sweet and sour

Quick update because there is a lot to process.

SWEET:

The folks administering pulimonary testing were great! Don't know the results yet but exercise is looming in front of the gentle giant.

We went to a group education class to explain POTS to two other kids and their parents. It was thoughtful abet too cheery, but shared lots of info.

POTS-- postural orthostatic tachycardia syndrome.  Part of diagnosis which we knew but knowledge of it and treatment options much more fleshed out.

SOUR:

Hmm, not eating the lemon but sucking the rind.

Houlder saw the neurologist today basically to see if their were any prescriptive ways to control headaches. Good news is that through all the various Neuros I have dragged Houlder to in the last year he has had every treatment including Botox that is out there. So, I guess that is sweet.

And I guess it is sweet that Dr. Mack looked over every sheet of paper we brought and read all the images himself.

So, here is the bitter. Last year during our first hospital stay, I pushed the Neuro to order a full MRI in case they were missing something. It came back okay with some inclusive stuff. We were told there was nothing wrong. No one seemed to notice his low hanging tonsils. Not the ones in the back of your throat but the bottom of your cerebellum that hangs above your spinal column. Those tonsils -- the ones on your brain.

It could be that they interrupt the flow of cerebral brain fluid. They could be just a little low and nothing wrong. Or he could have chiari malformation.

I wrote about Chiari in March. Frazer has it but is mainly asymptomatic although lately he has been showing some signs.

Any of these could be effecting the POTS, the headaches, the dizziness, and so on.

Yeppers.

We are here until Wednesday now. MRIs, special tests, neurosurgeon, and neurologist next week.  He has more testing and doctors tomorrow.  It's why we are here.

Plus, another visit possibly in June but hoping to bring Frazer then too.

Learned this afternoon while we meet one-on-one to plan an exercise schedule and program for Houlder that we may need to stay another three weeks for this pain program.

It will depend on some of next week's tests and doctors.

Sweet and sour. It is a prickly discomfort to know Houlder may need to cope with more, but I am grateful it was noticed and being further explored.

Off to dinner.