Thursday, August 17, 2017

Prayers and thoughts for our Kenster


I've been trying to figure out just the right words to say as I type out this blog post.
...and between my anxiety and reality, I am lost...

Kenny has been amazing...simply A.MAZ.ING. He loved going to Camp Cheerful day camp this summer...he made tons of friends and was busy, busy, busy daily. Coming home was another issue. lol. He started up with meltdowns in the car as soon as we pulled out of the camp driveway. Not horrible ones, but ones that can drive a mom up a wall...I fluffed it off to being over stimulated all day at camp. His meltdowns are getting just a little bit more frequent. And as any parent knows, trying to stay calm, cool and collected is hard to do when your child is screaming like a crazy, hitting walls & windows, stripping down to nothing at times, and just inconsolable. We know he is on the spectrum, but we are in the process of getting the actual diagnosis...which takes forever...his appt is not until January...yes, the waiting list is forever.
We are also dealing with this lovely state of Ohio and how they have transitioned kids on straight medicaid (because of chronic illness and handicap) to a managed care plan. We are now struggling with having to change certain specialists, make sure he is able to get his meds (which they feel that generic brand is just as good...and it really isn't), tube supplies and diaper service. On top of having to go through many channels to be able to get approved for certain tests and procedures...where as straight medicaid, we and his doctors were able to order something and it happen. So...we now wait and hope that his waiver comes through...which is highly unlikely. He will age out before that happens. I have had many fights with many people about the health care and coverage of kids with medical issues...chronic.medical.issues...but this is a whole other post topic.
anyhow...
This brings me to the events leading up to today. Over the summer, Kenny went back to his audiologist for his yearly hearing testing and to put an order in for his new hearing aids...since he lost one and broke one...it was time to replace them.It wasn't the audiologist that has been with him since birth, but one that was filling in for her. After the testing, she mentioned to me that his hearing is worse. That the left is far worse than previously and that she would let his audiologist know.
OK...so, maybe she tested him wrong. Maybe because she was a new person in his testing, that she didnt know him and the way he operated...I dunno...at that point, I was hopeful...I mean...keeping positive is what I have reprogrammed my brain into thinking...I have to!

We then had his comprehensive care appt. a few days later. This is the doctor appt. where all of his specialists see him. It is about a 3 hour appointment...and it is well worth the time. Each doctor comes in and then they all work together to come up with a game plan. Well, his neurologist was his very upbeat, carefree self...doesn't make a whole lot of worry for anyone...which is wonderful for me as a mom....again...keeping up with a positive attitude is key. I wasn't too worried when he mentioned that he recommends PT/OT to start up again. That Kenny has tight and loose muscles. I mentioned to him that I was slightly concerned with his left side. His muscles tend to be a little tighter but yet weeker on that side. He tried to open his fingers on the left, and noticed that the thumb and forefinger was very tight, but the wrist was loose. His ability to follow moving directions were a little off...for instance, a jumping jack...yeah, he cant do those (Que in mommy guilt complex #1). He can input what someone wants from him but to actually do it...to output, is very difficult...he also uses his tongue when he is very involved with a task, which is another big red flag.

Last week, his new hearing aids came in. He picked out fun colors...well...actually, his favorite colors of purple, orange and red. His audiologist wanted to retest him...for her own benefit...just to make sure the results from the last test was right.
Unfortunately...they were.
His left ear is almost at the profound loss level and his right ear is severe. This raises flags for us because his hearing loss has not changed since he was a few years old. My child went all summer without hearing aids...unable to hear. (Que in mommy guilt complex #2)! No wonder why he was such a crab. The audiologist voiced her concern to me about it and that she was going to let his doctors (more so, his neurologist) know. At this point, start panic mode...mommy style.
So, this is where we are at. Tomorrow...Friday the 18th. We will be seeing Kenny's Neurologist. There are concerns from everyone that 1)his muscle tone is off. 2)his eyes are crossing again. 3)his hearing is far worse. 4)he is more agitated than usual (a lot more meltdowns) 5)all of those breakthrough seizures which we attributed to the use of generic brands, might not be from that at all.
 ...all of this leads everyone to feel that his brain issues are starting to progress. This is what we did NOT WANT TO HAPPEN.

So please keep him in your thoughts and prayers. I could you a prayer or two myself...because...I cant fathom the thought of burying another child...I would rather die before doing that again...its.that.bad.





Saturday, May 27, 2017

MBC Roots, GEORGE MICHAEL - THE GRAVE



God bless those that gave their lives for us. Let us not forget those brave men and women on this Memorial Day. George Michael sang this perfectly...with passion and meaning...

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