January 5, 2010

Merry Christmas and a Happy New Year!

We hope you all (Charlotte's very kind blog readers) had a happy holidays. Charlotte celebrated her first Christmas in Houghton. This was the first year in a very long time (ever?) that Patrick and I have not traveled on or around Christmas day. While it was less stressful, we missed seeing our families. We were happy that our immediate families were able to travel to Houghton and that we had the opportunity to SKYPE during our extended family celebrations.

In December Charlotte got to meet her Aunt Kelly, Uncle Tim, and Uncle Dan for the first time, and she was quite pleased by all the arms available to hold her. On Christmas morning Santa visited Charlotte, bringing her cute, fuzzy, pink socks. She was decidedly indifferent. I'm sure next year will be a different story.

Charlotte made sure her mom and dad were awake to ring in 2010. We watched the ball drop and were grateful that we were sitting in a warm apartment rather than freezing on the crowded streets of New York.

Home Away from Home



We arrived in Milwaukee yesterday and are back at Ronald McDonald House. Charlotte was wide awake for a good portion of the trip checking out the world around her. It takes about 8 hours to get here with the extended stops we need to make for feeding and pumping, and it was a relief for all to finally get out of the car.

This morning Charlotte's speech therapist, Jen, from Children's Hospital of Wisconsin visited her at Ronald McDonald House (she's staying with us until she's admitted after her surgery) to watch her eat. Charlotte gave her a show and cried and pushed the bottle away. Eventually Jen persuaded her to take her usual amount, but said she has a borderline aversion. An oral aversion would be very bad news, so hopefully getting rid of the NG will help her. Jen is one of the great CHW staff that makes us wish we lived closer to Milwaukee so Charlotte could benefit from their expertise on a regular basis.

This afternoon we met Dr. Arca, who will be inserting the G-tube tomorrow. The nurse showed us how the "mickey button" (we thought it should look like Mickey Mouse, but it does not) will work and it seems manageable and more comfortable. We wish we didn't have to do this, but are anxious for 8 a.m. tomorrow when we can remove her NG for the very last time.

She had an Upper GI this afternoon to make sure her esophagus, stomach, and intestines are functioning properly and they are. I was hoping we would finally have a reason for why she doesn't eat, but I am happy to know she won't need more extensive procedures.

We're having fun walking Charlotte around Ronald McDonald House and showing her all the Christmas decorations and paintings. It's very quiet here during the day when most people are visiting the hospital, so it's nice to get out of our room a bit with her.

Tomorrow we hand Charlotte back over to the staff at CHW. This will be very hard, especially now that we are used to having her 24/7. On the upside, this stay will be much, much shorter than the last; we are hoping to head back to the U.P. on Friday or Saturday.