Ashley is a very medically complicated person. She has deafblindness, epilepsy, brain tumors, ADHD, feeding issues....and after our visit with the endocrinologist yesterday, suspected hypothyroidism.
Hypothyroidism in and of itself is not difficult to treat. I know because I was diagnosed with it over twenty years ago as a result of Graves Disease. I take a daily pill of synthetic thyroid hormone, and as long as the dosage is calculated correctly, all is good. However, the doctor suspects Ashley's thyroid issue is a result of the seizure medication she takes. The synthetic hormone may or may not work in her case, and may or may not cause other issues. And, she must continue to take the seizure medications. As usual, there are no easy answers when it comes to Ashley's medical treatment.
The endocrinilogist has ordered some additional blood work, and until I let him know for the third time that Ashley was adopted, he had also ordered some genetic testing. Also, since hypothyroidism results in weight gain (the reason that brought us to the clinic in the first place), the doctor also wants us to consult with a nutitionist, the first appointment for whom was not available until June.
I've wanted to meet with a nutritionist for a while now, but it does scare me a bit. Ashley has a very narrow range of foods she will eat by mouth. Until she graduated from our children's hospital feeding program, she was completely tube fed, but for the last 10 years or so, she has survived on that narrow range of food with supplemental tube feedings of blenderized fruits and vegetables. What scares me is that the nutritionist may suggest more tube feedings. Ashley has worked so hard to eat by mouth and I really don't want to regress on that. But, for her health, we do need to keep her weight gain in check.
So yet again, there are no easy answers. But I guess that is what makes my beautiful, special girl so unique! This weekend we will be celebrating her 19th birthday. At age two, her doctors predicted she wouldn't live to see age 5. So, I'll take the complications because they sure seem
to be working so far!
(p.s. that is NOT Ashley's tummy pictured above - it is just a picture of a g-tube site)