Please Daven for Avigayil Bas Rivka Batya.

Please Daven for Avigayil Bas Rivka Batya.

Friday, September 18, 2015

The Long Awaited Update

I apologize. I know many of you have been waiting for an update. I have been meaning to post for a while, but it was a crazy summer with the kids home and it simply got away from me. So here it is.

Avigayil has been improving. After a long summer with little progress, she mad a sudden leap. For a few weeks this summer she even went without her breathing machine or oxygen. It was so nice. She was able to crawl around the house (until now she was only able to crawl around one side of the living room because her tubes wouldn't reach.) We took her to the zoo and to the park. She had a great time.

Here she is at the park without anything on her face (her cheeks are still puffy from all the steroids).

It was nice to have a few weeks off completely. However, Avigayil was getting very tired from the effort and her last blood tests showed that her CO2 was too high. She is now back on the machine overnight and for several hours during the day. I try to do it during naps if she sleeps long enough so that she can still move around freely. When we go out she is usually ok, but if she gets too hot or too cold or too tired she has difficulty breathing and requires O2.

In addition, she lost weight this past month. I believe that it is from the increased physical activity and the exertion of breathing without support.

The good news is that she is still spending a good part of the day breathing on her own. She is spending the time exploring the house and getting into everything that she could never reach before. This means that we are going into the winter with a higher baseline then before.

She has already had a few viruses and now she has strep. We are hoping that this winter will be easier then her first one.

She is also moving ahead in her physical therapy. Avigayil crawls and can now pull up to stand. She is having difficulty with walking because of her low muscle tone, but we are working on it.

We are also hoping to soon start feeding and speech therapy. This will help her to learn to eat by mouth.

We are in the middle of the holidays so things are still pretty hectic. I am hoping that when we get back to a regular schedule after sukkos I will be able to post more regularly. Thank you everyone who has been thinking and and praying for her. Our hope is that this year will bring a lot of progress and healing, not just for our daughter but for all premature and medically fragile children.

Shana Tova.