Saturday, May 7, 2011

Gone Fishing?

We have been neglectful of Elias' blog. It has been both unintentional and unavoidable. There has been so many different things involving him going on. Between all the school meetings, transitions in and out of programs, and medical "stuff" we have been absolutely jam packed. Hopefully we will get back into a routine that is less chaotic and will allow more opportunities to update. There really is a lot to share, but we are going to have to space it out. There is simply too much for one post.  We will start with the latest milestone.

Sunday - May 1st - was Elias' 3rd birthday and anyone who has been following over the years now that something always happens. Last year was the worst and a resuscitation display for our guests when Elias stopped breathing over 15 times. The year before that Elias was sick and having difficulties. This year he got all his issues out of the way early. The weekend before he was very ill. We had our hands full, but managed to keep him out of the hospital the first half of the week and he finally began to turn the corner. By Sunday he was back to his self. Because of the history surrounding his birthday we kept the day low-key. Elias can't eat cake - since he is tube fed. He cannot really socialize with other kids because of the issues with his airway and immune system so there was no party. And he has no concept of what a birthdays are since we have a very limited communication system with him because of his hearing loss. So that was a recipe for just being together as a family, opening a few gifts and going about our day as normal. His cares schedule has ramped up with meds, feeds and extra fluid and pedialyte that he gets so little time off the feeding pump. So he wasn't able to play with his stuff too much. Even when he had the chance he was more interested in running around the house. There is little room for adjustment unfortunately, but that is the life of a complex medical child and we are fine with that. Elias was fine with that. He was happy all day and that is all that matters.

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