PLEASE SUPPORT – PAXTON’S PACK

Our Story
Our family was blessed with a beautiful baby boy, Paxton John, on his daddy's birthday almost 4 years ago. Paxton was born slightly premature at 36 weeks.  He initially had difficulty breathing and was on CPAP and transferred to the NICU.  Additionally, we learned in the week after Paxton's birth that he has Down syndrome. For a short time, we were in shock. But we soon realized that Paxton is a blessing we have received. God has made him a very special baby and has chosen us to be his parents. We feel humbled, honored, and blessed to have him as part of our family.

Paxton has been through a lot in his life so far. He initially significantly struggled with feeding, and had surgery with placement of a feeding tube. As many of you know, we were recently able to get rid of his feeding tube on 3/20/2021! Hooray! It has been a long, exhausting, and difficult journey to eating by mouth. He has actually been fully eating by mouth since mid-January 2020, but to be cautious, he kept his tube as “decoration” (as we like to say) for a year just in case we needed to rely on it for surgery or illness. Thankfully, he did not need it during that timeframe and is now tube free!

He also was found to have a heart defect at birth, a Ventricular Septal Defect (VSD), as is common in babies with Down Syndrome.   This is a hole between the two lower chambers of the heart. It is actually one of the most common congenital (born with) heart defects across the board (with or without Down syndrome). His body amazingly compensated well, and he lived with his VSD for over 3 years before he had it surgically closed via open heart surgery in August 2020. He is a heart warrior! 

Paxton works so hard at everything. With Down syndrome comes hypotonia (poor muscle tone). This is not something that can be “fixed,” but it is something we work on constantly. It causes difficulty with walking/climbing/running/balance. It causes difficulty with eating and speech (these use mouth/tongue muscles). This is why it has taken him longer to do things like walk, run, jump, eat, and talk! Paxton has been going to therapy since he was 3 months old. He has Physical Therapy (helps with balance, movement, running, jumping, climbing), Occupational Therapy (helps with self-feeding skills like using spoon/fork/cup, helps with hand strength used for handwriting and opening things like bottles/ziplock bags, helps with buttons/zippers and self-dressing), and Speech Therapy (helps with sounds/words/sentence structure and overall understanding of language). He works so very hard to achieve things that others take for granted. 

Without a doubt, Paxton is a true rockstar! We will continue to push him and support him throughout his life. Our ultimate goal is the same as any other parent for any other kid: help him to be the best he can be so that he will be able to pursue his dreams.  

I Step Up for Down Syndrome because I believe children and adults with Down syndrome and their families should be able to receive much needed support and services.

With your support, the Down Syndrome Association of Central Florida is there every step of the way with our families.
You enable us to offer hope, encouragement and acceptance through advocacy, education and awareness as we guide individuals with Down syndrome through life’s transitions.
Together through your kindness, we create a Central Florida community composed of and dedicated to individuals with Down syndrome – and those who love them – so that each may realize their potential.
 

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