One happy kid! (And one very happy dad!)

Dear Noah,

It’s hard to believe that this is our 3rd father’s day together. (You were in your mommy’s womb on the first one.) You’re lying in your crib sleeping after a long and fun day. I just wanted to take a minute to let you know that you are such an incredible father’s day gift.

I love just hanging out with you. I love watching the way your contagious smile causes everyone in your path to do the same. I love listening to your giggles. I love watching you dance in the back seat of the car as I turn the music up.

I love watching you explore. I love the way you reach your arms out to me as I approach you. I love the way your face lights every time your eyes catch a glimpse of me. I love the way you throw your toys over your play gate so I’ll pick them up and throw them back over.

I love the way you hold my finger as I read to you. I love the way you grab your mom and I’s hands when we pray together. I love the way you push your little toy car back and forth with me.

I love to listen to all of those fun laughs you make when you crawl up the stairs…with me very close behind you. I love watching your walk around on your dino walker; laughing the entire time. I love the way you put your arm around me when I’m carrying you. That little one arm hug is so cute, I love it.

I love your hugs, your kisses, your little nose, your little feet, your stunning blue eyes, and your little teeth. I love every single thing about you. Continue Reading…

While it’s true that every Thanksgiving brings with it much to be thankful for, this year’s Thanksgiving (our son’s first) was perhaps our families most thankful Thanksgiving yet. (Whew….try trying that 7 times real fast!)

This year our family has something to be thankful for that less than a year ago we would have never imagined it even being a part of our life, much less saying we were thankful for it. But we are.

This thanksgiving we’re thankful to have a son with Down syndrome.

Our son almost came with an extra, extra bonus….

A few days after our son surprised us by being born with Down syndrome we were called to our pediatrician’s office to discuss something that came back on his newborn screen. This something ended up being the possibility that our son could have Glutaric Acidemia, type 1 (GA-1), in addition to Down syndrome.

Noah's first Thanksgiving day parade!

Now if you’ve never heard of GA-1, you’re not alone. Neither had I until this doctor visit, but I’ll give you the long and short of it: It could kill you. We were told that it was likely a false positive, not to worry (yah, right.), and to go home and enjoy Christmas with our new baby (after taking him to the lab to have some blood drawn.)

I’ll never forget walking in the front door of our apartment after that doctor visit. I was still trying to wrap my mind around the fact that our son was unexpectedly born with Down syndrome just a few days earlier. I was still trying to sort through what that meant for him and for our family. I was still hurt, confused, heavy hearted, and worried about our little baby boy. I mean come on, he was only a few days old, and it takes time for a new parent to sort through all of the emotions of a Down syndrome diagnosis.

Now not only does my son have Down syndrome, but he may also have a very rare metabolic disorder that could kill him. Wow! Talk about kicking a guy when he’s down. I”m getting teary eyed just reflecting on that day as I draft this post.

You can read more about what I call the scariest week of my life if you’d like, but after about a month and a half of testing, which included taking our few weeks old son to a geneticist to have his DNS sequenced, he ended up not having Glutaric Acidemia. Thank God!

Continue Reading…

While it’s true that every Thanksgiving brings with it much to be thankful for, this year’s Thanksgiving (our son’s first) was perhaps our families most thankful Thanksgiving yet. (Whew….try trying that 7 times real fast!)

This year our family has something to be thankful for that less than a year ago we would have never imagined it even being a part of our life, much less saying we were thankful for it.  But we are.

This thanksgiving we’re thankful to have a son with Down syndrome.

Our son almost came with an extra, extra bonus….

A few days after our son surprised us by being born with Down syndrome we were called to our pediatrician’s office to discuss something that came back on his newborn screen. This something ended up being the possibility that our son could have Glutaric Acidemia, type 1 (GA-1), in addition to Down syndrome.

Noah's first Thanksgiving day parade!

Now if you’ve never heard of GA-1, you’re not alone. Neither had I until this doctor visit, but I’ll give you the long and short of it: It could kill you. We were told that it was likely a false positive, not to worry (yah, right.), and to go home and enjoy Christmas with our new baby (after taking him to the lab to have some blood drawn.)

I’ll never forget walking in the front door of our apartment after that doctor visit. I was still trying to wrap my mind around the fact that our son was unexpectedly born with Down syndrome just a few days earlier. I was still trying to sort through what that meant for him and for our family. I was still hurt, confused, heavy hearted, and worried about our little baby boy. I mean come on, he was only a few days old, and it takes time for a new parent to sort through all of the emotions of a Down syndrome diagnosis.

Now not only does my son have Down syndrome, but he may also have a very rare metabolic disorder that could kill him. Wow! Talk about kicking a guy when he’s down. I”m getting teary eyed just reflecting on that day as I draft this post.

You can read more about what I call the scariest week of my life if you’d like, but after about a month and a half of testing, which included taking our few weeks old son to a geneticist to have his DNS sequenced, he ended up not having Glutaric Acidemia. Thank God!  Continue Reading…

After another jam packed day of treadmill training, seeing a therapy dog, playing with toys, and drinking lots of ice cold milk (on his own!) you’d think our little man would be ready for a good night’s sleep. Not by a long shot.

As you can see in today’s video, our little boy is sort of like the Energizer Bunny. He keeps going, and going, and going….and going! An hour or so after lying him down I went in to check on him, expecting him to be sleeping like a baby, but boy was I wrong.

Instead of sleeping, he decided bedtime would be a great time to work on his core muscles. So there he was trying to pull himself up on his crib. It’s so cute watching him try so hard. This little boy is so tough, and I couldn’t be more proud to be his daddy. I love this kid!

But it’s all good, I don’t mind at all. I love how he is so into exploring his environment and solving problems on his own.

By the way, here’s a quick snapshot of his day, just so you can see why I have nicknamed him the Energizer Bunny!

1. All smiles and ready for the day.

He's all smiles, and ready for the day!

2. Working hard on the treadmill.

This little boy seriously rocks the treadmill. It’s so much fun to see how far he has come since he frist started. Continue Reading…