Thus far, since we have been home it has been pretty positive around here. Emileigh is doing well. She gets a six hour break from the feeding pump each day and is really beefing up her giggle and laugh. She is showing more of her personality. Her G-tube surgery was postponed and then cancelled after our last hospital stay. We met last week with the Feeding Team and her GI doctor is putting his recommendation in for a GJ-tube. I agreed completely and feel her NJ feeding has been nothing but positive. I am excited and nervous about the surgery. It is weird how you want something to be done and over with but then at the same time you feel that having the surgery makes the diagnosis more real. I am normally more of a realist, where I try to think of all scenarios possible and try to be prepared for any outcome. But through this I have been more positive than normal. So when I have been thinking "oh, she will just need more therapy" or "she will develop seizures" (and the "typical" PMG stuff) and then we have to plan a surgery it hits you a little hard at times. The idea of a more permanent thing that represents this diagnosis is scary and upsetting. It's so hard to express in words all of the feelings and the roller-coaster that engulfs my brain. Sometimes I confuse myself as to how I began thinking about what I was at that time.
I am still waiting to hear from the scheduler about when her GJ-tube surgery will be. Meanwhile, I emailed Tubie Friends about our situation. See back in April when I scheduled her G-tube surgery for May I ordered her a Tubie Friend. They are Build-A-Bear animals that are specially made for children with feeding tubes and trachs. So Emileigh received a puppy with a G-tube and we were in the process of naming her when she was admitted. Then the surgery was postponed, then cancelled, then changed to a GJ-tube. So I emailed them again and asked if I could donate the puppy to another child and could purchase another animal for Em. They quickly replied that I should donate the puppy to a child life specialist at Children's. Then the specialist can show parents the puppy and show them where to apply for their own Tubie Friend! I am so excited! Then more people will hear about them and it will possible reach more children than if I had just donated it to another child. That makes me happy :D
But I wanted to give a quick update even though I felt there wasn't much going on around here. But it's like they say at the hospital... no news is good news!
