Tuesday, July 21, 2009

Neuro Day

Neuro Days make us all want to pull the covers over our head. Today we were lucky enough to have our good friend Shelly come over for the morning, which always makes everything run more smoothly. We also had our last visit from Collin's in-home nurse, Lisa. Collin weighed in at 12 lbs 10 oz!

We packed up most of our earthly belongings and headed to the neurologist's office for an EEG and discussion of the next stage of the treatment plan. Collin did great during the EEG, but he still has some abnormal brain waves even though he's been seizure free for five days. He's also having all kinds of yucky side effects since he's on three heavy duty meds at the same time while we wean him off ACTH, ramp up Topamax, and use Clonazepam to help with the transition. So, the plan for now is to stop increasing any of the meds, speed up the ACTH wean, and just watch. If the spasms come back, a B6 regimen is next in the line-up of treatment options.

After over three hours at the neuro's office, we raced home (with me pumping on the way) to meet Collin's awesome vision therapist, who was waiting for us on our porch. We didn't get a lot done since Collin has refused to open his eyes for the past couple of days and was just generally freaked out by the craziness of the day. She was wonderful, though, and just talked me through some things, including suggesting that we hold off on using his glasses for now since he has so much going on at once. When his meds get evened out, we'll think about reintroducing glasses a little bit a time. The only bad part about the session was that Collin had a few tiny spasms as he was waking up from a nap. No matter how minor they are, it's crushing every time.

Collin's Nana came this evening, which is always a treat for everyone. Kyle and I got to take a long walk together and catch our breath from the day before launching into Collin's extensive bedtime regimen and falling into bed.


  1. You are right Collin is a champ!!!! Please give him hugs and kisses from his Aunt Wende and cousin Taylor.
    We love you guys very much! Let me know when I can babysit!

  2. Dear Collin,

    I am Valarie Shoulta's mom. I printed your picture and shared it with my friends at work. We prayed for you this morning. May God bless you and your mom and dad.

  3. Griffin would like to know if you have to have a medical degree to be on Team Collin. If not, he'd like to submit an application. :)

  4. not only is collin a total champ and tough as nails, but his momma and daddy are complete superstars with amazing strength!

    praying for you all! if you need anything let us know!

  5. You are covered with prayer... thank you for blogging all that you are learning and doing. We are believing the best. We have a BIG God!