Tuesday, June 25, 2013

June … dreading it

I’ve been really upbeat and nonchalant about it, but it’s almost time … June is here.

First, Jennah completed her entire Kindergarten year!! We are so incredibly proud of her! We had an incredible staff of 12+ people who helped her develop and grow this past school year. We are planning to let her attend full-days next year for 1st grade, which includes taking the bus to and from school … what will I do with myself?!WP_001001

Team Jennah’s Joggernauts also returned for our third year at the Epilepsy Foundation Northwest’s annual Walk/Run for Epilepsy. It was very low key this year, but we still managed to raise over $1000 from the generous support of our friends and family and we had our biggest team yet!EpilepsyWalk 005

Things are going really well … so why am I whining so much? What could I possibly be dreading? Indeed, this has been such a wonderful year for Miss Jennah. She’s been progressing so well and making huge strides and accomplishments. She hasn’t been in the hospital since March 2012, is starting to eat and vocalize, and rarely cries unless she is tired, overstimulated or uncomfortable. She is so healthy and so happy.

We’re going to put an end to her happiness again. Jennah is scheduled to endure another procedure in 2 days to remove the hardware from her hips. It’s a “minor” procedure in comparison to the total hip reconstruction of 2011. It should only take 1 month to recover. It has been over 2 years since the reconstruction and the bones have fully healed. There is no need to keep the hardware in her body … they are foreign objects. We know that she can’t sit on hard surfaces because they bother her. We know that she side-sit at certain angles because the muscles snap against the bracket. We know this because we can see it in her face and she flinches. But she can’t tell us these things. She can’t tell us if she wants us to take the hardware out. She can’t tell us if the anesthesia makes her nauseous. She can’t tell us when and where it hurts. The Wong-Baker pain rating scale that is used for children … the one with the faces ranging from smiling (no hurt) to tears (hurts most) … is useless with her. We’re choosing for her with total disregard to her desires … right?

We’re going in for the pre-op visit tomorrow. We’ll ask questions about procedure and recovery time. We’ll ask when she can ride and swim again. But nobody will ask her if she wants to go through with it. Nobody will know when we’ll see her smile and dance her legs again. She’s going to cry again.

My friends and family are relentlessly supportive and have stepped up once again … you will never know how much your support means to us.

005Please pray for us … pray that Jennah will recover quickly and with as little pain as possible and that we will take comfort in knowing that we are making the right choices for her and that she doesn’t hate us for inflicting these procedures on her…

BTW, I badly sprained my ankle 19 days ago. Ligaments are torn, tendons are ruptured. I can’t do yoga or run. I really, really want to run right now …


  1. I know in my own heart that everything you do for Jennah is done after countless hours,days and months of contemplating whats in her best interest. Your family is so full of love for her that it cant even be expressed into words. You are making the right decisions for her and never let anyone tell you otherwise.

  2. Hugs. Lots and lots and lotsandlotsandlotsa hugs.

    Oh, and condensed sweetened milk. In a can.

    Love you.