Being Flexible

I have some news to report.

First Shelbie.  She is being tested for some thyroid problems and Epstein Barr virus.  Not really a thyroid problem but a problem with the dosing of her thyroid medication.  Her thyroid was destroyed 15 years ago by her immune system.  We have not heard back on those results yet.

It looks like she is headed back to ITP land.  So frustrating!  She had another drop in her platelets yesterday.  We are hoping that the IVIG buys us some time.  I just know it's only a matter of time before we have to do chemotherapy again.  Shelbie's dysautonomia is out of control too and causing some of the weird fluctuations in temperature. Every time her platelets crash, it is preceded by these exact symptoms she has been having over the past few weeks.  They ruled out anything scary like lymphoma and leukemia so that is great!  Relieved but bugged at the same time.

Samuel had his appointment this afternoon with the Ophthalmologist.  He was a lot more scared than he has been letting on.  I had to calm him down before we could even get out of the car.  He was scared that he had a brain tumor.  He doesn't and he won't be needing a glass eye!  Whew!  He does however have Ocular Migraines.  For some unknown reason, the arteries in his brain, leading to his eyes constrict the flow of blood and when that happens, he loses his vision. There is no pain associated with it and there is no warning that we have noticed, when it is going to happen. It is a neurological problem, not an eye problem from what I understand.  This just fits right in with his mitochondrial problems and common among kids with mito disease. The doctor emphasized how important it is for Sam to try to find triggers or signs when it starts happening.  It can be really serious if he is doing something like driving, obviously.

During the exam, the doctor had to use several different drugs to look at different nerves, arteries and of course the retina.  In order to do all this, he had to numb his eyes and dilate them.  It's been since 2pm this afternoon when they did all that and his pupils are still gigantic!  I don't think that is normal but there is nothing I can do about it tonight.  His vision is blurry and of course the light bothers him but he insisted on going to his gymnastics class.  I hope does okay.

I know that the only way to get through all this is to be flexible.  We have to roll with it but honestly, I have been kind of digging in my heels lately.  I don't want to have to be flexible.  I hate this.  It's pretty sad when a bone marrow failure syndrome like Shwachman Diamond Syndrome sounds better than mitochondrial disease.  With mito, we just never know what is going to fail next and we are always caught off guard.  It's not fun just in case you were wondering.  So, we will move on with a new kind of normal accepting the fact that sometimes, Sam will be blind and sometimes, he won't be. Sometimes, Shelbie's autonomic nervous system will function and sometimes it won't.  Sometimes, Spencer will be up all night and all day, day after day with chronic nausea and overwhelming fatigue and sometimes, he won't be.



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