I found myself I remember being terrified once she turned 1 that I would soon see the decline I still have no idea if anything we do has given them the opportunity to defy odds as they have or if it would have happened regardless. iPhone snapshots from the car (excuse the blurs -- Scott was driving like a bat out of Hades to get us to the party on time. OK, pants off, socks off, leg COVERED in doodoo, we send Cal into the store to grab a few plastic grocery bags for the fall-out.
We love all of you. The Hartley Hooligans are a pair of sisters, Claire and Lola Hartley, born with microcephaly, a medical condition which is signified by a head circumference several standard deviations below the average. full potentials no matter what. FUDGE EVERYWHERE. I get close enough to realize that it is brown and stinky like. <3 www.thehartleyhooligans.com <3 "There is only one happiness in life -- to love and to be loved." Scott dives into the skids, carefully pulls the pants down to expose Mrs. Poopypants' blow-out, which by this time has smeared down to her SOCK on that one leg. Total perv status for both whippets. bottle to be sure she got enough. about doing so. The mystery continues... Lol. F'in A. I barely know where to touch, what to try to remove, it's all a clusterf***. lives and “save them” from their grim prognoses. She was unable to use food thickeners for her liquids because they contained her food allergens. We are in complete disbelief and shock that we are here again just shy of 10 months after losing Claire.
We were headed over to celebrate my niece's 10th birthday, stopped to pick up a veggie tray at the local Dillon's store, and I sent Scott in to grab it while I stayed in the car with Cal & the girlies. Easy peasy.
Five and ten years ago, our family was forever changed. so well & had such a good appetite. I am grotesquely fascinated and after observing it multiple times I am not convinced he pooped it. No wait... it's not that hint-of-a-turd, fart-like aroma which dissipates rapidly. ZILCH. The questions outweigh the answers.Jeanie, Jeanie - I lightened the pic with a photo app so I could see which pads were lost.
few months of Lola’s pregnancy: I prayed she would with her any way possible. And then I proceeded to dry heave like a mofo. Oh yes. They all swore we would be in and out of the hospital frequently with Scott tried to play it off on me, saying, "Since I'm, I freak out, yelling, "Ummm, heeeeeeeeeeeeell no, get your ass over here & help me! (Read below to see why!) When they come out of the dryer, we are on lockdown to prevent theft by whippet. We don't have time for someone to grow a tail, for the love of God!!!!!! This poor woman and I had a hell of an afternoon after her gut decided to unleash a geyser of diarrhea while we were eating lunch at a park. She could have left so many times over the course of her 13.5 years, and every single time, she chose to stay. Oh, and did you SERIOUSLY use the smallest rollers we had? I am a big fan of you and your girlies and this is an old post but I just couldn't help maself, had to say thanks. World's Smallest Ninja! I also was able to add butter and This basically means they are ultra retarded, can't walk, talk, or even move their tiny limbs in any useful way. REALLY not good. Sleepy girl getting some beauty rest before her big night! (Read below to see why!) You're welcome. They will not be able to swallow effectively anymore, and the fluid that is long. ~Jack Beauregard, Tuesday, October 11, 2011 at 10:57:00 AM CDT, Tuesday, October 11, 2011 at 2:19:00 PM CDT, Tuesday, October 18, 2011 at 3:29:00 PM CDT, Wednesday, October 26, 2011 at 5:28:00 PM CDT, Friday, January 27, 2012 at 8:41:00 PM CST, Thursday, March 29, 2012 at 10:43:00 PM CDT, Tuesday, March 25, 2014 at 6:32:00 PM CDT, Sunday, January 25, 2015 at 2:36:00 AM CST, Monday, December 7, 2015 at 4:37:00 PM CST. Cal & I are chatting away while we wait for Scott to come out with the goods when I spot him exit the premises, heading our way. Check out Claire's sparkly Chucks! We were blessed with two precious daughters, Claire & Lola, both of whom happen... 9.30.16 ~ Microcephaly Awareness Day with my homegirls I am embarrassed that it has been MONTHS since I last updated my blog. Straight up. Maybe even happier in this outfit than her previous adorable one. Copyright © 2011 Gwen Hartley.
We've got B.M., folks. April 28, 2006 ~ October 12, 2019 [Post from Facebook on October 12, 2019] Early this morning, with a full moon shining in our PICU window, our sweet Lola ascended into the Heavens to be reunited with her big sister, Claire. I have PS -- The brilliant combo of OT + hours of primping = CHECKMATE, yo. It isn't a secret that Us Hooligans have been MIA lately, and for the first time ever, I am perfectly OK with it. Lola Grace Hartley . To all the families out there who just had a child with special needs... YOU GOT THIS. Let's ditch these losers!" We want to thank our night nurses, babysitters, therapists, teachers, family & friends for always providing such wonderful care and love for Mrs. Pockey. resorting to solids more than liquids because she was able to tolerate those so Has she been really fussy? And brown. I turn Lola's ass around to get a better look -- and yes, all of this IS still occurring in the back seat of our truck (which is just one year old & seriously Scott's pride & joy STILL...) -- NOT GOOD.
Was he possibly considering re-eating it? big sister, and she seemed to get sicker more often than Claire also. And do you have MAJOR intestinal distress if you did?!?! feedings. Smell intensifying. Picture Window theme. ...and Lola was the mayor!so funny!I don't know you but I love the way you share your life and write this blog!
Licking it repeatedly like a poopsicle??? Thanks so much for the laugh my face hurts my tummy hurts and I think I got a little tea on my keyboard and monitor.Yes yes yes I am taking great pleasure from that moment of misery!Love you guys! and superheroes and badass odds-defiers, every last one of them. She is quite literally the strongest human being we have ever known. HA! Seriously was dark brownish on the outside. They told me that somewhere between age 1-2, the suck-swallow reflex turns into a “learned behavior” and that a huge majority of kids who have brain abnormalities simply at age 3 that we realized how important her hydration was. Tim Tebow Foundation's Night to Shine prom. We are going to miss her so incredibly much. You are and will always be family to us, and we love you so very much. It was so visually stimulating, and we enjoyed watching our girl take it all in, feeding off her happiness & delight. HA! It isn't a secret that Us Hooligans have been MIA lately, and for the first time ever, I am perfectly OK with it. [Post from Facebook on December 18, 2018], We are absolutely devastated to have lost our sweet Claire last night. We are eternally grateful for your giving heart, your ability to see the beauty in places most cannot, and for "fighting for those who can't fight for themselves." My most recent bloggi... You're welcome in advance for not sharing every single one of my completely-fucked-up-to-the-point-you-would-be-concerned-for-my-actual-... People often reach out to me shortly after they have a child with special needs. I SEE YOU. OMG!" The music was blaring, the ceiling lights were flashing and changing colors, and SHE. After having Lola, these words echoed in my head once again. Nausea in waves. Theme images by, Ok, so today I walk into the only carpeted room of our house upstairs to find what appeared to be a taco-shaped turd laying next to the changing table. Cash was flat-out.
I'm so screwed. They kept stealing looks at each other, almost like, "Hey girl, nice tiara!" greens) because she doesn’t have to taste it. Was it brought back in for spite or as a trophy of honor? I'm not sure who was having more fun that night -- Claire, Scott or me! He'd be in & out and we'd be off to the party. On Friday, February 9, 2018, our sweet Claire, whom we never thought would ever get to take part in "normal" high school activities, WENT TO THE PROM. Theme images by. Was it a "gift" for the girls?! I don't know how she continued to gain weight amidst all this chaos, but she did. She never enjoyed eating, and the g-tube, WOOHOOOOO! signs to watch for. Greeeeeeat. I'll do my best to recount, with more apologies, of course. Most have not been recovered (Thank God), though several random shards have been found amidst actual droppings on Poop Scooping Day with much disgust from the Scoopee. The world is such a better place because you are in it. "No, yours is soooo much better, girrrrl! Behold the video that has made me laugh-so-hard-I-maybe-peed more times than I care to admit! It's that full-on, disgusting, rank, hideous feces stench that hits you like a ton of bricks THAT EXACT MOMENT, you feel nauseous, and you vomit a little in your mouth. lifesaver for Claire, I did sort of feel like we lost one of the last to help with her reflux actually made her vomit even more, if that was even possible. Half-way through the clean-up, we realize that's not enough. ", I panic. the breast pump for 5-10 minutes to be sure I had extra milk for her and to lmaaao I would've loved to have actually heard what your son had to say. It was wayyyy browner & poopier looking in person. Many will begin to aspirate at some point. At least you can laugh about it!Miss seeing you all at C. Estates!Christy, Saturday Night Live seriously needs you as a writer--- I love all the different terms--- SO funny.xoxo, I feel your pain!! So fast forward to today, me 2 feet away from this gruesome, apparent shitstorm, and what option do I have but to pick the damn thing up?!
Her bi-weekly weight checks showed unbelievably slow but steady gains. OK, so yesterday was going to be a fun, family day. What ensued after this moment is but a blur to me now... a frightening blur.
Anything different going on whatsoever?
Me & Pocket ~ 3.29.17 HEY, GUYS! "Hold me closer tiny dancer..." ~Elton John, We were so stoked to get to meet one of our online friends in person whom we had known on Facebook for almost 4 years. 27 baby wipes later, swabbing from mid-back to ankles, we had 'er whooped. And not just any prom... she went to the. (Read below to see why!) Classic positioning having Claire's feeding pump in the background. That shit was POWERFUL, yo! Karma, babyyyy. To all the families out there who just had a child with special needs... YOU GOT THIS. she too had the same condition as her sister — While we knew the g-tube was a For more video footage of this breathtaking night.
All Rights Reserved. How could you not?!?!? At some I need you -- right f'ing NOW!!!!!". from. We don't know how Cash manages to find these because we have the basket of g-tube pads in an area he cannot reach. SO appreciate all who came before me carrying buckets... You guys saved. She was even tinier than her
No It was different from a normal poo in that it had a defined D-shape. WAS. I then did what any normal human being would do -- I sniffed it on the way to the trash. Claire was workin' the classic pin-up pose like a total girl boss. We also would like to thank the Wesley Children’s Hospital PICU team of doctors, nurses, respiratory therapists & staff for believing in our girl and for treating her with such love and respect. SO VERY MUCH. keep my supply up, and lastly, I would feed her another ounce or two via a Not a bit. Plus how far does his pooper have to stretch to get that thing out? something important I wanted to share with all of you. But all that being said, I love this goofball.