Lets Put Our Brains Together and Support Brain Research

I thought today was going to be bad but Jace ended up only having 4 episodes today. It's not perfect but it beats 9-11 episodes. I pray that tomorrow he wakes up with no episodes and continues forever without any! What a blessing that would be huh?

Speaking of blessings, Seizure Tracker has been nothing but amazing in this journey! I am able to get on my phone and update Jace's tracker when he has an episode. Its simple and WAY easy to use.

The website was designed by parent's that had a TSC child and they made a short movie about it, which won awards at the 2010 Neuro Film Festival. Here is the video if you would like to see and lets put our brains together and support brain research:

Tracking Evan: A Story of Caring By The Numbers (TSA) from Peter von Elling on Vimeo.

Tomorrow is the routine EEG that we hope will be better than the last. Oh and we learned that the EEG on Thursday was worse then the EEG on Tuesday. Grrrr......that's ok though - ultimately it was better than the 23 hour one on Aug. 29th.

I have been kind of researching and asking other TSC parents what they thought about the surgery, the surgeon that is here in Houston or traveling out of state to get THE best. I know it is not something we are for sure going to do but I would rather be prepared than to be caught off guard with the decision of going on with a brain surgery. I mean it takes extreme faith in a person's career to put the life of your child in their hands! I am probably getting way ahead of  myself with this.

Jace stopped with his crankiness around dinner time. He started to talk and talk and talk all through dinner! LOL it was so nice to hear him just talking up a storm to his spaghetti. He was also probably happy that they removed the IV site from his arm. They put it in in case they had to give him emergency meds for a seizure lasting longer than 5 mins. We never used it and never had a seizure CLOSE to 5 minutes they agreed to take it out since it was leaking at the insertion site. There is another one we can use rectally if he did need an emergency medication. They also said during the day we could take him off the heart rate, respiratory rate and O2 monitors. We will spot check him and only leave him hooked up at night. Woohoo! This means feeling less guilty about taking him off the machine to go play and no more getting tangled up in wires! That can put anyone in a bad mood!

I went and got out of the hospital today for about 3 hours. JB and I went to Buffalo Wild Wings to watch the Texans game and eat lunch with Nathan, Kristen and Stinkin' Lincoln! :)

It was nice to get out, enjoy the nice weather and not think about medical stuff for a few hours. My mom stayed at the hospital with Jace when we went. A BIG thanks to her! She has done above and beyond to help us out! After eating JB was headed home so I had him drop me off at the Starbucks down the street from the hospital. I got myself a nice caffeinated beverage and walked back to the hospital. I LOVE this weather. Its incredible. The two weeks we have the BEST weather of the year and we are stuck inside a hospital?!?! Boo! And we were suppose to go to a pumpkin patch today.....maybe we can go in a few weeks. Jace's chunky butt would just look so cute next to a big fat pumpkin!

Well, I am about to lay my head down and get some rest - Jace went to bed at a normal time so I am sure he won't be sleeping in tomorrow!

I have to add really quick that he has done AMAZING here! He sleeps pretty well, tolerates all the poking and prodding, and still seems like a happy baby boy! I am so glad he will never remember this!

Good night!