February 11, 2011

Nothing much is different today. Jaela did a really good job taking the bottle. She took it three times and ate about 10 ml each time which is double the amount she would eat yesterday. We got to give her a bath again which was a good thing. She was starting to get pretty stinky.

I've called Shriner's Hospital and I'm waiting for a phone call back to find out when we have an appointment. Shriner's does an OI clinic where doctors, geneticists, physical therapists, dentists, and all sorts of other specialist come to the hospital and consult with the parents and children so we don't have to go to individual appointments. The next one is in April and we plan to be there.

The woman I talked to at Shriner's gave our email address to another mom with a son that has severe OI. She's contacted me and I wrote back and asked her quite a few questions. I'm really excited to hear back from her and see what she has to say. I feel like the doctors at the U can tell us what a textbook says about OI, but they don't know what it's like to have first-hand experience with it like a mom does. And I also feel like sometimes the doctors underestimate our baby Jaela. They didn't want us to hold her, but she loves being held. One nurse didn't want Jeremy to play with her hair (she thought it was over-stimulating her), but she ABSOLUTELY LOVES it when Jeremy plays with her hair! We got sick of being told how to be her parents so about a week ago we decided that we weren't going to ask to hold her anymore, we were just going to do it. We weren't going to ask to be her parents. Now the nurses just let us do our thing and hold her as much as we want, and wash her hair when we want, and other things parents shouldn't have to ask to do. Since then everyone there has commented on how good she's looking and how she's acting like she feels better and that it doesn't seem to bother her at all for us to handle her. The nurses have even started asking us how to take care of her :)

The only bad news we have for the day is that until we're told otherwise, we can't use the super cute car seat we have. We have to use a car bed which is the ugliest thing I've ever seen. It's a beige bath tube with a brown cover. Not cute.

I have another set of hair pictures!

This time Jeremy was caught in the act!


This is the super fluffy partial faux hawk that he gave her


I take credit for this one. I held her flat against my chest and the one side went super flat and the rest was fluffy :)

This isn't a hair picture, but look how tiny she looks next to Jeremy's hands!

Jeremy and I want the Koechers to know that we love them and are praying for them. I feel like the most comforting thing there is to say is families are forever.