24 hours after his premature birth, our youngest son Parker, was Life Flighted to Primary Children’s Medical Center in Salt Lake City, Utah. Several weeks in the NICU, an emergency surgery to create an ostomy, and long nights of prayer, we finally brought our Brave Hero home. Along with Parker came all kinds of excitement:
- Chronic Lung Disease
- Imperfoate Anus
- Ostomy Bags
- Tethered Spinal Cord
- Severe Pulmonary Hypertension
- So many meds!
- Oxygen Bottles
Parker’s Down syndrome is the very least of our worries. You can live a long and productive life with an extra chromosome! Your odds of that are greatly reduced when your first pulmonary hypertension values come in at a whopping 117! Especially since normal values are under 25. High pulmonary pressures cause the heart to work so hard that its owners life span is significantly shortened.
Share our journey and see the realities that come with trying to raise a special needs kid in a typical world:
- Insurance companies that fall short of meeting our son’s medical needs.
- The nightmare battling for Medicaid coverage in the state of Utah has become. A state government that professes to put children first while balancing its budget on the backs of its most helpless citizens.
- Homeschooling a child with special needs.
- Building bridges between families of typical children and families of children with special needs.
- And proving that a child with special needs is first and most a child. Just like yours.
Our story is one of great faith, the power of prayer and the love of family.
Some may choose to see sadness and despair. We choose to see a little boy like any other. One from which shines so much joy and determination.
We are amazingly blessed by this Littlest Hero of ours!
Let us share the beauty and potential that lies within ‘different.’
Where Parker is Today
Parker no longer sports an ostomy bag. He had a successful PSARP on November 7, 2008!
While many parents are overwhelmed at the thought of their child being trached and needing the support of a vent while sleeping, for Parker these two items have been life saving devices.
After a very disappointing right heart cath in September of ’09, we discovered Parker had been experiencing severe reflux that had totally ruined his ability to protect his airway. ANYTHING and everything that went into Parker’s mouth dumped directly into his lungs. He’d even been aspirating on his own saliva and mucus, which in turn had been causing issues with his already very sick lungs.
December of 2010 found us taking the leap of faith that included tenting Parker’s epiglottis in order to provide him with a solution to his aspiration issues.
This brought Parker’s total surgeries up to 17.
August 2011 brought us the grand news that Parker’s Pulmonary Hypertension levels were lower.
Parker’s medication schedule includes:
Parker is on oxygen 24/7 and must keep his oxygen levels at or above 95% as a treatment for his severe Pulmonary Hypertension.
Parker receives therapy services via Alpine School District. 30 minutes a week of speech and PT. 30 minutes a MONTH for OT.
But because he only receives 60 minutes a week with a teacher, I am pretty much in charge of all things educational. I’ve become a special needs home school teacher.
In January of 2010 we began a grand experiment with Parker’s nutrition. Instead of being fed formula from a can for all of his meals, I began creating a blenderized diet for Parker. All of Parker’s day time feeds are from this special blenderized diet. It’s one of the best things I’ve ever done for our Brave Hero.
As you can imagine things around here are BUSY! I actually set a timer to go off every hour during the day in order to make sure Parker receives all of his feedings and medications.
Just like our hearts.