Thursday, July 28, 2016

Thankful Thirsty Thursday

So, a few days ago, this happened... again!  (My longtime followers might remember THIS VIDEO I posted on YouTube back in July 2013.)  We were between feedings, and both Scott & I stopped to get a drink, so I thought I'd offer one to Lola, too.  My girl drank from that water fountain like a G!!! And clearly, now we're gonna need to install one in the living room.  HA!  I am trying to hunt down a converter for our little, skinny reverse osmosis dispenser that might turn it into a drinking fountain. How awesome would that be?!

I had to share pics and a video with all of you.  Thank you SO MUCH for always seeing my girls' worth & value.  You have no idea how much that means to all of us!






video


xo

Wednesday, July 20, 2016

Finding Answers

It isn't a secret that Us Hooligans have been MIA lately, and for the first time ever, I am perfectly OK with it. My most recent blogging hiatus was so needed after a CRAZYYYYYYY winter/spring with all the Zika virus/microcephaly media attention. We are grateful to have had the privilege of sharing our girls' lives, and we were lucky to work with some amazing journalists who truly have gifts of telling our family's story so beautifully.  To them, we say THANK YOU!  

But I'm not gonna lie, it has felt positively scrumtrulescent getting our lives back to "normal." (If you don't click through and listen to that 0:02 clip of Will Ferrell saying that genius word on SNL, you are missin' out!) Where was I? Oh yeah. We've just been livin' the dream! Without going into too many details and instigating a full-fledged sob-fest, suffice it to say that I am oh-too-painfully aware of the fact that my only-child-who-will-attend-school-and-likely-graduate-in-a-robe (though not ruling anything out with our dwarves) has <gasp!> ONE. YEAR. REMAINING. Oh yes, you read that correct. Cal is about to start his SENIOR YEAR OF HIGH SCHOOL. My babyyyyyy!  My son.  MY HEART.  I almost cannot even discuss this situation without tearing up. My emotions have been swirling like a real shitnado up in here. One day I have brilliant perspective, complete with a smile, uplifting thoughts about how "maybe by then I'll be ready," and how he is "preparing me slowly for him leaving by being gone all the time now," and I should be proud of myself that I've "raised him right" so he is "ready for the world," and how much fun it will be to have a student in college who is hopefully playing basketball and growing up and figuring out his future & all that jazz.  I try to convince myself how awesome it will be to have my "nights free" and how much we'll be able to "get done around here" and how we'll be "more social with friends we've lost touch with" and how we'll be "poppin' bottles" & "knockin' boots" more without all of Cal's schedule in the mix. 

Other days (and trust me when I say I try to not let these days outweigh the others), I am a complete disaster. I cry randomly when people ask me non-related questions.  I bring it up at inappropriate times.  I think about it incessantly.  I dwell on how DIFFERENT life is going to be without him around... how QUIET this house is going to be... how different *I* will be. (Damn floodgates opened up already?!?!) Don't get me wrong, (and here's that damn disclaimer again!) I LOVE MY LIFE AS IT IS.  But the keywords there were "as it is." I'm not a huge fan of change. I very much like my life exactly as it is RIGHT THE F NOW.  Thinking ahead to the future has me more flustered than I feel 4 minutes into HGTV's Tiny House Hunters. (I mean REALLY?!?!?  Who wants to live in a 173 sq. ft. house with other people and pets FULL FREAKIN' TIME?!?!?)

We've been living in the moment, you guys. FULLY enjoying the year I DO have left.  I don't wanna miss anything. We've been following Cal all over the country to his various AAU basketball tournaments & truly trying to spend time with him while we can. Hope you guys understand!  I do try to stay active on our Hartley Hooligans Facebook page and on "The Gram" in case you need your daily fix of Da' Hooligans. See you over there!



Recently we re-started genetic testing for Claire & Lola. We are working with Walsh Labs, a part of Boston Children's Hospital, on our quest to try to find answers about our genes.  We began genetic testing when Claire was born, and so far, we have zero answers. We are aware that could happen again, but with technology being more advanced now, we're hoping that this time will be different. The process could take months, years or even decades.  No one knows.  But we're happy to say that the ball is rolling.  We are hopeful that in time we'll be given more clear answers as to how our girlies got their genetic superpowers. Also, we're hoping to find out if Cal is a carrier as well and what his risks are for having children like Claire & Lola someday many, many, many years down the road. We will certainly keep you all posted of any results that come our way!

Our girls were very brave getting their blood drawn.  Missy may quite possibly be the best phlebotomist on the planet. She was so patient with the girls, their high tone, and all that 'tude.  Big love to her for always making my their blood draws as non-dramatic as possible!

"Bitch, I KNOW what's comin'.  GET OFF OF MEEEEEEE!!!!"

"Son of a Nutcracker, that hurts!!!!!!"

"Oh wait.  That's not so bad!"
(Shortly after this, Claire fell asleep while Missy finished up!)

And then it was Lola's turn...

"Ummmmm, tell me you are trying to help me do my best Funky Chicken move right now..."

FFS!!!!!!!!!
(The vein blew.)

Trying a large vein in her lower leg...

Ouchy!
(The large, super-visible vein that was going to be "THE ANSWER" blew also.)

Moving on to the groin where we were able to get a full tube+ from our wee little Lola!
(Did I mention that it took like 5 minutes for it to slowwwwwwwwly trickle out?!)  
Blood from all 5 of us plus saliva from Lola (since she was only able to fill one tube of blood!) was successfully sent to Boston!  YEAH!  We are also on a 10 month waiting list to be seen in office for a genetic evaluation in KC.  Hoping to start WES (Whole Exome Sequencing) then in addition to the testing Boston is doing.  Fingers crossed!

The girls have been busy during summer school learning about the Badlands & various other awesome ecosystems.  Can I just get an "Amen!" for all my fabulous teachers/therapists that take time out of their summers to come work with our girls?!?!?  WE LOVE YOU!

Amy playing hardcore rap videos about Bison for the girls off YouTube.

Claire gettin' it DONE in her new Rifton Gait Trainer!

If you didn't see the video of her walking, click on this link to see my girl in action the FIRST TIME SHE GOT IN HER WALKER!!!!!!!!  Talk about a blubbering mess of tears... it was THE MOST BEAUTIFUL THING I HAVE EVER WITNESSED IN MY WHOLE LIFE, aside from my kids' births & possibly that one raccoon video where he stands on his hind legs and uses his tiny human-like hands to rattle that rock against the sliding glass window repeatedly for like 2 minutes so he can get more food in his food bowl because he is a freakin' G, but that's beside the point.

MY GIRL IS WALKING, YOU GUYS!!!!!!!!!!!!!

The long lost Kardashian sister, minus the gigantic ass, fantastic tan, and fake boobs.
We shall call her Kola.  Or maybe Kocket.  HA!



xo
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