Friday, September 18, 2015

This journey

I have spent an awful lot of time in the car today driving back and forth from the hospital and doctor's which gives me a lot of time to think.

First of all...we lost another sweet friend from Cardio Pulmonary Rehab this week.   There was a lady there who was so taken with Shelbie.  They hit it off right away.  Her name is Marty.  They would do their exercises together and talk about everything under the sun.  The past couple of months, Marty has been gone doing family reunions and get togethers with her kids and sisters.

About three weeks ago, she ended up in the hospital with some heart arrhythmia.  She came to rehab the Monday after her weekend episode and talked about how much it scared her and she needed to work harder at rehab.  She hasn't been back since then and we've missed a lot because of all our stuff.
This past Sunday, Shelbie said to me, "I think maybe Marty died."  I didn't think so, she didn't seem that sick.  She acted as if things were going to be okay.  Well, she died on Sunday night!  Strange.  Her funeral was today and some nurses came in after the funeral and dropped off a program.  I was just praying Shelbie didn't see it.  I wanted to tell her in the car because I knew she would be upset.  She was.

I just can't help but think about life.  This journey we signed up for with full knowledge of how much suffering we would experience but how much joy too.  It's kind of crazy if you think about it, humans are pretty resilient creatures.

We met with our surgeon today and all three kids and their biopsies came back pretty good.  Quite normal in fact.  No cancer.  This is all good news if they weren't having any symptoms but they are still sick. So, that leaves us with the one thing our Gasteroenterologist was thinking...enteropathy.

Enteropathy is a disease of the intestines and becomes a serious and chronic problem in DC kids.  There is no way to fix it.  Because DC is a telomere disease, any place where cells have a high turnover rate, it is prone to disease, dysfunction and failure.  The gut is one of those places where cells are being replaced at an astounding rate...those cells can not be protected by the failing telomeres so...you end up with kids who can't absorb nutrients, digest food properly or eat without pain and a great deal of discomfort.  My kids.

At home, we are trying to stick to water soluble foods and eat frequently but for Spencer, it's not going so well.  I talked to him tonight and he is worn right out.  He has been working 13 hour days with a 13 hour school day in between.

Sigh....From here, we just continue to have hope and faith that somehow in spite of this, the kids can continue to do the things they love to do for a long time to come.  In the literature, it says that sometimes, patients can find a food that settles better than others and reverse the malnutrition and failure to thrive.  I sure hope we find that place!  Any chance it's on Easy Street?  Probably.


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