Thursday, July 28, 2011

Here we go again

My old friends Anxiety and Dread have finally returned to our house... It's time to start preparing for our return to the hospital for sweet Caleb's next open-heart surgery.  We did an amazing job of putting this inevitable event out of our minds this summer, but after Caleb's 6-month check-up this week, I've realized I can't really put it out of my mind any more.  The surgery is coming quickly whether I want it to or not. 

Caleb is doing ok.  His weight gain has slowed quite a bit lately and he has dropped to the 3rd percentile for weight.  Our pediatrician reminds me that Jonah wasn't much bigger and he had no health problems, and I try to be comforted by that.  Caleb now gets up a couple times in the night to eat, probably to make up some extra calories.  Developmentally, he is doing pretty well.  He is weak in his trunk and is not able to sit on his own at all, but otherwise has done all the things a 6-month old should do.  

On Wednesday August 3 we will be going in for the first round of tests on his heart in anticipation of his surgery, which will be in the next couple weeks.  Caleb will not only see his cardiologist on Wednesday, but we also have to see a pediatric neurologist to run some tests on his brain.  The doctors want to make sure his brain is developing properly.  His head circumference is very small, not even on the growth chart.  Fortunately, he is developing normally so they believe is brain is growing and developing properly, but because it's Caleb, they want to make sure.  That makes Wednesday a big day.  Not the biggest day ahead, but still big.  

Last night I met with a couple friends and I confessed to them that I have mostly avoided talking about Caleb's health lately.  To the point that many people don't even realize what all is about to happen.  I need to communicate better so that people can support and encourage us... because we really need it.  That dark cloud of Anxiety and Dread that went away has come back again, and it's always there, hanging over our days.  We keep it at bay, but it's still present.  We are focused now on what's ahead and we have to ask our friends and family, once again, to pray for us and come around us.  We are heading back into the unknown, into a place where it's painfully apparent that we have no control over what happens to our son.  

I will be updating the blog frequently, beginning with our tests and appointments next week.  We are not despairing!  We are trusting God with every part of our life, the joyfully bright parts and the painfully dark parts.  Thanks for your prayers for our family.   

5 comments:

  1. My sweet, Katie. Just by posting this and acknowledging that you have avoided these communications with friends, that is a HUGE measure of courage and strength. I am so proud to be your friend. You continually amaze me with the wisdom and humility that God has given you and Daniel. Please know that I think of you often, and your family is continually in my prayers. Your friends and family want to help during those times of anxiety and dread.

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  2. Katie, I'm glad you shared this! We want to continue to love and support your family every way we can. Know that we're praying for you, and we're here if you need anything at all!

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  3. We will continue to pray for you guys.

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  4. I've been thinking about you a lot lately. We are going to be in and out of St.V's the next couple of weeks. Maybe if you have time we could meet up. Is Caleb going to see Dr.Mcguire for Neuro? If so she is AMAZING.

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  5. Katie - - I know old anxiety and dread, too. (Just didn't want you to feel alone in the world!) One of the things that has helped me in the past year when I feel I am about to encounter one of these false friends is to tell myself the following: Be careful, keep calm, don't be afraid, and do not lose heart. (These are words and principles which helped me as I studied Isaiah last year.) After I have said those words I go to our Father in prayer. It is amazing the sense of peace and calm that envelopes me after saying the words out loud and praying immediately. Caleb is inscribed on the palm of God's mighty hand. I take courage and comfort from this thought. God bless you and your beautiful family.

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