Has it really been almost a month since I posted?!?! I guess I can use the excuse that life has been crazy lately. We have made several trips to UVA for routine appointments and Jonathan had surgery with a 6 day hospital stay. Jonathan is finally on the road to recovery. He still isn't able to work so he will be off for a few more weeks at least (if he doesn't go crazy first).
Brenden had an MRI last week which was the first since his surgery back in May. I'm really not sure what I expected when we went back to get the results today. Part of me was nervous, while the other part was optimistic. I guess we ended up somewhere in the middle. The cyst along his spine is still there. No bigger, no smaller. Dr. Jane thinks that there is just too much scar tissue from the closure surgery at birth which makes it impossible for the fluid from the cyst to drain. Since it isn't any bigger, we are going to sit tight and watch closely.
The location of the cyst could put pressure on the spinal cord which would affect Brenden's ability to use his hands/arms so it will be noticable if changes occur. We will go for MRI's every 6 months to make sure it's not growing. If at some point it does start to grow, there are a few options for treatment. However they are extremely risky and Dr. Jane has high hopes that we don't have to cross that bridge, so for now I will refrain from explaining the procedures that would be considered. So answered prayers in a way....no more surgery for now and at least the cyst is not growing.
The MRI also made sure the shunt was working properly and of course it is. For so long, the shunt intimidated Jonathan and I. We always worried about something going wrong with it. But now, it seems so insignificant compared to the other things going on with Brenden's spine.
Brenden is making a lot of progress across the board. He does great with his walker.....but only when he wants to. At times it is a battle of wills.....he's just about as strong willed as I am so there is often much frustration and usually, I win and he ends up walking however far I have asked of him. I really feel that this will be just like every other milestone. When he is good and ready to do it, he will. We have started talking about getting his first wheelchair which is a bittersweet thought for us. While it will give him the independence he so badly desires, it will also be tough for Jonathan and I to accept.
When Brenden was born and we learned of his diagnosis and everything that went along with SB, it seemed like the only thing we worried about was if he would walk or not. Now, two and a half years later, we have realized that walking or not walking will not define him as a person nor will it hold him back from becoming accomplished throughout his life. Sure, we want him to walk, but it's not the end of the world if he doesn't. Do I believe he will walk....yes, deep down I do. But I can also accept that he may be able to walk short distances and need a wheelchair for longer distances. We will start the selection and measuring process after our first meeting with his preschool, which is in October.
Yes, I said preschool!!!! We will meet with the school to begin the transition process, which will officially happen when he turns 3. While I know it will be GREAT for him, it will be hard for me. I've taken care of him since he was born, I've been there for his therapy, and never had to trust him in the hands of strangers (except doctors and surgeons, I suppose). But I know he will rock it....I'm sure he will be the class clown, but also the one the teachers love. Having to say goodbye to his therapists will probably be just as hard as driving him to his first day of school....and I'm already crying as I type this! His therapists have become like family. They have been with us through so much. They have been some of his biggest cheerleaders and without them, Brenden would never have come so far. Ok, I'm done with that cryfest....we still have 5 months to dwell on him going to school......
Madelynn....well she makes me laugh. Jonathan and I have decided that she will be our devious one. Brenden will be the brains behind the scheme and she'll be the one to actually do it. She's cruising along the furniture, climbing, and is seriously the happiest little girl I know (unless she can't find her binky)!! She LOVES her big brother and laughs at anything he does and he of course just soaks in all the attention she gives him!
Ok, well that was a marathon post......and I have no new pictures :( Soon, though!