Maria Rose

Maria had her latest barium swallow test last Thursday. I’d re-scheduled it twice already and of course Maria had a pretty rough night before and morning before the test. I thought about cancelling again, but figured we may as well get it over with. She did ok on the honey consistency, and on next thicker consistency, can’t recall what they called it, but I’d never heard it before–honey thick or honey paste?, then she dipped a cheeto(sp?)-like snack that Maria’s been doing well with in pudding consistency; Maria swallowed the pudding, then while chewing on the snack, she silently aspirated the pudding, so they stopped the test. The speech therapist doing the test went over it with us, which was very nice of her. Before she had a chance to say much else, I said “Don’t even talk to us about a G-tube. I’m not willing to consider that right now. We’re on the list for the Vital Stim (where they stimulate her throat muscles using tiny painless electric shocks), and we need to complete that before considering a G-tube.” She said ok, but if Maria’s voice gets rough after eating or drinking or if she spikes a fever for no reason, then call your doctor immediately. Yea, we’ll get right on that.

Rather depressing.

I did go home and thicken her depakene (one of her seizure medicines), and it is much easier to give it to her that way. Although Maria’s been x-rayed and scoped and they’ve found no evidence of aspiration, nor does she spike fevers very often, she does breathe rough a lot. Yes it bothers us. No we don’t know what to do about it.

Friday was our favorite doctor’s appt — I took Maria to the dentist. I told him he’s our favorite appt because so far he hasn’t found anything wrong. No cavities, no rare diseases, syndromes, or other nonsense. (Now I just have to get myself in to see one one of these days…)

I’m not super thrilled with the OT. She pushes Maria too hard, doesn’t understand cortical visual impairment at all, and is more critical than the other therapists. I’m going to get her some CVI info. Today I suggested letting Maria lay down and she did better. I was out of the room a lot and when I came in, Maria was stiff, looked mad, and wasn’t doing as she was being “asked” to do. Not quite sure what to do about it. She’s not too good on taking hints, but I’m probably not being direct enough. She doesn’t appear to understand how hard it is for Maria to maintain an upright position and do the things she’s being asked to do…

Tomorrow’s Maria’s Christmas party at school. Although I finally got the cold that’s going around, I’m planning to go, as is Uncle Andy and Sue (Manolis has to work).

Maria, Cathy and I went to Salt Lake City on Sunday the 2nd to go to Shriners Hospital.

The trip started off on a bad note when we got the Swifty stroller off the airplane. We had checked it at the gate for special handling but Cathy noticed the rubber on the handle was shredded. Luckily she noticed before we left the airport so we could go to the Southwest baggage office and file a claim.

You know what the problem is with a wheelchair that looks like a stroller? People think it’s a stroller. That’s fine when walking through the mall but less fine when dealing with a damage claim.

Although they were nice, there was this undercurrent of attitude. I might even have dismissed it, figuring we were being oversensitive. Then one of them looked the Swifty up on the web to see what part they needed to order. I am watching her read the web page and I see her face change as she realized that Cathy was calling this a wheelchair because, you know, it’s a wheelchair. Suddenly all their attitude evaporated and they were being very sweet and solicitous.

They ordered the part (the wrong one Cathy realized in time to change the order) and gave her a $100 travel voucher as compensation for her having to get it repaired on her own.

Salt Lake City was cold and snowy. The people at Shriners were all very nice. Two doctors examined Maria and they did x-rays. They found two things of concern. The first is that her spine is starting to curve out of alignment, which we already knew. The second, a problem common to kids who don’t walk, is that her hip joints are deforming.

The tendons get tight and pull the thigh bones outward. The bones slip slightly in the hip socket, nowhere near being dislocated but just a tiny bit out of perfect fit. The problem lies in that kids’ bones are soft. The hip joint deforms to the new thigh bone position, which allows it to slip more, which causes the joint to deform more, and after a few years the bone pops right out.

Both problems are in the very, very early stages and are completely correctable. We need to get Maria to stand or walk as much as we can. When she got back, Cathy got the PT to turn Maria’s stander around so that it’s a prone stander. This means Maria lays on her stomach rather than on her back as she is raised from horizontal to vertical. It makes her more comfortable and prevents her from hanging in the shoulder straps.

The walker and the new stander continue to progress through the bureaucracy and we hope to have them soon. Shriners will follow up with us here in Phoenix in 4-6 months.

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In other news, Cathy talked to the hearing guy at the Mayo in Phoenix. He said the problem with him seeing her is that, although his background is in pediatric audiology, he has not been able to establish a pediatric audiology program here. He suggested that Maria needs to see someone who works with kids all the time. There is one in Salt Lake City, which is possible. However there is also one in San Diego, which would be perfect becase we could stay with Rosanne.

Cathy’s going to call the San Diego place. Since she’s heading out to Rosanne’s for Christmas she’s hoping they could squeeze Maria. If not, then Rosanne gets two visits from her favorite niece.

Cathy has been talking with a Dr. Shallop at the Mayo in Minnesota. He is one of the leading experts in auditory neuropathy and cochlear implants. She faxed him Maria’s latest ABR results and he thinks what Maria has is not auditory neuropathy.

Maria’s former audiologist said he had never seen an ABR signal like hers, but Dr. Shallop said he’s seen it often. He said it’s a fairly typical signal associated with hydrocephalus. Maria obviously has a hearing problem so I’m confused as to what he thinks it is, but I think he’s saying the problem is in her brain rather than the auditory nerve. This means the implant would do absolutely nothing.

There is a guy at the Mayo here in Phoenix who would be a good local resource so I believe Cathy is going to try to get Maria in to see him.

We just got back from Thanksgiving in Albuquerque. Maria did pretty well out there. She got a really bad cough but I think it was from the cold, dry air.

Tomorrow we go to Salt Lake to have Maria evaluated at Shriners Hospital.