I am not sure where the time went this month. Nicholas is been very stable in the last two months with no apparent changes. His seizures control also remains pretty good and only having seizures due to stomach bugs which lower his threshold. Nicholas is totally blind now and I think he can only see shadows. He still says to me when he wants something in the toy closet “mom I will just show you!” He has a great sense of where things are or should be in our house which is very comforting to him. He also tells me he is going to drive my van when he is 16 and I am going to sit next to him in the front seat. I think it is a good thing he thinks he can see.
Nicholas continues to go to school 5 days a week and after school his afternoons are filled with extra activities such as horseback riding, special needs baseball, PT, OT, Speech and massages We are looking forward to warm weather so we can spend more time outside. Nicholas loves driving his red jeep independently (with a little assistance from mom) and spending time in the sandbox.
Nicholas is doing wonderful with Shane his service dog. We have been lucky to be meeting with our friend who is a dog trainer from time to time and he has shown me how to handle Shane better. I am amazed that Shane can help Nicholas up and down a flight of stairs. It takes some of his weight off of me which is helpful.
This week of school vacation Shane did a lot of working with Nicholas. He accompanied us everywhere and even in restaurants which I have been afraid to tackle on my own with Nicholas.
Shane did great and did his job not moving under the table until commanded.
We had a great success in the second annual Easter egg hunt. Raising roughly $3000. Thank you to Dianne Kashiwaba the mom’s club president for taking this big task on and turning it into another success for our foundation. Also thank you for the endless volunteers for this fundraiser.
This month we celebrated Nicholas’ 7th birthday. He had a huge birthday party at the bounce U (a bouncy house facility) with pony rides and farm animals. He loved every minute of his celebration day. I found myself getting choked up when we sang the happy birthday song to him, it has been quite a year. We were surrounded by family and friends which I would not have wanted it any other way.
Thank you again for everyone support toward our son Nicholas and foundation. We have been making great strides working with other families with foundations like ours called the “Batten Family Coalition”.
This will hopefully join the science together. Working together with other foundations we hope will make a bigger difference for LINCL for the future. We are all working on the same goal which is to move science forward faster in the right direction to save our children.
Boynton’s Taproom, Manchester NH is having a fundraiser for Our Promise To Nicholas Foundation. On June 2, 2010 at 8:00PM. Travis Colby Band (from Roomful of Blues) $10.00 per ticket. Go tohttp://tickets.boyntonstaproom.com/ to purchase your tickets on line.
Our Promise to Nichols 2nd Annual FORE Nicholas Golf Tournament
Friday June 18, 2010
Stonebridge Country Club, Goffstown NH
to register: go to http://nicholastournament.doattend.com
It is going to be a fun event!
We have coin boxes ready for distribution. Be responsible to distribute and pick up money from one coin box. This is an easy way for our foundation to make money. Every coin counts toward raising money for our foundation. Thank you for your help. Please contact email@example.com if you want to help.
Our Promise To Nichoals Gala- Date to be Determined. But will be in Fall 2010. Stay Tuned!