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!

Wednesday, July 28, 2010

How are we doing?

Brad tells me that he is often asked, "How's Nathanael? How are Jamison and Bree?" Since we still don't get out much to see people (my big adventure this week was taking BOTH boys to the hospital, and spending 7 hours there, plus 2 in the car) here's the lowdown on us:

Nathanael still has no immune system of his own because he is still on steroids, which suppress the immune system, and in his case, keep him from growing T and B cells (lymphocytes required to fight off infection). He will be off steroids (except for a small "physiologic dose", which will be taken orally - no more IV meds at home!) after August 5. :) Yes, I'm THRILLED about that!

Besides that he is a generally happy little boy, doing most of what almost-1-year-olds do: eating a lot of everything (he now loves beans, peas, crackers, cheese...he tried zucchini tonight), babbling up a storm, grabbing everything within his reach (and sometimes things out of his reach), watching his big brother, and just wanting in on all the action around him. If I let him loose on the floor I think he'd end up rolling all over the place.

Developmentally he's on track with everything except gross motor skills (he doesn't yet pull up to standing, and cannot move himself from lying down to sitting up). His doctor reminded me that his weight gain (he weighs around 19.5 lbs now!) and leg weakness (caused by his time on steroids) both factor into this, and while she's not too concerned, has recommended a PT consult, which should happen sometime next month through ECI.

Jamison is doing really well, although today he tried testing the limits a few times, and spent some time in "time out"...not fun for either of us, but it does help. Well, that along with the removal of favorite toys. He's growing and changing so much right now that we just keep trying to adapt. He loves to sing (today it was "Twinkle, twinkle little star" but instead of "like a diamond in the sky" he'll substitute things like, "puzzle" or "flag" or "truck" for "diamond". It's cute to see what he comes up with), he LOVES puzzles, and now tries to do them quickly, and he plays with his cars in the parking lot (kitchen table) and his animals at the zoo (basket) or on the table in the living room. He also LOVES to hear us make things talk (i.e. "Make Nathanael talk" or "make my carrots talk") and wants to hear us make up stories about the pictures in his puzzles, or make up songs about various states (J: "Sing the Minnesota song." Me: "What Minnesota song?" J: "The Minnesota song!" Me: "Oh, I guess we need to make one up..."). He is very creative, he even has imaginary friends in various states, and a few in Canada! On Monday, when the doctor addressed him as the "famous Jamison" he said, "Miss April calls me Jamison the Puzzle Master." It was so cute!

So how am I doing? Tired, busy, thankful, worn out, overwhelmed. I could write a lot here, but it's late, the computer battery is almost gone...the story of my life these days. Please do keep us in prayer, and feel free to call (just call on the home phone, as cell minutes are a precious commodity these days!). :)



  1. Bree,
    so glad to hear both of your boys are doing well. Yea for the Nathaneal to be off steroids in a few days!!
    I am right there with you on all the emotions us mommies feel. I am praying for you and your family daily. Will hopefully be in Texas soon, and maybe a play date for our isolated boys.
    Melissa Merriman

  2. I have been wondering about you lately. It is so good to hear the low down. I can't help but imagine what your boys must be like. Since Clark and Jamison are the same age, it was fun to read about him. Clark is big into action figures, stuffed animals, and dinosaurs. We are hoping to come to Texas in May for Brian McFaden's DTS graduation. I sure do hope I will be able to see you and all your boys.