Archive for March, 2006

Another new video

Friday, March 24th, 2006

Yet another new video on Maria’s website.

Cathy got the official report from the BAER yesterday. Lots of big words, but it basically said the same thing. He said three times in bold print that the appearance of a Wave V (brainstem) signal was new. He’s obviously as excited as we are 🙂

Maria was a rollin’ fool yesterday. We’d put her down and she’d roll and roll. She kept rolling onto the tile floor and we had to put a pillow up to block her. I’m glad that she’s really getting into traveling.

I took Maria in the stander out on the patio yesterday and she really seemed to like being out there. I try and remember that she spends her whole life in the living room with an occasional break to go see a doctor, so I’m sure she likes the variety.

We may have gotten her into a new speech therapist. This is one who evaluated her back when they were considering a cochlear implant. We only saw her once or twice but we liked her. She can see Maria only every other week, but we are glad to get her into someone who specifically deals with hearing impaired kids.

New videos

Tuesday, March 21st, 2006

I uploaded four new videos to Maria’s page.

One more thing that we forgot to mention about Friday is that her hearing threshold is also lower, meaning her ears are responding to fainter sounds. Before her threshold was around 60 decibels which is about the level of normal conversation. Now it’s in the 40-50 range.

We talked to the physical therapist yesterday about the developmental evaluation. She agrees that sitting is important so we’re going to focus on that, though we are still going to work on all the other many, many things. She thinks that ankle braces are premature (we agree).

Maria continues to be fiercly independent about feeding herself. Yesterday we got a good rhythm going. She’d reach out and I’d put the loaded spoon in her hand (I’m not making her look for the spoon at this point). She’d put the spoon right into her mouth, clamp down on it, then take her hand away. I’d take the spoon out, load it up again, and we’d repeat. She’s learning not to keep holding the spoon and not to bite down so hard we can’t get it out. I have to slow her down because she wants to shovel the food in faster than she can swallow it!

She beat me to it

Friday, March 17th, 2006

I only just now got home and Cathy has already managed to update.

I wanted to add that I, for one, am less bummed about the news from Monday. The bad news came from a doctor who has seen Maria ONE time. She also ignores the fact that a substantial part of Maria’s developmental problems are vision and hearing related. Those are both improving so it seems logical that she will start developing at an accelerated pace. It occured to me that maybe the reason her other neurological skills are building so slowly is that her brain is concentrating on reparing the vision and hearing problems.

I’m not blinding myself to the possible badness down the road. I’m still very concerned by how slowly Maria develops new skills, but she’s made fools of the doctors before (“She’ll be completely blind her whole life”, “She’ll never drink from a bottle”). Mild-to-severe learning disabilities are common with hydrocephalus. That doesn’t mean she can’t live a normal life that includes regular school, college, and a career.

Go BAERs!

Friday, March 17th, 2006

Today Maria had her 3rd BAER (brain auditory e?? response) today, along with a brain MRI and a spine (lumbar) MRI. Don’t know the results of the MRIs yet, but the audiologist came out and talked to use about the BAER results. He was very excited about the improvements since August. For the 1st time, he got a response from the 5th wave (certainly not the exact words he used), which means that her brainstem was processing the sound! The 5th wave was flat in both of her last hearing tests. He told us we don’t need to bother with the hearing aids for a while; he wants to check her in the booth with and w/o aids before deciding whether to keep trying the aids or not.

He did say he had some bad news, however. In late May, he’s retiring and moving to Costa Rica. Naturally, we told him how selfish that was. He assured us we’re in good hands there (yea, whatever, he’s by FAR the best audiologist in the joint). First the speech therapist, now the audiologist. Have they no shame?

When Manolis and I went into the recovery room (Uncle Andy had to stay in the waiting room because it was crowded in recovery, it was pretty scary. Maria was on oxygen, haning a hard time breathing and waking up. She had been under for quite a while and I think it was hard on her – both the anesthesia and the intubation. Pretty freaky! After quite some time, she was breathing and feeling better, so they finally let us leave. Long, exhausting day, but the good news makes it not seem quite so bad….

Neuro-developmental Pediatrician

Monday, March 13th, 2006

Today we went to a new doc as part of the Newborn Follow-up Clinic, which is now called the Neuro Development Evaluation Program, which is a study of babies that spent time in the NICU (newborn intensive care). Everytime we go, the appt is fine, but the report they send is so depressing that I’m bummed out for at least a couple days. This appointment, I’m sure, will be no different; except that it may be more depressing.

First of all, Maria was weighed and “lengthed” – 24 lb 14 oz (less than the 25 lb 3 oz she’s been weighing since November), and 31″. She’s still at 10-25th percentile for length, 25-50th for weight, and 3% for head circumference — which is low, but at least it seems to be stable, which is what they want.

I liked the doc, she is new here, but seems like she’s been doing this quite a while. Toward the end of the appt, she said she thinks Maria’s at about 6 months old. This is about what I thought and where she’s been for quite some time. She also said that when a kid is getting close to 2 years old and is developmentally less than half that age (Maria is 20 months old, but 6 months developmentally — less than the 10 months that is half her age), then she probably won’t catch up. I don’t know exactly how she said it, but bluntly that’s the bottom line. This won’t change what we’re doing or how we’re doing it. It is, however, the first time anyone has actually said this outloud, which on some level, I guess maybe I appreciate.

The other things she mentioned are that she thinks Maria should get braces for her feet. She wasn’t concerned so much about the angle of her ankles, but rather with how her feet roll in to the middle (not sure if that makes sense). One doc said she could wear them in bed at night, this doc said it’d be better for her to wear them in the stander, for example. She should wear them at times when they will help her (standing), but not at other times, when they would hinder her (crawling). The other thing she focused on was getting some sort of sitting contraption to help Maria with her sitting. She’s worried about her developing scoliosis if she isn’t supporting herself upright with a strong, straight spine. She just said there were many options, but didn’t get specific. Maybe the report will be more specific.

This Friday Maria is finally going to get a brain MRI, a lumbar MRI, and her 3rd hearing test (I forget whether it’s ABR or BAER or what, too lazy to look at the Aug blog to see…). Last year a radiologist was looking at some xrays and thought he saw something not quite right with her spine, like some mild form of spina bifida or something. I’m a little concerned about the tests, but onward we march…

The good news from today is that I talked with an eye doc, whose name I’ve heard a lot because he’s supposed to be really good with special needs kids. Anyway, he’s beginning a study soon on kids with cortical visual impairment and auditory neuropathy. He wants to get them PET scans, which maps the brain in colors that shows which parts are most active and how they respond to different stimuli. Sounds very exciting. I’m quite thrilled that she’s going to be part of it. Plus, one of his offices is only a couple miles from us vs her other eye doc who’s 15 miles or so away. He said to call him back if I don’t hear from him by April 1.

Maria’s vision does seem to continue to improve slowly. The other day she looked at the mobile above her crib for the first time, which got me all excited! Her other developmental milestone is that she now grabs the spoon all the time for every meal. It began one day at one meal, I think when Uncle Andy was here. It’s slow and messy, but a necessary step.

New site, old pictures

Saturday, March 11th, 2006

I’ve imported all the old pictures to the new picture gallery. I’ve divided them out by year. The link in the March 9 update leads to the 2006 gallery, but this link takes you to all Maria’s pictures.

Maria has been super-fussy for days now. We think she still must be sick. Cathy and I feel better, but she’s been getting bad sore throats and I’m still coughing. We figure Maria probably also has a really bad sore throat or sinus headache or something. We wish she could tell us what was wrong rather than just yelling and yelling.

She just needs to stay healthy until Friday when those tests are supposed to be done. We really don’t want to reschedule them all again.

New site, new pictures

Thursday, March 9th, 2006

I’m moving my cyjon.net site to another host. It will probably be invisible to anyone looking at Maria’s pictures, but if you have trouble getting to the site for the next couple of days, just try again later.

One of the many reasons I’m using the new host is that I found a nifty PHP script that won’t work on my old host. It allows much nicer display of all the Maria pictures with a lot less work on my end. I have a little preview with a bunch of new pictures.

Tests rescheduled

Saturday, March 4th, 2006

Maria’s latest battery of tests have been rescheduled for March 17. This is the brain MRI, lumbar MRI, and BAER. Now if we can just keep her healthy until then, since they won’t give her anesthesia if she’s sick.

I’ve played with Maria on the resonance board and it’s been so-so. She seems to like it at first, but gets bored with it pretty quickly. She’s gotten better in the new stander, or maybe I’ve gotten better at putting her into it. I haven’t tried her in the crawler in a long time because it takes so much effort.

I have tons of pictures and videos going back to October(!) that I’ve gotten ready to post to the website. I’m still playing catchup, but I hope to have them up by Monday evening at the latest.