Sunday, October 16, 2016

Preschool and Lots of Updates!

Apologies right from the get-go of how little I have posted.  The lack of posts have been from the amount of successes we have been busy celebrating with Cohen.   It's been a year since we have moved to California and the amount of leaps and bounds this little man has made is truly incredible and inspiring.

A year ago he had just a few words, but mostly in sign.  Now he is saying lots of two-word phrases, often verbally but sometimes including signs.  He can identify most letters and sounds, and even plays Scrabble Junior!  He knows most of his colors, is starting to "mumble" count, and is saying more spontaneous words than ever before.  

A year ago he was crawling on the floor eager to walk, but lacked the core stability to walk.  Now he is practically running, still with the occasional face plants, but seeing him upright is amazing. He has mastered hitting the ball off the tee and has found a love for baseball.  It's great exercise to improve the rotation in his trunk and his tone.  

A year ago he was on 4 feeds "tube meals"/day that completely supplied his nutritional intake.  He would "taste" foods, but besides a few sips of milk or water/day we were thankful for his feeding tube because it has kept Cohen alive. Today, he has finally overcome his fear to swallow foods!  He still is on 4 feeds/day but we are starting the weaning process!!  For those of you that aren't familiar with feeding tubes, there's a slow process of teaching and learning to eat full caloric intake before the feeding tube can be removed.  A little starvation and an additional medicine that helps stimulate an appetite, Periactin, help him learn that food is good and helps you feel full.  This is a feeling Cohen has never really experienced before and it's amazing watching him open his mouth for food that he once saw as the enemy.  He enjoys eating things like crackers, chocolate milk, french fries, milkshakes, cubes of cheese and avocado, and many others.  On days when he "shows up to eat" he is able to eat 100-150calories/980 calories he needs to grow.  This seems minimal, but coming from the days of sucking on foods and spitting out, this is a huge feat!  He is still far from where he needs to be before he can be tube-free, but it's the little progress we see each day that is uplifting.  Although he has his good days and bad days, it's amazing to think that 3 years ago he was on a feeding pump 15 hours/day.  Just today he ate an entire Yoplait Gogurt!  It's the little things.  This success is by far my most happy moment because for once I can see the light at the end of the tunnel.  

Cohen turns 3 in just a little over a month and the transition from his home therapy program to a preschool program is happening!  Cohen will likely be attending two different preschools.  The first is a parent participation preschool in our neighborhood that for the most part has typical and healthy children that attend along with a great ratio of parent volunteers.  He is completely immersed in the program and has no restrictions on what he can or cannot do.  He is able to see and hear great models of language that should only help to improve his speech.  His favorite thing to do at school is play t-ball, of course.  

He is learning to stay seated during circle time but that's still a bit of a struggle, unless of course it's sharing time.  He recently had the chance to share something from home and we decided to take "Emily" a toy train.  We practiced all morning on our drive into school as I signed green and train in my rear view mirror and he would practice saying "een" for green and "oooh oooh" for choo choo.  When it was his turn to share, I was convinced he would either refuse to go up to the chair or need me to be there for support. But he didn't need me.  I saw something in him that told me, he's going to be ok.  He may be behind, but he follows his own beat and his own path.  He sat up proudly in the chair and the teacher asked him what he brought for sharing.  "ahhhhh," he responded. This is a standard answer of his at first, which usually prompts us to redirect him so he can try to say the proper word.  He looked at me and I did just what I had done in the car on the way in.  By giving him the green and train sign he was able to say "een oooh oohhh."  The teacher then asked what his train's name was and he again gazed in my direction.  "Emily," I said and he responded to the teacher, "Em-eee."  Tears flooded my eyes and it took all of me to push them back in.  My biggest fear for Cohen at this point in his life is how he would do being integrated into a classroom with typical children and how he would be successful when language is such a barrier for him right now.  He showed me that I don't need to worry anymore about him.  He will be fine.  It's not going to be easy, it will be an uphill battle at times.  But it will be a journey that he will take at his pace and his stride.