Tuesday, March 13, 2007

The computers are finally working again! It's funny how much the families feel lost without them here. I guess it's because it's the only way to update and 'talk' to others while we are away. We all keep coming up to the resource center asking if they are working yet. Now I have an idea how Gavin feels, going into withdrawl, anxious! Poor little guy!

He is doing well today. No changes, but at least he's staying out of the I.C.U. One of the doctors said usually if they are going to go back it would be in the first 48 hours. He had occupational therapy today, yesterday he slept through it! They are working on tracking and grasping a toy. He doesn't follow directions very well, but then neither do our other boys! So we'll have to see if it's due to his having Down Syndrome, being kept sedated and ill for so long or if it's just in his genes! I do know that we have a long road ahead of us! He has so much to catch up on, plus his heart valve is still leaking quite a lot, which will make him easily tired out until it can be replaced. We thought we were going to come here, have the surgery and he'd come home (in "10 days to 2 weeks") all better. But it looks like he'll come home again with oxygen and a feeding tube, just like he did before surgery. We'll be fine by the strength of God, but it is a little discouraging. Please pray that we are kept free from anxiety and that we can take one day at a time and put our trust only in the Lord! At least it looks like, for now, he won't be needing the trach and vent at home! We are VERY thankful for this and for all the progress he's made so far!

It was and is hard leaving the I.C.U. Though it's a step closer to home we really miss the friends/staff we became close to there! So far we aren't as impressed by the care he receives in moderate care. I guess we are just used to excellence from the staff in I.C.U. It's hard to beat that!

Michal is doing well. His mom says they hope to join us in moderate care in a couple of days. We hope to be roommates again! It would make the days go a lot faster that's for sure!

Thanks for your continued prayers! God has blessed us with you!

Love, Alicia

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