Sunday, May 31, 2015



Lyla's History

        Lyla was born at 31 weeks gestation, with Gastroschisis, a hole in her abdomen wall causing her intestines to be on the outside of her body.  She endured surgery immediately after birth and everything was supposed to be okay. "Out of all the birth defects this is the one you would want" said doctors. But Lyla wasn't okay, 80% of her small intestine and 80% of her colon had to be removed, leaving Lyla with Short Bowel Syndrome and that is a list full of life long problems. The first 3 1/2 years of Lyla's life were a very tough on the whole family. Lyla has been under anesthesia a total of 13 times, 7 of which were major intestinal surgeries. Lyla's body cannot absorb nutrition like you or I. So she's had to use other resources to keep her alive. She has had a feeding tube straight through the abdomen and into her stomach ever since 2 months of age. She lived a year and a half with a ileostomy bag to collect her waste. And the first 3 1/2 years with a central line, a permanent IV in her main heart artery which infused nutrition straight into the bloodstream. Lyla was mostly in the hospital as a baby and toddler, with complication after complication. They worked as best they could to get the remaining of Lyla's GI track to work well enough to be able to remove the IV nutrition that was keeping Lyla alive, but at the same time it was destroying her liver, and causing multiple life threatening blood infections.  Lyla has always in her life had intestinal bleeding. It was never visual blood or very bad until just a few months before Lyla turned 3. She started having heavy bleeding, and needed blood transfusion frequently. She had a gi hemorrhage for a total of 8 months. We sought a second opinion, and this is when things started getting better. They found 12-15 bleeding ulcers in Lyla's small bowel and started a treatment soon after. They weaned unneeded medication, made some changes to Lyla's diet, got her gaining weight and started to wean her IV nutrition. After not even half a year with the new doctor and Lyla was doing much better, but they couldn't wean the IV nutrition fast enough. In September 2014 Lyla got yet another a blood infection, but hopefully her last. The infection forced the doctors to remove the IV line from her chest, and since Lyla was doing so well prior to the infection instead of undergoing surgery for a new one they decided to first try life without it. And that was Lyla's last night in the hospital!


  "I wish to go to Disney World"

It was November 2014 when Lyla had her wish granted through Make A Wish North Texas.  First was the letter in the mail saying she qualified.  Next was the wish grant, accompanied by her mom, dad, and a couple of MAW volunteers; Lyla got to enter a magical wish room where she first pick out a couple of toys, then hung out with her wish grantors so they could get to know Lyla.  They found out she likes all things Disney, especially all Pixar films, Goofy, Donald, Jake and Peter Pan.  Lyla talked about who she wanted to meet, and what she wanted to do. Disney World in Orlando Florida seemed like the perfect wish!  The date was set for Nov. 28th - Dec. 4th; a seven day vacation of Lyla's dreams. It was all surreal for her parents whose only job was to pack. Make A Wish took care of everything. Parking, airfare, spending money, food, rent car, & lodge. The family soon learned that they would be staying at Give Kids The World; this is an exclusive wish kid resort with everything you can think of. Each family gets their own villa, meals 3 times a day, free ice cream, pools, putt putt, arcade, kiddy rides, parties every night, daily gifts, characters, and much more. When Lyla and her family arrived they were given tickets to Disney World, Universal Studios, and Sea World. Lyla's favorite parts of the trip were meeting all the characters, especially Jake and The Neverland Pirate and Peter Pan. She also enjoyed riding all the roller coasters she could. She had front of the line pass for meet & greets, as well as rides and shows. She had 7 busy, fun days, and I think most of them started and ended with ice cream!


  Lyla Now

Lyla is doing fantastic! She just turned 4 in March and celebrated with a Pixar birthday party. She just finished a season of tee ball and is in preschool now. Health wise Lyla is doing phenomenal, just dealing with some vitamin deficiencies and managing to keep her blood count normal. She only has to see the doctor every 2 months now and each visit they wean even more off of her tube feeds. She is eating very well by mouth now, and seems to be absorbing nutrition well. Nothing has ever truly held Lyla back, whatever complications occur, she defeats them. She is a superhero!  Lyla's trip to Orlando Florida was only the beginning to her Make A Wish experience.  “Once a wish kid, always a wish kid”. Lyla has been able attend several other local events, like the Stock Show Rodeo through Make A Wish. Before Lyla's family left Give Kids The World they also received an Around The World Amusement Park Passport.  This is a free one time admission to all sorts of amusement parks around the world, like Six Flags & Shlitterbahn, and it’s good for one year. Lyla's family plans to use this pass multiple places this summer and fall. Lyla's first few years of life may have been full of medical procedures, and nights in the hospital, but the years to come will be filled with great surprises, thanks to Make A Wish.

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