Wednesday, August 26, 2009

Worst Day Ever. Again.

Kyle's not sure where I got this idea, but for some reason I was thinking that seeing a geneticist would actually be helpful. Maybe I'm spoiled by Collin's neurologist, but I was envisioning a hey-we're-all-in-this-together-and-we'll-get-to-the-bottom-of-it-somehow kind of experience. Instead, the visit consisted of a somewhat rough physical exam, the discussion of some of the conditions we may be facing (along with an explanation that there are no treatments for any of them), and the suggestion that we might not want to have any more children in the relatively likely event that we find some sort of genetic component. Then he ordered another round of blood and urine testing.

So, we went home, I had a good, loud cry, and then we packed everything back up and headed to the children's hospital for Collin's blood work and spinal tap. And on the way there, he broke his six-day seizure-free streak with a cluster of spasms. I jokingly asked Kyle what else could happen today, didn't like his response, and made a mental note not to ask that question again.

At the hospital laboratory, I explained how much trouble they had encountered on our previous visit, so they called in the IV team so they would only have to stick him once. Except that they stuck him FIVE TIMES (including once in the head, which almost sent me over the edge), bruised him horribly, and still didn't get everything they need, so I have to take him back again this week. Then we picked him up and walked over to get his spinal tap, where they 'missed' on the first go and had to try again. While Kyle and I held him down. The picture above is of Kyle and Collin while we were waiting to get out of the hospital. If you squint, you can see Collin's spinal tap band-aid hanging out.

The whole ordeal took about nine hours, so we were all, needless to say, drained when we got home. Collin slept like a rock for a while and Kyle and I made an oven pizza and sat there in a daze.


When we put Collin to bed, we kept hearing this strange rattling sound and discovered that a toy I had laid next to him because I thought the yellow might attract his eye was just within reach and he was batting at it over and over again and sometimes even gently touching it with his fingers.

Take that, crappy day.


  1. I would like the geneticist removed from Team Collin.

    Can we take a vote or something?

  2. Annie, I have been keeping up with Collin through Aimee. She gave me this site last night. I love it! Several people in Southern Ky are praying for you guys.

  3. There's always a "but." Praise the Lord.

    The emotion and empathy that your words bring lately cannot be described by my meager words. Just know that the Chicago component of Team Collin are with you in prayer and spirit *fiercely.*

  4. realtyrita@insightbb.comAugust 27, 2009 at 7:01 PM

    You don't know me, but once I was told of this site, I check it most everyday. They say God doesn't give us what we can't handle, but you and Kyle must question that daily. I believe it is true though, I and will continue to pray for you. You both are truly amazing people, and with that I thank God for the small challenges He has given me.

  5. What a true champ our Collin is!!! I love the spirit of this little guy. Tell Collin he's my hero.

    Thank you, Annie, for always letting God's blessings and watchcare shine through when you update us on Collin.

    I vote "nay" on the geneticist.

    Love and many, many prayers

  6. definitely bench the geneticist until he can get his attitude right!

    Yeah for Collin! such a bad day and still time to play!

    I love your ability to relish the good things that happen!