life and times of a family with a little man with designer genes
A Little Something Extra
Thursday, April 29, 2010
Thursday Micah update
Would you believe our little warrior is out of the PICU? And he spent most of the day playing in someone's lap or in his crib (though he's WAY to tightly tethered to his high-flow oxygen, which we're hoping can change to a regular nasal cannula tomorrow). He laughed. He signed. He babbled. He smiled. He gave me a cheesy smile! (though I was unable to capture that on camera)
Though he's very weak and somewhat wobbly, he is getting back to his normal self a lot more quickly than I expected after being sedated on a ventilator for 9 days (he wasn't on a paralytic drug the whole time, but a fair portion of it). PT and OT were both in today. The OT is going to recommend a Feeding consult so that I have some security around him trying to eat. He had a tube down his airway for 9 days and I'm a bit protective of his oral aversion. I'd like his first eating experience to be a good one so that we don't risk starting this feeding thing over from scratch.
Micah got some great snuggle time with Daddy this evening.
Micah is normally not a finger-chomper. But he cut his two upper front teeth while he was on the ventilator! Though I wouldn't have gone to such an extreme, I'm pretty glad he was sedated through that experience. :-)
Micah's first room in Intermediate Care had a lovely view of a port-a-john, a crane, and multiple construction workers (if you could have opened the window, you would have walked out onto the rooftop on which they were working). It was VERY loud and not very private (assuming you left the blinds open). I asked if we could change rooms and they were very accommodating (the charge nurse even apologized that it was going to be late in the day... they couldn't move us right away due to nursing assignments that had already been made). The room into which we moved late tonight has a stellar view of the Minneapolis skyline.
Welcome to our family blog. We have three boys: Nathan (7), Micah (4), and Matthew (3). Nathan is our energetic, sports fanatic first-born. Micah is our charming little guy, who happens to have an extra 21st chromosome (aka Down syndrome) and multiple associated health issues. Matthew is our big-boy-wanna-be. I started this blog the day after we found out that Micah has designer genes (Trisomy 21, aka Down syndrome). We've been through a lot of ups and downs (and a lot of time in the hospital), but God is faithful and continues to show His love toward us.