Hello- My name is Tracie Christianson, and I'd like to introduce you to my son Saje Cloud,  he is 6 years old.

Saje was diagnosed at 7 months old as having Epilepsy. He had a rare seizure disorder which only shows up in infants called Infantile Spasms or West Syndrome. This is where our lives as we knew it forever changed. Thankfully we did get rid of the Infantile Spasms, but that seizure disorder turned into the seizure disorder that Saje will have for the rest of his life.

At that time we knew that he was developmentally delayed and that he had spasticity, we had to discover on our own by doing our own research that he has Cerebral Palsy. Our neurologist didn't want to come right out and tell us that was his diagnosis because of his fear of how we would react to that label. I guess that was our first lifes lesson, when dealing with a child as complex as Saje's needs are, that we have to learn things the hard way. By having to experience things first and then learning from it.

To sum it up for now I will just say that in the past 6 years many challenges were presented to us. In addition to having epilepsy and quadrapalegia spasticity, Saje-Man also has global developmental delay. He is fed via G-J Tube currently. He has always had a oral fixation and chooses not to eat anything orally but constantly needs oral stimulation. He is also non verbal, but he sure lets us know when he's not okay with something. He has learned to roll over though in the past year.(yeah!)

We had tried the Ketogenic Diet in the past for seizure control but it was not successful. So, finally one year ago, December of 2003 Saje had a VNS or Vagal Nerve Stimulator implanted. And has it ever made all the difference in the world, his whole quality of life has improved drastically. Seizures are definetely more controlled to the point that we are currently able to ween him off of the phenobarbital he's had to be on since he was 9 months old. Of course once Saje's seizures are under control, his body, mind and spirit can concentrate on developing. Also one of the side effects of the VNS is that children who have it are always in a good mood. What a wonderful side effect to see in a little boy who has lived through so much and is still thriving!  Saje is always happy and always smiling. He is also more vocal now than he ever has been.
On that note, I will close. Thank you for listening and I hope to be in touch real soon.
                                                    Tracie







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