Had another hospital visit, but glad to be home now...

A couple of days ago, Tommaso continued to have very short clusters and it made us worried. Within an hour, he was seizing. It was a partial seizure then it stopped and became a full body episode. We used A LOT of medication to get it to stop. We called 911. It stopped at the 15 minute mark, but we went to the ER anyway.

He hasn't been tolerating the new baseline drug that he's been given called, Valproic Acid or Valrpoate. He's been vomiting a lot lately (projectile, 2-4 times a day). He's had nausea we suspect it's a side effect of the Valproate.

We spent the last 2 days in hospital. He had another long seizure last night where his eyes were deviated and his eye brows were twitching for 12 minutes before they gave him Paraldehyde. He stopped seizing and today he had a remarkable day. 2 very short arm jerks and a vomit this evening, but he looks great despite everything.

I'm still very hopeful that he will get better. Sick Kids Hospital put him on an emergency list for the Ketogenic Diet. They only take 1 patient a months. Only patients with refractory and challenging epilepsy get a spot. It's a very intensive diet mainly of fat and protein and it's very strict (minute traces of something not listed in the diet can cause seizures). The success rate for controlling seizures on this diet is amazing. There has only been 1 person in the last 5 years that didn't do well on it, so I'm praying for a miracle.

Speaking of miracles, our friends, family and the loving staff at Sick Kids have been a God-send. I'd like to acknowledge my sisters, Katie and Betsy for spending 4 days with me. Katie, I can't believe you came all the way from Kelowna to show your support. Betsy, you are ALWAYS there and we love you both! So does Stefano, by the way. Julie and Frank, that evening you spent dinner with us, it really meant a lot to us. We need a lot of that. Franca, Anthony and family - It was a nice afternoon. Lucas and Valerie thanks for keeping Stefano Happy. Tara, I love your surprise visits. They are so meaningful - friends for life! Anne Marie and Natina, we love you!!! Paty, I'm so happy that you are in my life. I do not exaggerrate when I say you give yourself to the people! Kim, I'm so sorry that he vomitted. You're a true friend when you'll help clean another child's vomit! Love you! Claudia, Gina and Diana - you inspire me. I've learned a lot from your understanding and I know how much you all love my kids. Thank you for your support and kindness. Mom and Dad, we would not be able to survive without your support and unconditional love. You inspire us to be great parents and I hope that we can only live to be just like you - loving and caring. We are so lucky. If I haven't mentioned you, give me some time. I'll remember and I'll either call you or mention it again later.

Thanks for you love and support,
Celestine