And the Results are In....

Jace is a surgical candidate!
All of his seizures are coming from a focal spot and it is right where his tuber is (in the left frontal area). The doctor did say that this area is the “language” area which may be why we noticed his loss of words and communication when times were bad and also why his speech is on the borderline of normal for his age. There has been some recent increase in his language skills so I can't say that he is majorly affected by it.



What's taking the doctor so long??



We go back February 21st to talk to this epilepologist again about surgery. Before then she will meet with the epilepsy board (including the neurosurgeon) and present Jace’s case to them. They will all concur on whether surgery would be best for him and what kind of surgery. With the results she found through the MEG scan, his case is pretty simple and straight forward.

We will more than likely do a Phase II test the week before surgery. This is where they put electrodes directly on the brain to even more precisely map out his brain and pinpoint the origination of the seizures. This is a good and bad thing. We want to get a precise location for the resection but this test has the risks of infection that you normally would not worry about since the brain is never exposed like it would be for this.

As long as Jace continues to develop and progress the way he has been then surgery will be in 3-5 months. If he was to worsen they would get him in for surgery quicker. In the mean time, we will not make any changes in his medications. After surgery they may change his medications but he will have to be on it for typically a year after surgery (as long as side effects are not increasing or causing issues).

Even with this surgery, as the brain rewires itself, he can possibly develop seizures from another location in the brain. This is something that can happen in any person that has this surgery. The other risk is if they didn’t get all the abnormal area out the first surgery so he would continue to have seizures from that area. They can’t say for sure that he will only need one surgery or if he will endure multiple surgeries.

The doctor said that putting Jace back in daycare would not be a bad idea considering he is starting to learn so much and the socializing is a good thing to have at this age, even if it were part time.

However, if he continually gets sick from attending daycare then we would reassess that situation and go from there. He cannot go into brain surgery with any type of illness. Also there is always that chance that illnesses can worsen seizures. He has been pretty healthy the past 6 months – besides his fever he spiked at Thanksgiving. Majority of those 6 months he was in daycare. *knock on wood*

As all of this sounds like "bad" news, it isn't. We were hoping that he would be a candidate since this is the most successful path to getting him seizure free! I know a few people I have told this new to was unsure of what to say since it sounds so terrible. It is terrible, however, it's our journey we have to travel it. Between talking with doctors that don't have any emotion about this, knowing that we just have to learn to deal/cope and having faith that God is guiding us, its hard to break down and get worried. If we did give in to our fears and anxiety we would be nut cases. 

The only bad news we learned today was Jace's seizures are indeed long. What we have been normally seeing are seizures and not a postictal state. We were told incorrectly in the EMU while getting tested. Jace has seizures lasting anywhere from 1 minute to 30 minutes! With TSC, seizures can be even more different than they typical person with epilepsy. This is partly why is called Tuberous Sclerosis COMPLEX - it is nothing but complex.  

So on to fun stuff. Last week sometime JB and I looked at the baby monitor and saw Jace sleeping like this

He LOVES to put his feet or arms out the crib or prop them up while he sleeps. I don't know how he is going to adjust when we turn his bed into a toddler bed.

Saturday, JB and I went to our company Christmas party. We had a professional picture taken there (haven't received it yet) but here are a few shots that we took. JB looked incredibly handsome I must say. I was one proud wife that night! The food was pretty good, the band was incredible and we had fun dancing to a few songs. We had never been to a Christmas party for Mustang and I have to say it far exceeded my expectations. What a classy and beautiful party!  

After a night of fun like that Sunday was a pretty slow day. We were suppose to go do the Bryan Christmas in Lexington but JB was in no shape for that. And since this week is going to be busy for us to Jace and I (well mainly I) made cookies for Santa. We made some yummy Old Fashioned Chocolate Chip Cookies!

They turned out pretty good but for some reason whenever I bake my stuff comes out with too much of a baking soda flavor to it.......I wish I knew why. I only use the called amount of baking soda so I know it's not TOO much in there. Oh well - they are still scrumptious! :)

Who doesn't love cookie dough?

My air freshener for the day :)

YUM!!

 Hopefully I can  get on and post about Christmas later this week.

If not I want to wish everyone a MERRY CHRISTMAS!!

Oh and tomorrow is the first day of winter!!!! I wish the weather would get the memo.

Its going to be 80 degrees tomorrow! Gotta love Houston's wishy washy weather!