Blog Archive

Friday, January 13, 2012


Home today! Still waiting on discharge paperwork, but we've got all her new prescriptions, we've received training on her Broviac (the port in her chest), her MicKey button (gtube) and making her formula at home. So since she hasn't has a seizure in 48 hours, we are hopeful that we can get a few days at home seizure free. As wonderful as discharge is, it would be really difficult to head home only to come back and get admiitted in a day or two. Right now we are in a bit of a routine, and as difficult as it is to stay, the upheval every time we come home and then leave again is real. The big girls feel it and Matt and I feel it. So we continue to pray for a total end to her seizures and the hospitalizations that accompany them.

We are so thankful she's stable, she's a little more alert and stable on the ketogenic diet, though it could still be weeks or months before we know if it's having any impact on her seizures. We don't know how long this calm will last, but we're thankful for what we have today. Thank you for all the support, all the emails, comments, texts, generous contributions to our nanny fund and meals. We simply could not have survived this admission without your ongoing and tireless practical help and prayer support. We're beyond grateful.

1 comment:

Unknown said...

We have felt it an honor to follow along with your blog. What an ordeal with Ava. She is indeed precious and we pray for her, you and the whole family as you deal with the frequent ups and downs. May God give you extra strength, wisdom, peace and may He bless you giving you times of rest.
Steve and Wendy Michels, Champaign, IL