With a side of Mayo

I don't like mayonnaise, but I married a man who believes sandwiches are naked without mayonnaise.

Will's first taste of Mayo.

It is funny that we have been raising our kids with the idea of asking for mayonnaise on the side.  Some like it and some don't.

Similar to our sandwiches, we have needed some Mayo on the side.

Since 2012 we have visited the Mayo Clinic in Rochester, Minnesota at least twice a year.  We visited January, March, April, May, June, July, and August but missed their supposedly gorgeous falls.  The weather has never been a deterrent but getting easy flights form RIC to RST is not the best.  YUCK.

Cheeseacurds, a local wonder.

Mayo gave Houlder a lease on life when no place on east coast could.

And once we learned that doctors could actually confer and plan together, we knew we had a patient for them in Frazer.

It has been a gift and responsibility -- lots of vacations in Rochester -- yee haw!

Prepping for EEG

My last blog post was two years ago when we learned from four months in patient at NIH that Frazer has a seizure disorder.  Two years later, off all seizure meds, they have abated.  No more seizures.

5 years ago Frazer had a slew of medical unknowns and knowns.  Some dismissed by locals and many had been unnoticed.  In this time a dilation was found in his spinal cord self-corrected (rare),  his cerebral tonsils, which were hanging into his spinal column requiring a decompression brain surgery but which HE opted not to have the surgery, have also self-corrected (rarer).

His short stature for which he has received different treatments has fallen away.  His bone age still lags behind by 2 years which means his growth plates are open and bones are growing.  As he squeaks closer to 17 every day than to 16, that is good news.

Finished and having ache and onions rings before we head to RVA

We know that his ascending aortic valve and his main pulmonary artery are dilating.  He may need medications or surgery, but for now observation is all we need.  Locally, in January, the dilation was dismissed despite genetic mutation he has that suggests that this could be problematic.  If Frazer has significant sharp pain in his heart, we need to move.  It could be his aorta separating from his heart.  Slow motion here could be fatal.  But, they encourage him to keep running and swimming. And, they are not dismissive.

The list goes on for the Fraz-man.  But, it has gotten smaller, mostly, while a few new things have jumped on board.

We are in process of getting the big guy checked as well has he fits the profile on having the cardiac challenge.

I still am not a fan on the condiment mayo but without a doubt, having it on the side has been a big deal for our family.