Update

I’ve been asked a lot lately how certain things are going with Gage and I just wanted to share an update here, since I honestly can’t remember who I’ve shared what with. Last week, one of Gage’s therapists asked me how things went at his appointment and I just looked at her with a blank stare, racking my brain to figure out what she was talking about. Eventually I realized she meant the appointments at St. Louis Children’s Hospital that caused us to miss our last appointment. I’m all over the place lately and constantly have a bad feeling like I’m forgetting something. Yikes! Since I know so many of you are interested in all things Gage, here’s a little about our last few weeks.

After the extended EEG we did, I tried to patiently wait for a report on results, only to find out Dr. Collins, Gage’s neurologist, was out of town for a conference. I posted something about waiting for results, and that very next day, as if the prayers I hadn’t even formed yet were answered, I got a call back from his nurse. While he was away, the doctor reviewed the EEG results. He confirmed that Gage did have 2 seizures during that time and recommended changing his medication. We started slowly introducing topiramate. The first weeks were a little rough. Gage had a very hard time sleeping at night, and I couldn’t be sure if it was a side effect from the new medicine, or just him wanting to be cuddled instead of in bed alone. So many possible side effects are especially hard to pinpoint with a kid like Gage, because he can’t tell me exactly what’s going on. But we’ve stuck with that new medicine for now. Per instructions, we checked in with the doctor after reaching our goal dose. I called a little earlier than the end of the third week, because one night last week Gage had a small seizure at bedtime. His doctor said that his old medicine (Trileptal) he was still taking could be causing problems, so we’ve started weaning that one, and are nearly off of it completely. The doctor said we could discuss other options if we still aren’t happy with the new med as time goes on. Hopefully things will settle and we’ll start to get a better understanding if this is the best treatment for him. I don’t want to jinx anything, so I almost hesitate to even type this, but we did have 2 nights in a row of Gage sleeping in his own bed from bedtime all the way until morning! Halleluiah!

Another update to share has to do with the appointments I mentioned at St. Louis Children’s Hospital. Our first one was with the neurosurgeon, Dr. Park, who performs SDR. We were following up on our initial consultation with him that we had back in March. From his perspective very little had changed and he said he would be very hesitant to do the surgery, explaining that it might not have much of an impact on Gage’s outcomes. That is basically what both Evan and I expected to hear. From there, we went downstairs to see the orthopedic surgeon who works collaboratively with Dr. Park on patients who get SDR, to do tendon lengthening when it’s needed. He told us that operation is something you only want to do once, and recommended waiting until Gage was standing and bearing weight more, if we were to pursue it in the future. Both doctors assured us that we are doing the right things, like therapies and exploring options and taking advantage of the resources available to us. They also said we could come back to follow up in another year.

A couple other things going on in the world of Gage. Yesterday he returned to hippotherapy at Dynamic Strides after a couple month hiatus. He did so awesome! No tears at all, and looked so big sitting up on Johnny Cash, a pony he was riding for the first time! And later today, we’re headed to MSU to get an adapted car for Gage through the Go Baby Go program! I can’t wait. I’m so excited to see what he thinks of riding in his own vehicle with the chance to be in control. Stay tuned for more details (and of course pictures) from that!