My little trooper

Brendan had eye surgery to fix his strabismus in both eyes a week ago. He also had another round of botox injections. This was the shortest amount of time in between injections and I don't see the drastic improvement as I have before. His eyes look so strange now. It could be that the inner corners are still blood red and they cross now instead of drift outward. But that is all normal and his eyes should adjust and look great in a month. He was such a trooper going in for surgery. I explained that he was going to have surgery on his eyes and that he would be at the hospital and he asked "am I going to sleep there?" I said no you will come home a little while after. He said "no I want to sleep there" I asked why and it was because his Pa was sleeping at the hospital. Too cute. He was smiling and walking and chatting it up with all the nurses prior to surgery. 6 hours later I was loading him into his dad's car and he said "can I have a snack?" I was like yup he is fine!! :) He is just such an inspiration. Nothing gets him down. He is happy and funny and enjoys life with all of it's challenges.
We had the Dr. inject botox into his right pecs and other arm muscles this time. He has limited use of his right arm and hand. He uses it to assist his left arm but that is about it. Long sleeve shirts and coats are very difficult to put on and off so I am hoping we see results from this. He already seems to be less rigid and can raise his arm higher than ever before. No need for a long sleeve shirt yet but maybe I should just try it to see the difference :).
So my son just amazes me all the time. He is going to do just fine in life. I can see that already.

A difficult year so far...

We have had a tough year. My father almost died after his heart valve transplant and my grandmother just passed away. She had lived with my parents for 2 1/2 years. It has been a very long 4 months since my father's surgery but he is improving slowly. He is just always exhausted, just from walking, and his heart will never fully function like it should. It is very sad to see and it was a very traumatic experience.

Sooo after that I couldn't put Brendan through SDR. I was fully prepared and ready to go through with it but then after almost losing my dad and watching him in a hospital bed for over a week before even waking up was very very hard on me. We didn't know if he was going to pull through and it just makes me think that anything can go wrong and what if Brendan doesn't wake up? I can't imagine anything happening to him so I just have to regain my strength for this difficult surgery. I need to be the one on board 100% and fully prepared for this to emotionally handle the surgery and the post care so the decision weighs on my daily.

On a lighter note Brendan is having a great year. He had botox in Feb and after being very weak for a month or so he has gained a lot of strength and looks great in his walker. He is walking longer distances and seems more confident in it. He turns all over the place and runs down hills in it. It is great to see. He loves being independant. He went swimming all by himself for the first time. We put arm floaties on him and in the pool he went with his stepsister. He floated around the pool 3 times and had a smile on his face the ENTIRE time. It was a great day and I am so glad my hubby talked me into it...I'm a little overprotective-haha. :) He is sleeping well with his braces and even has a new brace that he wears when he is with his father. It is made out of the AFO material and it goes from his hips to his ankles. He legs seem much straighter during the day after he wears it and he seems to be less rigid. So all in all I am happy with his progress this year. He is always smiling and joking these days and is talking up a storm. He can drive me nuts with all his questions but we can have conversations which I treasure. He seems to pick up more words and speak longer sentences by the day. He always makes me so proud!

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!

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?!?!

SDR

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.