Alex and Maddy

Alex and Maddy

Sunday, April 5, 2015

Happy Easter

Happy Easter!

I really am not sure how the months fly by quite so quickly! I cannot believe it has been 6 weeks since I updated!

Alex continues to experience the best year of his life. I am really unsure of what to say, but so very grateful for the incredible team of doctors and nurses who have gotten him to such a stable place. A few years ago, this "normal" life living without constant hospitalizations just didn't seem possible. To watch Alex thrive and enjoy being a boy is such a joy to me.

By far the greatest joy is watching the love between my two babies. While having another child was something I wanted so desperately. Alex craved a sibling every bit as much. He never takes his sister and his love for her for granted.  He frequently tells her that she is his greatest gift. he has even pronounced Halloween his new favorite holiday since that's when he got "his bundle of joy". Anyone who spends any time with my two comments on how special their bond is. It really is more then I ever hoped for.

Maddy continues to keep us on our toes. She was hospitalized shortly after my last update. She had a fever and croup. Her blood counts did not respond as they should so she had to be admitted for 48 hours. After that admission, her hematologist decided we needed to support her little body more. She was started on a treatment to force her bone marrow to produce more neutrophils (a kind of white blood cells). She has responded exceptionally well. The treatment can range from once a week to every day. It is a shot so they try and use the lowest dose possible. She had such a great response that we are treating only twice a week. This medication should keep her from future hospitalizations for "routine" illnesses because her counts are much closer to normal range. We also had an upper endoscopy to figure out her malabsorption. My understanding from the nurse is that the biopsies are normal so I am not sure where that leaves us as the doctor was sure they would be abnormal. We follow up with our GI next week. We also had a spine MRI trying to determine why Maddy's brain and legs don't communicate correctly. That was also normal so we need to move on to other testing. Dr. Koenig has ordered two other tests to look at muscle and nerve function. We are trying to get them scheduled ASAP. We are trying to determine if there is anything else we can do to help her besides continuous PT. We pick up her orthotics on Tuesday so hopefully that will help as well. Despite her challenges she is thriving socially and emotionally. She is so smart and FUNNY! My sassy little diva.

Mimi and PopPop came to join us on our trip to Houston. It was good to see them and have some fun times, but I wish we could have had an enjoyable vacation vs. medical appts. I can't wait for our trip to SC this summer!

Hoping for a nice quiet few weeks!

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