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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!


Sheila said...

Congrats on the new home - it sounds awesome! And good luck with the new surgery! How exciting (and scary, I'm sure). I'll be watching for the updates!

Amy said...

Congratulations on the new house. It sounds great. I have read about the Nuzzo surgery, and I am impressed with what I have read. Good luck with it. I cannot wait to see how it helps him. I have considered this for Emma too. Not sure she is a good candidate though.

I really like his wheelchair, and I am so glad he likes it too. I need to get one for Emma. I think she could learn to wheel herself around like Brendan one of these days. What kind of chair does he have. I love how you can tell it is helping him feel more mature and capable. I know my Emma needs that. Plus, she is getting sooo heavy. She has chair already, but she cannot wheel herself in it. Any suggestions would be awesome. Brendan is getting so big, and I loved that he got to play Twister.

Day by Day said...

Amy, I will have to look up what kind of wheelchair he has. It isn't coming to me right now. He is doing so awesome in it! He absolutely loves it and he can wheel around the entire house. It is great to see. :) If you ever want to email I am I am not so good with the blog and learning how to message people back!

April said...

Lengthening is a good option. I had it done a few weeks post-SDR to repair the damage from spasticity.