Archive for April, 2006

Wacky voodoo rituals

Friday, April 28th, 2006

I am (and will probably always be) skeptical of the whole Qi Gong thing, but there sure are some interesting things that happen there. Maria has always looked at him and reached her arms out toward him more than towards anyone I’ve ever seen her around, including her own family. When he was working on her yesterday she got very quiet, with this half grin on her face and this expression of “Hey, I don’t know what’s happening but it’s pretty neat”. This was when he was behind her and just moving his hands around without touching her so she had no way of even knowing he was there. Also, when he was working on her from the front, her eyes kept tracking his hands. Not well, mind you, but more than I’ve seen her track before.

Maria continues to be phlegmy. Although it gets worse when she eats or drinks, I don’t think it’s aspiration because it isn’t that “I’m choking” cough. She has been coughing to the point she’ll spit up her milk, but she doesn’t ACT sick. I believe Cathy is going to try and get her to the pediatrician today.

Cathy and I talked last night about the fact that we’ve been focused on *language* with Maria (whether spoken or sign) and maybe we need to focus on *communication*. Since Maria’s vision and hearing are still poor, we need to focus on tactile communication. This might be as simple as doing signs on her rather than in front of her vision, such as making the “eat” sign on her mouth rather than ours. Or it might be a matter of coming up with our own cues. One of the therapists mentioned that each person in Maria’s life should use an object that she can touch that becomes that person’s “name” to her. So that’s something else for us think about and work on. It’s so hard to know what to prioritize.

Oregon in Spring

Wednesday, April 26th, 2006

As Uncle Andy said, Maria and I went to Oregon for the 9th annual girls’ weekend. The Oregon coast is such a beautiful, magical place… I don’t know if it was the ocean breeze, the sand, the Reiki, the girls, or what, but Maria seems better since we’ve been back — happier, more aware of stuff, taller — better. I feel better too, more relaxed. She hardly needed her hearing aids because the women and the music filled the air w/o need of aid. We hit our favorite places : Crystal Wizard, Coldwater Creek outlet, Breach the Moon, breakfast at the Whale’s Tail, and of course a quick stop at La Luna Loca in Canon Beach. The weather was windy-cold, but sunny and nice. Maria’s a great traveler, tho’ in 2 short months, I’m going to have to start buying her a ticket. Apparently, the FAA doesn’t care about special needs; 2 years old is the magic age for no more free rides. Since Maria can’t sit un-aided, that means I have to start hauling her car seat (in addition to the stroller and backpack and my luggage). Wonderful…

I’ve been calling around for music therapists. Leaving lots of messages, hope to get some return calls, seems like music therapy is in high demand…

Went to the new speech therapist today. I’m confused about how long she’ll be seeing Maria; she prioritizes cochlear implant kids, so I found another therapist, maybe, at United Cerebral Palsy. She goes in for a speech evaluation in a couple weeks (assuming they can wade through the insurance crap). It’ll be a hard place to be/see, but it’s close to our house, they have a good reputation, and they might be more equipped to deal with Maria than some other places. So we’ll see how they do compared to the one today (who seemed rather unsure of herself, tho’ she is awfully sweet).

Maria’s been awake much of the past 3 nights coughing (allergies? a cold? aspiration? who knows…) I hope tonight is better, tho’ it’s not starting out very well, she’s awake now in fact.

Vacation

Tuesday, April 25th, 2006

Maria and Cathy just got back from vacation in Oregon, which is why there hasn’t been any news in a while. They saw her old speech therapist, since that’s where she retired. Maria really liked the feel of the sand on the beach, so Cathy brought some home with her.

Maria sees the new speech therapist today and the Qi Gong guy Thursday.

Music therapy

Tuesday, April 18th, 2006

One of Maria’s therapists mentioned that, since the hearing test showed she responded much better to music than to voice, that music therapy in addition to traditional speech therapy might help her with language development. Cathy is going to start looking into that.

Neuro reschedule

Sunday, April 16th, 2006

Maria’s neuro appointments for Wednesday have had to be rescheduled due to a conflict. I don’t have the exact day but it’s somewhere mid-May.

She also didn’t see the new speech therapist last week because of some authorization mixup, but she’s set to see her the 25th.

Maria is definitely cutting a back molar now which is part of her fussiness. I still suspect something’s going on in her tummy as she’s been extra gassy and, as usual, constipated. Sometimes when she’s squirmy she’ll calm down if I bring her knees up toward her chest, so that makes me think she’s crampy.

Audiology Update

Monday, April 10th, 2006

Maria had her audiology visit this morning. She responded more to sounds and music than voices, which we’ve observed before. She seemed to hear better with the hearing aids than without, though the “without” tests were less in depth than the “with”. Her right ear was more sensitive than her left. She turned toward noises on the right, less so with noises on the left. He thought there might be a little fluid in her ear, but never followed up on that and didn’t seem concerned.

So we keep using the hearing aids, though he didn’t see any reason to turn them up as long as she continues to make progress. He was STILL very excited about the BAER test results. He’s going to give us his email address when he retires so we can keep him updated on Maria.

We stopped in the hospital cafeteria and Cathy got some chocolate cake. She gave some to Maria and as soon as Maria saw the forkful of chocolate coming toward her her face just lit up. Her vision may not be perfect, but she knows chocolate when she sees it!

Maria’s busy social schedule

Thursday, April 6th, 2006

It’s been longer than usual since the last update since nothing really exciting has been happening. One thing is that a couple of the therapists said we need to begin looking around at some kind of transport device for Maria. Once she turns 3 she will probably start preschool at the Foundation for Blind Children (FBC). If she isn’t walking they need some way to cart her around. There are apparently these transports that aren’t quite wheelchairs and aren’t quite strollers but something in between. It’s not something Cathy needs to rush out and do this second but it’s something to think about.

Everyone has noticed that Maria has started to reach out when she sees people, kind of a “pick me up” gesture. She also appears to be cutting her two-year molars. Or maybe she isn’t. We can’t really decide. But she’s been awfully fussy and uncomfortable and seems to be showing her teething behavior.

She got her new Bumbo Seat. It’s a low-backed seat designed to help babies learn to sit upright. It’s surprising how well it works. She still arches back some, but usually she sits in it better than she does in her other chairs. I’ll get a picture of her in it one of these days.

Maria has a busy week coming up. Tomorrow the FBC is having “Farm Day” where they take some of the kids out to see some farm animals. Cathy took Maria to a petting zoo recently and, though she was indifferent to most of the animals, Maria really loved the pony. (What is it with girls and horses?) So Cathy is going to take her to Farm Day. Saturday she sees the Qi Gong guy again. Monday is the audiologist for a booth test both with and without the hearing aids. Tuesday is the first visit with the new speech therapist. There are a couple of other things but I’m too lazy to go look at the calendar. Then on the 19th she sees the neurologist and the neurosurgeon to talk about the last MRI.