Bye Bye Topiramate!

We are off of Topiramate (Topamax)! Brock hasn't had a single seizure that we know of- such a blessing! We fly to Houston tomorrow for some more cranial work and then have our first outpatient appointment with neurology on Friday. I am so anxious about that appointment- excited, but trying not to get my hopes up about things that will be said/discussed. As always, prayers are appreciated! 

I absolutely cannot believe he will be 5 months this week. As much as I am anxious to get to the  "2 year" mark where we will have a better idea of where he is developmentally, I desperately want time to slow down. He is seriously the most happy baby you will ever meet- and I absolutely am a different person after all of this. I pray I don't forget some of these lessons...and I'll leave you with a lesson too.

While shopping this week, Brock's medication alarm went off. I stopped, got out the bottle of milk and meds mixed together, and started to give them to him. A lady in her 50's walking by stopped, looked at me and said, "fruit punch in a bottle; that's a new one." Seriously people, please don't assume things. You would never know by looking at Brock the things he has gone through, but phrases like that being out an incredible amount of hurt and anger. This is still not a story that I would have liked to claim as my own, regardless of how perfect he looks. Our days are still filled with medication I'd rather not give, doctors appointments, therapists, and checklists. I'm questioned about everything he does. How much did he eat? Did he cough? When? What did it sound like? One or more coughs? Did he roll over? Just on one side or both? Do you see him use his hands equally? Which one does he prefer? Does he bring his hands midline when he is on his back? Is he reaching for toys at all yet? Sometimes I feel like I can't just enjoy anything without taking mental notes to tell whatever doctor or therapist. I feel robbed of just enjoying life with Brock sometimes. 

Please be praying for Brock to continue to do well off of Topimax, and that we will be able to begin weaning Phenobarbital soon.