Made It Through

Just a quick update to let everyone know we made it through the weekend... not without a trip to the hospital on Friday, but at least it was not for the shunt! Lucas was really "off" after this surgery on Tuesday, he didn't quite bounce back right away like last time. He was very cranky and his eyes were rolling around a lot, unable to focus, moving left to right (called nystagmus), and the right eye was still continually dropping. After leaving Dr. Yaun not-so-positive this time, it was really unsettling. We got through Thanksgiving, then on Friday morning he was cried a lot when I laid him down (which every time he's had pressure, he hates to lay on his back). So... we were off to the ER again, ehhh.

After the "shunt workup" of a CT scan and five xrays, they determined the shunt was working well, and that everything appeared smaller in the ventricle and the cyst that was giving him problems appeared to be draining. So, then they figured out he had an ear infection. Ahhhhhh, what a relief! That would explain the pain lying down, and could be contributing to the nystagmus. But he didn't have a fever and wasn't particularly messing with his ear... who knew? I have never been so happy to hear that, I could have skipped out of that hospital with my discharge paperwork. Actually, that was the first time in awhile that we got to leave and not be admitted. I had my bag of overnight clothes in the car and everything, convinced we were in for another one.

It took a couple days, but today he finally seems happy again. I just hope it stays this way and the shunt keeps working. I've said it so many times, he's such a well-mannered child and so happy... just imagine what he'll do if we can get rid of all the pressure once and for all! He's really never had a healthy CT scan, there has always been something not right. Maybe now we can finally move on, and also gain some weight. He has lost an entire pound in 6 weeks dealing with all of these surgeries. That's a lot when you're only 18 pounds to begin with. And babies aren't supposed to lose weight, he needs to be gaining quite a bit to catch up, not losing! I'm still paranoid about them wanting to put a G-tube in or NG feedings to make him gain weight, I've heard of other parents having to do this when their child is this old, as a final effort in helping their development. He sees the GI doctor tomorrow, hopefully she'll cut him some slack for the last month and give him some extra time to catch up. Today he finally ate well again, so I'm hopeful.

We had two more Anat Baniel therapy session today, she said she scan feel a big difference in his chest and he is showing some new mobility. So exciting. And he loves it, he talks non-stop during the sessions. I've never heard him babble quite as much as he does while he's getting this movement therapy. He made kind of breakthrough tonight, finally pulling his left arm in on his own and recognizing it there. He was chewing on his left thumb at the end of the session (which he never does). Carla is recommending constraint therapy for his brain to start recognizing his left arm, which is what we've been talking about anyway. He has a multitude of mobility issues, but his brain not recognizing the left arm as a tool that he can use really hinders learning to move through developmental phases like a typical baby. As I said before, I need to sit down and write to explain this a little more, which I will. We decided we are going to postpone his PT sessions from Early Intervention for a few months to give this method a chance. The problem is, they counter one-another and we could end up hindering his his progress with so much stretching and pushing from PT. PT exercises have unfortunately made him very rigid, causing many problems... but the Anat Baniel method (similar to Feldenkrais) is all about being fluid and learning movement in your core before you can ever move to the next step. We are basically starting over with him, but the promising thing is there are changes happening.

Oh yeah, one more thing... he finally has his top two teeth breaking through today! I thought he was going to be toothless forever! Everyone I know with much younger babies have 6-8 teeth. He has one and a half, and the larger one still isn't all the way in yet (and it started in May)! Hopefully these won't take as long to come all the way in. I think its going to be pretty cute.