Thursday, January 28, 2010

There Really Are Just No Words

I had to get up super super early this morning to take Lilly to her Cardiology appointment. We both had ECHOs today to make sure we don't have any form of CHD. I am very pleased to say that we were both cleared. Healthy hearts for us!

But that's not what I wanted to share...

Afterwards, I was so tired. So me and the kids decided to turn on the TV and lounge on the couch for a little nap together. Noah and I slept while Lilly, and her never ending supply of energy, did her tinker stuff all over the livingroom.

When I woke up, Noah was cuddled next to me under the blanket. He loves to lay under blankets with me. If I ever sit on the couch he will go grab a blanket and come sit next to me. He then woke up and went on got a small ziplock baggie of Kix.

He laid there all snuggly, opening his little baggie, and snacking on Kix while we watch Curious George and giving me kisses over and over and watching him about made my heart explode.

He's 2 1/2 and more monster and monkey than little boy but he is the sweetest thing in the entire world.

To remember seeing him a sick teeny little baby and then try to match that up with the big boy I see now almost doesn't make sense in my mind. I am filled with this overwhelming Mommy Pride when people ask me how he is doing, after everything he has been through, and I can tell them he is doing fabulously.

But you know, I still get very emotional when I think or talk about the experiences we had when Noah was born. That wound is still tender and I am still very sensitive about it. It hurts me to think about this precious boy ever being sick and in pain. I try not to think about it too much. Life moves on and we have been given this huge gift of life and time together and I refuse to squander it in the what-ifs and has-beens.

Each new day that we have makes my thoughts about Noah's donor family even more tender. From the moment I received the call that Noah was getting a new heart, I have grieved for them. I think about their loss every day. I think I grieve for them more now than I did in the beginning. Back then, my joy was so profound over the life given to my son. Now that I have had time with him, gotten to know him, and experience the joy he has brought into my life, I realize even more profoundly exactly what they have lost. I continue to be amazed at the courage it must have taken to make the decision to donate right in the midst of their sorrow.

Really, there are just no words. No words to adequately describe my gratitude. No words to adequately describe my sorrow. It's been an experience like nothing I could have imagined. And yet, I wouldn't trade what I have been given for anything.


Thursday, January 7, 2010

School and an ECHO

Noah started his first day of preschool today.

He goes once a week for an 1 1/2 hours. It's part of his therapy and is a class designed for 2 1/2 yr olds. I'm so excited for him to go. Right now he doesn't get any interaction with other kids his age. This will help him make friends and strengthen his social interactions. It also gives him a good opportunity to be away from Mom in a structured environment. I stayed for the class today and he had so much fun. He is one of three kids with three teachers. Just enough to make friends and still get special attention for his needs.

He also recently had his first Cardiology appointment since his Cath over the summer. It went really well.

At first it was a bit sad. See, before we even got to the hospital he realized where we were going and got upset and kept telling me no and shaking his head. But since we don't do labs there (we do them at home and send them to Denver), I promised him there would be no owies. He wasn't convinced at first (walking past the lab upset him a bit) but he listened and tried really hard to be brave.

He was so good during his ECHO. Stayed very still and quiet. That helps eases my worries. Then I know they get good pictures and a more accurate look than if he's wigging out. Then we went into the appointment and played with bouncy balls while we waited for the Doctor.

Everything was great. His ECHO looked good and even though he was sick his lungs sounded good. I even found out that even though he spent a great deal of time in the 3rd percentile for weight and height, he has now made it to the 75th percentile for height and 60% percentile for weight. Music to a mothers ears!

That said, the Dr said it was time to cut the carnation bottles (not necessarily the carnation's part but definitely the bottle part). Problem is, that's his crutch. It's become a comfort thing. I always give in because he needed the nutrition. But Doc says he won't starve now and he should come off. I have since resisted giving him one for about 5 minutes of tantrum begging before giving up. I will try... just not yet.

We had a wonderful holiday and Noah's progress and health made it even more beautiful. We have so much to be thankful for.


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