I wrote early Monday morning that we would tell them we wanted to take her home and they agreed, so (in the snow!) I packed her up and drove home. We only live about a half hour from St. V's which isn't bad - we choose to go there since we were there for 12 days in February and all the doctors and nurses are familiar with her case. I believe it gets us a little better care, especially in the ER.
Since we got home, Addison is still throwing up occasionally. I really thought it was because she was backed up and now I really don't know. She doesn't seem as interested in eating as she did before, but if I was projectile vomiting through my nose, I probably wouldn't be too thrilled about lunchtime either. She seems to be happier during the comfortable times (when she's not having a pain episode) but that may just be because she's getting older.
I finally have some good news for this blog - but here is some back story - a few weeks ago, she was recommended to see early intervention because she stopped meeting her milestones. Well I can proudly say that last night while Adam and I were getting her ready for bed, I was pumping breast milk (still freezing it, just in case the Neocate doesn't work out) and the pump made a loud, rather inappropriate noise from the suction leaving my breast. Adam (so mature for 26!) said, "Mom had a BOOB FART!" and Addison LAUGHED AND LAUGHED AND LAUGHED. Out loud! It was the most beautiful sound. So naturally he sat with her yelling "Boob Fart!" in different voices for her, and she would respond with loud giggles every time. Clearly, she was blessed Daddy's sense of humor ;)
Also, over the weekend she picked up a rattle and held it high in the air and shook it purposefully to make noise. This was another first - picking something up on her own - and every time she does something new, it feels like such a big deal to me. She seems to be really coming a long way developmentally in the past few weeks. In another week or two, I'll be starting her on special baby food that is made from the same stuff as her formula. $90 a pack - I told her she had better get a job ;)
Of course there is bad news as well - we called Columbus and they are still trying to figure out what to do. Addison HAS to be able to empty her bowels at least every 2 days or she starts vomiting every feeding and gets all backed up and miserable. So far, nothing they give her orally works. They told me yesterday I could give her all the Miralax in the world and it's not going to make her go because its not a stimulant -its a stool softener and hers is already totally soft. My problem with stimulants is that they cause her a lot of pain and don't really work all that great for her. I guess we will see what they come up with today. I'll be back to write more about her biopsy results and our plan later. Thanks for all the messages, prayers and just for reading this and thinking about us from time to time.