Meet Asher! He is our MILLION DOLLAR BABY! That is a million dollars worth of medical bills, but Asher is priceless to us! He had his 1st Open Heart Surgery when he was only 2 months old and now, at almost 6 months of age, we are headed back out to California (from Virginia) to have his Full Heart Repair! If you could spare some change.
Ever since Asher’s Birth, life has taken us on one heck of a roller coaster ride. There are days that I find myself bargaining with God, mad, sad, and finally coming back to accepting that God entrusted us with Asher for a reason. He knew we would love, guide, protect, and take care of him the best possible way we know how. We love this sweet boy more than words can say! Even though God made him extra special genetically and on the inside, he is perfect to us! He is strong and has been such a fighter since the day he was born! Like Hugh and I, he keeps pushing forward not matter what obstacles are in front of him.
As you all know, Asher was born on September 12th with a Congenital Heart Defect that will require Open Heart Surgery. A month later, genetic testing resulted and Asher was diagnosed with DiGeorges Syndrome. We went from seeing just the Pediatric Cardiologist to adding a Geneticist, Pulmonologist, Immunologist, Plastic Surgeon, and an Endocrinologist. I am sure, as we embark on our journey, more specialist will be added to his team.
Our cardiologist has confirmed Asher will be having his first Cardiac Cath in mid-December. This will give them the final missing pieces of the puzzle. Stanford Hospital has accepted Asher as a patient and we will travel to California where we will be for up to 4 months for surgery and recovery. Our Cardiologist will follow Asher until surgery and will resume care once we return. Both doctors at UVA and Stanford will work together in providing his care.
During our visit with the Geneticist, we learned of Asher’s genetic diagnosis and all the health problems he is at risk of developing. She also found that he had a very small cleft palate; a very small hole in the roof of his mouth. This affects his feedings causing milk to come out of his mouth and nose. He loses valuable calories this way. Cardiac babies use more calories than a normal baby so this causes a struggle in getting Asher to gain weight.
His Endocrinologist reviewed bloodwork and diagnosed Asher with a Parathyroid Disorder causing low Calcium levels. We now have to give Asher Calcium 4x’s a day and Vitamin D 3x’s a day. His Calcium levels are back within normal limits and he is no longer at risk for seizures. Further bloodwork ruled out a Thyroid Disorder at the time
The Pulmonologist reviewed Ashers testing/diagnostic studies that were performed during his stay in the NICU and told us Ashers lungs are fine and properly working. His low oxygen levels are solely due to his Heart Defect! Asher does have pausing in his breathing so we will be doing a sleep study at UVA in November to make sure he does not have sleep Apnea requiring a CPAP machine.
In 2 days, we will go see his Immunologist due to him being at risk for having an impaired Immune System due to DiGeorges. I will update you all in this area once we get through that appointment.
I have to say that every doctor, nurse and case worker we have come in contact with at UVA has been absolutely amazing! You can tell they truly care about these children they take care of and treat us like we are their only patient. If a specialist is needed to be added onto Ashers Medical Team, it’s immediately done. His care has been so organized.
We are traveling to doctors appointments sometimes twice a week. To help us cut back in the amount of traveling, the Cardiologist sent us home with a Pulse Ox, Scale and iPad for us to enter his daily weight and oxygen levels in an App for his doctor to review.
I will continue to keep you all updated as we learn new things regarding Ashers care. Thank you all so much for loving our sweet Asher! God has surrounded Asher with so many Angels here on Earth that support and love him as much as we do! Again, we can’t walk this journey without you all! Thank you all again!
God is the Ultimate Healer. We are strong in our Faith. We just need to quietly listen and let him pave the way! God has big plans for our little guy and we cant wait to see him grow!
Love, Hugh and Cheryl
Ways to donate:
Paypal Email :[email protected]
Go into any Wells Fargo Bank and let the teller know you would like to make a deposit into the Asher Pleasants Donation Fund
Send a check to our home at:
52 Baird Lane
Dillwyn, VA 23936