Jan 31, 2008

Ainsley's Out of the Cast!

It’s time once again for another update. Yesterday Ainsley got out of the spica cast. YEA! It was crazy to see how tall she is now! Her legs were pretty itchy but the skin otherwise looked good. They often say kids don’t like the feeling of being out of the cast right away but not Ainsley. She was pretty darn happy! Unfortunately she still has to wear a brace to keep her legs in the outward position for 6 more weeks, 20-22 hours a day. It is smaller and lighter so that is nice. But it does look like she’s going to stay in the Baby Legs, and dress uniform that she’s been sporting to make diaper changes a little easier. It’s still going to be a pain to diaper her. (Sigh) The angle of her legs is different so we have to relearn how to position her, hold her and what movements are comfortable when she’s out of the brace, but I’m sure that’ll come with time. The othro department will do another x-ray on March 18th. At that time it’ll have been 4 ½ months. What we’ll be hoping to see at that time is that the cartilage has formed nicely around the ball of her leg bone and that it keeps it in the proper place within the hip since her hip sockets are a bit shallow. Beyond 4 ½ months there is not a lot of advantage of keeping the legs in that position and there is the drawback of the delays it causes with her motor development. But they will still want her to wear the brace for sleeping at nap time and at night. Two great things about the brace, she now fits in her carseat again which will hopefully mean she’s less likely to throw up in those unfortunate situations when I have to drive with her, because she’s more upright. And she fits in her highchair again so she’s able to join us at meal time again (instead of being on a bean bag on the floor). Here’s a link to more about what hip dysplasia is for those who are interested: http://orthopedics.seattlechildrens.org/conditions_treated/developmental_dysplasia_of_the_hip_ddh.asp

Here’s a link to what the brace looks like: http://www.seattlechildrens.org/child_health_safety/pdf/flyers/PE405.pdf

The other big thing going on is that I’ve been working, since December, on getting Ainsley in to be seen by a world-renowned otolaryngologist in Cincinatti Ohio. It’s a multi-step process and we’re now in the scheduling phase. It looks like I’ll be shipping out on my birthday April 6th (what are the odds that would be the only week available) but we’re awaiting confirmation. It’s tricky to find a week when all of the necessary doctors are available. Essentially we’re looking for a second opinion and hoping that because this doctor sees the most complicated airway cases in the country, maybe the world, he may have new ideas about what is causing the swelling of her larynx (vocal cords) and how to make it go away. Here’s a link to this doctor’s page for those who are interested: http://www.cincinnatichildrens.org/svc/find-professional/c/robin-cotton.htm We’ll be there for a full week of out-patient testing with one night in the hospital for a scope, biopsy and lung assessment under anesthesia. The plan is that I’ll go alone and Steve’ll stay behind so it’s not too hard on Evie and Adrian.

The other really exciting thing is that she’s learned how to turn the pages of a book, which requires a pretty complex set of motor skills and cognitive ability. Here’s a You-Tube link that I posted for my trach forum friends. http://www.youtube.com/watch?v=LF8sDpAiztU