Noah's Dad

When our son Noah was born we were surprised to learn that he had Trisomy 21; better known as Down syndrome.

We experienced many emotions, and had a lot of fear. To be honest I didn’t know a lot about Down syndrome, and so I spent a lot of time searching the web for some down syndrome resources.  In fact, I even wondered if it was my fault the our child was born down syndrome. (By the way, it is no one’s “fault.”)

After coming home from the hospital I begin to spent a lot of time learning the facts about down syndrome., and the truth is it isn’t as scary as I thought. In fact there was never been a better time for a child to be born with down syndrome.

In fact one of the first things I learned is that the correct way to refer to what my child was born with is “Down syndrome,” not downs syndrome, down’s syndrome, down syndrome, down syndroms, downe syndrome, or downs.”

Since I had referred to it as “down’s syndrome” my entire life; I knew I had a lot to learn.

One of the reasons we wanted to create this site was to provide a resource for new and expecting parents to come and see that things will be ok.  That families raising a child born with Down syndrome are much more like other families than they may think.  We post a daily video, and my wife (a pediatrician) writes great medically accurate information like our New Parent Guide to Down Syndrome.  I’d highly suggest checking it out!

Early Intervention For Children With Down Syndrome Has Come A Long Way!

I think Noah must have been sore from his hard-core occupational therapy workout yesterday because he wasn’t feeling it today!  Actually I’ll be transparent, the problem wasn’t soreness it was hungriness!  We have been trying to develop a schedule for Noah, and it hasn’t been easy to keep! You may think creating a schedule for a six-month old baby would be easy, but it isn’t.

For starters, Noah can’t eat forty five minutes or so before any of his therapy appointments, otherwise it’s spit-up city! (Imagine yourself scarfing down an extra large vanilla milkshake, then going to the gym and doing a power session – YUCK!)

To further complicate things, Noah’s schedule differs from day to day, and week to week since he goes to occupational therapy every other week, and physical therapy two times every week!

Add to that work, appointments, studying, and all the other demands of life and you’ll quickly see that developing a steady schedule for Noah is sort of like playing one long (but very cute) logic game!  All that to say, some days we do a great job, while other days (like today) we do a not so great job.

It’s hard work being a parent, but such is life. Can I get an amen from any other parents out there! 🙂

All of Noah’s therapists tell us he is progressing extremely well. (I’m sure they say this to all of the parents, but it’s ok!)

Because of that they have been giving him new excerises.

In the video above Noah was using a soft, wedge.

This is the first time he has used the wedge, and he did a great job with it!

In fact, they said as soon as he starts to sit up on his own they are going to use a new technique involving a bench and a treadmill. This should make for a great video!

However, I think his very favoriate is the elephant they let him ride!

Tomorrow is Wednesday and we wake up and do it all over again.

But it’s ok, as I’ve said a million times; it’s seriously a joy raising Noah. Multiple appointments and all!

I’d gladly take him to a million appointments if need be.

I love being Noah’s Dad!

 

What ways have you found to help you manage the multiple appointments, meetings, feedings, etc?  We’d love to hear your ideas! 🙂