Yesterday was an interesting day of highs and lows.
I mentioned in the last post Brett had to pick Lucas up from school because had thrown up. Well, turns out he truly did have a GI bug 😦 We quarantined him to his room through yesterday evening until he had been puke free for 24 hours. He is just fine now thankfully.
Yesterday morning we met with a lovely gentleman with hospice. It was very sobering to sit and here about their support system and how they can help us. He has been an RN and hospice for over a combined 20+ years. This is only the second case of SMA type 1 he has encountered. The other was 5 years ago. Only him and one other nurse handle pediatric hospice cases.
During the discussion with him we came upon a random realization. Logan burps much easier now! When he was only a few months old we would fight to get him to burp. Now, you set him up as straight as you can, and a few pats later he lets out a huge belch. I’m not sure if I’m happy that he can burp easily or sad because that might be an indicator something is getting weaker.
On a lighter note…it snowed! A little :). Enough for us to scoop a little off the back porch into a small cup for Logan to feel. We have a few pictures of him looking out the window but you can’t really see that it is snowing. He touched the snow last night and at first he had wide eyes. Then it turned into his sour face. It was as sweet as it could be for him not liking how cold the snow was haha.
Today has been pretty low key. We watched Disney Pixar’s Cars. Logan fell asleep about half way through. However, Lucas and I enjoyed sitting on the couch with Logan sleeping and finished the movie. We also managed to wrap a few presents and make some presents during Logan’s naps. It was a pretty awesome day 🙂
Oop…and there is a squishy awake from naptime 🙂