Will he ever?

We are completely off the Trileptol today. Just waiting for Dr. Frost's office to call me back and let me know what the next step is. I was really worried that we were going to have a seizure this weekend. We were out of town visiting family AGAIN! Friday night we went to see my brother and his family at their campsite in Yankton, SD. My nieces and nephew kept asking if the kids could stay the night with them. I guess I had never thought about Jayen doing sleepovers before. I immediately froze. I think his life flashed before my eyes. I couldn't stop playing scenarios in my head. What would happen if he spent the night and had a seizure in the morning? If I don't let him stay will he be missing out on these crucial moments with his cousins? Will he ever be able to go to a sleep over? Will any other parents ever be willing to have him over knowing there is a possibility of a seizure in the morning? That is a huge responisibility.
I hope his life is filled with wonderful memories of "normal" kid activities. I hope and pray that we can get these damn things under control again.

Three dreadful years

Three years ago today we learned our son's fate. Every day for three years my heart has been breaking. We are still left with so many unknowns. Infantile Spasms will never have my son, my son had infantile spasms. Stay strong Jayen Hochstein. Some day we will beat these seizures!

Finally has an ID

Jayen finally has a medical ID! We have been tossing around the idea of getting him one for about three years now. I guess it was finally time!

We wanted something that would be cool enough that he would want to wear it, but resistant enough for our holy terror. It is a velcro strap with a pocket on the inside. In the pocket there is a waterproof, pull out tag that we could add all his information to.

 

So far he has done a pretty good job of keeping it on. We had Dalan wear his slap bracelet so Jayen thought he was being just as cool as Dalan. I guess he gives in to peer pressure. We might have to work on that one, but in this case was to our advantage ;)

GO BIG RED and Go away seizures!

Woke up this morning at the hotel to Jayen having a seizure.We were in Lincoln to watch the Husker Red and White Game.  I was so scared we were going to have to call the ambulance to the hotel. Thankfully it was only about 5-6 minutes long so no second diastat or ambulance was required. What are we going to do? I just want him to have a normal life. I want to not wake up and stare at him without blinking just to watch and make sure that he isn't going to have another seizure.

decreasing Trileptol

DUM DUM DUM, ANOTHER ONE BITES THE DUST! Well tried and failed at another medicine. Trileptol not working. Decreasing this one then on to another.