Wednesday, October 23, 2013

What's a day in the life of a CHD kid and family look like?

As you all know, I'm racing Ironman Chattanooga 2014...

It's housed at and includes funds for Ride to Give and Mended Little Hearts.  Why did I pick these charities?  Well, for one, they both work for kids in need.  Ride to Give is out getting donations a little bit at a time for sick or handicapped children than need travel expeneses related to illnesses paid for, full time parental care, a fence or a van to transport a child and their medical neccessities.

Mended Little Hearts touches me personally as a way to assist parents of children with congenital heart defects.  Our son was born with pulmonary hypertension, and we were blessed and/or lucky that he was successfully treated without the need for surgery for that particular issue.  He has had several complications that came along with the CHD issues and endured many surgeries, dr appointments and therapy sessions as a result.  The one idea that I cling to was that he was less than a year old for a lot of the surgeries, and while very dangerous for a newborn, hopefully he has no memory of all the surgeries and hospital stays.  They were anguishing enough for us, I can only imagine how he would have held up if he was cognitively developed at that time.

I'd thought I'd share a day in our life that included some therapy and how we have dealt with developmental issues he has faced.

Monday was an appointment at a local children's hospital clinic where they have assessed him and his developmental shortcomings.  We are now at the point where they can work with us and observe him and show us methods to help him learn to function better.

Don't be confused, he walks, he talks (sort of) and he eats.  Many kids with his initial CHD condition do not fare so well.  He is highly developed compared to others that have not made it through the woods, but he's behind in a lot of categories when it comes to kids his age.  Without intervention, he would not be ready for kindergarten when he is age eligiable, and by that time, the precious years of brain development would have passed us by.  From multiple stints under anesthesia, staying in hospitals and the need for extra love and coddling, our son has lost precious moments to develop like a normal child would.

But, we are trying to stay on top of it, and with my flexible work schedule, I was able to get him in for this appointment.

It was an hour, and we worked on food aversions developed from choking while eating at a younger age.  We worked on following verbal instructions.  We worked on color recognition.  We worked on redirecting when he gets frustrated and cannot verbalize what he wants or when we cannot understand him.

It's not glitz and glamor, but he has blossomed so much with being in preschool and the developmental program there and at our local kid's hospital.  It's been a blessing to be with him and help him like I have been able to.  Before last March, when I was in a full-time salaried office job, I could not make it to nearly the same appointments I can now.  It's been a great bonding experience for us.  It's bridged the gap when I was working and my wife was with him every moment when he was in need as a newborn.  Sure, I took long lunches and went after work, but it's just not the same.  When your son wants mom when he's hurting, you can't deny him.  It's nice to have that feeling of helping your son and building that father-son bond.

It's also funny and endearing when he knows it and is already abusing the relationship.  But, don't be fooled, he's still a mama's boy.  =)

How can you help?

You can donate to the Fundrazr page, or you can utilize partner deals specifically set up for the Tri4AHandUp charities.  The list is HERE.

A special right now is for Xterra Wetsuits.

XTERRA Wetsuits is finally discounting the fastest, most buoyant wetsuit in existence, the Vendetta Sleeveless. Regularly $500, the Vendetta Sleeveless price has been cut in half and will be available for the all-time low price of $249 for a very limited time.

In addition, they will be selling the Velocity-M Speedsuit at a discounted price of $129 (regularly $350). If you haven't already heard, the Velocity-M Speedsuit had the fastest swim time at the Kona World Championships in both 2012 and 2013.

Use code "C-SETTHEPACE" for the discount at Xterra Wetsuits. 7 percent goes to Tri4aHandUp charities!

Sale Ends October 29th, 2013!

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