Sorry it’s been so long since we have posted – it’s been pretty busy here. Casey has finally passed the 10 pound mark and looks so much different every week. She is still usually at 20ml/hour continuous feeding and she isn’t gaining nearly as fast as her doctors want, but the surgeon and GI doctors have agreed to not do surgery just yet. With a lot of medicine changes and her stomach growing over time, they are hopeful that a stomach reshaping won’t be needed to increase her intake. The surgeon is actually the one arguing that the result of this other procedure would be minimal compared to how hard it would be on Casey, so it was good to see the doctors compromising for what is best for her.
The billirubin protein count the doctors have been checking every week for Casey’s liver finally fell below the desired number and they took her off her Ursodiol. It’s so nice to have one less medication to deal with, and the way we see it, every milliliter of medicine she doesn’t have to take is another ml of food her stomach can handle.
Casey has her regular physical therapies on Wednesday mornings once a week, and we will move to twice a week as soon as we get comfortable with a therapist. We have also talked to our favorite nurse from St. John’s where Casey was born, and Kathleen will be coming out every week or two to watch Casey while we take a break together.
Daddy is taking some creative vacation time and is working 3 days a week (Mon-Wed-Fri) in August and September to help out some more at home. By October when he goes back, we should have a lot of the support services, therapies, and doctor’s appointments in place and things will be much easier.