Dallas was born full term and full of surprises. To our shock, surprise, and fear, Dallas Jane was not born healthy like all signs were pointing. In fact, she wasn’t expected to live an hour. She’s an ECMO survivor. She has hypoxic brain injury, trach, G/J Tube, Hashimoto’s Encephalitis, complete thyroidectomy, intractable epilepsy, dysautonomia, hypertension, lymphedema, chronic kidney disease stage 1, global developmental delay, and close to 30 other active and ongoing conditions. She typically spends an average of 6 months total inpatient a year.
Dallas is five years old now and loves her cats Tom Hardy and Jewels. She is the biggest Texas Rangers fan and she asks repeatedly to watch them all day long. She also loves her big sister and big brother! She has big blue eyes, pink hair, and is the combination of sweet and spicy! She hugs EVERYONE, kisses hands and wants to be friends with people of all ages. Sharing love is the only thing she knows. We love her innocence, but with Dallas innocence doesn’t mean weakness. This little girl is as feisty as they come. The size of fight in her far exceeds her physical stature.
Dallas’ dysautonomia affects so many aspects of her life. It’s an autonomic nervous system dysfunction that affects the functions the body controls without our instruction (blood pressure, body temperature, heart rate, sweat, breathing etc.), causing them to go haywire. With Dallas her blood pressure can shoot sky high within seconds of being completely normal. If not treated immediately, she goes into a hypertensive crisis, then flash pulmonary edema, and just gets worse from there. Luckily her amazing specialist has her on a great daily plan with a fantastic action plan if it is needed. We must carry all PRN medicine and supplies and equipment for all of her conditions, so we have a wagon and medical stroller full for every outing. We feel like we are the equivalent of a Sherpa climbing mount Everest.
The isolation and loneliness have been intense and so incredibly hard. Our two older children have made tremendous sacrifices in our “new normal” as well. They remember what life was like before. We have had to really come together and rely on each other to get through this, as only those in our family really understand what this is truly like. A big challenge is being seen and heard. There is a constant push-pull with some medical staff. You’re trying desperately for them to see your child as a whole. How for us, Dallas Jane is a long stack of dominos branched off in multiple directions for every specialty and boy does she have a lot of them. If one thing is off in one specialty, all the dominoes in every other specialty fall because they are all connected. Being the voice for your child gets you a reputation. It’s hard being labeled for advocating for your child, but we will continue to do so now and forever more.
Our iPad OBSESSED little girl has learned so many things. She started homebound kindergarten last October and she has amazed her teachers when she knew all her letters and numbers. They were shocked that a child with such an extensive medical history and life in the hospital would be anywhere near where she was with her education. We are so very proud of her! Getting to watch her succeed and do things they said she’d never do is like being able to witness multiple miracles. We don’t take a second of our time with Dallas Jane for granted. We are the Parker Party of 5 and Dallas Jane is the final piece of the puzzle that makes us whole. She is everything!
We absolutely love getting updates like this one; seeing that our patients are surrounded by love at home with their family and progressing at their own pace is what we work for every day at Apple HMS. Dallas has grown up a lot over the years on service with us! To see Dallas’ story unfold over the last few years, check out her past two features below.