I just think this is so cool.  So how do you teach a baby to sit up from laying down? I love that my therapist is so incredible at breaking down the steps to make something that seems so impossible- doable.

This isn't the best example, but certainly the best I have on video. :)  He normally has more even hands and knees position, but today he kept moving his knee forward which is great!!! Unless of course you are trying to take a video...  This shows our game "back and forth" and "side to side." This is the precursor to crawling because you have to be able to weight shift when you crawl.  Try it. :) That's why babies rock on their hands and knees when they are developing and getting ready to crawl. Then to teach how to crawl, you put one arm forward, then opposite leg, then other arm and opposite leg.  Ideally, the opposites should move at the same time. Tonight he was moving his left leg on his own!  Sometimes he moves his arms better, too, but I didn't weight shift him enough tonight.

Look at him put weight on that right arm!!!

This video is this week's assignment.  I am not that great at it yet, but the point is for him to use his elbow to help him sit up.  Specifically, we are supposed to focus on laying down to elbow prop.  Once he is successfully on his elbow, he is pretty good at pushing himself up on his own. Earlier this week he was not putting any weight on his elbow at all.

In speech therapy we are working a bunch on tongue control and getting him to stick out and use his tongue more. I found a new trick that he loves.  We did this ALL during church today and he has become quite good at it. I have to hold his head back because other the tricky adaptable child just bends his head down to get it. Silly boy. :)

This one is from the blooper reel.  He tries so hard and is so patient!

This was earlier today so he improved quite a bit in just one day.

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. :)

A glimpse into the life of Parker.  He is such a happy little guy.  We are so grateful we got to keep him and that he is so happy and doing so well.

He loves his Daddy.

 So do I. :)

 For some reason this only happens when I am going to be late to therapy. He got a hold of his g-tube cord during his nap and leaked the entire feed of Boost formula all over him and his bed.  mmmmmm.  I will never look at vanilla the same after this whole experience.

 Some days we've just had enough.

 We have to pin his left arm and his eye... and sometimes its easier to do it all at once.  Otherwise he pulls off the eye patch.

 Creative stretching. He is actually in a pretty aggressive stretch for him.  His little legs and hamstrings are so tight.

 He doesn't always mind being pinned.

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.