This blog was started to document our walk through jaw distraction surgery and how it is helping Faith overcome some of the serious issues she has faced including obstructive sleep apnea. After researching jaw distraction surgery, we could only find one other T-18 child to have this procedure done. We hope our story will help other families dealing with Trisomy 18 and we look forward to the day God completes the work He has begun in Faith.
And to think...it is only 100 degrees...just fine as long as she has water
Faith was sick for about a week, but we threw the bipap back on her and gave her some breathing treatments. Now she is feeling much better and had a good time playing in the crazy heat. It is so funny to watch how she checks out in the heat until we pour water on her feet or get her in a pool.
Progress is being made on our attempt to pass our Medical Good Faith bill in Michigan requiring doctors and hospitals to reveal their medical futility policies. We have a republican in the Michigan state house who is submitting the bill and a democrat in the Michigan senate who is willing to co-sponsor a bill. I pray God blesses our work and those who are willing to help us.
Here Faith is learning to walk in her new Crocodile Gait Trainer. After the news article in the Detroit Free Press back in February, I received a call from a man in Canada who read the article. We talked for about an hour and shared a number of things with each other. He has a 10 year old daughter with Full Trisomy 13 whom he taught to walk. What was really cool to learn is that she walks unaided...she doesn't even use a walker anymore. Of course I wanted to know how he did it so he told me. He suggested that we get a very light weight aluminum walker so Faith would have to learn to control it and walk more normally. He said heavy walkers cause the user to over compensate and they have a harder time learning to walk properly. He showed me online that Crocodile is a good one so we asked the good folks at U of M to help us get one. They were great, and we got the walker about 2 weeks ago. You can see how much Faith loves to walk. Now it is a matter of hard work - we need to work with here over and over and over and over and over again so she can learn.
Overall Faith has been doing very well. We really need to start on a real food blender diet to see if we can get her past some of the gas issues which is really her biggest problem currently. We are still rejoicing that the bleeding has ended and not come back since February.
