Here's some follow up on Sam since her appointments in December. She's on the higher dosing of vitamins and we saw a definite increase in her energy and talking (not clearer speech, but more talking, period. She gets quieter and quieter the more tired she gets). It's hard to say if the increase in vitamins is what made the difference or the almost four weeks off school she had. Now that she's back, we're watching to see what happens. She's not quite as great as she was two weeks ago, but is still better than she was. As hard as we fought to get her in school, if it's too hard and causing her to not do well, we'll pull her and figure that out in kindergarten when she has to go... We're giving it a couple of months and we'll see where she is.
Her GI stuff is not better. She's on Miralax (sorry for details here...) and her stools are softer, but she always complains that her bum hurts a lot and that her tummy's always full. She's been so miserable that I took her to see her pediatrician (who we love). Turns out she has some tears and the only way to fix that is to keep working on the constipation. The doctor ordered some x-rays of her stomach to make sure she wasn't backed up higher up. The x-rays showed that she is impacted up higher in her GI tract and the Miralax is just letting some stuff leak around, but isn't fixing the real problem. So we've upped her to a LOT of Miralax every day instead of a little every other day. We'll do this for 2 weeks, then cut it down a little for 2 more weeks, the get some more films and go from there. I can't tell yet, in a week, that she's feeling better, but she's certainly not feeling worse. Which is nice.
I think overall Sam's doing better and I wish you all could have been with her two Saturday's ago. She was funny. She was busy. She was sweet. She was happy. She was wonderful. It made me recognize how unhappy she'd been. It was great to see her so happy and "normal".
I just love this little girl so much!