Tuesday, August 30, 2011



Not actually a word that I’d normally associate with Madison….her sister, yes….but Madison’s qualities have not usually lended themselves to that term.  Madison is my “old soul”, cool, calm and collected kiddo.  But right now….right now the term “spirited” feels right.

Seattle/Camp Korey restored my girl to me.

I knew….we all knew…..she was not doing well before heading to Seattle.  Her energy levels were at an all time low, she was declining to do things she typically loves to do, and, I realize now, her spirit was just not there.  She wasn’t smiling like usual, wasn’t laughing, just was not herself.  Her doctors that see her regularly were noting it too….the usually chatty Madison was laying on the exam tables, half asleep, not interacting at all.

Sometimes you don’t realize how bad things are until after the fact.

What it is about going to Seattle that does this for my girl I cannot say for sure.  The cooler weather no doubt plays a part, and forces us to face the reality that summer’s in Texas are so very hard on her (on all the kids, but especially her).   The air quality is better, and that likely plays a part.  Perhaps Camp Korey just has a healing power that we may never understand.  Whatever the reason, the fact that my kids improve so much while we are there is one of the biggest blessings that comes from our ability to be there every summer.

We watched as Madison “woke up” once we got there!!  And so far, she’s maintaining some of that energy.  Meanwhile, I & her doctors are realizing just how down she was before we left, and rejoicing in seeing her with a bit of spunk.  Mostly, it’s the smiles that make my heart happy. 

My girl is smiling again.


Houston Trip #4

I am also rejoicing in the fact that we have actually managed to stick to our schedule for Houston this year!!  After two years of being down there 12 times each year, I needed to find the schedule that had the potential to work, and going every other month seems to have been the ticket.  We have NOT had to return unexpectedly at all this year so far (hoping this didn’t just jinx it!!)!!

We did have to head back down a short 6 days after getting back from Seattle, and while I would have loved to postpone it, I realized we just had too many important appointments and tests to get away with it.

Overall, things went well.  We got some additional testing done that was needed, saw a few of the kids doctors, and made some changes that we are all hopeful will improve quality of life for all three. 

We also were able to spend some time with our family and friends while we were there, and that ALWAYS does a heart good!!



I am, slowly but surely, adjusting to having oxygen in the house and our new routine.  All three are wearing it at night, and Madison is wearing it most of the time during the day too.  This could explain some of her improvements as of late, and she’s dealing well with wearing it in public.  It’s not quite old hat to me yet, but we are getting there.

New med routines are getting easier too.  As soon as I say that, we are making changes again, but we are making the adjustment pretty well.  Just need some time and we will all get it better.



And all over the place tonight.  We have some big (non medical) changes happening in our lives right now, and it has me stressed out, and in my world, stress = a lack of creativity!!  In other words, I tend to ramble!!!!


Mito Awareness Week

September 18-24 is Mito Awareness Week and the kids and I are working on some plans for spreading the word about Mitochondrial Disease all this month.  Watch for it here and on Facebook!!

Check out the piece that ran on Channel 8 here tonight about some friends of ours that are making a difference and getting the word out!!

Way to go Delaney!!!


Finally, Some Prayers

For our precious friends, Ali & Alex, who are in California as I type, starting the process of getting Alex on the study drug I’ve written about before.

For the McNeil’s as they prepare for Gary to get his new kidney.

For the Andrew’s as TJ fights a line infection.

For us for wisdom as we make some big decisions, faith that we are heading in the right direction, and peace in it all.

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