Dallas Jane is a 4-year-old girl who lives in The Colony, Texas. She was the Apple Pick of the Month two years ago in 2020, when she had just recently gotten hearing aids and went from barely speaking to speaking in three-word sentences! Two years later, her lovely family has shared her updated story below, including some new pictures of Dallas’ awesome pink hair!
Dallas was born full term and full of surprises. Unbeknownst to us, she was born incredibly sick. Within an hour of her birth, we were told she wouldn’t make it. She was quickly transferred to Medical City Children’s and placed on ECMO life support. Her initial stay in the hospital was just under 6 months. In those 6 months, she coded requiring chest compressions, oscillating ventilator several times, sepsis twice, reoccurring chylothorax, systemic capillary leak syndrome, internal bleeding, chronic respiratory failure, immunodeficiencies, dysphagia, and was given 3 chest tubes, a heart drain, a trach, vent, and g-tube. That was just the beginning. We now know that Dallas has exotropia by hypoxic brain injury, hypoplastic enamel, low muscle tone, keratosis pilaris rubra, hearing loss in both ears, and she’s been given a mediport due to poor vascular access. Dallas has to have eyes on her 24/7 as she is at risk for SUDEP (sudden unexpected death by epilepsy). With only 1 night a week covered, Jeff and I switch out at 1am every night. The lack of sleep for us definitely takes its toll.
Dallas is such bright light to so many. She is the most loving kid you will ever meet. EVERY person she encounters, she asks for hugs. She wants to be everyone’s friend. She waves, blows kisses, and yells “Hi hi hi” to anyone in earshot. She is the happiest girl despite all of her hardships.
Dallas gave us quite the scare on Easter Sunday 2020, with a 90-minute seizure. She went into a vegetative state and had systemic capillary leak syndrome again. (Add in another chest tube.) After a transfer from Children’s Plano to Children’s Dallas, we found that Dallas had Hashimoto’s Encephalitis. She also had both Hashimoto’s thyroiditis and Graves’ Disease at the same time. This means her immune system was mistakenly targeting and attacking her thyroid tissue, while at the same time her thyroid was overproducing hormones. She had a complete thyroidectomy in October 2020. Last year, Dallas spent close to 180 days inpatient and came home with 2 new conditions to add to her bag of tricks; Dysautonomia and Hypertension.
There have been several great steps forward for Dallas since her last Apple Pick in 2020. She started walking independently in early 2021. She still needs help, and her endurance isn’t very long, but girlfriend is doing it on her own!!! Dallas’ epileptologist at Cook Children’s has changed her life for the better. Dallas has refractory epilepsy, and her early seizures were 45 minutes, 90 minutes, and (multiple) 60-minute-long seizures. Thanks to her epileptologist, her epilepsy is more under control now than it ever has been. We are also proud to report that she has been off the ventilator now for almost a year. She only ever has to use it PRN for seizure recovery and illness.
As a parent, the isolation that comes with a child so fragile is incredibly hard to bear. Early on, everyone was super supportive. Then a couple years in, they realize they can’t relate to you anymore. That’s devastating. The time when you need people the most, is often the time when you find yourselves so alone.
We still don’t get out much with Dallas Jane. (Oh my gosh do we want to though!) She still gets sick very easily and her epilepsy and dysautonomia keep us homebound quite a bit. The scariest part of Dallas’ epilepsy is that most of the time, she stops breathing completely. Unfortunately, at one point or another, both of her siblings 14 & 11, have bagged her with up to 15L. I honestly couldn’t even guess how many times Jeff and I have done it, it’s so many. We have all seen her turn colors we never should. That is definitely the worst part. Luckily for us, she has always bounced back (sometimes taking longer than others). We are so grateful. Dallas is by far the toughest child we know. She has spent 2 of her 4 1/2 years inpatient. She always keeps us on our toes, and she is no doubt our HERO.
Dallas Jane is the piece of the puzzle our family was missing. She’s the perfect fit. Her big blue eyes and her long pink hair, sister is in a league of her own for sure! Our life is hard, but we have 3 gorgeous children and are so grateful for that. Dallas Jane was born full term and full of surprises; she definitely lives by the full of surprises part every single day.
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