Tuesday, May 2, 2017

Happy 10th Birthday!

Well, here we are...10 years old. We made it 10 years little buddy!
 
 I am so proud of how much Kenny has grown, learned and excelled beyond expectations. He is such a remarkable little man.
  He has filled our lives with tons of love and also a lot of irritation (doesn't all kids?). Oh wait...lets not forget some panic filled moments when he gets sick or has a seizure. 
He sure hasn't changed much from the NICU days! hahaha. 

This little boy may not make much sense to many people when they talk to him (thank you apraxia of speech)...but man...does he have a lot to say! He loves to take walks, watch/play video games (simple), loves lining up his Hot Wheels, his old school Fisher Price Little People (circa 1970's). 
Loves his baby dolls, stuffed dogs and Build A Bears. He gathers everything and anything, loves to write his name...on everything, and can count to 10 with no problem!

This little boy, whom we almost lost on several occasions has filled our home with so much love and craziness. He may not be perfect and we take his health day to day...but I am so blessed to have this little fighter as my son!

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As you all know, this week is a painful one for me...I relive it yearly...a nightmare that even 10 years in, still haunts me and hurts by heart like it just happened. So...I will smile, help others, laugh, give back and keep busy in honor of my twins. In honor of myself that I tried my hardest to keep them inside of me...safe and healthy...yet my own body failed me.
 10 years ago...a 23 weeker had a less than 10% chance of surviving. I remember how scared I was when I saw that I was in labor. I was disappointed in myself...why did my body have to fail me...fail my twin boys. I was barely showing! I wanted to get stretchmarks, I wanted to get huge and complain about swelling and weight gain...but my body had other plans. God had other plans.

So today...I will celebrate the birth of my twin boys...Kenny and Nick. My true little miracles. Every year, I try to be so incredibly happy...like I do with all the other kids birthdays...I mean...It IS a special day that should be celebrated. Yet...I always seem to have this battle in my head over being happy and sad at the same time. Then guilt plays a roll in it along with anger.
How can God take one of my children? I have realized that we are just here for a short time...we are Gods children...yet...to carry this burden...this cross...for a lifetime is a rough one. 

Not only am I dealing with my boys early birth...but also the day...2 days later...that I lost one.
I can tell you exactly the times. 3:00...to 6:30. It took 3.5 hours to try to save my Nick...

And 10 years later...within these 10 years, our family has had scary moments with Kenny...along with a TON of extremely happy ones!
 He loves his siblings so very much...and his smile is soooooo amazingly contagious! He made merit roll at school...which...wow is all I can say. He has an IEP and one of the best groups of teachers/aides/school ever! 

His doctors are top as well. 
So, where are we with Kenny....lets see...he still tries to talk...most of it is gibberish (think of when a stroke victim tries to talk...and nothing makes sense. This is how Kenny talks. He knows what he is saying...but the words are just not there. Now...don't get me wrong, he will talk your ear off if given the chance! He broke his hearing aides, so he has been without them for a few months now...and boy oh boy...it shows...ugh.
He still is OCD about...well...everything. From lining his cars up, to the same routine before school and bedtime. He is potty trained but I still have to help him and wipe him...and he still wears a pull up at night (tons of accidents...but we're working on it). 
He is still using his feeding tube daily...and still only picks at his food.
He has had 3 seizures since October...which is a little concerning. 
 The doctor upped his meds for this reason.
He loves school and loves playing school here at home with his sisters...he always wants to do and learn. He is such the feisty fighter that made him survive! I am in awe of him.

On the other hand...I am tired. I am exhausted. 
He still has massive meltdowns...several times a day...thanks to being on the autism spectrum. 
He doesn't know danger. He will touch something hot, walk in front of cars, cut anything and everything with scissors...yay for learning how to use them...but boo for now cutting everything! LOL

He demands attention 23/7...in that time, its a struggle trying to understand what he wants (some of the time), he repeats himself about 100 times in an hour, he wont eat a whole lot of things (yep...it is still a huge struggle), and its just a lot of work and worry.
I get worried when he gets sick, for fear of seizures. I fear his chronic lung disease. I fear his brain issues, I fear his chromosome abnormality because it is one that can cause cancer in him. I fear...another death of a child.
Yet...
This life has taught me to never take a moment or people for granted.
You never know what is going to happen tomorrow.
Through all of the hard times there is love and laughter (oh...and wine)...
 
God is Good
Our family is truly blessed... 

Happy 10th Birthday to my twins
Kenny and Nick

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