Aaron's Hyper IgM Journey

Thursday, May 29, 2014

Aaron's first major ouchie (sort of)

We arrived in Cincinnati a day early to do a DEXA bone scan. Results came back with a Z-score of -4.5. That is pretty darn awful. On the bright side, he can recover quite a bit as long as we can get him off these steroids.

Wednesday morning we went for his treatment. I got him out of the car, he tripped over my foot and boom. He fell on his knees and hands and got his first nasty scrape of his life. He has had many ouchies caused by poking, chemo, and gvhd. However, this was his first normal ouchie. He did a pretty good job scraping a good amount of skin right off his knee. He was pretty tough about it and enjoyed watching the nurses clean it up.

The rest of Aaron's body is falling apart. Eyes are getting worse; liver and kidneys are pretty much lousy; and his blood pressures would send a normal person straight to the ER to avoid a stroke. I am praying that he can get off these steroids. Thanks to some awesome moms that I have never met, I am hopeful that Aaron can still recover. A network of people on Facebook has given me immense support. Their children have been down the same road and are doing relatively well now.

As I have been preparing Aaron's homeschooling lessons for next year, I have felt overwhelming joy. God has been good to us! Sometimes it is hard to see, but lately I am seeing it. Aside from the fact that Aaron's illness just plain sucks, we have been given so many other positives. I have gotten to spend so much time with Aaron that I never would have otherwise. For the upcoming school year, I have come up with some super fun Bible studies, science projects, and other activities. I have done extensive research and found the best reading and math curriculums for Aaron that far exceed what the Common Core could ever teach him. I am looking forward to joining a homeschooling group as soon as his immune system improves that will give Aaron some fantastic peers to build friendships.

Please send some prayer or light or whatever you believe in our way. Aaron has got to get better soon!!!

Posted using BlogPress from my iPhone

Location:Crescent Ave,Covington,United States

Sunday, May 11, 2014

Apple pie diet

Aaron was admitted for a week to the hospital in Cincinnati. His tummy had gotten HUGE! His intestines were very inflamed and putting pressure on his organs. He could not drink a full glass of water without throwing up afterwards.

The only treatment for this was to have nothing by mouth to eat or drink for at least two days. The first day was a nightmare. First he was asking nicely and then begging. By the end of the day he was screaming and hitting me (something he never does).

The next morning, when Dr Davies came in, he was begging for pie. She said "let him have pie!" The only thing he ate for the next two days was apple pie filling. He was a new kid. He began laughing and played all day. He told jokes and made pretend pies with the nurse. He showed the doctor his tummy. He did not scream at anyone. This was unusual behavior and absolutely amazing!

By the time we got home, his tummy had gone down two inches. He still has a long way to go but he seems more comfortable. As we go down on steroids, he should get even better.

Aaron is still holding strong with improved gvhd. We will finally try to decrease the steroids again next week. This will be a major accomplishment.

Aaron's behavior is still not great. He has not been a very happy kid much of the time. I pray that this improves. I look forward to this summer. Serena will be here and the kids can play together.

- Posted using BlogPress from my iPhone