His neurology appt went well too...We discussed cerebral pasly but the doctor also wanted to do some really in depth metabolic testing to see what is going on (if anything) with Kenny's body. SO this week, I'll be taking him for blood work and a urine sample. We also discussed Kenny having another MRI. The last one he had was when he was only a year old. I'll be making the appt for that tomorrow. He'll have to be sedated for this though...so yeah...a little nervous. I am finally feeling good that we will have an answer to all of what we are noticing (the wide gain, curled in hands when walking/running, tongue sicking out all the time, drooling, non-verbal, etc...). I know that it IS a possibility that it is just "extreme prematurity", but what exactly IS "extreme prematurity"? Is it that, even thought he never had a brain bleed...his brain's connections short circuited because of how early he was? Is it that he is just THAT FAR developmentally delayed because he was so early? Even the doctors don't know. Could he have some chromosomal problem? sure. Could he have damage to his brain even though he never had a brain bleed? Yes. The doctors have told me yes because his head was so small (about the size of a small clementine orange), that while his brain was growing, the connections didn't connect right. Does it bother me? Oh my gosh yes! Still feeling some guilt about having my twins, "frick & frack" as I called them, early...it does bother me that I couldn't keep them inside of me...knowing that Nick died because of being so premature...and Kenny has had so many battles that he had and still has to face. So...yeah...it hurts deep in my heart. And this is why I am fighting so hard for my surviving twin. I will work hard and give him what he needs to succeed in this life...to stay as healthy as possible. Its my commitment to him.
On another note, does anyone else have this problem?
Does anyone else have a kid (or kids) that eat butter like an ice cream bar? UGH...yuck!
At lease I wont have to worry about Gina and constipation. joking!!!!Oh...and on laundry day...Kenny decided he was going to line up the baskets of clothes...oh...and the garbage can. LOLThe kids having fun in the empty basket....Also...Valentine's Day came and went...and well...lots and lots of valentines...
Kenny was having fun lining up the mini nerd candy boxes...I decided to decorate and surprise the kids (and hubby) for V-Day...the garland of hearts were valentines to each of my loves.The kids woke up and Sydnie yelled out, "its raining hearts"! SOOOO CUTE! I am so glad I did this.
I have to ask all my readers a favor. Could you all please say a special prayer for a dear friend of mine. A friend who has been facing a tough battle of her own. Her son, Zach is the same age as Kenny. He has MITO (mitochondrial disease). To make matters worse, he is now in the PICU on a vent. He is fighting for his life with a serious infection. PLEASE, I am asking you all, please pray for this little boy. Him and his family are very near and dear to me. He is such a little fighter. He has spent more time in the hospital than at home for the past 3 years. It breaks my heart for him and his parents and older brother. I pray that he can make it through this...he just has too. Hugs your children just a little bit tighter tonight and pray for healing and comfort for him and his family. Thank you very much.