So we have quite a bit to update on. First, on February 18 we celebrated JW being 6 months seizure free!! Also, he has had only 1 seizure since our trip to Cleveland last year! We are so thankful that we are in a better place now and we pray that it will continue!!
While we are very thankful and are fully enjoying his seizure free days it has been a struggle to get his behavior under control which is most likely due to the medicine he has to take. Last summer he was very aggressive, withdrawn and seemed almost depressed at times. He was not enjoying life like a 5 year old should and we have had to add supplements to counteract the side effects. Joe and I know that right now he needs this medicine because it is the only thing proven to keep the seizures away at this time. We do cringe at the side effects we have seen take place in JW and we will travel back to Cleveland at the end of March to have a 3 hr EEG and MRI done. The EEG will check for any seizure activity. JW has always shown abnormal activity on EEG's, even before medicine. The MRI will check to see if he has scar tissue. If so, we are under the impression that there is nothing we will be able to do about it medical wise, and we will continue on as we have been trying to prevent any more seizures. If he doesn't, then the possibility of him out growing the seizures is greater and that would be awesome.
We are still pursuing a service dog for him. We are still on the waiting list at CARES Inc. It takes a very long time to train a dog as they train it to the needs requested. I did speak with CARES today and the wait when we applied last May was 12-18 months. She expects us to be in training with a dog by October and possibly June. That is very exciting and overwhelming. Having a service dog will be a big adjustment as we will have to reinforce training daily with it. I have spoken with CARES about JW's seizure activity and our hopefulness of him not having seizures and we can use this dog in any way we want. If the need for a seizure response dog is not there because he is not having seizures, we can still use it as a therapy do to help him deal with the side effects from the medicine or trips to the hospitals or if he is having seizure activity but no seizure the dog can be very comforting for him. We did raise enough money for the dog at last year's walk so we will be ready when we get the letter!
JW's Walk this year is March 22. The focus of this year's walk is not on raising funds but RAISING AWARENESS. Chances are you know someone else besides JW that has epilepsy, take a look at the statistics below:
Please join us in Manhattan on March 22 to RAISE AWARENESSS!! Remember to get your registration in by March 1 and if you need more time please email me. We don't want anyone to not come because of finances!!!
The reality is, epilepsy is a guessing game. Scar tissue or not, he has a history of seizures and epilepsy and the seizures coming back will always remain a possibility. JW has gone as long as a year and half between seizures, so we really can't let our guard down, but we can appreciate what we have right now. He is doing well in school, is very social, active and has more happy days than grumpy. We continue to take it one day at a time and appreciate all the support we have from our friends and family!! So many of you helped us get to this place and we thank you from the bottom of our hearts!!