Archive for November, 2005

Crawler – A New Contraption

Monday, November 14th, 2005

Maria got her latest theraputic contraption today — a crawler. You can see what it is here (that’s Maria’s physical therapist in the picture). She seemed to like it and was doing quite well pushing off with her legs to get a little mobility. As usual, she has a long way to go, but this is another little step.

Maria can finally start pulling her financial weight, the little slacker. She got a letter today that says she’s preapproved for a platinum Visa card. It’s nice to know that we live in a world where you get get a credit card before you’re even 18 months old.

Hearing and Magic

Friday, November 11th, 2005

All kinds of things seem to be happening with Maria. We went to the head audiologist last week (they got us in quickly after I dramatically accused “the audiology community of abandoning us”). He said Maria’s hearing aids don’t fit well, which we all knew because they fall out if you look at her too hard. The audiology chick I don’t like made her initial molds, so of course I casually mentioned who it was that made them. He made new molds and told me he’d make them pink/purple striped (her current ones are clear; I wanted sparkles but they say they’re too small for sparkles??!!) We should get them in a couple weeks.

He tried a mini hearing test in the office and got the huge cochlear response spike again. He kept saying “wow” and “we got a lot of valuable information today”. He wants her to get another ABR test (the one where they put her out and test the brainstem response) and MRI. The last one was in August and it was significantly different than the one in January. He was especially intrigued when I said that Maria calms down to music. He thinks it’s possible that we’re at the beginning of her hearing starting to work, the pathways being made, the brain beginning to interpret the sound. So he’ll talk to the neurologist and see what she wants to do. It was a pretty exciting appointment.

That was the hearing part, what about the magic? The woman who does the make-up for our TV productions at work told me about a chiropractor who does miraculous things and she said I HAVE to take Maria to him. So I made an appointment, we’ve been twice so far. He’s very interesting! He says his technique has no name, but the Chinese would call it Qigong. It’s pretty hard to describe and you’d think I was nuts if I did describe it, but let’s put it this way, it’s non-invasive, somewhat bizarre, and magical. After the first visit, her vision seemed to be quite a bit better; after the second visit (which was just yesterday) she seems to have better control over some movements. She seems to have a connection with him and even Uncle Andy seemed somewhat intrigued. I think most people out there professing to be healers are quacks, but I also think there are some who have a gift and he may be one of them. The way I look at it — the cost is not prohibitive, she seems to like him and he seems to like her, it doesn’t hurt her in any way, we’ve given the traditional medical community 16 months, so why not?! Both times we went I felt almost giddy when we left… so we’ll see.

He said Maria’s being quite specific about where she wants him to work, some frontal lobe and some in the back where the worst damage was, and where the vision and hearing are. He also said her brain is retaining memories from when it was damaged by the fluid build-up before she was born, so he’s trying to get rid of those memories to make room for the new growth and memories. Sounds crazy, I know, but please keep your mocking to a dull roar, because I think something magical is happening. Don’t forget last November when I put Maria’s name on the distance healing network and several Reiki masters focused their healing on her, then in December the MRI showed that the mysterious mass in her brain was gone. Coincidence? Maybe. Maybe not.

My buddies at work threw us a wedding reception-type party; they even had wedding cake and champagne. We had a great time, Maria was a big hit (of course), and we succeeded in getting a few donations for Phoenix Children’s Hospital and the Foundation for Blind Children.

Fussy but progressing

Thursday, November 3rd, 2005

Maria’s been kind of fussy the last couple of days. She acting like she might be starting her next round of teething. Plus it’s been cloudy today and shunted hydrocephalics often get headaches during sudden changes in barometric pressure. We’ve seen her act this way on overcast days before.

She contines to do well in the stander. Her legs are stronger and she’s got some muscle definition in her calves. Today at the speech therapist, she actually started to pull herself to her feet! Then she saw the therapist’s buttons, thought “Ooh, shiny” and lost her train of thought. Cathy and I had both been thinking she’s be in the stander for a matter of weeks, but the physical therapist was talking about “when she outgrows this one” so I guess it’s going to be longer.

She saw her ophtalmologist last week; as long as she continues to improve, he figures there’s no reason to change what we are doing. We had been a bit concerned that her left eye seems slightly misaligned, but he said it was fine. The vision therapist later explained that sometimes someone’s eyes look misaligned because of the shape of their nose, but if you shine a light on the bridge of their nose and it reflects equally in both eyes, they are actually aligned correctly. She agreed the left eye LOOKS lazy, but she did the light thing and said they looked fine.

Although Maria’s vision continues to improve, she still “acts blind”. I was watching her one day, and I realized that she simply doesn’t realize vision is important. It’s more of a “hey, this vision thing is kind of neat, oh now I’m touching it so I don’t need to look”. She’s very tactile. It will take time for her to realize that vision is actually useful.

I’ve also noticed that her hearing seems better. It’s a lot harder to notice compared to vision, but she seems to react to noise more often than she used to. She likes her noisy toys more lately. Cathy finally called the audiologists since they kind of dropped us after Maria’s last BAER test. We think that they were just so baffled by the result, they decided to ignore us and focus on the easy cases :). Maria’s got an appointment next week.