Anna & Kanessa's Story
Hi, my name is Anna and my family lives in Clay Co. NC. That little tip in the SW corner! I have 5 children; 3 are grown, married with children and the other two are my little sweethearts Kanessa, 11 years old and Viola, 8 yrs. old. My pregnancy with Kanessa was a hard one for her. She moved a lot but stayed in the same position the entire pregnancy. At 8 months doctors did what is called an Internal Version and manually turned her into position. She stayed that way, but wasn't ready to be born yet! The night of her birth my husband and I were stuck on top of a mountain in the ice! I dreaded telling him that I was in labor, but finally had no choice. Well we finally got out of that situation and he flew to the hospital. My Doctor was planning on inducing my labor the next day because she was already over a week past due! He was not very happy to be called in because he was on a date! It was not a very happy scenario at all. He was so mad at me he made me give birth on one of the old gurney type beds instead of the nice birthing beds! Did not do much for my back labor and I kept trying to sit up. She had apgar of 0 and then 4. She aspirated on meconium and had to be incubated and stayed in an oxygen tent. She was fine by the morning and was with me in my room. (By the way - as my Doctor was finishing up with the afterbirth, etc. I told him to get done with what he was doing and then to stay the #$** away from me! and I got up off that gurney and walked to sit next to my baby until she went with me to my room). Anyway besides a dislocated right hip and her left hip socket never formed, there did not appear to be anything else wrong! She became a Shriner's baby for the next 6 years. She was delayed in crawling and walking, but only because she had to wear a harness. But she would pull and scoot herself everywhere! Her speech was developmentally where she should be too. At about 24 months old I started noticing that she was not as verbal as she should be. Then came the night she had her first seizure. It was the most traumatizing night of my life. After that she stopped playing with her toys, all she wanted to do was pour water in cups and continuously fold paper and she would only sleep no more than 4 hours out of 24! At first she was only diagnosed as severely developmentally delayed and epileptic. When she became school age she was finally diagnosed as autistic. Never had I heard about microcephaly from any of her doctors or therapists. I read it in a report from a genetic doctor. It said that she had microcephaly and they had been monitoring her from birth! And I just read this report last year! So I questioned her neurologist about it and all he could say is that her brain will not grow anymore than it has therefore her head will not grow either! Oh and that I have done a wonderful job with her. We went to Florida for 6 months thinking it would be better for her. The school was fantastic and I thought very highly of the teachers and specialists there. Problem was she was totally with all other kids just like her just different issues. This became the new her though--screaming, kicking constantly. The new neurologist in Tampa swore she had Aspergers. Since I already have her blood stored for any testing he ordered the test and it came back negative. So did Rhett syndrome and lots of others. I don't even care anymore if what is wrong with her has a name. All I care about is her quality of life and how much joy she brings me. It is hard to have had a 2 year old for 9 years now -- I get exhausted! I have no friends really because everything has to be so routine everyday. I too have not slept for fear that something would happen. Now if I do sleep its with a baby monitor right at my ear! For the last 9 years I thought I lived at the hospital because we were there so much. Today Kanessa is still not verbal, not potty trained and has tons of behavioral problems. She has to take a total of 20 pills a day to keep her seizures at bay, but she is also so sweet and has a priceless smile and I will continue loving her and caring for her as long as the good Lord lets me have this privilege. Most of the time I feel like I am literally walking on egg shells! Yes she has almost left me dozens of times, but God always reminds me of my promise the night she had her first seizure. That I will love her and protect her as long as He will let me.
