Saturday, February 7, 2009

An Update, An X-Ray and Some Sad News

Noah's recent Cardiology appointment went really well!

We started out the day by getting to the hospital bright and early since he has to have his blood drawn 30 minutes prior to receiving his morning dose of Neoral. He recognizes what's happening now and he gets sad and cries but he is quick to be comforted and move on. He did so well he got a very cute white teddy as a prize.

Then his echo was next. This was the best echo experience since he was a baby in Denver and would just sleep through it. This time he drank some of his bottle, watched some cartoons, and played with my phone. I also taught him how to sign mouse. He thought that was neat. He didn't cry or grab at the wand and wires. I was very relieved because I wanted him to get a good echo so I knew the results would be correct.

Then his appointment was next. Dr Everett said he was doing great! He passed all the tests. His echo looked great. I still need to take more blood monday morning to send to Denver to check his med level but other than that we are good to go till our trip to Denver in June.

Next up was his synagis shot and checkup with Dr. Samson-Fang his pediatrician. I love her. She is so helpful and never makes me feel stupid for my concerns or questions and she is very helpful. He got his two awful and painful shots. Then was checked out due to his booger cold. No ear infections and it seems his breathing treatments are keeping his lungs clear. So he just has to wait it out. This is fine as long as its just boogers. So that is good. While we were there I also asked her to watch him walk. Noah turns his left leg out when he walks. I think this contributes to his lack of balance and I wanted to get her thoughts. As soon as she saw it she gave us a referral to see an ortho specialist and sent us for an X-ray of his hips. Better safe than sorry.

His X-ray turned out fine and he has the specialist app early next month to make sure he doesn't need a brace or something. Not a big worry. A brace or therapy should help if its not something he will just out grow. So more details on that after his appointment.

It was a very busy day but all in all it was good.

But now the bad news.
My good friend Monica (who I met in Denver and lives here in Utah) is back in Denver with Kenzie. Kenzie was sick for a bit and it turns out it was rejection. I don't want to share too much of their story without permission but I had to put a prayer request out there. Kenzie (and her family) are in need of your prayers and good thoughts. Please remember them for me.
While in Denver Monica also found out that our friend
Sam's little sister Brandi passed away this past December. You might remember me telling you about Sam. I first met her shortly after we got to Denver. I actually met her at the same time as Monica and Kenzie. Sam had cardiomyopothy and had just gotten her heart transplant. Her sister and brother also needed heart transplants. Their story has been featured in People magazine. Its rare for three members of the same family to all have this same disease and need a transplant. Well, about two months after we came home Sam and her family came back to Denver so her sister Brandi could get her transplant. Well, last December Brandi got sick with a virus and unfortunately passed away.

This is very sad for me and Monica. We both love this family. Their loss is our loss.

It's also a grim reminder. Even after things calm down and life gets easier you can't let your guard down. Transplant is a miracle and a gift from God. But it is also a road that has many ups, downs, and curves. Every day is a gift. Every single day!!!

1 comment:

  1. Thanks for your blog for Noah. He's a beautiful boy. His story and your experience is very inspiring. I was born with CHD and waiting for a heart. But, I'm an old man at age 35. But, I'm fortunate, Noah and I both share Melanie Everett as our doctor. She is an amazing soul. My thoughts and prayers will continue to be with you guys. All the best! - Paul Cardall (


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