October 19 - We went to the physcial therapist today so Will could be evaluated to determine his elligibility for continued SSI. We got good news and bad news. The good news is we're still elligible, which covers his medication for apnea that our insurance doesn't, along with most other costs not covered by our insurance such as co-pays. We don't know yet how much coverage he will get, he may also get a stipend which would be very helpful since I can't take him to work with me or put him in daycare so can't work. The bad news is that he has some problems I didn't realize. He's developing some asymmetry, where he turns his head to the right all the time so we need to try to get him to turn it to the left or to physically move it to the left to maintain his range of movement. The therapist thinks it may be due to some vision impairment, that he sees better from the right eye. His pupils are different sizes and his eyes are slightly out of alignment, which she said is common with ROP and she was surprised the opthamologist isn't following us more closely or didn't refer us to someone else after the main part of the ROP was resolved. He's also not responding to sounds or visual stimuli as well as he should be. He doesn't look for the source of sounds unless they're right in front of where he's looking anyway, he doesn't track moving objects well and is quickly overstimulated by both sights and sounds. Not uncommon for preemies. He is doing very well physically though, he's doing half push-ups, scooting around the floor flat on his tummy like a turtle (he doesn't get far, he'll go maybe a foot before he gets frustrated) and has rolled over a couple more times front to back. He's doing better than expected there. So we may be going to therapy for feeding difficulties, seeing someone about his vision and physical therapy. They should get back to us in a week or two with suggested treatment.
He has some irritation from his monitor belt and his hernia is still icky. Looks like he won't be getting circumcized too. We wanted to get it done, but they don't do it at the NICU. I was referred to another doctor, who told me they don't do babies over 6 weeks (he was almost 10 when he came home) and was referred to a urologist. They said they don't treat under 18 months, so shuffled me on to a pediatric urologist who told me they can't even do a consultation until March and then our insurance doesn't cover it. The cost would be well over $3000 and we simply don't have it. I don't believe in waiting till that age anyway. I had mixed feelings even waiting this long, so I'm a little relieved, but a little disappointed and annoyed too. I assumed it was a matter of course thing that would be done before we left the hospital, just one more little thing that prematurity messed up. Can't just be easy, can it?
I sent my first breastmilk donation to the milk bank. An entire cooler full of little frozen bottles, and my freezer is still half full, plus most of a chest freezer at the neighbors (I borrowed space where their steer is going to go soon) and some at my dad's too. They better send the cooler back soon! Taking some pride in that, at least some good is coming of all the work I spent pumping while he was in the NICU, the milk bank pasteurizes it and sends it to needy people. Some goes for other preemies or needy babies, or for other uses such as burn victims or cancer patients. I've heard they even use breastmilk to wash donor organs. So cool stuff, much better than tossing it in the trash.. I would have pumped anyway, to keep the supply there for when he's ready but it's nice knowing that it's going to be used for a good cause. I have so much surplus frozen he'd never be able to eat that much before it expires.
We're going to his regular doc for a check-up tomorrow. Anyone want to guess his weight? He was 9 lb 4 oz last visit..
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