Parker's Promise

We just got back from a fast and furious and absolutely delightful trip to Utah.  We went to visit family and for my 8 year old girl to get baptized. It was a wonderful trip full of lots of family and as many friends as we could see.

Parker is doing well- in most ways.  He is still having seizures- almost every hour, if not more often.  We have been adjusting meds and his current cocktail really sedates him.  It is really hard for me to watch him just lay on his Dad's chest for long periods of time instead of looking around and interacting. He will also lump over instead of sit and play with toys.  There was only one day when we were home this week where he was his normal self-- interacting, sitting, walking and babbling away.  It is really hard to improve when he is missing his innate drive.

I called his neurologist today (we got back last night) and explained what is going on.  She asked me what I was wanting to do.  We discussed some options and I suggested to go down on the Onfi- back to the level that was helping, but not sedating- and increasing the Keppra.  She said that sounded great.  We made a plan of what meds to increase and decrease over the next few days and if the seizures do not improve we will try a new drug.  I LOVE that I am a partner with my son's doctors.  Over and over they have listened to what we have to say.  One nurse in the PICU at the very beginning said "You're the mom.  You are NEVER in the way." When we were life flighted to a second hospital closer to home, the new PICU doctors went off my daily notes over and over instead of digging through the transferred records.  My sister has had terrible experiences with neurologists over and over again and I feel so incredibly and blessed to have such WONDERFUL doctors, especially this neurologist.  What a tender mercy.

Just before we left on our trip, I put Parker in his gate trainer.  I watched him and studied him, and then made some adjustments.  This gate trainer is amazing and fully customizable.  I tweaked this, changed that angle and Voila!!! He propelled himself for a few steps the day before we left, and these videos are from today, his first time back in the gate trainer.  We weren't using it for a couple of weeks because it was hitting him just wrong on his g tube and really hurting him. I am so proud of this little guy.