Pure Madness

things have just been crazy lately. We are still trying to move and have finished most of the home improvements we wanted to do before we moved in, and of course we were doing it all ourselves. Mostly cosmetic like new trim, paint, carpet and we are converting an extra room into a walk-in closet / laundry room and Robert just finished rewiring the electrical to support the dryer. I must say, I was pretty impressed that he was able to figure that out, and he was too. We've slowly moved some stuff in and we got our new TV setup along with internet and phone. Its just been really difficult because since the holidays, we've only had a couple hours a night to do anything by the time Robert gets home from work and then we have to get the kiddo's back to our old house to do the bedtime thing. But this weekend we are supposed be doing a big push and getting all our big furniture over there so we will start sleeping there this weekend which is really exciting.

These kids have been a handful. Margaux is about as easy as an infant can be, but she still needs to nurse and I feel like she doesnt get as much attention as she should because so much of my energy is focused on Paxson. Paxson is doing pretty good, he got his mickey button put in last weekend to replace the big feeding tube sticking out of his stomach which is awesome because it works really good and we aren't worried about where to tuck his tube all the time. At the same as that procedure we did another endoscopy to check his tummy and esophagus. Both looked good which means his allergies are all cleared up and we can start introdcuing solids again, we'll probably start with bannanas and I hope he likes it!

Lately we've been struggling with a new type of siezure. His kissy face is almost completely controlled with his new meds and we had a brief couple weeks were everything was perfect, he was so happy, no seizures, sleeping great. but lately something is going on that is affecting his sleep. His siezures have always been worse when he is tired so he's had challenges falling alseep and if he doesnt sleep it just gets worse, so its kind of a vicious cycle. Lately his body had been getting really stiff for approx 10sec and he just screams, then it passes and about 15 sec later is happens again and the only thing we can do it cuddle him really tight which seems to make them pass quicker but it is very time intensive and its hard to leave Margaux alone for 30-45 min while I try to get Pax to take a nap which sometime works and sometimes doesnt. Mostly its tough because it is so hardbreaking, but we are tweaking his med combination and hopefully we will pass through this soon. The one sure thing with Paxson is that he's always changing and as soon as we thing we have something figured out, its something different.

On a positive note, he is doing awesome right now and he is sitting in his beanbag and bicycle kicking like crazy which is the cutest thing because he gets really excited and proud that he can move his body.

With everything going on his manual ABR has been pretty much nil, but I'm trying to do even get a few minutes here and there so I dont forget everything completely. We are planning on going to our next Satellite in May or June but we haven't decided which location yet. We are still using the machine almost every night and the most recent exercise we were focusing on was the Lumbar. and I'm very excited to report that his PT recently said that his lumbar was getting stronger and she was seeing improvement in his core for sitting... I was so happy because we didnt even tell her about the machine exercise and it is always nice to have that validation.

I'm still on maternity leave and am planning to return to work at the end of Feb. working 3/4 time. Before that we have planned a 2 week vacation in Hawaii and its funny because I think I am most excited about just having Robert around for 2 weeks with no house stuff where we can just focus on the kids. We have some other family going over at the same time so that should be fun - we'll post pics!