June 29, 2010

Welcome to our new web site! We love it!

Story Land

The month of June has been busy at our house. With the end of the school year and the beginning of summer. Nicholas remains about the same medically with still a few seizures a month due to various virus that we think he must have contracted from school. We now have plans for home IV fluids if we ever need them again. This is a way to keep Nicholas at home when he becomes sick with a virus and only needs fluids. I like to keep Nicholas out of the hospital if at all possible because it just does not add more to his care. Sometimes I feel that his familar nurses and care givers can take better care of Nicholas than those who have just met him. Nicholas continues to have no change in seizure medications. He continues to have good strong days and some low days where he seems very tired. He is still doing his best to get around walking with full assistance of myself, Chris, family or a nurse holding his hand or using his walker. But he is determined to walk and get around. His legs are starting to twist as he walks and he does stumble often (we know) but we continue to plunge forward. Nicholas does NOT want to sit still. Which we think is a good thing.

Nicholas and his nurse Theresa blowing bubbles in back yard

Nicholas does go to school in a wheel chair. This was a very heart breaking day for me to get a call from school that he needed to use the wheel chair. I cried most of the day. Nicholas is too heavy for the nurses and staff at school. We have made it clear to Nicholas’s teachers and therapists that his wheel chair is for transportation only. Once at school he must get out of the wheel chair and use his walker. Otherwise he might decline more quickly. He might loose his will if we don’t let him do what he wants. He has not given up and we will not give up. Each step in this disease is hard to swallow and we will fight it at each decline. Nicholas will start summer schoool at the end of the month and will be joined by a nurse and paraprofessional. The additional help at school will give more support to Nicholas to maintain the skills and not decline any faster.

Nicholas is growing so fast. I had to get him more shorts and pants. He is still eating so well! His speech does seem to have decline since the past few months but he can still communicate his needs. In addition to the physical therapy 4 days a week, speech therapy 3 days a week, horse back riding, massage 3 times a week, occupational therapy at school 2 time a week, we have added 1hr private occupational theapy session outside of school. We also try to take Nicholas swimming once or twice a week. I admire Nicholas’s strengh as he works so hard in his quest to enjoy life. Once again I have to say I hate this dreadful disease.

We continue to fundraise. We are working with several other foundations in the US and have monthly conference calls to discuss ways to work together. It is a great way for us all to share information and fight this disease as best we can. There will be a Scientific Conference at the NIH in Maryland in November 2010 for the scientists from around the world working on a cure for Batten disease. OPTN has spearheaded the planning and will be one of several foundations that will be funding this conference. We hope that this conference can help define a plan of attack for this disease and develop funding priorities, so that all of the money that has been raised will be used as effectively as possible. As for the Weil Cornell Study in NYC we are still wating to hear any news of acceptance into the study. Please keep your fingers crossed for Nicholas to get into the study as well as other children with Batten disease, and pray for it to stop or slow the disease. Nicholas is running out of time. Money will allow the scientists to move faster in the search for a cure to this disease.

Nicholas participated on a challenger baseball team this spring. Here is Nicholas at a baseball game, loving every minute being part of a team, hitting the ball and running the bases. Nicholas is SO proud of his trophy!!!! He grabbed it with both hands as his jealous brother looked on, then made his way to his bedroom, where he purposely placed it on his dresser, saying “right there!” It was like he had planned for a while exactly what he would do with such a prize.

We also had our 2nd annual OPTN Golf Outing at the Stonebridge Country Club in Goffstown NH. We were joined by about 40 golfers this year and raised roughly $17,000.00 which is almost as much as last year. Thank you for your support, donations and volunteers to put this event togehter. It was another success.

We have been busy on the weekends with a trip to North Conway for Story Land and Santa’s Village. We also took the boys to a Boston Red Sox Game and stayed 5 innings. Nicholas and William loved every minute of being part of the crowd, singing the songs, eating peanuts, hot dogs and cheering for the Red Sox. It turned out to be a great day for all of us.

UPCOMING EVENTS

We are looking for volunteers to help with the following events. If your interested please contact me at heatherdainiak@hotmail.com. Take a sneak peek at the upcoming fall fundraisers.

2nd Annual OPTN Gala-The date is Friday October 8th at the Manchester Country Club in Bedford NH. Stay tuned for more details.

2nd Annual OPTN Outdoor Halloween Movie Night-It is possible the date may be Saturday October 16, 2010 in Bedford NH but we are also working out the logistics for this event. Please stay tuned for more details.

Thank you again for all your cards, kind words of support and donations to our foundation for our son and children with batten disease. It means the world to us and helps us keep moving forward working toward a cure. We feel fortunate that Nicholas’s magic has pushed us in a direction of meeting with the most amazing people. We are lucky for this. Thank you Nicholas. We love you and our promise still continues to fight for you and children with batten disease. No child or family should go though this.