Monday

Just got word one of our doctors that needs to look at the genetic explanation/information from Cincinnati is out of town until Monday, so no news or plan until at least Monday.

Crossed

Still waiting for the update from our doctor.

When you're a parent waiting for news it is frustrating to be told you will hear in two days and be going on a week.  

I know it all takes time, and this situation is complex, but we have now spent years waiting.  In some ways, it is ok because it means for years, our precious boy has been getting through all of this one day at a time.  On the other hand, I am beyond ready for answers so we know if he can go to pre-k next year or not.  He is growing up and some things cannot be put on hold indefinitely.

Fingers crossed we get a call today or tomorrow.  Not that we will have answers, but we will know which tests we are facing.  At least if they decide before his infusion next week we can do all the blood draws then, which is a plus for sure!

Project Gratitude

One year ago, I was in a position I never imagined I'd experience in my youth.

My uc had begun to flare out of control.  I seriously thought it was a terrible flu, not my uc. Two days after spending a great night out with friends celebrating my birthday, unbearable pain set in. At this point I didn't run to the doctor's office like I thought I would the night before, I was desperate by morning, and demanded to go to the er once the girls went to school.

That was the beginning of a long hospital stay and an even longer recovery.  There were points I truly didn't believe I was going to get better.

 The sedation for the pain left me cloudy, often just barely able to function through basic tasks.  Weakened, I struggled to walk short distances and stairs were non-negotiable.

Hospital doctors and nurses saved my life last year.  Even when my surgeon teased me about not cutting me open just yet, maybe the next day, I knew they were doing everything they could to help me, yet was also well awake of just how dire my situation was.

Despite the hurdles we had crossed before this point, Nick and I were to be tested again, pushed beyond limits we thought we could endure.  Without Nick, I would not have been able to recover, nor could our children have thrived through such a frightening circumstance.  As things started to look up, doctors told us just how fortunate I was, there was a possibility I may have needed much more intervention or may not have pulled through.

While I have struggled through many of set backs on our journey, this was a challenge I never expected.  People in their mid thirties should never be as ill as I was, they should be vibrant, full of strength.  I was neither.  Luckily, Nick and I had some outstanding individuals there ready to support us in any way possible.

It is these people I have spent many hours thinking about, many hours wondering just how to thank them, for in their own ways, they too saved us last year.  Then I thought, well, wow, there are so many people I have been blessed to know, whether our paths crossed for a moment or for eternity.  I wonder if these individuals realize just how much they have touched my life or brightened a dark day.

While I think often of these people, I've often wondered if I've shown them enough thanks, or if I've been so tangled in our obstacles that I've neglected to share my appreciation. It is these thoughts that lead me to a little project, one purely or gratitude.  Project Gratitude is just another little blog, one where I can take a minute to recognize those I am truly grateful for and share the amazing ways these individuals have made a difference in our little world. Order of entries are just as I'm inspired to write.  I'm planning to share a few moments of gratitude with you each week throughout the next year.  To me, a heartfelt letter or note is the best gift any one can give me, for words that pour out of the heart are as real as it gets., not something Hallmark can emulate.  To those of you who have never wavered, no matter what, there are no words rich enough to measure the depth of our appreciation, but I will.try.

Basics

So last week we did get a bit more news from Cole's immunologist.

Although it was news, it didn't really give us any more to go on or additional pieces of the puzzle.

Our local physicians have heard back from the experts in Cincinnati.  She even forwarded the very technical response to us to read, even though she herself was consulting Cole's local genetic team to ask for further clarification of what was being explained.

While I don't really grasp it all, there are a few basics I do understand.

The test we had been waiting for this summer, the one that the lab did not run as they felt it would not provide any information we would need, might in fact be important to run.  If this is the case we will have the blood drawn as soon as possible.

There are some other panels that it seems might be able to be run to determine the fhl diagnosis or probability.  Again, if these panels are able to give physicians a new piece of the puzzle we've been trying to understand for the past three years, I'm all for it.

Really, the rest was rather technical.

Still, in my mind, the more questions that are asked and the more people trying to solve this mystery the better.  It could be that one set of fresh eyes that gives everyone else a new perspective.

I hope to have more to share soon.  I am just grateful for all the doctors who keep looking and trying to make sense of all of this.