Yesterday our old nemesis returned. The unexplainable and often random episodes where Elias just stops breathing. He had one late yesterday morning and a second one just before 10 last night. The second was a bit more intense and required us to put him on oxygen for about 20-30 minutes. Fortunately, he slept soundly through the night without any further episodes. It was a long, restless and scary night as we just waited. Hopefully, that was the last of them. If he has anymore we will have to contact the doctors and they will likely admit him. With tomorrow being Elias birthday, that is the last thing we want. Not only that, but we have Grandma M and Aunt Kim traveling in today from Virginia for the celebration. We appreciate the thoughts and prayers to get us through this without further episodes.
Elias has now been off the very strong antibiotics for two weeks now. He was doing wonderfully, but we have started to see him slip back to the old baseline slowly over the last week. The mucus fistula is beginning to leak again, more and more each day. He is more up and down like he had been in energy and how he feels. It has been rough to watch him like this because he was doing so marvelously. Don’t get me wrong it is not that he isn’t doing well still, it is just compared to the last three weeks there is a noticeable difference, even the doctors have noticed it.
As we said tomorrow is Elias birthday. Hard to believe he will be 2 years old (but still wearing 6-9 month clothes). He has finally broke the 17 lbs mark and is as determined as we have ever seen him to stand up. Tomorrow, as we have mentioned before is the first observance of International Fanconi Anemia Day. Katharine and I have been working very hard with a few others to make this a reality and we have pulled it off. We do need your help in making this a success though. We are asking that each of our friends and family donate $10 and encourage 10 others to donate $10 as well. This money goes toward research to finding a cure of this horrible deadly disease. We want Elias to celebrate many more birthdays with us and this is a way you can help make that a possibility. Thank you for your support