7.21.12 Good news

We met with the Pulmonary Clinic this week to check in about Aimee's use of the BiPap machine. The doctor was really pleased with her progress and impressed that we have really worked to make this successful. Using the BiPap machine is a big pain, but even worse was trying to get the mask to fit on Aimee's cute little face without causing skin breakdown and without leaks into her eyes. A few months ago, a mask was finally put on the market that is designed for children. We were really excited to try it, but when we got it home we found that we couldn't get it to stay on Aimee's head. Because Aimee has microcephaly (a really small head), the straps that are meant to secure it to her would just slide up and over causing the mask to cover her mouth or chin. We are very excited to report that about 3 weeks ago we devised a simple trick to get her mask to stay on her face properly through the night.

After we met with the doctor, we saw the BiPap technician. He takes the computer from the BiPap and downloads all the information off of it so that they can track Aimee's progress. The computer records a lot of information, including her respiration rate, leak rate, how many hours the mask is on, the pressure rates, ect. He said that he has been spending quite a bit of time with other kids in the hospital that have microcephaly trying to get these new masks to stay on the kids. They have been using medical tape and all sorts of other tricks. When he saw the little adjustment we had made, he was really excited. He said that he was going to let the nurses know so that they could use it in the hospital too. Fun to be able to share a success with other kids, even if it is a little thing.

One of the concerns I had with using the BiPap recently is whether or not to have it on Aimee when she is sick. On one hand, if she has sinus pressure or congestion in her airway, the added pressure from the machine could make her feel much worse. On the other hand, getting proper oxygen would help her to heal faster. I expressed this concern with the doctor and was relieved to find out that if we are consistently using it when she is well, her body will be in the best shape possible to fight illness, even if we can't use it while she is sick. Such a relief!

In other very GOOD news:
Thanks to several of you wonderful friends and family, we have the exact funds needed to take Aimee to the specialized therapy center in California! WOW! What a blessing and weight off of our shoulders. We are really thankful and so excited to report to you from San Rafael. We will be driving away from Washington on August 4th (2 weeks from today!) and our first therapy sessions will be on Monday, August 6th. We will keep you up to date from there on progress and what the therapy is like for Aimee.