Welcome family and friends of Team Super Desmond!
We are participating in the CHOC Walk in the Park on Sunday, October 30, 2016 at the Disneyland® Resort. We've created our very own Team Super Desmond that you can join if you're interested in walking with us, or you can simply make a donation to this very worthy cause. Here's the story of how CHOC has played such a big role in our lives over the past few months...
A Rocky Start for Baby Des...
As many of you know, our family has personally experienced CHOC Children's amazing care and services over the past few months. On June 30, our son Desmond Joseph (a.k.a. Des or Super Desmond) was born under traumatic circumstances that caused hypoxic ischemic encephalopathy (HIE) which is a deprivation of oxygen and blood flow to the brain. Once stabilized, he was rushed over to the CHOC NICU for treatment and care. During his first few days of life, he underwent a cooling treatment to minimize any brain damage...a treatment only performed at specialized children's hospitals like CHOC.
Desmond spent four weeks in the CHOC NICU. Most of this time was spent trying to learn how to feed orally with CHOC's feeding therapy team who worked with him multiple times a day...suck, swallow, breathe has become our mantra! Although he showed good progress early on, after a couple of weeks it was evident that this hurdle was going to take longer for Des to overcome. So, in came the CHOC Gastrointestinal team who placed a G-tube into his stomach that allowed us to easily feed him and get him home.
A Short-Lived Homecoming...
On July 26, we got to finally take sweet baby Des home from the hospital. It was such an emotional, joy-filled and memorable day. Seeing Des take his first breath of fresh air. Going on his first car ride. And finally being in his nursery at home that had been empty far too long. It was also the best birthday gift his Dad could ever get, since it happened to be Joe's birthday!
Although we wish that would've been Desmond's only hospital stay, he had to go back at the end of August to have heart surgery to repair a coarctation in his aorta. This congenital heart defect was found towards the end of his NICU stay. Although it was heartbreaking to hear this diagnosis, we were thankful that it was detected so early on and was correctable. So, in stepped the Cardiovascular team and Desmond's aorta was succesfully repaired! The only minor downside was a fractured rib that resulted from the surgery. After being in the CVICU for six days, Des was healing up nicely and ready to go back home.
Time for Rehab and Another Unexpected Hospital Stay...
After his heart surgery, Desmond began his outpatient rehab at CHOC for both feeding and physical therapy...going twice a week each. He has a wonderful team of therapists working with him, and has already made great progress in physical therapy when it comes to his midline and range of motion. Feeding has been a little more slow going, but still making some progress. He'll be continuing therapy at CHOC for the months to come.
At the end of September, Des had another health scare when he started having random startle movements. His Neurologist wanted him to come back to the hospital right away for monitoring, as she was concerned it could be seizures given his history. After a couple of days hooked up to an EEG, it was confirmed that these were not seizures...thank goodness! Rather it turned out to be benign sleep myoclonus that Des will outgrow in the coming months, along with some acid reflux.
Time to Give Back...
Needlesss to say that over the past few months, CHOC has become our second home. We've met so many wonderful doctors, nurses, surgeons, therapists and other staff members, and it's clear that their number one goal is to help children like Des. They also provide tremendous support to the parents and families of these children during some very challenging times.
Since CHOC has been invaluable to us by turning baby Des into Super Desmond, we want to give back! Please join us in our efforts to raise needed funds to support the care, services, education and research that CHOC Children’s provides children in our community.
Your support is needed more than ever, as funds from this amazing fundraiser support the care and treatment of Southern California's children. For over 50 years, CHOC Children's has stood as a distinguished non-profit children's hospital, committed to providing the highest quality medical care to all children, no matter what their family's financial capacity. In 1964, CHOC broke ground on the original campus in the city of Orange with one mission: to nurture, advance and protect the health and well-being of children. No child is ever turned away.
Your support will help ensure our kids’ futures will be brighter than ever.
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