Let's take a break

We're on a break. As in, we've decided take some time in our relationship to figure out what we really want and need. We need a little space and time apart. It's not you; it's me. Really.

I am referring to our relationship with the Neurologist, of course! We went for our weekly EEG for Ryan last Wednesday and found out that his EEG looked good and we no longer have to come for weekly appointments. Our next scheduled appointment isn't until July! We'll continue to go periodically to make sure everything looks good. We love our Neurologist, Dr. Hunnicutt, but we were glad to get her prescription for some time apart. Doing away with the weekly appointments feels like a huge relief!

To recap, Ryan was diagnosed with Infantile Spasms and immediately started twice daily ACTH (steroid) injections. The ACTH stopped the spasms. Over the course of 4 weeks, we gradually decreased his dose and had weekly EEGs to make sure the spasms weren't coming back. Meanwhile, we began giving him Topamax, which is an anti-seizure medicine. We were able to completely end the ACTH injections after 4 weeks and had the last EEG to confirm that the spasms didn't return after being off ACTH.  We have ramped up the Topamax doses so he gets 1 pill sprinkled on his food in the morning and 2 pills sprinkled on food right before bed. Our upcoming EEGs will make sure the Topamax is doing what it's supposed to do and that he remains seizure-free. In the meantime, I will have to call if I notice anything suspicious or anything that looks to me like spasms or seizures.

This is great news for us. We can now focus on working on developmental milestones. Ryan is really dialing it up on smiling and laughing. He has this shy, crinkled nose smile that absolutely melts my heart. And his laugh is pure sugar. We have a long way to go before he's ready to do things like roll over, sit up, or crawl, but I'm encouraged by his tracking, focus and eye contact. Go Ryan, go!

Our family appreciates your encouragement, thoughts and prayers for Ryan. I ask that you continue to pray for him that God will keep the seizures away and allow his brain to continue developing so that he can catch up to his peers and other kids in his age group on all levels of development.

Cat nap yesterday afternoon

Trying to capture a smile today

What a handsome boy