Thursday, September 24, 2009

Keeping Up With Meds

Here are Collin's breakfast meds. His bedtime meds are the same, plus one more. He has a much smaller selection for the 2:00 feed, but that batch requires me to use the mortar and pestle, so it still feels like a big deal. I keep an updated schedule with dosing on his health spreadsheet and, if we have several changes at once or big changes of any kind, I post all meds on the fridge so Kyle and I can remember which way is up.

Our most recent change in meds came yesterday during our appointment with Dr. Awesome. He took a look at Collin - at his eyes retreating back into his pumpkin head and the hair growing all over his face - and decided that we will wean the prednisone faster than planned. So the dose will be changing every two days instead of the six and then three we had previously decided on. This way, he'll be off in just under two weeks. Phew. It's interesting how the optimism from each of these drugs turns into a relief that they're over and an excitement to be free of the side effects. We will be sticking with the B6 (which we started Tuesday) for a full week before determining whether or not it's working. If it's not, we'll move on to Vigabatrin (Sabril) which the FDA approved last month and has only been available in the US for a couple of weeks! Hello prescription insurance!

On a side note of awesomeness: Dr. Awesome is leaving the country next week and I asked what we should do if something comes up while he's gone. He wrote up a simple little contingency plan for us and then...GAVE US HIS PERSONAL EMAIL ADDRESS. And just to prove that he would be able to get our correspondence, he took out his iPhone and read me an email from his inbox. It was nothing confidential, don't worry. I think it's safe to say that we're one of his favorites.


  1. Over and over and over I am struck by the big and little ways that God is blessing you guys. I'd say Dr. Awesome ranks up there with the "huge" blessings.

    I feel the need for a Collin smooch! Please give him one for me. :-)

  2. Get that man a Team Collin t-shirt. Stat.

  3. Thank you for your honesty. You all are amazing! Eileen.

  4. Talk about provision that Sabril has just been approved...! Add that to Dr. Awesome, and I'd say Team Collin is hitting it out of the park. =)