I’ve created this blog with the hope that it will be a better way to keep everyone updated on how Maria is doing. In particular, the goal is for more frequent updates, particuarly for the extended family/friends network who don’t talk to me and Cathy as often. This first one will be a lengthy one since it’s been so long since we’ve updated everyone.
She still has the feeding tube in. She pretty much refuses to take milk at all. We’ve been experimenting with sippy cups and straws (under the care of yet another feeding therapist) and having some luck with that. We’ve pretty much given up on the bottle since she’s not that far from weaning at this point anyhow. We’re trying to get her in to see a gastroenterologist since it seems that something is going on in her tummy. She was on Zantac for a while but that made things much worse (more spitting up, more fussing) and when we quit she got better. She’s still good with solids and is getting better at sucking the food off the spoon instead of us shoveling it in. With the tube in, she’s getting her hydration and calories and she’s over 21 pounds now. The feeding thing has been pretty much dominating our time.
This is further complicated by the fact that the nanny Cathy hired quit. Cathy mentioned that she (the nanny) was having some problems with her pregnancy. Well her doctor told her she had to quit working right away, so she quit with several hours notice. The nanny agency has sent out two more candidates: a young girl who was obviously uncomfortable with handling a special needs baby, and a woman with quite a bit of experience who kept flaking out on showing up for the interview and the “test day” where she spends the day taking care of Maria while Cathy is there to observe. I think we’re pretty open-minded on nannies, but “showing up” is kind of an important quality! So the search continues.
Unfortunately the nanny quit right at a time that Cathy was getting hammered at work, I was getting hammered at work, taxes were coming due (I had to do mine, Mom’s, and Mom’s estate this year), and so on. So April was a fun month.
She had an MRI last week, and everything is still perfect. The biggest news is that, as of a couple weeks ago, something really seemed to click in her brain and her vision and hearing dramatically improved. She reacts to sound more. She looks at things when touching them instead of looking away. That’s a classic symptom of cortical vision impariment: they look away from an object before reaching out for it because their brains just can’t handle all the information. She also looks at faces more — another symptom of CVI is that faces are too complicated for them to handle so they tend to look away. She loves to watch me talk and while I do she reaches out and grabs my lips and cheeks trying to figure out these noises I’m making. She’s babbling more. She quit clearly says the words “Mom”, “Mommy” and “No”. Now the practical side of me has to mention that she doesn’t actually use them in context (like saying “Mommy” when she sees Cathy) but the proud uncle in me quickly dismisses that.
Her tactile sense is better. She loves to be scratched, especially under the tape holding tube in. Unfortunately she seems to have figured out the whole “if it itches, scratch it” thing so frequently scratches at the tape. She is also fascinated by vibrating toys, whereas before she was pretty indifferent to them.
Her physical development is still lagging. She is nearly ready to turn over; we’ve been saying that since, what, Thanksgiving? But this time for sure…
She had really bad sinus congestion for a couple of months that were never were able to figure out. The problem was that we couldn’t put her down on her tummy because her sinuses would fill up instantly and she’d fuss. Now that the congestion is gone, we STILL can’t put her on her tummy for long because she rubs her itchy face against the blanket, and I’m pretty sure it upsets her stomach more. She spits up more on her stomach. So that’s put another monkey wrench in the physical development. Cathy and I mostly work on helping her with sitting up.
She still sees her many therapists. I think we are up to five now: physical, occupational, speech (feeding), hearing, and vision. One of the state agencies involved with this program has a proposal out that would pretty much gut the program. All kids would be limited to one therapy session a week no matter what. So rather than getting five hours with five specialists every week, she’d get one hour with one persion trying to do all five therapies. Um, yeah. That’ll work. Cathy’s rather miffed. She went to a meeting about it and is preparing to write a letter to the agency pointing out what a crock the idea is.
Manolis keeps moving slowly through the immigration bureaucracy. He should be here within a couple of months — that’s another one we’ve been saying since Thanksgiving. Last I heard, he just got a whole bunch of forms to fill out that are duplicates of stuff he’s already filled out! Gotta love those feds. Silly me, I feel that fathers should be allowed to visit their kids. Especially the ones with severe medical problems.
Dad & Ida are coming out later this month and Rosanne’s arranged to come out at the same time so that’ll be nice.
I’m sure I’m leaving out big chunks of information, but this is a good start. My hope is that I can update this a couple times a week; we’ll see what really happens 
