Just for Fun!

I have been reading lots of other people's blogs and sometimes laugh and cry. However there is this thing called being tagged and little assignments others can give you to learn more about you. I have never really participated, but always enjoy reading them. So this post is more about me rather than Caroline, Carley, or Cameron. I probably would title this 10 quirky things you may not know about me:

1. I love fall.
2. I strive to be neat and organized at all cost! It is in my blood.
3. I love warm clothes fresh out of the dryer.
4. I love going to the Starbucks drive thru - it makes me feel grown up.
5. I love the smell of sharpie markers.
6. I love wrapping all my Christmas presents before Christmas Eve.
7. I really have the best intentions for doing WW, exercising and losing weight before the holidays arrive!!!!
8. I will probably go back to work one day doing something part time.
9. Teaching my children the way to live and act is the hardest job I have ever had in my whole life.
10. I have a fetish for stationery.
Have a great week!

Caroline's New Toy!

Signing and Communicating

For some of you who have not met Caroline I wanted to share all she is able to do in tun taking, communicating, and responding to us. She shakes her head no - no, waves bye -bye when she deems necessary. She is able to give eye contact and motion toward objects nearby. She just started signing please and dog this week when we ask her too. She has been sitting since 14 m, but because she has no protective reflexes we have to keep a pillow close for when she gives up and falls back. She is now eating table foods at all meals along with baby food as filler. She also recognizes Cameron and I as Dada and Mama and is able to verbalize these too! we are excited in all of these new developments and efforts. For playing imitating games she plays peek-a-boo and patty cake. Loves to hear itsy bitsy spider and always raises her hands to music! We are grateful and hope more communication develops in time. She tries to copy our sounds and mouth noises, but sometimes noise just isn't there. Her stander will be here in two weeks. Our PT has been very instrumental in moving Caroline forward as well as our speech therapists in guiding me in how to practice exercises and try new foods with Caroline. I appreciate those of you who listen, watch from the sidelines, and encourage me as days go by. Caroline still benefits from much prayer and God's direction in our lives. I am blessed and encouraged!

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.