Paxton’s Super 7th Birthday

We welcome Paxton’s mom as a guest blogger today to share her story.

Paxton was born on February 2, 2010 with two very rare conditions known as Ebstein’s Anomaly, a congenital heart defect, and Pierre Robin Sequence, a congenital craniofacial malformation. Due to the combination of these severe medical issues, the doctors were highly suspicious of an underlying genetic syndrome. Unfortunately, it has yet to be identified due to unremarkable test results thus far.

Since birth, Paxton has struggled to achieve many milestones. He just turned seven, but he functions at a six month old level. He is nonverbal and non-ambulatory and requires full assistance for all activities of daily living. He does not eat much by mouth so his only true source of nutrition at this point is through his G-tube.

In addition, Paxton suffered significant brain trauma secondary to hypoxia at birth, as well as from a couple of extensive surgical procedures which required prolonged time under anesthesia and heart-lung bypass. As a result, Paxton has cerebral palsy and a profound intellectual disability. The primary effect of his cerebral palsy is severe developmental delays, along with significant hypotonia, and an extreme impairment of his gross and fine motor functions, balance, control, coordination, reflexes, and posture.

Unfortunately, that is not the end of Paxton’s misfortune. When he was just over two years of age, he started having life threatening complex partial seizures. In most instances when he has an episode, he goes into respiratory arrest and requires resuscitation. This is the reason that Paxton requires a skilled nurse or myself to watch him. This has been challenging not being able to utilize friends or family members to help provide respite for my family.

Luckily, the seizures have been better managed with the current medications. He is only having about two to three seizures per month at this point. Despite all of the challenges Paxton faces on a daily basis, he still manages to be the most easy-going, hard working, happy-go-lucky, giggly little boy around. Even though he is nonverbal, he brings more joy to those around him than anyone I’ve ever known.

The family mentioned, “We had a really positive experience with the baker from Stacked.”

Thank you Sugar Angel Erin Schwartz of Stacked for donating your time and efforts for Paxton’s special day! We look forward to seeing more smiles from you in the future!