Anyway, up until yesterday, the only thing I could get him to eat without throwing up was Puffs. But I keep trying anyway, figuring eventually we'll get there. Well, yesterday, I decided to bite the bullet and try again with Cheerios. I braced for the worst. BUT he did it!!! He ate 15 cheerios in a row without so much as a gag! I was thrilled!!! He did the same thing again today, so I know it wasn't just a fluke!
It's really a huge milestone for us because it gives us such hope that eventually we can get past whatever it is that's causing this and eventually he'll eat regular food. It's so true when they say that, with these heart kiddos, you really don't take anything for granted.
And in other big Bodie news, he started waving today!!! It's a very short wave, but it's definitely a wave and it's so cute!
Please keep Bodie in your prayers on Wednesday, as he's having a repeat swallow study. They scoped him at his ENT appointment a week ago Friday, and it showed "minimal" left vocal cord movement. Bummer. :-( We don't know if there has actually been any improvement, since "minimal" is pretty subjective and depends on who is scoping him. His first scope was done by a different team at CHLA - oh, and we can't actually get our hands on that original scope, so we don't know what it said. So, the ENT decided just to order another swallow study to see what we'd find out. There's a big part of me that's scared to death that he's silently aspirating and we just don't know it. I know logically that's not happening since he's been eating for 8 months now with no signs of aspiration (if he was aspirating, it would be 100% clear by low sats corresponding to feeds, which he just doesn't have), but I think I was just so traumatized by his first swallow study) that this week's study has me pretty spooked. Please pray for good results on Wednesday's swallow study. Thanks! :-)
Oh, and because it wouldn't be a Bodie update without a picture, here's one of Bodie last night. We went trick or treating with Sierra's BFF Sofia and her mom Val and dad Rik. Bodie didn't last too long before he was annoyed and wanted OUT of the sling. So, Dusk took him home and they handed out candy to trick or treaters while we finished up. When I got home, this is what I found - bunny rabbit in an exersaucer by the front door. Too freaking cute.
Yea Bodie! Keep up the good eating work! :) Praying for a successful appointment on Wednesday. I'm sure he'll do fine- it sounds like he's on the right track. :)ReplyDelete
Praying for a good swallow study!! We have had so many with Liam and I know the anticipation and anxiety they can cause =) Liam's right vocal cord is paralyzed, but you would never know it by the sounds he makes! Good job on the cheerios! That is very exciting!!ReplyDelete
You are a miracle, my Bodie. I love you. Best of luck with your swallow study tomorrow. God bless you and your beautiful family. Big hugs: NairiReplyDelete