And It Starts

The Sabril (vigabatrin) was finally delivered around lunch time so we started it tonight.
They sent us the first month starter kit!

Yep - the first month was free!! While that's GREAT its also scary that they didn't give us an estimate of how much it will cost AFTER this first month!


The flavor must not be very appealing. Jace has never had issues taking something from a syringe but this time he actually hesitated. It looks like we will have to use some diluted juice for mixing the powder.

Jace last episode tonight was at 6:05 and I pray that will be his last FOREVER! And counting the seizure free days starts in 3....2...1...

Jace still seems to be cranky at times; he is battling a cold and cutting his last 2 teeth before the nasty 2 year molars. But, when I got home yesterday he was in a great mood. I was greeted with the BIGGEST cheesy smile that just melts my heart! Jace is such a sweetheart!

Now that he is staying at home with my mom during the days I don't have to wake him up in the mornings so I miss out on that little bit of extra time with him. I miss it BUT I am very glad that he is getting the sleep his little body needs and he is being monitored one on one - much more closely than being in a class.

I know how much he loves daycare and being with his friends - once the seizures are under control he will go back. But for now he will get to snuggle up with Grandma everyday! :)

 

Its an unfortunate blessing to meet others that are going through similar situations with their children. However, it is very reassuring to see the families doing quite well and appearing to be happy! I love the fact that I have people to turn and talk to that have been there done that or are walking the same path as Justin and I. Having someone to truly relate to really helps!

I was contacted by a friend this past weekend about the Texas Scottish Rite Hospital in Dallas. She was telling me how I could get Jace's tests and such done at no charge! I am currently looking into all of this but if all we had to do was drive to Dallas for his TSC check ups we could save so much! He will have to go in at least every 6 months for checks up while he is young. He may even have to start out going every 3 months and that can become financially burdening depending on what tests they want to run.

I will continue to update as I find out more about this blessing!