It was Thanksgiving day back in 2002. I was only 23 years old and my life forever changed on that day. I had a placental abruption and Brendan was born at 33 weeks. He lost oxygen during delivery due to incompetent care but was a fighter and turned 17 this year. My journey in life over the past 17 years took many turns I was not expecting but I try to stay strong and have my husband by my side even when I am not.
Tuesday, January 25, 2011
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.
Monday, January 24, 2011
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.
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.
Tuesday, January 11, 2011
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!
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!