November 29, 2011

big day.

Today is the day. I was given the "ok" yesterday to start weaning Pin off topomax, a med she has been on since June 2010. We are beyond thrilled and I'm really nervous. We want her to remain stable as her meds decrease. Six pills, dropping one a week, over six weeks. This is the best Christmas gift we could ever receive.

Please pray she will continue to be seizure-free and that development will blossom after the removal of this med. Her neurologist calls it "dopomax," as it calms and slows EVERYTHING in her body. It effects balance (she is 19 months and still not independently sitting), taste, etc...

Thanks for caring for us. I will keep you posted.

November 12, 2011

longest stretch ever. fewest meds ever.

On November 5th, Pin crossed her FOUR month mark of being seizure free. I purposely didn't want to make a big deal of it, but all day I was secretly rejoicing in my heart. She has been doing SO well, seems very stable and is on the least amount of medication that she has ever been on. As of today (after a six-week ween), we successfully cut her spasm medication to half the initial dose. We are super grateful to have her on less medication and pray this continues.

Jer and I are still not totally "back to normal" yet. There is MUCH more laughter around our house now, playing together and going out as a family, but I continue to feel the stress from the day in/day out pressures of working with Pin developmentally. I also have been haunted by dreams at night that have me reliving those first few months. I know time and the Lord can heal those scars and memories and for now, I'm thankful for a husband who lets me share my feelings day or night. I'm thankful for friends that let me too. 

We love you.