Moving Geneticists & Infected Gtube Site

To make the longest, longest, most frustrating story short:

Lots of phone calls were made yesterday between doctors and genetics, we are moving Annabelle & her care to a Bio Chemical Geneticist that is not local but has been involved and is very familiar with the OTC-D Disease. I will be spending my next several days/week to collect all the information we need to travel. Our appt is scheduled for us to arrive at the hospital Monday, January 27 at 9:00am and go from there.

This is a huge step in Annabelle's care. Finding the right doctor.. SPECIALIST that studies, is knowledgeable and confident in her diagnosis and treatment plan is what our little girl demands and deserves at this point. I have no idea what tests or procedures will be performed at that time.

I also finally got hold of the surgeons office and forwarded several pics/video of Annabelle's G-tube site. Because of the duration, drainage and spreading ulcers/sores around her site and tummy; they concluded she likely has either Staph or Strep surrounding the stoma. We're moving to a different treatment plan and medications and hopefully it will be better soon. Annabelle doesn't seem bothered 'too' much by it. You can definitely tell it is tender and sore. She guards it often but not as bad as she was weeks ago. The only time she truly complains are when we need to hook her up for feedings (every hour and a half). We are giving her several baths showers a day and cleaning the site CONSTANTLY from all the drainage. It stays crusty and yucky all over her stomach and the dried drainage then bleeds like crazy if you wait too long to clean it off. Gross kid.

Here is a video of her site after a long bath and scrubbing. It looks very, VERY good in my opinion, it's clean and mostly dry. But you can still see the sores and redness.

& here is our sweet girl the night before last. Each evening I walk in the door and am greeted by this beautiful little fighter. Some days she is bouncing around and ecstatic to see me and other days she is laying on her back and struggles to even turn her head in my direction. The best thing in the world is being able to drop my things from the work day, kick off my shoes and just crawl in the floor to play or curl next to her to snuggle. Daddy arrives home shortly later, usually right before 6p and the night really begins with loudness, stories, laughter and the marathon to 7:30p bedtime!