Sunday, May 29, 2011

Tired and exhausted from "special/chronically ill needs".

Sitting here chillin after a very trying morning.

Kenny is sound asleep after me having to hold him from screaming, crying, banging his head and pretty much not caring if he hurts himself. No, it wasn't a typical temper tantrum that he was never is. They're not caused by anything in particular...they just happen. Usually from either being over stimulated or when his routine gets interrupted by something that doesn't usually happen...He has Autism...and these tantrums are autism meltdowns. We got the diagnosis a few weeks ago along with a few other things. The day finally came a few weeks ago...the queasiness that I've had for weeks prior. Knowing that there was something they saw on the MRI and us wanting the Neurologist to explain everything...the time finally came. The doctor was very thorough with everything he was telling us. He told us what we already knew..that Kenny does in fact, have microcephaly. He also has a very small cerebellum.

He went on to explain, that, because his cerebellum is so small, his balance, muscles, speech, feeding issues...basically...the input to output process is affected...all of this is affected. On top of the small cerebellum, he also has an arachnoid cyst (which is basically filling the area where the regular sized cerebellum should be...just picture an area where there should be a baseball...and instead, there was a golf ball with fluid all around it...yep, that would be pretty much what is going on inside Kenny's brain. The doctors are keeping an eye on everything and of course he has to go back in a month. What scares me the most is the fact that he didn't have this cyst on the first MRI but then it showed up on this latest one. We are also dealing with the fact that he does have mild Cerebral Palsy (which I already knew).

We are also facing the issue with his immune system and the genetics team found something with 17p13. So we will be going to his Immunologist this coming week and the Genetics specialist in the near future.

It just seems like so much for such a little guy. Right now, he is sitting on me calmed down. I am thinking about getting him a weighted vest or something. I feel like I am going through this completely blind. Like I'm forgetting to do something or that I'm overlooking something so simple. He's in speech therapy, Occupational therapy and physical therapy, several meds a day for different issues...from epilepsy, slow emptying stomach (GERD), lung meds for his lungs, feeding tube for his feeding issues...what more...what else? Do we get him an Ipad with all of its apps that I've heard nothing but great things about? I dont know. I wish I did know. Its one diagnosis after another when I just wanted to have healthy twins. I just want him to be a normal, healthy kid. I dont want him to be this way. I know he's happy and doesnt know any better...but I do. And I'm sad for him at times...but then, on the other hand, I am so proud of him and what he has accomplished.

In a world so quick to judge, we have been hit with such a blanket of issues. All of which affects everyone in our family in many different ways. I am so lucky to have a great support system of family and friends. I am blessed to have an amazing husband who has walked the same walk as me...all the while...hold my hand. We've cried, laughed and become closer than ever because of...well...this life that was given to us. What has happened and what will happen...we will conquer together.

...but boy could we use a little breather.

1 comment:

jules said...

I know the feeling. My son being a preemie and losing his twin devastated us. My son is walking but I don't know what obstacles lie ahead with his development.

My daughter was diagnosed with and Arachnoid cyst too. I thought to myself, "Haven't I been through enough already?" Nope. My daughter had to get surgery last week on her cyst and she is doing well. Just another obstacle for us again. She is asymptomatic at this time. But I am so sick of the unknown.

I will say a prayer for you and your son.