Well, it's been a rough road the last couple months. Jake, Carter and I made the big move to Indy where we have our first apartment. We are both attending school, and working, so it's been pretty stressful. But it's also been a blessing to us because we are on our own for the first time, and I feel that although we have faced some rough times, it's only making us stronger.
Carter was diagnosed with TSC...tuberous sclerosis complex in late December. The doctors haven't really told us what to expect about it, but so far it doesn't seem to be very severe.
He is still having the spasms. We are going to see a new neuro tomorrow, so we are hoping to get him on some new meds and see better results. We will be seeing a neuro at Riley, and I have heard great things about that hospital so I'm excited yet nervous. I don't want to get my hopes up too much.
As of right now, Carter is still on the Zonogran, Atenolol, and ACTH shot. The old neuro increased the Zono to 150 mg, but it doesn't seem like it's helping him much. :( He is on the last week of the ween off of the injection. Ever since we started the ween though, his spasms have came back slowly but surely which is very discouraging. I'm thinking the neuro didn't leave him on it long enough because it's supposed to be a 4-6 week process and he was only on it for 3 weeks.
I just keep thinking that "what if.." he would have been on it longer, they could have been gone for good. Unfortunately we have had some horrible miscommunication with the doctors and nurses, because the neuro didn't even know we had started the ween until he saw Carter 3 weeks after it was started. That was a little frustrating.
Now that Carter was diagnosed with TSC, I'm hoping to try him on Sabril, or Vigabatrin because I've heard that's the best med for those diagnoses. Although that med does have some serious side effects.
If we can't try the Sabril, then I'm hoping to try the Ketogenic diet or another round of ACTH injections. I really feel that Carter doesn't have much delay so far, but if the spasms persist I know it won't be good news.
Besides the medical issues, I feel that Carter is a happy and normal baby. He is still laughing and cooing, alond with holding his own bottle for the past couple weeks now. :)
He isn't making much progress on his tummy though. haha He isn't too fond of tummy time. lol
But Jake and I are going to look into the First Steps program just in case he is developmentally behind and we don't know it. Just to be on the safe side.
Today, Jake and I are trying to weigh our options of the next step that WE as parents need to take, because we realized that our aptmt isnt' located in the best area. Our aptmt was broken into on Jan. 26th when Carter and I were sleeping that morning, and they stole some pretty valuable items, but when they came in my room and found me petrified and unable to breath lol...they left...thank goodness.
I'm just really glad they didn't try to hurt Carter and I. The only thing that I'm really mad that they took was my camera, because it had over a thousand pictures of Jake, Carter, and I. Including videos of Car cooing, Jake and I's prom pics, and so on....
They could have the camera, but they should have just taken out the memory card haha. If only criminals were that thoughtful right? lol
So now, we are trying to decide whether to stay at the aptmt and make the management reinforce more security, orrrr break the lease and find a new place to live.....
Yeah, obviously we are in a sticky situation because we are broke college students...with a baby....and want to break a lease....AHHH! haha
We'll figure something out eventually though. :)
In the mean time, Carter is my main concern. I can't wait to go meet the neuro and get some better results.
Well, I will keep everyone posted on how Carter is doing, along with Jake and I. :)
Keep in Touch. Loveeeee,
Kristen
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