Day Six: Our Marathon Thursdays Begin....

Today all 4 of us woke up early and went to UCLA together. Today begins our "Marathon Thursdays"... the weekly day we will have ALL DAY MEETINGS with many of the specialists working with Katie... to be trained, counseled and given a progress report and information on their testing and findings of the week.

When we dropped Katie off at the clinic she was weepy and told us that her tummy hurt and she didn't feel good. She was clingy to me and I could tell she didn't want to be there this morning. I knew why too.... last night she told me that she didn't like Miss. Melody (the Psychologist she talks with). She said Miss Melody wanted her to fill out a "Feelings" sheet... and when Katie said she didn't want to... Miss Melody kindly said she'd wait till Katie was ready. Katie got an instant "tummy ache" and Miss Melody continued to wait. Katie cried... and started to melt down... and Miss Melody continued to wait. Later in the day Katie was able to finish the assignment.

What can I say... it sounds like the honeymoon is finally over.

Mark, Bea and I had meetings all afternoon with a family support group... and then with the psychologist, the neuro-psychiatrist, the social worker, a psychiatric intern, and the parental teaching nurse... and by the end of the day we were exhausted. We got some very interesting information though...

Katie does NOT have Duane's Syndrome which she had been diagnosed with many years ago. The geneticist says that Katie's tests have proven she has something called Moebius Syndrome, although it has not affected her facial muscles. It has, however, affected her eye movement, the formation of her feet and ankles, her teeth and jaw deformity as well as the mid-line defect of her entire right side. Looking back, we can see now why she couldn't suck, swallow, and breathe at the same time when she was born. You can go to http://www.moebiussyndrome.com/ and read about it. We will have a meeting with the UCLA genetics counselor to go over their findings in detail later. But for now, we have better clarity about what she is optically, orally and orthopedically challenged with. Have I mentioned lately how thankful I am to have access to one of the best and most renowned hospitals in the WORLD?

The neuro-psychiatrist told us that they are going to ween Katie off one of her medication (Abilify) this weekend, but keep her on the Clonidine for her Tourette's Syndrome tic control. Because we haven't seen positive response to the Abilify, we want to see how she is without it. If Katie doesn't do well or goes backward in her mood and impulse control, we will need to start her on a different medication that will need frequent blood tests (once a week) until the level is stabilized. After that, we will only need blood tests once every 6 months. Ugh... blood tests. Let's hope she does well without it.

It was another good but difficult day in family therapy for Mark, Bea and I... but it's encouraging to know we are finally getting in sync with each other as Katie's parents and guardian. It can only go UP from here.

I am absolutely exhausted to the bone and going to bed now. I have one more verrrrry early morning and looooong day at UCLA tomorrow before the weekend. Then I get to do it all over again on Monday... and the Monday after that... and the Monday after that... and the Monday after that... and... well, you get the picture.

Nightie night.