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.
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.