Sorry, I know it's been a month since my last post. I have been soooo busy trying to keep up with my sewing. Here's evidence that I'm not just eating bon-bons and watching soaps, lol!
I thought everyone would enjoy some new E pics. He has been doing well. No hospital visits and all our sickies he has seemed to recover w/o any extra interventions. Yay E!
E is up to 13 lbs 2 oz and 26 inches. He looks so big to us! He's been working hard with his therapists and has really been tolerating so much more lately. On good days, he will stand for ~5 minutes in his stander or sit in his chair for 20 minutes. Even longer if his chickens are on tv :)
And he's been doing soooo much better at wearing his glasses. I think it may be starting to click that he can actually see better with them on. That or he's getting smarter in knowing Mommy will just put them back on when he whips the off :) We're not at wearing them all day yet, but he will leave them on for an activity. His absolute favorite is flipping the song page back and forth on his favorite toy from PT. We haven't been able to find it yet, but E LOVES this thing. His teacher forgot it last Friday, so we got to play with it for a few extra days. E cried when I tried to put it in his room with his other equipment from the school. Oh well, what's a few extra days of play :)
As soon as it gets warmer we will start working more on learning a power chair. It's a little hard to learn how to roam in the snow. Once E figures out how to work a switch, we can start the process of convincing MA that he needs one. We've already bumped heads with insurance in trying to convince them that he's almost TWO, even though he is the size of an infant :(
Anyhow, lots of uphill battles and appeals coming our way. But we have lots of great therapists that are working hard as advocates to get E what he needs.
We have a busy week again. Tuesday is E's MRI & appt w/ the neurosurgeon to follow-up on his hydrocephalus. Wednesday we go back to Mayo for a GI follow-up. So lots of prayers the appointments both go well and E doesn't find any GI bugs in the meantime.
And no, he's not taking anything by mouth (other then a little juice from an eye dropper). We gave him a cup to try and encourage him to try it. But E thinks it's just a "bang bang" toy!