Family & Friends,
Allow us to introduce you to Ezekiel Adam Ellis who was born to Adam & Ashley Ellis on 4/25/2021.
Ezekiel’s story:
On April 25, 2021 Ezekiel was born.
The NICU doctors and nurses informed us on Ezekiel's medical information. He was born with Pierre Robin Sequence, clubbed feet and contracted hands. Pierre Robin Sequence is an abnormality where the chin is recessed (micronathia) and the roof of your mouth is opened (cleft palate) which connects to the nasal airway. Clubbed feet and contracted hands are an abnormality where the ligaments are turned in.
In addition to this he also has been diagnosed with Pleural effusion, Neonatal anemia, Congenital ptosis, severe bilateral (not opening his eyes at birth), Critical airway, GE reflux, Disturbance in sleep behavior, Congenital abnormality and Stridor.
Upcoming Surgeries include cleft palate surgery, depending how he grows possibly another mandible (jaw) distraction surgery, lower airway surgery, another tentomy (tendon) surgery for clubbed feet and a third eye surgery if his slings don't work again or later in life when a longer sling needs to be placed.
Latest Surgery Update from Adam & Ashley Ellis:
January 19, 2022
Our son had a 6- hour surgery.
Plastics: mandible distractors-remove internal & external hardware
—went great! Need a few more weeks till he can start putting anything in his mouth (soft foods, blankets, teething rings, bottle, etc). His right side of his jaw is completely developed; however, the left side needs a few more weeks till the bone can be fully developed. He is COMPLETELY METAL FREE!! Will be following up with his plastic surgeon later on today.
ENT: Laryngoscopy/ bronchoscopy (lower airway evaluation)
—airway is still tight, hoping with growth it will widen up on its own. The doctor did see scar tissue on his voice box from previous intubations. His doctor was happy to see that he looks and sounds a lot better than the last time he saw him in clinic. He wants to continue to keep a close eye on him at clinics.
Ortho: Tenotomy & cast application for severe clubbed foot
—(tenotomy: cut the tendentious that attaches to the calf and heel. Ezekiel has severe clubbed feet where his heel is attached to the back of his calf. This procedure cuts the tendent which allows his heel to drop. She was able to get a 60 degree on his foot positioning. We will follow up in 3 weeks to be reevaluated to see if he will need additional casting or possibly start bracing.
Ophthalmologist: eye lid lyft for mytosis (droppy eye lids)
—he did great! Going to be swelling for at least a week. His eyes are lifted and won’t be able to close them for about a week so we will need to apply lubricant to his eyes and an antibiotic for his incisions above his eyebrow. We had to use another foreign material for this procedure because the amount of skin graft needed from the TI band is as long as him but his TI Band is WAY TOO SMALL. We are praying hard this material doesn’t get rejected/infected. To help prevent infection his doctor soaked the sling material in antibiotics.
After surgery, Ezekiel was taken to the PICU still intubated. We are praying today he can safely be extubated today! Once he’s extubated he will need to be monitored for at least a day to keep an eye on his stability. Please keep our little baby boy in your positive thoughts and prayers. After this hospital stay it will be a step in the right direction for every aspect of his developmental process.
We greatly appreciate all the love and support we have received along his medical journey! It’s been a rollercoaster of experiences, but God has given us the strength to fight through this!
With full time care needed for Ezekiel Ashley is no longer able to work so we have created this fundraising event to raise monies to assist Adam & Ashley through this difficult time, our goal is Thirty thousand dollars.
Equipment needed for Ezekiel daily is a Kangaroo pump for feeding, an Apnea monitor, a Pulse Aux and a Suction Machine.
Ezekiel's frequent doctor visits include a PCP, Neurologist, Sleep study, Plastic, Orthopedic, Ophthalmologist, Neonatal development, Feeding therapy, Speech therapy, Occupational therapy, Physical therapy, Gastronomy, Dietitian, Genetic, ENT.
Ashley must also have someone ride with her at all times to monitor Ezekiel when leaving home just in case of an emergency, which makes this even more difficult.
Allow us to thank you in advance, we also promise to keep all our family and friends updated on Ezekiel’s progress and Thank You from the bottom of our hearts.
-The Ellis Family & Friends