Last night I finally got some rest and today I feel much better about life in general. The staff all ask if we are staying at the hospital or at the Children's inn, and when I tell them we are staying here, they all look at me with such sympathy as they turn their eyes to the small sofa I have to sleep on. The truth is, it isn't too bad. Plus, I'm a good sleeper. I took a picture of it, I will try to post it when I get home.
Now then, onto the important news of the day.
Madison's day began with an ultrasound of her kidneys, liver and uterus. We already knew that she has two normal kidneys and that her liver looks good, but we have never had her uterus or ovaries imaged. Many girls with TS do not have ovaries, or have "streaks" of ovarian tissue.
Madison's ultrasound tech said that she saw two ovaries.
But. we don't know exactly what that means.
Her endocrinlogist came with some lab results. Her estrogen level is 61 and there is evidence that madison's pituitary gland is sending signals to her ovaries to produce more estrogen to start puberty, so I am led to believe that Madison's ovaries aren't working as well as they could be. We will have all the answers on Friday at our conference when we talk to Dr. Bondy.
We had a long visit with the dietician, because Madison's triglycerides are 220, they should be less than 150. Her LDL is 40and her HDL is 99, which are within normal limits although the HDL is on the high end of normal. We talked about adding more whole grains and vegetables and limiting refined sugars. Madison is excited to go fishing and catch dinner. One thing that made me happy was that the dietician recommended that Madison avoid "diet" foods in favor of naturally occuring foods that may be higher in sugar or fat.
We then had an occuaptional therapy eval, which was pretty quick since Madison seems to be pretty good at things like grooming and cooking and cleaning. Well, at least she is capable of being pretty good at those things...
Next was a nice visit with a vocational therapist who talked to Madison about friends, school, and possible future careers. She also told me that I was doing a good job letting Madison speak for herself and she thought we had a very nice relationship. It was nice to hear. She said I wasn't too hover-y.
The therapists asked a lot of questions and I will be interested to see their reports. They both said that they thought Madison was well-rounded, well-adjusted and didn't seem to have many of the problems that can be typical of TS.
Tomorrow, cardiac MRI and 24 hour BP monitoring begins. We will have an afternoon free so we may go into Washington DC, depending on what type of equipment 24 hour BP monitoring entails.
And today is the Feast of St Peter Fisher and St Thomas Moore.
You're so catholic-y! I wonder why her triglycerides are so high? Is it TS? Is it her gene pool?
ReplyDeleteSo proud of Madison for being such a guinea pig. Are you looking for answers here or just helping NIH find answers about TS?
I am pretty sure that when we are admitted they asked if we wanted a chaplain to visit and I said no... but He works in mysterious ways, I guess. The priest is really nice, of course, and he tells great stories.
ReplyDeleteWe aren't looking for answers so much as we are providing data. I remember when she was diagnosed, I got in the internet right away and there was so little good research. We are hoping that through this study another family will have better answers in a few years.
Also, it is nice that everywhere we go here at the NIH, people know about TS, we don't have to explain it. The principal investigator here is the country's leading ecpert on TS so we are happy that Madison will get to have a consult with her.
Speaking of guinea pigs- This morning she had a cardiac MRI in a different building than her abdominal MRI, the research center. There was a "mouse MRI" room and an "animal MRI" room. A lady came to ask how long Madison's MRI was going to be- she needed the coil Madison was using for a pig MRI.