What a day!

Wow, how is it already 4:35? My daughter is sleeping and I have been on the phone for the last hour with doctors, research coordinators and dietitians...so much fun. We spent the morning with some good friends and had lunch at McDonalds (gasp). I know, i know, before Avery was diagnosed with OTC i swore I would never take her there but surprisingly it is one of the FEW places she can dine. The girls had tons of fun playing in the play place and the moms had lots of fun catching up and swapping mommy stories.

Today I finally got the call I have been waiting for, we finally got our initial and three following visits scheduled for Avery's new clinical trial. For those of you who don't know, Avery was accepted into a clinical trial for a new drug used to treat Urea Cycle Disorders. I am hoping and praying this drug makes our lives considerably easier. Her current medication has been an issue for the last couple months, she refuses to take it and we have to basically restrain her to get it in her, in the end everyone seems to be crying. It is the worst feeling in the world having to do that for your child, even when you know it is the best thing for them. Sooo anyways back to this trial. We will be starting in the end of January, driving back and forth to Cleveland about 9 times for various visits etc. Avery will switch to the new drug in the initial visit and they will monitor her for the following year. There will be lab work at each visit, which of course both Avery and myself hate, but really its no more than she would have to go through at home. The only part I really struggle with is that since Avery is so young it is hard to know how the meds are making her feel since she can't verbalize it to us. Im hoping that my mothers intuition will just take over, like it has in the past, and I will know how she is doing by the way she is acting.  I know it is a big undertaking but I really believe this is going to be an answer to our prayers.

Happy Wednesday Everyone!!

and now some Avery cuteness