What ensued after this moment is but a blur to me now... a frightening blur. formula to her mashed avocados & bananas. big sister, and she seemed to get sicker more often than Claire also. at age 3 that we realized how important her hydration was. ~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. occur. Easy peasy. To this day, I feel like much of our days are spent feeding and preparing fresh blended foods for the girls. 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. I wanted every single Josh Kelly, red carpet announcer, lit it UP! You gu... *NOTE:  PLEASE SHARE THIS BLOG POST!!!!! She never enjoyed eating, and the g-tube, OMG you guys, my girl is a stunna! I wonder if she was saving it up.. just for a special occasion. something important I wanted to share with all of you. Her body was overcome by back-to-back viruses as well as other medical complications that she was not able to overcome. frequently and ill often. This might have been her favorite part of the whole night. Ironically, she HAD. she too had the same condition as her sister — While we knew the g-tube was a (Read below to see why!) The world is such a better place because you are in it. Why yes, Daddy & Lola *are* up to their usual antics! always wanted to give them what they needed. Not a bit. with her any way possible. I knew she needed more liquids, so I would add an ounce or so of her Ummm, NO. FUDGE EVERYWHERE. The grass is what is throwing me. able to nurse and eat “normally” and that it would bring her joy. If you look close, you can see they are workin' their black/white bow ties! I mean. FULL MOON!??!?! Was he possibly considering re-eating it? It was lacking convolutions, bumps and the normal length of our dogs' typical dumps, so this had me confused. We had a g-tube (Read below to see why!) They told me the warning I don't even flinch. After I scrubbed my jeans for like 3 straight minutes until the baby wipe wore completely through, we cleaned up Mrs. Pocket's cling-ons. She could have left so many times over the course of her 13.5 years, and every single time, she chose to stay. We need to divide the clothing into TWO bags. I have she would be able to continue to nurse/drink from a bottle/eat off a spoon for We were told they had a party bus as well as a limo in which the attendees could ride around the large parking lot, so we decided to brave the bitterly cold weather & winds to check it out! Copyright © 2011 Gwen Hartley. full potentials no matter what. Claire was shocked to see that her brother, Cal (& his girlfriend, Kerby). Literally that raspy can't get enough oxygen so I sound like a three pack a day smoker. I am not dicking with you when I say that Cash has now officially eaten AT LEAST $156 worth of cloth g-tube pads in the first 22 months of his life. (SO GRATEFUL for Scott, our babysitters & nurses for stepping up & helping share this responsibility with me now -- Don't know what I'd do without you guys!!!) And then I proceeded to dry heave like a mofo. BRUTAL, yo. HEAVEN!!! The Hartley Hooligans is a mommy blog run by Gwen Hartley, who raises three children, two of whom have severe microcephaly along with cerebral palsy, epilepsy, and a myriad of other conditions eventually discovered to be caused by asparagine synthase deficiency, a condition which contributes to brain degradation over the course of these girls' lives. Claire is probably the All of us and our babysitters/nurses know he is obsessed with these things & keep them up high at all times. Picture Window theme. I've only recently found your blog and I love it. 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. He'd be in & out and we'd be off to the party. Playing with it like a damn toy?! I watched her like a hawk during feedings. about doing so. I get close enough to realize that it is brown and stinky like. Honestly, it just makes me feel proactive & at this point, I'm scared shitless to stop doing what we're doing, as SOMETHING is clearly working. All Rights Reserved. urged me to schedule a g-tube placement for her ASAP. avocados) around 9-12 months of age that the reflux finally stopped. 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. 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. was brutal and frustrating and draining for both of us. anyone can fathom, but they are struggles we are coping with and still learning She has required oxygen, constant monitoring, and extra care, and we fully believe this is a result of missing her big sister. ight as I was feeding Lola her bottle, I remembered Her body was overcome by back-to-back viruses as well as other medical complications that she was not able to overcome. Has she been really fussy? I know the culprit, and I am familiar with his fetishes. To all the families out there who just had a child with special needs... YOU GOT THIS. We had many of those episodes with her! long. I'm happy to report that we made it with 1 minute to spare! We have no idea how to chart a course through this tremendous grief & PTSD we are feeling. Nausea in waves. To all the families out there who just had a child with special needs... YOU GOT THIS. Lastly, thank you, Tim Tebow, for ALL you do for individuals like our Claire. 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. I would pour what she vomited back into the bottle to I'm in Turd Town, and Lola's the Mayor. 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! I recognize it immediately upon closer inspection. Many will begin to aspirate at some point. OK, so yesterday was going to be a fun, family day. keep my supply up, and lastly, I would feed her another ounce or two via a They all Pure love. I'm going to be coming back to read more about your ups and downs!Have a great weekend! As I near 2 ft. away from the possible defecation, I begin to smell it. I'm not sure who was having more fun that night -- Claire, Scott or me! I was determined to optimize their Claire was born with a combination of conditions that left many thinking she was one of a kind. never forget all the people who told me right after Claire was born that she healthiest member of our family. No In lieu of flowers (as Lola is allergic to many flowers), memorials can be made to: Night To Shine in c/o the Tim Tebow Foundation and Make a Wish Foundation of Kansas. No one Possibly my favorite pic of Claire with her Daddy EVER. This basically means they are ultra retarded, can't walk, talk, or even move their tiny limbs in any useful way. The music was blaring, the ceiling lights were flashing and changing colors, and SHE. OMFG...this is friggin classic! Yes. The last time I saw Claire this into the lights was in Vegas at New York New York where the little bubble lights lined the ceiling of the entrance. We are ever so grateful to them for allowing us to stay there so we could be close to Lola during her hospital stays. To our relief, it was about 85 degrees inside the limo with the heater on blast, which our Mimi LOVED! survive the birth process. aspiration pneumonia, and this would cause lung damage and scar tissue. She was unable to use food thickeners for her liquids because they contained her food allergens. see how much she lost, and it was usually 3/4+ of the total amount I fed her. I got her into the washroom (a crappy outdoor public park washroom) and no lie she had poop in her hair all the way down to her socks. They all swore we would be in and out of the hospital frequently with It was different from a normal poo in that it had a defined D-shape. and superheroes and badass odds-defiers, every last one of them. Oh, you fancy huh! whose chest his nose is pressed against above. Is she sick? Don’t get me wrong, we have struggles beyond what her reflux the contents of her stomach into the bowl I kept next to the couch WAS. She too fought Lola Grace Hartley . Later that evening, Lola tried to charm me at the birthday party by looking SUPER cute in my niece's new American Girl doll's glasses. I will luckily only bless you with the view from the outside... observe shit stains/fecal matter from hell smeared all over the inside of the bag... ewwww. I'm lucky AF, you guys. HA!) I present you with the evidence... you are damn lucky I didn't take pics with my iPhone "at the scene." One for baby wipes/diaper/trash/possible vomit, and one for the clothes. while it seems invasive and scary, honestly isn’t that big of a deal. Necessary for this Mama's peace of mind!!! and Chapstick without dropping them at the same time! We don't have time for someone to grow a tail, for the love of God!!!!!! Sitting in church when my Princess Jaydyn decided to let out the LOUDEST noise you could ever imagine! We I question, "Cal, did you fart? You are and will always be family to us, and we love you so very much. It was lacking convolutions, bumps and the normal length of our dogs' typical dumps, so this had me confused. resorting to solids more than liquids because she was able to tolerate those so It isn't a secret that Us Hooligans have been MIA lately, and for the first time ever, I am perfectly OK with it. She had CP, was in a wheelchair, and was non verbal (but what she lacked in chattiness she made up for with personality and a wicked sense of humor). Me & Pocket  ~  3.29.17 HEY, GUYS! would likely lose the ability to eat & that it was pretty unrealistic to think that We've got B.M., folks. And there is no grass in his pee/poop area - just concrete & rocks so Scott thinks it could have blown in from yard & stuck to it because our son just mowed. HA! Monday, December 01, 2014. 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. More vomit in mouth. I didn't think I could possibly love this man o' mine anymore than I already did, UNTIL THIS NIGHT. 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. She could not be laid For more video footage of this breathtaking night. I know that it can only be one person then. Was it a "gift" for the girls?! She is quite literally the strongest human being we have ever known. They were supposed to be in the hospital Lmao quietly so I don't wake my hubby. Of course, she was sitting on my lap, with white pants on at the time, and in front of a group of at least 30 people at the time, our chairs all sitting in a circle, I picked her up and my pants were no longer white, but brown!

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