Cameron's story (my oldest son's stroke & epilepsy details)

Cameron was born Nov 27th,2005 at 40 wks gestation. At birth the doctors said he was fine and pretty quickly I relaized he wasn't. He wouldn't sleep more then 30 mins at a time and he wouldn't eat more then an oz here and there. He kept making odd movements where he would move his lil fists back and forth quickly toward his chest over and over then it would stop for awhile and then happen again. I called the doctor and nurse in to see it several times but they never saw it til the day after he was born. So 4 am 16 hrs after being born a nurse finally saw him do what I had been describing and it was diagnosed then that he had been seizing the whole time!! I was so upset and scared. He was life flighted to Children's Mercy where we found out he had a masive stroke in uetero due to blod clots in both carotoid arteries. It wasn't caught in ultrasounds b/c he had the stroke just about a week before I had him.

Cam spent 2 weeks in the NICU where he was started on seizure meds. He had a feeding tube for awhile and even a few sleep apnea spells. The doctors told us if he lived it would be a miracle and that he would never walk, talk, or recognize anyone if he did make it past 48 hrs old. I was so sad and so heartbroken. The thought of him dying at just a few days old or being incapable of a "normal" life made me so depressed. I was also a 1st time mom and only 20 yrs old. After a few days of the seizure med he stopped seizing and got off the oxygen about a week later. He also started to nipple feed and the tube was taken out after about a wk. He came home just before Christmas 2005.

After that he was pretty much a regular newborn and didn't seize again until the neuro tried to wean him at 6 months. He started seizing again after only about a day into weaning so we went back to the children's hospital and he had an EEG and EKG. The neuro started him on Trileptil to help control the seizures. He was also diagnosed with infantile spasms at the time. The neuro prescribed ACTH injections for the spasms and I had to administer them every day for 2 months. The shot stopped the spasms and we were then swithced to Topmax which the neuro thought was better for a long term solution to the seizuers. Cameron is now 5 and has been seizure free for about 4 years!! I'm so proud of him and all that he has made it through.

He started early childhood pre school at age 3 so he could do physical therapy, occupational therapy &speech. He has become so expressive since starting pre school. His speech has blossomed and he is in the average range on his speech compared to other 5 yrs olds. He continues to work on his left sided weakness in therapy since he has limited left hand usage.

He is now getting ready for kindergarten this fall. I'm so nervous about him starting elementary school! I want so much for him to just be treated like a normal little boy! I don't know if he gets to be in the kindergarten class full time or part time in class and part time special education but I'm so emotional about it. I don't know if anyone else feels this way but I hate the word SPECIAL! I think so many ppl say it as an insult or to make fun of people and I just want my son to be the best he can be and to be treated with dignity and respect. The older he is and more aware he is I worry about how the world will treat him and it breaks my heart.

He is a sweet, smart, onry little miracle boy and I love him so so much!! I guess I don't see my son as special needs. He has always been and always will be a normal little boy to me and I see no reason to make him think he has any limitations. I am in no way ashamed of him, I guess it's just hard for me to accept why this happened to him or why it happens to any kid at all. I would give my life for my son to be able to live a full and happy life without the cruelness of others. And now with Elementary school approaching I realize I may need to reach out to others in order to make his transition as easy as possible.