New Blog for Nathanael

We recently started fundraising with COTA to cover Nathanael's medical expenses, so updates about him will be on his new blog from now on: Please check out the blog, pictures, and opportunities to help, and feel free to pass along the link to others. We appreciate your concern!

Tuesday, May 10, 2011

Me...a skeptic? Okay...I admit it. I admit it...I'm a bit of a skeptic...especially when it comes to medical care. (Anyone remember the surgery I walked out of AFTER I'd been in pre-op for several hours and already had an IV in my hand?) I have learned over the years to be thankful for the doctors into whose care we have entrusted ourselves ...but I still need answers to my (fairly extensive) list of questions. So I arrived at Nathanael's check-up with a full printed page of them. When we saw the doctor she was thrilled with how Nathanael looked, and was so excited to see him. (I love this about her - she's a world renowned expert in her field, who still takes the time to personally care for each patient, and even addresses them directly, despite their young age.)

When I asked the "big question" (i.e. "What does his immune response look like?") she responded with "terrific" and I think tears welled up in my eyes. I have waited 20 months to hear this, and the moment did not disappoint. We spoke at length, maybe 30-40 minutes, and she answered all of our questions. (Of course, since then I have thought of several...I think I'm going to email our RN coordinator this week.) She even said, "Go ahead and treat him like a normal baby." I was floored. "Take him to church?" I asked, hesitantly. "Yes," she said as she smiled confidently, "and even put him in the nursery." Wow. He had NEVER been to our church, and of course, his daddy is the pastor! So his "introduction" to our church family (as well as a re-introduction for Jamison and I, absent the better part of Nathanael's life) was this past Sunday, May 8, Mother's Day. How's that for God's perfect timing?!

But back to the conversation with our doctor: we never did look at the actual lab results together. Given my usual skepticism, I looked at the numbers as soon as Nathanael and I were back in the hospital courtesy van headed home. When I saw them, I was confused. When I saw CD8 (one of his T cell numbers) at 19% I didn' know what to think. How could 19% of ANYTHING be any good? Of course, then I looked at the range, which was listed as 11-32%. Whew! I guess 19% is in the middle of the range...pretty good. Of course, the absolute values made me feel better as well. The CD8 value was 871, and the range listed was 400-2300. So in most of the values he's on the LOW end of normal, but the fact that he's even in the normal range just blows me away. After 17 months of excruciatingly difficult treatment, my baby is well. Thank you Jesus!

While I feel a great sense of relief, there is a sense of fear that has crept into my mind. Yes, I did anticipate this, as we have lived such an isolated life for so long that freedom seems scary. So how do I change my life back to "normal" without my baby - and my big boy, who has basically taken a year off from normal immune development by not getting sick and building up his immunity - getting sick all the time? I have already begun to face this fear head on, as our travels back put us in a situation to eat out with the boys on the way home last Thursday. We left from Cincinnati around 10:30am, and landed in Evansville, IN, where our pilots wanted to eat at Denny's just down the road from the airport. I was a little nervous, but agreed that we could indeed "treat him like a normal child" and take the boys out to eat. (We did still wipe down the table and booster seats first...I'm not going out ASKING for trouble!) I did get a little nervous that there would be smoking, as I've been told that exposure to smoke increases the risk of respiratory illness, and I don't want to increase risks like this, but was quickly reassured by the hostess that there was not. It was also nice that the place was not crowded, and we sat in a corner. So I faced that fear, took some normal precautions, and am "baby-stepping" towards a less isolated, more normal life. Yay! Again, thank you Jesus!


  1. The day is finally here! Praise God!!! I am so happy for you all. And I don't blame you for being nervous and extremely careful. I would want to ease him into the real world. Whenever a child is exposed to normal germs for the first time whether it be kindergarten or daycare, he will tend to catch everything. You don't want to be dealing with all kinds of viruses while enjoying your new freedom. And Bree welcome back to the world outside your house!! I am so happy for you.

  2. Wow. Awesome! I am so happy for you and Nathanael. What a great day! I worry all the time, too. I think it is the mommy in us. We just worry, worry, worry. I think God put this mommy gene in us that thinks ahead about all the possibilities and that was in order to make us better mommies :-D I don't know how many times I check on Alexis at night and Roger asks, "Why are you doing that?" and I answer, "I'm a mommy!"

    I like your combination of careful, but facing your fear. Worry and fear can hold us back, but you seem to be balancing it well!