Two more videos at Maria’s Website. One shows clearly that she can hear; conveniently, this one happened in front of the hearing therapist. The second shows the landmark rolling over incident.
Archive for July, 2005
The thing about babies, particularly babies who are taking their time in terms of development, is you need to be careful not to consider every random muscle spasm to be some kind of developmental milestone. When something happens, it needs to happen several times consistently before it’s worth getting excited about.
Today was one of my days to take care of Maria. About ten minutes before Cathy was going to get home from work I had Maria on her tummy on the floor. I went to check on the bottle that was heating and when I turned around, Maria was on her back. Huh? So I put her onto her tummy again, and she promptly pushed over onto her back. Cathy walked in the door and (after checking with her that this hadn’t been happening all week) I put Maria on her tummy again. I was afraid she might freeze with Mommy watching, but like a pro she turned over onto her back. She did it a bunch more times this evening since none of us (including Manolis of course) ever got sick of it.
My theory is that she’s been saving it all up for Papa. She’s such a kind daughter that she thought he shouldn’t miss out on all these special moments. So maybe she’s going to catch up on several months of development in a few weeks
She also took 6 ounces from the bottle for me…twice. Although I believe she’s taken as much as nine for Cathy in one sitting, she hasn’t taken more than three from me since she stopped drinking months ago. Then again, the gastroenterologist says this couldn’t possibly be happening and I’m sure that someone who sees her for five minutes every three months is MUCH better qualified to judge than we are *roll eyes*, so I must have imagined the whole thing.
Maria sure is talented. She sees well for someone who’s totally blind, has fantastic hearing for someone who’s completely deaf, and drinks a lot for someone who doesn’t drink at all. I just don’t know what we dumb laymen would do without these doctors telling us all the stuff that’s wrong with her.
OK, I’ve filled my sarcasm quota for the day.
The speech therapist told us today she isn’t even going to work on bottle feeding anymore since Maria doesn’t need it. She’s going to work on body positioning and, well, speech.
All in all, a very good Maria day.
Oh, and I have video of the landmark rolling over which I’ll try to post this weekend.
I posted three new videos over at her website. I also corrected a couple of problems with the pictures I posted earlier.
Yesterday we went to the gastroenterologist. He was very pleased that Maria’s drinking her bottle again. He doesn’t really believe it, though, because it’s VERY unusual for a baby to start drinking from a bottle when she quits and has an NG tube. In fact, he’s so shocked that we have to go get another barium swallow to make sure she’s not aspirating — he feels something has to be going wrong, she can’t just be drinking again like a normal baby. In fact, he used the word “miracle” (kind of like the “miracle” of the mass in the Aqueduct of Sylvius in Maria’s brain that mysteriously disappeared in December). The docs just don’t quite know how to figure little Miss Maria out… He did say, however, if she stops drinking the bottle again and won’t take enough liquid from a cup or if she’s aspirating all thicknesses of liquid, then she still has to get the G tube in her stomach. Mom says, “yea, whatever.”
Today we went to the neurologist. She’s so nice and yet so not positive. She thinks Maria won’t have vision. Maybe shadows or something similar, but she feels like she’ll pretty much be without sight. Although she hadn’t ever or recently seen the March MRI, she doesn’t think the brain grew back in the back (occipital?) lobes. Of course I forgot the CDs with the scans on them, so she couldn’t look at them today. Maria is getting a CT scan, MRI, and ABR (hearing) test in mid-August. The neurologist said sometime after that, we’ll look at that scan, and compare it to the ones done in March, January, and December (when the mass disappeared). We’ll discuss the differences, talk about anatomy, see how the brain is “fluffing up” as they say, and talk about what that means. She says vision and perhaps something to do with hearing is controlled by the brain in the back of the head.
She thought Maria’s arms were a bit stiff, but thought her legs were ok (last time she said her legs were stiff). Said she’s too chubby (22 lb). Said to keep doing what we’re doing. You never know. It’s good to have hope, but don’t be too deeply in denial. Blah blah blah. As I said, she’s so nice, but I left her office pretty upset. Thank goodness her therapists are so positive and encouraging.
Manolis is getting quite an education about Maria’s life. He just adores her, of course. She’s getting used to him, smiles when he picks her up and kisses her, but still can’t understand him (because he talks to her in Greek). As he sees what my days are like, and how much time it takes to raise a baby, he’s beginning to understand why I haven’t learned Greek yet. And even though it’s been record temperatures (115 degrees some days), he works in the yard for at least 5 hours a day trying to whip my yard into shape. Keeps asking if he can get rid of my Texas sage bush. I just say ha! Tomorrow he comes with us to speech (feeding) therapy and Friday it’s occupational therapy. Never a dull moment!!
I finally posted about three dozen new pictures to the website. There are still a couple of videos that I need to upload, but I need to free up some space first. I’ll delete the larger versions of the oldest pictures. I’ll keep the smaller versions around, since they are tiny compared to the huge version (which probably no one looks at anyhow).
Just four hours until Manolis is supposed to be here
So, finally, after months of aggravation, it looks like Manolis is coming this Saturday night! It took him all day today at his immigration appointment, he said 4 people checked him out. But he said they were all very friendly with him and happy for him and the baby and our story. (Not sure why they’ve been so ugly up until now???)
Maria is still off the feeding tube, it’s been almost a month now! Some days she barely gets her minimum 15 oz in, but other days she smokes! or drinks. Yesterday she had 28 ounces!! She has been drinking 1/2 cow milk with rice and/or soy and/or breast milk thrown in for good measure (plus the gellatinous thickener, blech). Plus she likes carrot juice, and we’ve been mixing her frozen cubes of pureed fruit with water and thickener to make fruit juice. She drinks best for Sue, the nanny/caretaker/babysitter/whatever she’s called. Of course, she’s still eating her solids like a champ and starting to do pretty well with chewing soft foods (fish, feta cheese, and bananas mostly). I gave her (pureed) buffalo the other day; like her mom, she likes that better than beef.
She’s been swimming more, she’s getting more comfortable in the water. Sue thinks her vision is getting better. It’s still hard to tell if her hearing is better with the hearing aids. Soon she’ll have an MRI, CT Scan, and ABR (hearing) test as preliminary screening for a cochlear implant. I’m still not convinced, but I’d like her to have another hearing test. She also has to have a speech evaluation. I’ve grown to really dislike the evaluations, more accurately I don’t like reading the evaluation reports…
One of Maria’s favorite toys is a squeaky dog toy, given to her by her physical therapist. She also likes her giggle doll she got for her birthday. She’s interacting more with her toys. So all in all, things are going well! And soon, I’m sure, Uncle Andy will put some of the adorable birthday party pictures and perhaps a video on the website…
Maria continues to drink from the bottle quite well. The NG tube has been out for 5-6 days now! She doesn’t seem to like straight cow’s milk, but likes mixtures of cow with either rice or soy milk. She sucks it down likes she’s done this her whole life. Let’s just hope she keeps it up.
Without the tube we can finally give her some quality tummy time so she can start developing those crawling muscles. She’s also sitting up better. She can’t sit unassisted yet, but she requires a lot less help. Her head control is better as well. I noticed that her new car seat is tilted more forward than the old and her head flops forward a bit when I accellerate, but she brings her head up straight on her own. Like they say, don’t focus on where she is on the development chart, focus on whether or not she’s improving.
Maria’s hearing still seems to be improving. I, for one, am pretty casual about how often I put her hearing aids in. I’m not saying she doesn’t need them, but until they are treating her for the level of hearing she has now rather than the loss measured nearly six months ago, I’ll remain skeptical of the audiologist’s recommendations. They just don’t seem to understand that this is not sensoneural deafness (the “typical” form of deafness, which doesn’t improve) but auditory neuropathy (which sometimes does get better). We definitely have to take the hearing aids out in crowded, noisy environments because she gets so fussy. She’s also learned how to pull them out by pulling on the strings, so that makes it challenging.
The pediatrician is concerned about her leg development, something about her feet being pointed down too much and if we don’t fix it she’ll have to wear braces when she’s older. Cathy’s and my reaction was pretty much just to roll our eyes. On the list of the stuff that’s wrong with Maria, this rates about 512th. One of the therapists said it was far too early to be worried about something like this, her feet are only slightly off, and that once she starts walking it will likely correct itself. The problem with going to so many doctors is that they are just looking for stuff to fix and if you look hard enough you’ll find something.
She has her followup with the neurologist and neurosurgeon next week. She’ll get another BAER (hearing test that tests brain function) but that’s not scheduled yet. The otoneurologist wants to schedule an MRI to plan for the cochlear implant, but again as long as her hearing continues to improve we don’t see any reason for something that radical. I think there’s one or two other things but I can’t think of them right now.
Maria’s dad has gone back to his home on Crete rather than continuing to waste money staying in Athens waiting on the bureaucracy to get him his visa. This has all taken so long that some of the paperwork is going to expire and have to be redone. He’s, of course, torn up by all this but we hope we can get him here soon.
We have many pictures and videos from her birthday that I’ll try and get on the site over the next few days.