Luke's Tuberous Sclerosis Page
Kevin's Story - Living with Tuberous Sclerosis |
 Once upon a time there was a couple expecting their third child. On August 5, 1981, this family went to eat dinner at Casa Ole and the mother came back to the table and told the father they better call the doctor and tell him it was THE TIME for the little bundle of joy to makehis entrance into the world. At 10:02 p.m. we had an 8 lb. and 21 ½ inch little boy. We named him Kevin Adam Todd. I told his dad he looked just like his older brother Jeffery. We went home and had a normal life with 3 boys and mom and dad. When Kevin was about 4 mths old we noticed he was not doing things like the other boys were such as holding his head up and turning over and he looked like he was having hiccups all the time. That was Dec. 1981, Bill called our pediatrician and told him Kevin just wasn't acting right. I really did not want to believe anything anything was wrong with my baby. While I was pregnant I had thought of what if something was wrong with this baby and how would I feel. We had a EEG at Bayshore in January 82 and I remember the technician asking me if my other children were normal. Then I knew something was wrong and I cried. We saw Dr. Ian Butler sometime in January and he informed us that our baby had this seizure disorder Tuberous Sclerosis. We had residents in there looking at Kevin and I felt like he was on stage at the circus. We should not be put through that kind of misery not yet. The first thing I asked is what the heck is this and will he have a normal life and what is the life expectancy. Dr. Butler admitted Kevin at Herman Hospital on 2-22-82 ( Matthew's 2nd birthday) and we stayed there four days. They never did any test during the day only at night time when we it was time for bed. I really don't remember if they found out much or if they really knew that much about tuberous sclerosis. Kevin started out on Clonipine but had a reaction-he had a bad seizure-he got really stiff and his eyes rolled back and we were scared. The doctor took him off the medication. He stayed off medication until he was 18 mths old, still having seizures and ear infections. We had tubes put in his ears and they stayed in for 3 years. We went to a new clinic the Blue Bird Clinic pedi neurology- the doctor started Kevin on prednisone for 7 weeks and it did not help. They wanted to start him on ACTH but we were leaving for Florida for a two week vacation and I was not ready for anything new like that. While in Miami Kevin was 22 mths. and started walking. I was so excited that he accomplished that goal. In May 1984, we moved to a new house and a better school district. They tested Kevin to see what he needed. On October 1, 1984 he got on the bus for his first day of school Avondale House a school for autistic children. Back then that was the only place that Deer Park had to offer him. The school is by the summit and for my baby it was a long way from home. He learned a lot of self help skills and accomplished the toileting. It took about one year of our life to get this goalaccomplished but we did. I believe it were in the bathroom every 30 minutes and sat for that long. We would sing songs and have his hands on our throats and ours on his so he could feel the way we talked. You knew parents please don't give up on this because you have to have lots of love and PATIENCE to get it accomplished. As of today Kevin is 15 yrs. old and in the 10th grade. He still does not talk but he understands everything we tell him and who knows what else. These kids are very smart!!!!!! Kevin has 2 inclusion classes and loves being with the regular kids. He loves the girls and they like him. He was in a sewing class and he told the aide he was not going to sew because it was girl stuff. They put him in an Ag class and he seems to be happy with it. He was in a work program at the beginning of school and went to a cafeteria to fill sugar bowl and silverware etc. Kevin informed his teacher he did not want to work for free anymore and he sort of got fired. Now he picks up the attendance slips during 1st period and likes it. Kevin does facilitate for the teachers and his dad. He uses a paper keyboard with the alphabet and spells out words and answers yes and no. Kevin participates in Special Olympics and I try to go to all of his events. We have a lot of medals ( been in since 9 yrs. old). Last year at the Special Olympics banquet Kevin received his letter jacket. In closing our child has been fun to have and we love him very much. He loves to hang out with his older brothers. Bill and I have gone away over night and left Kevin with them and they tell us he good for them. Jeffery(20) and Matthew (17) are very protective of their little brother and always have since they were very little. I am very proud of my boys and feel lucky to have them in my life. In a few years Kevin will graduate from high school and then we have to make a decision on where to place him or whatever, but I will deal with that later. I forgot to mention he is on Tegretal and has been for 11 years. He still has seizures when he does not feel good. Kevin has been an experience for this family and learning to cope with a special child is not always easy-but who said parenting is too. I guess what I'm trying to say I would not trade this child for anything or anyone else child because he is a joy most of the time. I think if we had known this child was special when I was pregnant-it would not have been aborted or given up. He was meant to be here fora reason and we are doing the best that we can and to show him a good life and enjoy what we have as a FAMILY and just take it one day at a time and don't waste it or worry about it. Kevin is still non-verbal, happy, beautiful child with lots of love. He still has ear infections, loves any kind of music, tapes, videos and movies. He loves doing family things vacations, outings, eating out and anything we do. His favorite thing is being OUTSIDE. Thank you for letting me share this . Cathy Todd Houston Area Rep. If you wish to reply to this, please do so with Cathy Todd, Kevin's Mother, you can e-mail her at cathyrtodd@aol.com This home page is intended to be a family resource for families affected by Tuberous Sclerosis. It does not intend to constitute medical advise. Viewers are warned not to take any action with regard to medical treatment relying on the information provided on this page without first consulting the patient's physician.
Deanna Runyan-Wall E-mail address: deannadawn@lukets.org Last updated: April 5, 2008 Created: December 5, 1996 |
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LUKE'S Tuberous Sclerosis LIFE STORY
A MOTHER'S JOURNAL of Accepting Tuberous Sclerosis
PRACTICAL FAMILY RESOURCES |
