First off, Ivey is doing AWESOME! She is happy and playful. Having the new ‘button’ instead of the G-J tube hanging from her tummy at all times has given her some freedom that she has never had. She is adjusting to her new palate. It is fun to watch her check it out with her tongue. Unfortunately, she is wearing welcome sleeves for two weeks to prevent her from putting her fingers in her mouth. Welcome sleeves velcro around her arms to prevent her from bending her arms at her elbows. Ivey also has to rinse her mouth with Nystatin twice a day. This is a medication to prevent a fungal infection in her mouth. Tastes absolutely terrible-I tried it. Imagine not getting to eat and the few things that do go into your mouth tasting like some thing you apply to your feet. Ugh!!! She is a little trooper. Happy as a lark.
Confessions from the mind of this sleep deprived mom navigating the world of complex medical needs, deafblindness, and special education. And y'all, it may not always be pretty, but it's real, and it's always for the love of Ivey.
Comments
Haven't visited in awhile, but I still pray daily for your sweet family.
I am so happy for ya'll!