Posted on October 18, 2014
It's been a few months since I last posted. We have been very busy since school started. JP is now in 6th grade at Acadia Middle school and enjoying his classes. He does have a 1-1 aide that helps him throughout the day. He comes home from school exhausted and most days takes a nap before dinner. He is still playing lax every morning with dad before school and tries to get in a game or two before bed. JP is receiving a spinal tap every two weeks of the experimental drug, cyclodextrin. We have a great team of doctors at Albany Med and JP doesn't mind going for his "poke" as he calls it. This past Thursday was JP's 10th injection since we started in the spring. He has to go to Albany Med for a monthly hearing test and routine bloodwork. Our visits to Albany Med are becoming part of our new "normal" life.
It has been over a year now since our diagnosis. JP was diagnosed last September. As we look back at our year we have accomplished a lot, thanks to many people. It's been a year of ups and downs but we have learned to take life day by day. We adjust our day whenever we hit a bump and continue to move forward.
We have our annual Wide World of Sports 2 Fundraiser coming up on November 17th at the Century House. Last year there were over 450 people there to support JP! This year, JP will be attending the event. Please come out for a great event and help us raise money for research. We need to find a cure to this horrible disease. Tickets may be purchased at https://fundabilities.com/JPs-Event-2014
We are also looking for items for our silent auction. If you would like to donate to this please contact Maribeth Piche at 506-3968.
Thank you for again for being part of JP's Team, it's people like you that make a difference.believe. hope. perservere.