Queen Teen has had two Easter baskets from Lucille Packard Children's Hospital, which is two baskets too many. The first Easter we spent there was after her feet surgery when she was 11. The second was this past Easter.
We finally heard from the neurologist who wanted her admitted to the hospital immediately for tests, so we dashed down to Stanford and spent three days there. Queen Teen was low on glucose and electrolytes, but a couple days of IV fluids brought the color back to her cheeks. Our new neurologist is excellent and I have a lot of faith that he'll be able to help us sort out the mystery of Queen Teen's disorder.
Disorder. Syndrome. Why can't I call it a disease?
We're home now, waiting for the results of all those tests, including an EEG to check for possible seizures. Her strength is poor and stamina worse, but she's slowly feeling better (I can tell she's feeling better because she's getting bossy again). Eating is still tricky and some days she has trouble swallowing juice. Other days she can eat Mac and Cheese with gusto. Just like everything about her neurology, her symptoms come and go. She's still not strong enough to go to school a full day, but maybe in another few weeks? Time will tell.
That's always the answer: time will tell. What will happen next? Time will tell. What does she have? Time will tell. What can we expect? Time will tell...
I found this great site that explains what Queen Teen has: What is Mitochondrial Disease? The United Mitochondrial Disease Foundations is an advocacy and resource organization which also raises funds for research. With a long list of possible Mito diseases, why is Queen Teen such a mystery? Why can't we discover her disease's label?
And why do I need to know so badly now?
I could lose my daughter; I know that now. Am I strong enough to go through this with her, to be there for her no matter what may come?