HUGE PRAISE

I've been meaning to post pictures and stories from our spring break trip and Isaiah's birthday, but have been too busy catching up from being away for a week and jumping back into our busy lives. I just got a wonderful phone call from Isaiah's pulmonologist and I had to share the news. Isaiah was diagnosed with Central Sleep Apnea around the age of 2, meaning that many times each night his brain would not send the right signals to continue to breathe and he would stop breathing for seconds at a time. He had frequent apnea episodes, some of them rather severe. We have been performing sleep studies every 6 - 12 months since the diagnosis. Last year's study showed enough improvement that we were able to discontinue the use of Oxygen at night, but he was still having frequent brief episodes of not breathing and of his oxygen saturation dropping.

Last month we performed an overnight test at home to measure his oxygen concentration throughout the night. This test did not demonstrate any events of oxygen desaturation. His oxygen level remained stable throughout the entire test which indicates that he was not having any significant apnea episodes!!! This is great and comforting news!

Isaiah also used to experience frequent daytime breath-holding spells when he would fall or get agitated or scared. When he first came to us, he had 8 - 10 spells a day on really bad days. These spells have decreased over time and in the past year he has frequently gone weeks without having any breath-holding spells. The doctors had told us that most kids outgrow these episodes around age 4, but that was hard to believe at the time. I'm happy to say that our now 5 year old has not had an episode in several weeks. We used to worry about going on trips of any length of time because he would "blue." We just completed a long trip to Florida and back in which he had a pretty high fever on the way home but never had a breath-holding spell!

It's so easy to focus on the current issues at hand and forget to get excited about the progress, but this is MAJOR progress! What great news!