Genetics and MORE

Wow! what a busy day. We woke to no power this am. So I took a quick shower and loaded the girls in the car for a Starbucks/ Goodwill drop off run. Then we went to the bank and got gas on our way to Physical Therapy. After therapy I took Carley through McDonald's drive thru. After we came home she played outside in her clubhouse with her mickey stuffed animals. She took her snack up there and fed each one of them. She is a hoot with a wild imagination. She took her socks and shoes off and snuck water in and out of the house to make mud pies. She is as much responsible as Lucy is for the freshly dug hole in the middle of my yard. They tag team and make their own sandbox despite us. Cameron and I have not filled her sandbox due to the fact of ants in Florida and the fact that Carley loves sand and dirt and think every toy needs some. So I plopped her in the tub before dance to scrub her black feet. Then off to dance. While Carley danced I went to the grocery store with Caroline and back to dance. Then home to put away groceries before dinner at Applebees.Then 30 min on the treadmill before I made it to the computer. So onto yesterdays news.......................

I was excited to meet Dr. Percyk our new geneticist. He spent an hour with us and was very interested in observing Caroline and listening to our story. I explained new things that were evolving and that daily things we deal with. We will not be going to GI or nutrition for the time being. We are still weaning her from her super duper high calorie milk to a regular milk. She is resisting! The stuff taste like a vanilla milkshake from McDonald so I can see why she is resisting the weaning process. Plain old formula is not the same as a milkshake....
She is now 18.5 pounds. Dr. Percyk said if she is ever hospitalized that he and Dr. Soha are to follow her care not any other docs who are not familiar with her history. He told me he likes to see his patients every 4-6 months to get to know the kids and families. He does not currently have any Caroline's, but had familiarized himself with her disorder and understood it as far as I could tell. He gave me a pager, cell number, and e-mail so he can be reached at anytime!
Very interesting to me. He also wants to read her first MRI to detect any mosaicism in her brain which may alert us to brain capacity, type of function, and possible seizure activity/likelihood. I never knew we could even look into these things. He wants to do a second MRI around April to compare MRI's. It is outpatient for her because she will have to go to sleep. Cameron and I think this maybe useful information for us and others. He offered to sponsor and speak at a future mosaic triploidy conference if I wanted to host/create the event with him to raise awareness and invite our support group to Jacksonville. How exciting!!!!!!!! This is a dream and a long way off, but none the less exciting! He said not much is known or published about this condition and mostly what is published is very dim. He said I look at Caroline and see that someone is home and she is very interactive and aware!!!! I smiled and beamed. So my list of doctors gets simpler and things get clearer to me as time marches on with God's blessing and surprises in our lives.