And Though he be but Little, He is Fierce

I have sooooo many blog posts I want to write, and so little time :)  FB has been my outlet for the past couple of months, and I'm not sure why.  My blog is usually so therapeutic for me, but I think this last surgery was so traumatizing that I even had to take a step away from my blog.  I have had to MAKE myself write the past few posts, instead of my usual desire to jump on Blogger and write!!  This last surgery really changed me, and it's been a hard road.  But more importantly, it's changed Jayson... for the remarkable better.

I almost can't believe my eyes sometimes as I witness all that he's doing.  Things that used to be impossible have been made possible.  Things that used to be incredibly difficult have been made effortless for him.  It's incredible.  And I get excited each day just thinking about the new things he might do and the new experiences he might have.  He's been given a second chance, and it's a gift I know our family will never take for granted.

I see, FINALLY, so much evidence of all of his hard work paying off.  Each and every new thing he does requires so much cognition, concentration, and a collection of skills he's been working so hard on for the past 3 years.  Jayson has been in therapy for nearly three years!!!!  It blows me away.  And his brain is finally allowing him to collect all of his skills and use them in his daily life.  Please understand, Jayson is not healed.  He is not typical and the new things he learns are not normal.  It is still clear to see the deep concentration and effort it takes him to do the tiniest things.  But he is amazing, and he never gives up.  He is tackling so many things right now, and I am truly inspired.  

NOTHING, however, not even him walking, has touched me as much as a major accomplishment he achieved this week.  I feel this one action is really a collection of actions he worked so desperately hard to accomplish over the past three years.  I can physically see the effects of PT, OT, developmental therapy, and oral feeding therapy coming together and the HUGE jump in cognition is overwhelmingly apparent.  This action truly took my breath away and I felt it was a clear sign from God showing me just how much Jayson understands and just how much Jayson is capable of.

So Monday night Mike decided he wanted to make dinner while I was working.  It was starting to smell deliciously good in the house, with scents of onion, garlic, mushrooms and grilled beef.  Jayson recognized those smells as an indicator of, "It's time to eat!"  So he gets up from playing on the floor and walks over to Mike in the kitchen.  After a few minutes of exploring the kitchen, we found Jayson walking into the pantry.  He has explored the pantry before, and he typically just throws fun things on the floor.  Not this time.  He didn't play.  He intentionally went to HIS shelf where we keep his food, and he grabbed a pudding.  I actually intended to feed him a pudding with his dinner that night.  Not only did he grab it, but he held onto it.  He walked out of the pantry with his pudding and put it on the kitchen floor under the bar and started patting it, which means he wants it.  Mike was cheering him on and I was shrieking with excitement.  We were so proud of that huge milestone in communication and cognition.  But he wasn't finished.  He got himself from a sitting position on the floor to standing all on his own, a new skill he mastered this week, but he also leaned over and picked back up his pudding.  Crazy.  He continued walking while holding his pudding around the bar and around the kitchen table.  I tell Mike, "I swear, if he brings that pudding to the table I am going to freak the crap out."  He had other plans.  He walks around the table, approaches his booster chair and SETS THE PUDDING IN HIS CHAIR.  He then proceeds to pat the table and his chair, getting our attention, and showing us that he wants to eat.  I look over at him and he starts signing please while hitting the table and the chair.  This was insane.  But he wasn't quite done.  He went up on his tippy toes and reached for his silicone bib.  He pulled it off of the table and put it to his chest, trying to put it on.  I was in tears. I was shocked.  I truly was flabbergasted.  Did this really just happen????  Did he really just string all of those skills together to clearly communicate what he wanted?  And did he really make every effort to get what he wanted himself???  There seriously aren't words.

Let me help you to understand truly how remarkable this was.  Before cranio surgery in November:

• Jayson did not walk
• Jayson could not hold an object for very long
• Jayson did not make connections between smells, time of day, and daily routines like eating
• Jayson did not intentionally go to his high chair on his own, but especially not ever when he was hungry
• Jayson did not show any real signs of hunger or desire to eat on his own
• Jayson did not use sign language in a real communicative way
• Jayson only had a handful of signs and definitely didn't understand the use of non-concrete signs like "please"
• Jayson struggled to make eye contact with things and people he wanted
• Jayson did not have the occupational skills to hold onto things, put them in new places, reach for and grab things like the bib
• Jayson never put things IN or ON, only took things out and off
• Jayson could not get to a stand on his own
• Jayson could not hold things while taking steps 

To the common parent, I'm sure this is just a typical occurrence in your home.  The kids are hungry, so they raid the pantry.  Not in my world.  The collection and layering of skills for Jayson to get to this point is impressive.  This is a moment that will always stand out to me as a great symbol of hope.  Look at all of the skills Jayson mastered in just 4 months time to accomplish this task.  It's unbelievable. It's incredible.  It's amazing.  We are all so very blessed.

And this is just one of the few big milestones we've seen this week.  Little J had a rough week last week with a head wound infection that was very persistent, and hundreds of seizures that attacked his poor body and mind as a result of the infection.  They set him back quite a bit.  It has been so faith-building to see his come-back this week now that the seizures are back under control and the infection managed.  Here are a few other special moments that have touched my heart:

1. Jayson has learned that movies go into the DVD/VHS player.  He loves his movies.  So he now goes over to the tv, find the movie he wants, pulls it out of the case (DVD or VHS) and holds it in one hand while he sticks his other hand inside the VHS player.  If I'm not listening to his request, he will start flicking the little VHS door over and over until I respond.  It's adorable.
2. Just today, I was late getting Jayson on a feed this morning because we slept in (it was sleep we desperately needed).  So as I was preparing his feed and meds, he walked over to his high chair and started patting it loudly.  He then started fussing and freaking out.  As I looked at him he was veraciously signing "PLEASE" while touching the high chair.  He was hungry!  I put him in his chair and fed him while I hooked up his feed.  He was getting full with his oral feed and tube feeding happening at once, and it might have been giving him a belly ache.  He was acting uncomfortable and started signing, "All done".  I got him washed up and out of his chair.  He was on a feed so I followed him with his feeding backpack to wherever he was going.  He walked past his toys to the bedroom, turned the corner and walked right over to his bed, crawled in, pulled up his blanket and did his sign for "Binky" or pacifier, which is sticking his tongue out over and over.  He had a full belly and was ready for a nap.  It was amazing.
3. Monday Little J was being a typical toddler and refusing a nap because he would rather play. I tucked him in and left the room. I heard him giggling and babbling to himself, then it got quiet. I heard the pitter patter of his unstable feet and saw the shadow of the door being swung open all dramatic like, how he always does it. And he came toddling out of the bedroom with a grin on his face, so proud that he escaped. Until... Mom's half serious half teasing voice told him "Get back in bed Little Mister!" as I stood up to enforce my command. He turned around defeated, and willingly yet begrudgingly slowly toddled back to his bed, let out a grunt and hit his fists on the bed as he climbed in, displaying a small tantrum. And I tucked him back into bed and kissed that perfect spot above his nose and in between his eyes, the defining physical feature that makes him so unique. It happened over and over again.  I couldn't help but smile and giggle to myself as this was something I always hoped to experience.

As you can see, we are witnessing miracles on a daily basis and my heart is so full.  Our little boy is beyond amazing and is so determined to tackle every obstacle in his way.  I can't wait to see what the NEXT 4 months will bring, once all of the hardware is out of his head and he is free to progress without pain and put this whole distraction surgery behind him.  #expectamazing.