One Strong Little Spirit

Will didn't have to get a shot yesterday!  Since we are starting the ACTH wean, we have switched to every other day dosing on that medication.  This is awesome because it means that we are one step closer to being done with ACTH, which has some nasty side effects.  We will slowly wean over the next 3 weeks, but at least for that medication, there is an end in sight.

This also meant that we were able to enjoy a much needed night out without the kids.  My birthday is coming up at the end of the month, so Dan surprised me by arranging for my parents to watch the boys overnight so we could go out to dinner and have a night off.  Since Will didn't need to get his shot or blood pressure read in the morning, we were able to just pack up all his medications and let the boys spend the night with Grandma and Grandpa.  We felt a little guilty leaving our boys behind given all that is going on right now, but it was really refreshing to get away, and the two of us really needed to escape for a little while.  The last time we went out without the kids was on December 31, a few days before Will had his first seizure.

This was all on the heels of a difficult week.  On Tuesday (4/19) we took Will for a routine eye exam, which is required within 30 days of starting Vigabatrin, to get a baseline so that we can evaluate if he suffers any vision loss from the medication.  Will just had a full eye exam in March, so we really weren't at all concerned about this appointment.  We even brought Jack with us.  As the doctor examined Will, the doctor paused for a moment and said that he noticed a slight paleness or atrophy to Will's right optic nerve (on a scale of 1 to 10 he said it was about a 2 or 3).  What we thought would be a quick appointment ended up lasting over 3 hours.  Another doctor was brought in, and he concurred.  We were shocked to find this out, as Vigabatrin causes retinal damage, but this was optic nerve damage, therefore not related to the medicine, but perhaps somehow related to the seizures.  His is mild, but if it progresses the result would be total blindness.  Thankfully, right now it is only in one eye.  We will be going back to the Clinic to meet with our metabolic neurologist soon for additional testing to see if we can figure out why this happened, and if we can prevent further damage.

We got a special phone call earlier in the week.  The pastor at our church asked if Will would be one of the "disciples" at the Holy Thursday services, and get his feet washed.  We were a bit nervous because of his immune suppression, but Will waited in the car with his grandparents until it was time, and then we just took him straight up to the front of the church for the feet washing, not letting him touch anything, and whisked him back out to the car as soon as the feet washing was over.  It was awesome to get to be a part of the service, and to feel the blessing of the entire congregation upon Will!  Jack got to come up to the altar with us, which was great because we didn't want him to feel left out.

So far, we are not seeing any real reduction in seizures from the Vigabatrin, they have actually been back in full force for a little while now.  He just reached his target dose, so we won't really know if it is working for another week or two.  He is extremely hyper right now, just chasing him around the house is exhausting!  The amazing thing is that despite the seizures we are seeing some positive changes in Will.  Since starting the Vigabatrin, we are seeing glimpses of our happy little boy and there is often a sparkle in his eyes that we haven't seen in a while.  This is truly awesome to see!  Although he is still in a bit of a fog, he is interacting with us again, and responding to simple things like his name and the word "no" - of course, only when he is in the mood, as he is a toddler after all!  It is great to hear the sound of his laughter again.  When we look at the list of anti-epileptic medications Will is on - Topamax, Keppra, ACTH and Vigabatrin - it is hard to believe that he can even be alert.  His little spirit is so amazingly strong.  We hope that you and your families enjoyed a blessed Easter!