Parker's Promise

Parker has made some great progress in the last few weeks. Yesterday in therapy his therapist was shocked.  As she was getting stuff ready I sat him on the mat and then moved back a bit.  She got really quiet. I looked over and she was just watching him and counting.  Parker sat by himself for 1 1/2 minutes!!!  This is huge.  His trunk support has improved so much and opens up whole new avenues of things to work on.

It is is fun to see something that seems so impossible, but when broken down to little tiny motor steps he can do it!!!  How do you get from laying down to sitting criss cross? I should really video this.  She showed me yesterday and it is so cool. He lays on his stomach, arms in front- ready for tummy time.  I scoot his knees under him so his bum is up in the air.  (There is something so cute about little diapered bums sticking up in the air.) Then I pull his hips back and encourage him to push his arms up- like the picture below.  (Notice the weight he is putting on his right hand?  Huge people.) Then I nudge his bum to the right so he is in side sitting, and he brings his left leg around so he is in criss cross.  So impossible, yet now so doable!!! It was a really fun day in therapy. In OT, he can now reach up and across and pull suctioned balls of the mirror with his left hand! At first he would give a little tug and it wouldn't come off, but he kept trying until he could tug it off.  So cool. I bought some for home and the kids love spraying the mirror with water and throwing them on for him to pull off. We are still working on the right hand. It is coming along, though.

A few days ago I was reading back through several posts from when we were getting ready to leave the hospital.  That was over 7 months ago.  It was during his g-tube surgery and I was sooooo sick.  I am so happy to be on this end of things. It was really emotional to read back through how nervous (terrified really) I was to bring him home.  At that time I was really hoping he would start drinking and using his right arm. And that is still what we are working on now.  We have worked so hard.  He has made soooooo much progress.  It is interesting that we are still working so hard on those two things, but yet they are coming along and he has made HUGE strides in so many ways.  They will come.  We will be diligent and patient.  Right?  Fine.  We will TRY to be so hard to be diligent and patient.  So hard. But yet so rewarding.

I always want to remember the look of glee on the therapist's face yesterday when she sat down and gave him a squeeze and said "This is exactly why I love PEDS." She said he has already far exceeded what was expected of him.  He is a fighter.  He works so hard, yet he is so easy going at the same time and tolerates so much. He is just right and we love him so much. 

And in case I didn't mention it before, he has learned to propel himself in the gate trainer.  HUGE!!!

He is still having seizures about every 45 minutes. We are starting him on a third med tonight.  I never thought I would be happy to put my child on 3 anti-seizure meds at the same time and here we are.  We will probably eventually take him back off Keppra again.  We gave it another go, but it really does not seem to do anything.  At least behaviorally he is doing great.  He is happy, engaged and progressing. And I will take that. :)