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Monday, January 26, 2009

The new braces he has to wear

Brendan has been wearing one knee immobilizer every night. It hasn't been too bad I alternate the leg and give him a break once a week. He usually sleeps pretty good with it on, sometimes I have to take it off in the middle of the night. Some mornings he wakes up crying and tells me it hurts so I just take it off and stretch out his leg.

So NOW Brendan is supposed to wear TWO knee immobilizers AND a hip adductor while he sleeps. It is awful. The knee braces are these long black foam things that I have to velcro around each leg from right under his hip down to his ankle. The have supports inside that go down his leg on both sides of his knee to keep his leg straight while he sleeps. I hate putting them on especially when he points to his leg and says "break tonight?" and I have to say "nooo not tonight".

After I get both of them strapped on I have to put this triangleular type pillow between his legs which straps around each leg. :( It is awful. How can anyone sleep like that? Not to mention his legs are always bent (which is why he needs the braces on) so he probably has leg spasms all night. He can't always communicate everything so I really have no idea not to mention he has been in pain since birth so he is used to the pain.

He didn't make it long the first night so I took everything off accept for one brace. I felt so bad for him which doesn't always help! So the next night I put on two braces which he made it until around 10:30pm and then I took one off. It doesn't help when you come upstairs to check on your child and he is laying there awake so you ask him if he is okay and he says "my brace hurtin me". It kills me!

DH said I have to leave both on for an entire night or he won't ever get used to it! I cried of course because I know I have to and the pity thing won't help him in the end.

So now I need to keep both on for an entire night and then add the hip pillow.

Life can really suck for him sometimes and that is why SDR sounds better and better all the time!

Friday, January 23, 2009

Decision has been made

We have decided to go ahead with the surgery. He does need to be a candidate but I really have no doubt that he will be since he was when he was 3. I am filling out all the necessary paperwork and sending a video of Brendan to Dr. Park out in St. Louis and then we go from there.
Brendan is having another round of Botox injections on Feb. 12th. They will be injected into his hamstrings and right below his knees. I am also going to ask for a small amount to be injected into his right arm because the last time he had that really helped him gain mobility in that arm which he has maintained! :)
He will most likely be casted (right hip to ankle) after this round of botox to help his right knee contracture. He has to wear knee immobilizers at night now (on both legs) because his knees are becoming very tight and stiff. He also has to wear a pillow (strapped to his legs) that goes in between his legs to keep them apart while he sleeps. I have no idea how he can sleep like that but the kid just does! He is amazing....
So I have a lot on my mind and this surgery is really weighing heavy. I just have to hope for the best and maybe one year from now I will be posting that Brendan has taken his first independant step at the age of 7. Now wouldn't that be the best blog ever?!?!

Tuesday, January 6, 2009


So Brendan's father and I are trying to decide if SDR (Selective Dorsal Rhizotomy) is the right choice for Brendan. His father is all for it while I am nervous about it. It is not something you can take lightly. It is major surgery. Spinal surgery! I don't even know how I have gotten through all of Brendan's surgeries so far but I have so I know I can do it. :)

I need to for him. I know he will want to walk unassisted one day. I know he will want to look 'normal' and be like all the other boys. I know he won't want to rely on me every day (even if he loves it right now) so I need to do this for him. I know that but it doesn't make it any easier. I wish he could just say " Mom I want this" but he can't. Not yet anyway. How do you put your child through all that pain when they can't really understand why?

So that is my dilema right now. Life can be challenging that is for sure.