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Another Challenge

June 14, 2006

Will is growing a lot, and is probably crossing the 5-pound mark as I write this. He’s slated for an extubation on Thursday, and we’re enjoying dressing him in real clothes, holding him, and interacting with him. He seems well-rested and is frequently alert as we listen to music, talk to him, and play with his hands and feet.

Today we got a partial answer to the question of why he hasn’t been better able to breathe on his own. A fluoroscopy yesterday revealed a partial paralysis of the left side of his diaphragm; an occasional complication related to cardiac surgery. Which doesn’t change his plan of care, but does present another hurdle to cross, and a delay as we ask him to compensate for yet another physical challenge.

I’m not disappointed with him for these setbacks, but I do feel frustrated for him. I accept these physical challenges in and of themselves—I don’t even see his cleft lip and palate anymore, and can’t imagine him with a different kind of heart—but I grieve the effects of them. His breathing is inefficient because of his cleft, and his facial structures make it impossible to give him conventional CPAP to wean him off of the vent (not to mention the feeding issues we’ll likely face later). And now, thinking about the additional inefficiency of trying to work around a malfunctioning diaphragm leaves me sad and short of breath. Even as I accept the larger issues, when I consider their effects, I say “can we get a break?” Yet I’m constantly reminded of his remarkable strength, and unexpected success thus far.

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7 Responses to “Another Challenge”

  1. Rebecca says:

    5 lbs! Wow – that’s more than 20% increase in body size from birth. Yay for Will!

  2. Anonymous says:

    I’ve typed, erased and retyped then erased words which I meant to encourage. Nothing does the job. I am so sorry about another set-back; this must be discouraging to know he’s got a diaphragm issue as well. I am just praying for his success on Thursday. He’s come so far! I rejoice in his progress and weight gain.


  3. Greta says:

    We’ll keep praying. He’s already done so much more than I thought he could. He’s such an amazing kid. I’m sad with you that he’s got one more thing fighting against him and am thankful that he’s still growing and fighting back.
    Love to you.

  4. Anonymous says:


    I was saddened to hear about Will’s
    new obstacle but I have Faith that
    God will help him overcome this also. He has been such a little fighter this far and it just amazes
    me to think of all the battles he has already won. We are continuing to Pray for all of You
    and send my Love and Prayers to you & Stacy as well as the rest of your Family and Church Friends. I would love to be able to hold those
    beautiful Babies.

    Love & Prayers
    Aunt Faye

  5. Mike Croghan says:

    William the Conquerer, battling through every struggle with courage and strength. Still praying for you guys every day. It was so cool to meet the beautiful little Stavs on Sunday!!

  6. Anonymous says:

    Will (as well as Mom & Dad) will overcome this obstacle too. God has reasons to keep Will fighting


    Iowa Mom & Dad.

  7. Dawn in Chicago says:

    I’d say that Will, who is little in his body size but large in determination and heart, takes after his parents. You two have faced many obstacles, frustrations and challenges in getting to this point of having your own little ones to care for. You have reach this point with much struggle, sorrow, compassion, wisdom, faith, and ultimate hope. What characteristics he hasn’t inherited in the genes, he will see modeled before him!

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