No News Like Good News!

After quite a few long, hard weeks, we headed to see Anna's GI and neurologist at Montefiore on Friday to find some answers as to what was going on with our Anna Banana.

I am still so confused on what her schedule should be throughout the day. (Bare with me! Or is it bear with me?)

We were persisting through the night feeds until we had enough of the sleepless nights and the chronic congestion the following day, on top of her complete loss of appetite. Then we tried bolus feeds, 2 oz. at time. Still, congestion and coughing. Then we switched formula, from Vital Jr. to Compleat Pediatric. No difference whatsoever. And since she was receiving most of her nutrition and hydration through the tube, she wasn't as stimulated orally, and she started mouthing everything, clacking and sucking on her lips, trying to get through to us that she wanted to eat!

We reverted back to her old schedule, of a bottle in the morning, a pureed breakfast, a bottle before nap, lunch, bottle, dinner, bottle. It sounds like a lot, right? But it's what makes her happiest. One of our doctor's couldn't believe we went back to the old schedule of seven meals a day when we could just bolus feed her and do night feeds. The truth of the matter was, Anna didn't seem happy. She missed eating and she was congested all the time.

At present, we are using the tube to give her all of her medications, which is such an awesome thing because we no longer have to fight her to swallow them, she's no longer choking on them, and she no longer has to taste them!! I can also give her a few ounces of water after every meal, which has really helped with all of the constipation issues we've had in the past year and a half.

I will keep on with this daily schedule for as long as it makes her happy... And I know if she were to ever get sick (especially with winter around the corner), we can always give her food through the tube if she's too tired or ill to eat by mouth.

On Friday, when I told GI how miserable Anna was after the bolus feeds, and the severe coughing fits she went into a mere 5 minutes after eating, he deduced she has been aspirating on the acid reflux. He prescribed her a new medication that helps clear her lungs and also increases her motility, so the stomach empties faster, preventing the reflux. It has helped in the sense we haven't had the coughing fits (they were literally lasting 30-60 minutes before she calmed down), but we still have tiny bouts of congestion. I just wish the whole thing would go away but we are still ironing it out... We are going to have to reevaluate her nutrition and hydration goals in a few weeks, but for now we are sticking with what makes her happy, and she has been sleeping through the night again, thank goodness!!

Neurology was very hopeful that Anna would rebound from this regression (note: we are not having a "Rett regression") in 4-6 weeks. She said Anna was the tiniest patient she's had who received a g-tube, and that maybe just the overall size of it was making her uncomfortable because she could feel the other end of it, the part that's in her stomach, moving around when she sat on her own or stood up straight. She said the overall uncomfortableness of it all, on top of the poor sleep, could be triggering her tremors, and prescribed her an anti-anxiety (Lexapro).

It has done wonders for her! She is happier, more relaxed, and the tremors have decreased, so she is concentrating more during her therapies. The first day she had it, her physical therapist said she had done exercises with her that she hadn't done in months because her anxiety would prevent her from succeeding at them. She's more verbal now and because her hands aren't tremoring all the time, she's actually reaching (successfully) for things.

She has sat on her own a few times and is standing up a little straighter every day. But she is back to shimmying off the couch! Yay! And just the other day, she reached for her spoon to try to feed herself:

How awesome is she?? I love that lil' smile she gave me, she is so funny!

I also ordered her personal talkers, and we are teaching her how to shake her head "yes" and "no" and also push the buttons. We don't want her to be limited to just "yes" and "no" but it's a huge step for her right now. Sometimes she is responding with "yes" and "no" and other times she isn't. For instance, tonight, I asked if she liked her new respite worker (who I think is an absolute doll) and Anna shook her head "No"! Can you believe it? I took the time that the respite worker came to stay with Anna to take Gabe into the city for a little lunch date, where we met Daddy and had some pizza and hung out for a bit. When we returned, Anna had such a lil' 'tude that I can't help think was because she was upset we left her. She was so upset at the end of the night that she bit Gabe on the arm, he ended up in tears, and I did too! 

Over the weekend, I will be printing out the PODDS communication stuff so hopefully we can start working with that next week. We've also had some drama with finding therapists to replace the two that left, Anna's speech and feeding therapists. It's been 3 weeks and it hasn't been restaffed yet... I met one on Wednesday, educated her with all the progress we have made, and gave her a printed out-stapled-and-prepared the Multi-Model Communication Strategies for Children Who Have Rett Syndrome, only to receive a call that she doesn't feel qualified to work on her swallow therapy and has never worked with PODDS. 

So... They are restaffing the case. 

It's okay though... I hope -- I KNOW -- whatever therapist they find for us is going to be AWESOME and well worth the wait. 

So that's a bit of our update on Miss Anna for now, more happy news to come!