Sorry I didn't get an opportunity to post yesterday. But I just thought I'd let you know that Micah had a poopy diaper on Wednesday night. Yay!
Yesterday we attempted to feed him 10 cc's (vs. 5 on Wed.). It took a long time to get that much into him every 3 hours. He hasn't gotten the suck/swallow/breathe thing yet. The speech pathologist warned me yesterday that they will basically increase the volume in his feeds at least every 24 hours (if not 12) and that Micah will likely not be able to keep up with that. She wanted to prepare me for the inevitable NG tube. This could take a while. The patient care team is checking with our insurance to see if we could get him transfered up to Neenah. It's not likely that it will be covered on insurance, but it's worth a shot.
A physical therapist came by on Wednesday afternoon. She gave me some tips on how best to hold Micah and position him for playtime and sleeping, given his low muscle tone. This visit happened after I gave him a bath. I don't know why, but the reality of Micah's diagnosis of Down syndrome was so very apparent to me at that time and I just started to cry (and cried most of the night). I've hesitated to even mention that on here because I'm aware of how many more people are reading my blog now. I want to be okay with his diagnosis and I don't want to be sad about this part of who he is. And I want to appear all together and not struggling and content with what God has given us. But this is the only place I'm documenting our journey, so I guess you all are going to have to deal with the fact that I'm human and not some spiritual giant (well, those of you who know me best know that isn't true anyway...).
Nathan has been here for a week now (barring Sunday night when we all went home). He's testing every limit with me, specifically, but also with my mom now, so she has to be exhausted (she went home for the weekend and Mark arrived last night). We'll decide at the end of the weekend whether it makes sense for Nathan to go home or continue to stay here. I missed him so much when he wasn't here, but now that he is here, I sometimes want to throw him out a window (like when he's pitching a major fit and screaming at the top of his lungs). [please don't accuse me of child abuse... I wouldn't actually throw him out a window...]
So, the new prayer requests are: 1) Micah would learn that this eating thing is not so bad, 2) Nathan would settle into our current living situation, and 3) BCBS would have mercy on us and pay for the ambulance transport home so that we can all be together in the same city.
Legal Thriller by Rachel Dylan
4 weeks ago