I hope that everyone is doing well and getting ready to share in the holiday fun. I know it's been a while, but I figured I would give you an update to close out the year.
Andi and Bella have turned into little monsters. They have found their words, but amazingly don't seem to want to say please and thank you. Shocker.
As far as Piper goes, things are pretty much the same, maybe a little worse. Back in October we went to Houston to see another specialist. She confirmed the diagnosis (not that we expected anything different) and suggested a different formula to put her on. It's called an elemental formula that is essentially partly or fully digested so it's easier for her to take in. That seems to have helped some. She also had a good 4-6 week run where she was waking up multiple times throughout the night. I'd get up with her and try to calm her down. After an hour, I'd hand her off to Belinda, etc. Fortunately, she seems to have gotten past that for now. She hasn't gotten up that early in probably a month or so.
Let's see, what else. We put her on some new seizure medicine, but found out that it was causing crystals in her urine and that could lead to kidney stones. Talk about kicking somebody when they're down. So we switched to a different seizure medicine and that seems to be working. We've also gotten hooked up with hospice to provide help and relief as needed. So far we haven't needed a ton, but they do hand deliver her medicine, so we've got that going for us. Which is nice. Lastly, and this is a new thing, she's been suffering from some choking issues. We think she is having a hard time swallowing her saliva, as it seems it is building up in her throat then it seems like it either gets caught up in there or goes down the wrong tube. Then she'll cough and cough and sometimes gag as she is trying to clear her airway. Definitely not a pleasant turn of events.
Belinda is still in contact with the doctor in Cali and we are hopeful that the genetic test will come back positive and we can get her into the drug trial, but there is still no word on when that will be done.