that! I never really knew if or how he would be able to communicate but I have no worries anymore!

Brendan is switching school systems. Since we just moved and I am quitting my job to be with him after school he is switching mid year. I was hesitant at first but honestly he isn't getting the best of anything where he is going now so I think in the end it will all work out. The special Ed team seems very nice. They are personable and call you back and are easy to talk to. He will be in a classroom with 8 kids instead of the 4 he is with now whom of which are ALL non verbal! That is a whole other blog :). I am excited for him to be around children that will motivate him. He loves being the only verbal one because no one denies him line leader every single day but we all know he needs to be pushed. He can be very lazy if you let him so he needs to want to be like the other kids. No offense to the non verbal children out there. I love the boys in his class. Brendan loves them but he also needs to be with children who are communicating with him. He thrives on his sisters and I know he will thrive with a more interactive classroom.

We are starting a very new chapter in our lives and it is exciting. I think the whole family will benefit from all of our changes and we are going to be happier and closer. Life can be good.

New house, New procedure, New Hopes!

We moved into a new house a few days after Brendan's 8th Birthday. He LOVES it. We ended up buying a two level house but the 1st floor is completely accessible for him. He has a bedroom and bathroom on the first floor and can wheel his wheelchair all around without much trouble. He is in heaven. I never knew this boy would love his wheelchair so much and feel so much more independant. At first it was really strange when I would turn around and he would be right behind me or when I would be sitting on the couch and I would see his little head coming around the stairway. I have never seen him so happy, so proud, and so mature. We are planning on staying here for a very long time. We have built two ramps for him on the outside of the house which will give him even more freedom and save our backs! We love our new house. It is cozy and just feels like home.

I don't think I ever stop thinking or researching for my boy. His father sent me a video about this little girl who had a procedure done called PERCS. I thought about it, forgot about it, asked his neuro if she had heard about it and kind of put it in the back of my mind until recently. I tend to put things off when I don't want to deal with them. I did have some excuses to wait since he had hip and heart surgery this year but the time has come. PERCS recently popped back into my head and I realized I just needed to call and schedule an apt. That is how I roll. I have to just do it and I did. So we headed off to NJ to see Dr. Nuzzo this past Sunday. We took the whole gang and made a night out of it. We took the kids swimming in the hotel pool and then all went to see this new specialist yesterday.

During our trip I was able to meet my friend Karen and her son who also has CP. We have emailed and text for many years. It was really nice to finally meet each other. Our boys have a lot of similarities and are both super cute!

The Dr. apt went well. Some fears were confirmed such as his left hip is going out of place. I have feared this since the right hip osteotomy. That is one surgery you do NOT want to have to go through again. I knew the Dr. was going to tell me that because I looked at his xrays. I tried to pretend I didn't see it but I did. I am familiar with a hip that is out of place since I saw his right hip for years before we went ahead with surgery. The good news is the Dr. believes if we do this procedure he won't need the hip surgery! It may be worth it just for that! :)

PERCS is a type of tendon lengthening. This Dr. performs it less evasively and can perform multiple lengthenings at one time such as hamstrings and heal cords. Dr. Nuzzo also explained that Brendan has cross reflexes. If you create a reflex on his left leg his right leg responds. He said this happens in the muscle NOT in the brain and it is fixable! He said Brendan should respond very well to this and should become more mobile. He will also give him a better range of motion along with the releases. The Dr. said his muscles make his legs do things his brain isn't intending which makes things like taking steps that much more difficult. He should walk better because he isn't constantly fighting odd urges that his muscles make him do.

I am obviously excited and nervous. It is never enjoyable knowing you are going to make your child go through pain. I can't even understand what he goes through since I have never needed surgery. The most I have ever had done was a stitched thumb and my wisdom teeth out. I just have to look torwards the future. I have to believe this will open his future even more. He will be in less pain and be able to sit easier and walk better. Why wouldn't I do this for him??

So we will schedule this within the next few months. I tend to go by the book with him and do everything his Dr.'s tell me but this time I am going with my gut and trusting a Dr. who isn't widely known and who can't get his work published. I am going out of the norm in hopes that my son will reap the benefits.

I think I am getting used to these very difficult decisions. I have learned so much over the years and become stronger than I think I have realized at times. My son is the strong one. He is the trooper who always comes out smiling and never asks "why me?" He deserves a medal for everything he has gone through but he just goes with the flow. He trusts his mama and he knows how much I love him!

Happy Birthday My Sweet Boy!

Brendan turned 8 a few days ago. It is so hard to believe that he is 8. He has come so far over the years. When I think back to when he was a few months old and were realizing something was wrong I could never envision my son as he is today. He was basically blind, he never stopped crying, and he had a very hard time sucking on a bottle. Now he can see my face and recognize me, he is a happy child with so much to say and he can eat a pound of turkey if you let him!

He is very excited to be 8 and be a big boy. Apparently 8 is so much bigger than 7. He loved celebrating his Birthday. He gets the biggest grin on his face when you sing to him. He was able to see his cousin who came for a visit from the Army and I don't think that child could have smiled any larger when he saw him. It was the cutest thing I have ever seen. He received a power wheels jeep for his birthday. He wanted a go cart but we didn't think the neighbors were going to appreciate that so power wheels it was. Well Brendan calls it a go cart and absolutely loves it. He just drives around with this ginormous smile and that is what life is all about..happiness!

I had a dream last night Brendan got himself out of his walker and ran across the gym. I love and hate those dreams. I love them because I get to see my child walk or run but I hate when I wake up and realize that it didn't happen. Often times in these dreams I dream that I wake up and it was real so it is very confusing when I really do wake up. They always feel so real. I am very happy my boy can get around in a walker but I just want to see him stand up straight for once without him having to hold onto anything. I want to back up and just look at my boy and see how tall he is and what he looks like without all that equipment around him. Maybe one day.

For now I am happy for everything that he can do because it is impossible to predict and envision what your disabled child will be able to do and what they will overcome. Brendan has overcome a ton already and he is only 8. I am looking forward to see what the next 8 years will bring!

Casts off today, ADHD meds, and a Birthday is coming up!

Well we made it again...another 3 weeks and 2 days in casts. He was a trooper. He hardly ever complained. It was almost like he wasn't even wearing them. He is happy about them coming off today!
Not too much to update. His speech is really coming along lately. He is talking in full, complete sentences and using new words daily. He is pronunciating many words correctly now. I can tell more and more people are understand more of what he says. His sister answered him in the car yesterday and I was surprised she knew what he had said. I guess she could be used to his speech as well but usually she is like WHAT BREN??.

His ADHD meds have been helping and I have been getting positive remarks from his teacher and therapists. He is actually working hard in school!! I think he is excited to be able to concentrate more and get the positive feedback.

Only 17 days until Brendan turns 8! It is very hard to believe he is going to be 8. I think I say that every year! :) He is very very excited about his birthday and he just says he wants presents so he is not very helpful with gift ideas. He is loving his geo trax train and pixar cars can ride the tracks too so I got him mater. He already has two others but it is one of the only toys he plays with. He wants to make his own cake this year. I will have to let him because he has been asking for months. I will make one as well but I have to let him try to make one all on his own. He will enjoy it!

Botox, CoCO Keys, Serial Casts, and a new Wheelchair!! OH MY

Well the fun never stops in our house! Brendan had another round of botox treatments done last week. He was a trooper as always but was very nervous this time. He didn't want to be put to sleep and he was crying but the Dr. calmed him down and side tracked him with some bubble gum scented anesthesia..yum! I had to leave my boy under someone else's care as I often have to do and wait. I am very used to waiting at this point! It always takes longer than you would expect but they called and everything went great! He did not want to wake up BUT I think that was a good thing because I just sat next to him while he slept it off for the next 2 hours and he was NOT cranky when he woke up AND HE NEVER THREW UP!!! This is the first time in years I can remember him not throwing up after anesthesia. I think we were both happy about that!
The following weekend we took the kids to CoCo Key Water Resort for some fun! The kids had a great time but let me tell you that my 44lb boy is not light! We like him to be able to do the same as the other kids so we carried him up 4 flights of stairs along with inner tubes to go down the water slides. HE LOVED IT!!! He was so excited because he had to go down all on his own. Every single time he came out the bottom he would say " I did it all by myself". He was so proud of himself. He didn't fall out once and would just sit in his tube at the bottom and wait for someone to help him get out. It was a process but so worth it!! He loves doing things every other kid does!
Only 2 days later it was time for serial casts. He was nervous going in and wasn't thrilled about being casted but a pretty girl named April starte talking to him and that just turned his whole personality around and he was amazing through the entire casting process which takes over an hour. He also got fitted for his new wheelchair that day. I have never seen a child more happy about getting a wheelchair which sure does help my sprit. I never wanted to order another wheelchair for him but the day came where I knew we had to. :( He got to pick the color and blue it is! He is not too bad at wheeling it around considering his right arm and hand are much worse off. It is hard for him to go straight but if you just leave him in a room he is able to manuever all around and he always has a great big grin on his face! I love seeing him happy. He always has to go through so much in his life and he always handles it with ease. He makes everything easier on me just being him! Love ya buddy!!!! I will post pictures soon!

Brendan started a new school

Well my son always amazes me and he has done so yet again. He transitioned perfectly. He was so excited to go to a new school and start first grade. He was all smiles as you can see from the picture. He did not cry, whine, or have any anxiety. His father and I brought him for his first day because the school was not exactly ready or prepared for these students just days before school started. That could be a whole other post!! He just wanted a hug and off he went with a new PT down the hall to use the restroom. I am so proud of him.

He had a fun but difficult summer. He had hip surgery and a heart procedure and yet he takes everything in stride and still exubes happiness and joy. He has made a friend already, Evan. He loves Evan. Evan is wheelchair bound and doesn't speak but Brendan took to him instantly. He wants to stand in his stander next to Evan, sit next to Evan and he is constantly watching out for him. Sometimes Evan's head falls down and Brendan yells to his teacher's "Fix Evans head!!". He is the sweetest little boy. I think he will make a good husband one day...watch out ladies!! :)

I wish we had a break from procedures but that never happens..Botox is on for the 5th of October, I am scheduling for him to see a new professional to assess his vision in Boston, and trying to figure out how to get him assessed for a rather new lasor treatment for tissue release. There is alway something to do and research and debate on doing but I will continue to do everything I can for my little boy. He deserves that and so much more.