Saturday, March 17, 2012

a Lenten sacrifice and Kenny update..

So I made it through week 4 of my Lenten sacrifice of giving rather than giving up...I've been making cupcakes and bakery for our church/ptu fish fry that we have every Friday! Tony, the kids and I make it our mission to help and have fun doing it!
I find it very relaxing and it's a time where I can be me rather than a mom, caregiver to a very demanding Child, where I can escape in my own little world that I call...the kitchen! Sure, the laundry has paid for it as it sits piling up until I can get to putting it away...but theres a time for everything! heck, the older kids are old enough to be doing laundry as a chore...Iay just go on strike ;)
last week was a week of doctor appts that were supposed to be routine.they ended up doing an EKG on Kenny and getting several vials of blood from him. From what his doctor said to me, she felt that he just didn't look right and all of the glands in his neck all he way down to his collarbone were swollen. I know it's not that much if a deal in normal healthy kids, but it's always something more with Kenny. We wont find out the blood test results until Monday or Tuesday. His EKG came back as showing an arrhythmia of some sort. his doctor has been so great in going with her gut instinct on issues with Kenny. She is consulting a cartiologist at the finding. this point my mind is racing and I just don't know what to think! I got home and called his genetics specialist who, way back when, made comment that the long arm of chomosome 17p13 was slightly longer. Stupid me goes and googles this...most of anything that deals with chromosome 17 involves cancer! I metioned this to his doc and really got no anwers other than the fact that this abnormality could not be nothing at could be just his makeup. so basically I am running around like a chicken without a head not knowing what is going on with my son. His neurologist, 6 months ago told me that everything he's dealing with is due to extreme prematurity and not many 23 weekers survive, so they don't really know the full effects on them as they get older. So yeah, Kenny is now a test guinea pig for the medical field. Just last week, I was told by the same doctor that my son definitely has some sort of syndrome. WHAT???!
how dare they lable a child by his looks and actions when they don't even know of the reprocussions of being born at 23 weeks?!
So now, on top of his developmental delay (mild mental retardation), hearing loss, eye issues, chronic lung disease, epilepsy, feeding issues/tube, being non verbal, having low muscle tone and having some autistic issues...I now have to worry about heart issues and possibly cancer down the line. How much more can a mommy take? I look at his beautiful smile, his love of life and his ability to make friends even without having to say anything to them, and I wonder why! He has a perfect little soul who doesn't deserve to have anything bad happen to him!
If there is anything that this whole "being a mommy to a special needs child" brings to me is...well a major amount of stress...but more importantly, never take a moment in time for granted. I can't change what will be, but I will be there fighting and loving Kenny and the rest of my beautiful kids and hubby!


Mommy said...

Michele, Daddy and I love you so much. You are the Strongest and the Best Daughter A Mom could have. I know you are going thru a Real bad time, but you have a Heart and Mind I do not see very often with a Mommy of 7 children and with a child like our Kenny.
God Will Bless you and Always will. You are Beautiful Person. I am so glad God gave you and Diane to us. Mommy

Renee said...

You Michele,Tony and children, are all amazing to me..I take my grandson to speech and pre-school for developmental delays..there I see children in wheelchairs, walkers and crutches..there are kids with down syndrome and many other "delays" What an eye opener. What I noticed were the smiles..the innocent precious smiles of learning and of just "being" Many of us who have had children never see this! The staff and teachers see abilities and possibilities..and so do I...I love you sis! our entire family and anyone who knows the "Kenster" are blessed..His smile is contagious and his triumphs are celebrated! He is perfectly created by God .. our prayers are always with and for you all ..