I AM KNIT TOGETHER: Quick Update

For some reason my brain isn't hitting on all 2 cylinders tonight so I'll focus on the information you want to know. Penelope had a modified barium swallow study today that showed that she is swallowing normally and safely (it was possible that the addition of the trach could have disrupted things) and so she will be starting some bottle feeding (PO) trials tomorrow. We'll start small and get more and more as she improves her coordination. Her little tongue is still a bit confused. But, it is in her bloodline to eat well so we have no fear that she'll do well in the end. Her weight has stalled a little bit so her feed volume has been increased. She did exceptionally well going down for the study today. She even did alot of her breathing on her own and only needed periodic manual breaths. Way to go Penny's lungs! The most exciting thing for me is that as of today she is and ex-drug addict! She got her last dose of her sedative wean and is now all Penny all the time. It really feels like I'm meeting her for the first times sometimes. Those eyes are so present now...it's beautiful.

Lydia is doing well. She also is having a few issues eating. Maybe issues is too strong a word. Maybe just opinionated. She's not a fan of squash and would much rather have her bottle than anything involving her spoon. If she sees the bottle you can go ahead and wash the bowl out because she's not going to eat whatever is in there. The most pitiful part is that somehow she's lost her voice! I swear we don't let her cry all day long (only for 10 minutes at naptime and for the little window of time during the day that she throws her temper tantrum) but somehow her little voice is gone. I accused her of sneaking out to a Skillet concert and losing her voice. She just smiled at me. I asked the speech therapist at the hospital today and she didn't seem concerned. Maybe she's just making funny vocalization sounds like Penny for solidarity sake. What a good sister.