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2.25.2013

BIG BOY BED.

A few weeks ago we decided to try Cole in a regular bed. It went surprisingly well! I think he was nervous so he stayed in his bed. This is something we NEVER thought he would adjust to...because of his rage. We still have his crib up, so when he is FREAKING OUT, we put him in his crib to calm down...if we put him on his bed, he just hops off and bangs his head on the ground. But this is a HUGE step for him. I honestly thought he would be 10 by the time he slept in a real bed...we were going to get a Twin Sized Special Needs Crib...but they cost more then both of our cars put together (which isn't hard to beat) but it was more money then we had. So we thought of making one this summer...but, HOPEFULLY his rage will get better so we won't need one. Not likely, since he is still on keppra and will be for a few more years.

He has DEFIANTLY gotten more comfortable...SO comfortable that during his nap,  he took the baby powder and sprayed it ALL over his room.  He doesn't know how to open drawers, but I left his drawer open & he took EVERYTHING out (except a shirt) and threw everything in his crib & put a ball in the drawer.  For some reason he freaked out while I was trying to clean it up, so he need
"crib time". 

2.17.2013

2.04.2013

COLE'S 1ST WORDS!?!

Cole has been LOVING bananas!  ...So much, that he eats 2 in a row. Last week, I asked him if he wanted another bite of banana...he looked in my eyes, then looked at the banana...& said "Nana".  I grabbed the banana, to make sure that's what he was REALLY referring to...I showed it to him & asked again "You want more banana?"...he looked at me again & shook his head YES!   I had to scoop my self off of the floor!!!  20 min. later I asked him if he wanted a drink of water...he shook his head YES again!!!

The other word is "Dadoo" aka "Thank You".  We aren't 100% sure that's what he is saying...BUT, when we give him a sip of water (which is what we do all day long...cuz this kid is thirsty!!!) we say "Your Welcome" after he gets a sip (yes, it's backward, but what ever we can do to get a reaction from him...we do it).  After we say "Your Welcome", he says "Dadoo"...it REALLY sounds like Thank You.

It's been about a week since he said "Nana"...and I've been trying REALLY hard to get him to say it again...but he hasn't.   Hearing him say it that one time, gave me that feeling of hope...that one day, we can have a conversation with Cole,  I'll even take him just telling me what he wants...even if he can't carry on a conversation.  Having a child with health problems & special needs is a CONSTANT emotional roller coaster.  I feel like I'm constantly "grieving".  I keep telling my self that one day I won't have that feeling...but  I think for me, it will be a  life time of grieving at every stage & every age.  And that's ok, because that's how I coupe with the frustration and sadness that comes with this job.  It's not easy, & seems to get harder the older he gets.  The thing that  always seems comfort me is when I just sit back & enjoy the simple things that he can do & the innocents of his spirit that is SO hard to find in this world...and DEFIANTLY his giggle & the way he teases all of us (including the dog!) that ALWAYS puts a smile on my face!