Something Sweet Amidst the Scary

Hello, Mamas, I hope that summer finds you enjoying lazy days with sandy toes.  First, I should assure you that neither Brandy nor I has been abducted by aliens nor fallen into a deep hole from which we cannot escape.  We’ve just been busily rushing around like modified chickens with our little heads cut off.  I have been struggling over a post for a while and just can’t quite get all that I need it to say into it without tipping over into harpyville. Thus, I have temporarily tossed that post aside to write about something completely different.  On “Tell Us Tuesday,” I want to share what pretty much occupies my every waking thought right now and I am begging for any hints those of you who deal with these issues can give me.

Okay, remember a few months ago when I took my pink princess to Vanderbilt Children’s Hospital to investigate a possible mitochondrial disorder?  As I also shared, they told me that they believed that there was something more than her known diagnoses going on but that they didn’t feel it was a mitochondrial issue.  Well, since then, we’ve been back to our usual Cincinnati team and, although they never mentioned mito before we went to Vandy, they are suddenly fairly sure that her issues are related to mitochondria.  Really people?!!! You know I adore you but mama’s gonna need a neck brace for the whiplash and a box of wine with a straw (like a grown up juice box) if we keep going like this.

Well, while everyone continues to hit the books and do whatever my wonderful team of pediatricians, nurse practitioners, and specialists do with their big pricey brains, we continue to have some alarming stuff happening.  First, the princess continues to fatigue too easily (even for a munchkin with low muscle tone.)  After almost any period of active play, she complains of pain; pain with no clear cause.  At times I can feel the trembling of her muscles like she’s just maxed out at the gym after something as simple as walking slowly at the zoo for a couple of hours (she rode about 1/2 of the time.)  Also, it’s summer now and she’s overheating.

Now, the truth is, my girl has always gotten very red, very quickly, in any degree of heat.  It is with that deep aching degree of mother guilt that feels like the chains Jacob Marley wears in A Christmas Carol that I admit to you that she’s had some degree of most of these symptoms all of her life.  However, it wasn’t so odd that a younger child took a couple of naps a day–was it?  I assumed that complaints of pain were reactions to her sensory issues–that makes sense, right?  When my daughter (who we knew dehydrated quickly) got really red and lethargic in the heat, we just took her inside and pushed fluids.  That’s what good mothers do–isn’t it?  I should probably also mention that, since she was walking on her own, she had a really sick baby brother who spent the most of his tiny life in casts and we didn’t spend long periods out in the heat anyway.  And all of those statements don’t make it one bit easier on me to say,  “My baby doesn’t sweat and I didn’t notice this or it’s worse and I can’t tell you which.  My baby girl’s core temperature shoots up fast and that’s really scary and I am just now logging this–and, God help me, she’s six!”

Well, over-compensator that I am, I am logging this stuff like an anal retentive auditor at a Tea Party convention now in both photos and by temperature.  I can tell you, after a 25 minute leisurely stroll that included two five minute breaks in 74 degree weather, she looked like this:

Notice how red she looks?

Notice how red she looks?

Her full biological sibling who ran most of the way, climbed everything in sight and is normally identical to her in skin tone looked like this:

No flushing, a little sweaty

No flushing, a little sweaty

His temperature was 97.6 degrees.  Hers was 99.7.  Last week, we went to the Kentucky Horse Park.  It was rainy and cool all morning and she alternated between riding in her Convaid Stroller and walking.  She looked great.  About the time we made our way down to the playground, the sun came out.  After 20 minutes of playing, she was beet red and her temperature was over 100.  We left and got her cooled down but my mind was made up.  Something had to be done.

I contacted our pediatrician (mostly for advice because they really are working hard at this) and our neurologist (the head specialist on our Cinci team) and said I had to have answers.  I don’t know whether to push her in tiny increments to build stamina or to hold her back when she wants to play because I know it’s going to hurt her later.  I do know that failing to sweat and overheating is dangerous and the fan/mist bottles and neck wraps aren’t enough.  I am blessed because they stepped up the search and are putting together a plan for active searching now.

Additionally, after months of looking at every type of cooling vest on the planet, I was just going to break down and buy one.  Still overwhelmed with the cost and variety of vests, I reached out to two of my dear friends with kids who have mito-issues and settled on an amazing lady’s page called Cooling Vests Made With Love.  She is a modified mama like us and she makes the vests to order with neoprene covered in fabric that the kids will actually want to wear.  They each come with one set of cooling packs that are thin and light weight and they are TOTES affordable compared to others like them I found online!

Below is Mylie’s vest, it ships today!  A pink princess vest that my sensory kid will love because it matches her cotton candy soul.  I love it more than words can say.  I love it because it gives me hope that my little girl can play just a little while longer because she deserves to be a kid.  I also love it because, when I have no idea what to do but pray and wring my hands, I feel like I did something.  Do any of your kiddos have temperature regulation issues?  Would you share some of your tips and hints with me?  If not these issues, maybe share some of your mom guilt issues?  Maybe I’ll feel better myself as I point out how much you guys shouldn’t feel guilty 😯 Please share because I can use it.  Until then, we’ll be planning an active day followed by a couch potato one so that my girl can heal and dreaming very cool dreams (with rainbows and unicorns, of course!)

XO, Mamas–Nic

Front of the cooling vest

Front of the cooling vest

 

Back of the vest

Back of the vest

 

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