Mar 18, 2008

Ainsley to Wear Brace Only While Sleeping

Today was a very exciting day! Of all Ainsley’s medical conditions surprisingly the most common one, hip dysplasia, has turned out to be close to the top of the list for most inconvenient. As you know in January I sent out an update saying we were so excited because Ainsley was getting out of the spica cast and getting a abduction brace instead. Little did we know it wasn’t as big of an improvement as we’d hoped. Diapering was still a nuisance because you’d have to get her out of the brace. Positioning was still an issue and her movement was very restricted the majority of the day. And clothing, oh I am so tired of seeing her wear the same dresses and baby legs. But at least she could have baths, a trach no-no but I’m all for bending the rules. Well today, she graduated to wearing the brace at night and naps only. Since she sleeps a fair amount it’s a good chunk of the day. But it’s a step in the right direction. We’ll do that for the next 6 months. That’s almost a whole year of dealing with hip issues. Sigh. So the x-ray today showed the hips in better alignment. Since she has small/shallow hips there is a risk of redislocation. They’ll do x-rays every 3 months to check placement. The best news is that after 4 ½ month she is now okayed for normal movement. Previously she’d been restricted to movements she could instigate herself so working on sitting, standing or crawling was not allowed. Her physical therapist is going to be very excited! It’s likely to take a little while for her to regain normal movement in her legs. Especially the one that had the open reduction. We’ve been doing water therapy and it’s helped a lot. She’s now able to move that leg a little and straighten it out more. The left leg is moving pretty much normally.

We have added an educational therapist and speech and language therapist to her team of care providers. She has made good progress with the educator. They’re working on offering choices and problem solving to give her a greater sense of control in her life. She’s had so many interventions in her short life that she’s learned to be rather passive. She is now indicating her preferences when offered choices between toys. She’s also started playing with toys like a ball toy where you reach up to put a ball in the top and push on a lever to release the ball. It looks like a giant gumball machine. The speech therapist has been working on trying to: teach her beginning language sounds like vowels, increase her receptive language vocabulary, general baby communication skills such as pointing and gesturing and also sign language. The therapist does have her wear her PMV (speaking valve) but she’s really not able to vocalize yet. Clearly there is a lot of catching up to do. In general all of it is still more challenging for her than for the average child. But she’s making slow steady progress.

Since recovering from RSV and a cold in February we’ve been encouraged by an increase of air movement through her mouth. I attribute that to a diet change that I started on Feb. 21st. I started thickening her food with rice cereal and baby food. It’s not nutritionist approved but WTH. I’m tired of waiting for the doctors to come up with solutions. So far it seems to be working great. Her weight has not suffered, she seems to have more energy and best of all the throwing up has finally improved and I think that is helping with the airway swelling. The way I see, the average child her age isn’t required to get “perfect” nutrition. So long as she’s growing as well and she’s getting a reasonable balance of foods I think she’ll be okay. And I make sure she gets enough fluids. She’s still on the Prevacid. Although it didn’t solve the problem in the past I will continue with it until after our trip so that there is no question about if it might have helped if we had continued to give it.

We are SO excited about our trip to see the world famous Dr. Cotton. We leave on my 40th birthday, April 6th, which is less than 3 weeks away! Navigating an airport with a baby with a trach was not what I thought I’d be doing on my 40th birthday but there was very little choice about which week. Really I’m okay with it. So we’ll let everyone know how things go if there are any major changes before then, but if not then I’ll update after the trip. Steve is going to be home with the kids and I’ll be traveling with Joanne, so not to worry, I won’t be alone.

Ainsley’s first taste of real freedom. She was having fun trying to look in the giant mirror.

Riding in the stroller, without the brace! Gotta watch it, her skinny behind almost fell out even though she was strapped in!

Finally freedom to move her legs in her car seat. Not that we go anywhere.

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