God alone is Sovereign

1 Chronicles 29:11

Yours, O LORD, is the greatness and the power and the glory and the victory and the majesty, for all that is in the heavens and in the earth is yours. Yours is the kingdom, O LORD, and you are exalted as head above all.

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Wednesday, January 18, 2012

Heart Cath Coming Up

Sorry I have been an absent blogger recently. There has been a lot going on in working on the 5K race details as well as just normal everyday mom and wife stuff. By the way, if you haven't registered yet for our 5K on April 14 please do so by going to www.spartanburgrunningclub.com. But, this post isn't about the 5K.....

So if you remember at our last cardiology appointment Dr. R was going to call the surgeon to talk about Anna Grace's case and discuss a game plan since she is hitting her "milestones" for her next open heart surgery, the Fontan. I heard back from Dr. R's office today and he talked with the surgeon who said to go ahead and schedule her heart cath and then if everything looks OK to plan for a summer surgery.

As it stands right now I am just waiting on a call from the cath lab at MUSC to get her heart cath scheduled. I'm sure I'll hear something from them in the next week or so. It is a little nerve-wracking waiting on the call and seeing the ball starting to roll toward open heart surgery, but honestly I am OK right now. I'm sure the week before the cath I will start to get nervous, but I really am OK today.

I know she needs this next surgery and as difficult as it is she really does need it. I think for heart kids like Anna Grace - they seem so normal and healthy on the outside. To look at her you would never know there was anything seriously amiss medically with her. But I will have to say that over the last few weeks specifically I have seen her slow down. A Lot. Dr. R has told me from the beginning that these heart kids will stop when they're tired, that I won't have to make her stop. I wasn't sure I ever believed him because she has always been so active, but recently I have seen it very plainly.

As many of you know, I am a hiker. I like to hike and I hike with my kids because it is one thing this germ-a-phobe of a heart mom can do with her kids that I can truly enjoy without dousing my kids with hand sanitizer. Nope... I don't worry about dirt, not one bit. So we hike a lot. We hiked a lot last winter and I used a hiking backpack to carry Anna Grace in. It was great and she enjoyed riding in it very much. However, she is 2 now.... and 30 pounds... so the hiking backpack is now out of the question. So, we all walk. Recently though, she will run ahead of me with her brother and then she will get tired and just stop and squat. When I reach her she'll hold up her hands and say "Mama hold". So then she goes on my hip as we walk for about 5 minutes until she has caught her breath and then she is off again until she gets tired and she will stop and squat. Well, this week instead of just squatting to rest she actually laid down on the ground. So, now she is on my hip more than she is walking. I'll let her down to play and such when we stop somewhere and find something interesting to look at, but when we are walking, she is on my hip. Other than the big scar on her chest it is a very visible sign to me that she has a heart defect.

I am hoping that after this next surgery she will have more energy. I hope she just feels better. I hear a lot of heart Moms say that their heart kids were noticibly more active after their Fontan and I pray that is the case for Anna Grace as well. So.... here we are just waiting on the call from MUSC. I will be sure to post once the cath gets scheduled. Please begin praying now for Anna Grace and the doctors and the timing of it all. And so our heart journey continues....

This was my best attempt to get both kids to look at the camera at the same time

I love finding moss and I have instilled this love in my kids. Mostly Anna Grace.... who gets SO excited when she finds the moss on her own. Here is some moss AG found on her own and we all had to inspect it and touch it!

1 comment:

Jennifer said...

I hope our game of phone tag ends soon! ;)
You know I will continue to pray for AG and for you.
Love you, friend!!!