We had a busy week of celebrating some birthdays. Luke turned 5 on Thursday and we had a party for Justin's 30th on Sunday. Luke wasn't feeling 100% on his birthday (go figure) so we stayed home and ate yummy food and Blackhawks cupcakes. He really wants to go to the car museum in our area, so some weekend when Justin isn't working we can head out to see some old cars. Thankfully Luke was feeling better in time for preschool on Friday and could enjoy being the special person for a day (he is the only one of our kids who will celebrate their birthday in school, the girls are all in the summer). And we had a fun time with our family and friends with a Mario/Elevator mechanic/Blackhawks/Harley themed party (Luke's cake was a Wii remote if you can't tell). Now things can quiet down a little on the party front.
I just got an email from the geneticist today. It sounds like NIH wants us to come for an endocrine evaluation first, at our own expense, then come for a return visit if they determine Emily is eligible for the program. I have to make some phone calls and get more information and see if we can't do some evals at our children's hospital.
We also have been to see our pediatric GI. He wants to change the formula Emily is on, as her weight has plateaued. The new formula has a different kind of fat, and less fat but higher calories, so that she could gain weight without stressing her liver. The unfortunate part is that the formula will cost us about $1000 a month, so we are asking insurance to pay for it, and if they don't we have to research some other options to help pay for such an expense. The good part is that she will need less volume so I won't have to spend all day feeding Emily. And Emily has made some leaps of her own. She is taking bigger bites and eating the whole piece of food rather than just nibbles. She even told me she was hungry the other day in the car. Heidi and Anna are putting up less of a fight about going to school and Justin is working 5 nights a week for a little while. There is always something going on!
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