by siteadmin | Aug 7, 2023 | Uncategorized
A quick update since Nicholas g-tube was placed on August 4, 2011. He had lost nearly 10 pounds over the summer and had difficulty opening his mouth and chewing his food. It was very stressful for both Nicholas and I so Chris and I decided it was time for a feeding...
by siteadmin | Aug 7, 2023 | Uncategorized
Welcome to mid summer. An update on Nicholas. School seemed to end quickly this spring and we quickly moved into summer fun to begin. How is Nicholas. I wish I could say that Nicholas has maintained from the last post but he continues to decline and I can see it...
by siteadmin | Aug 7, 2023 | Uncategorized
Happy 8th birthday Nicholas and Happy 11th Anniversary to Chris and I! Nicholas birthday was on May 9th and it is still hard to believe that he turned 8 this year. It actually was a very tough day for me to get through knowing Nicholas’s future. I spent part of the...
by siteadmin | Aug 7, 2023 | Uncategorized
Spring is here! I always have to start our first line as “we continue to be so busy with Nicholas!” Every day Nicholas’s day is filled with an adventure would be the best way to describe it! First, an update on Nicholas. We had our 6 month evaluation in NYC for the...
by siteadmin | Aug 7, 2023 | Uncategorized
Nicholas remains busy starting the new year. He is still walking with full assistance, walker or assistance with wheel chair at home and school. He still loves his toys (especially his trains) and Disney movies. The month of January Nicholas did experience an increase...
by siteadmin | Aug 4, 2023 | Uncategorized
December 2010 Dear Friends and Family, Happy Holidays! I take time to reflect on Our Promise to Nicholas (OPTN) Foundation, our family and Nicholas. We started January taking a two week trip to Xenia Ohio for Nicholas service dog Shane. Make a wish granted Nicholas...
by siteadmin | Aug 4, 2023 | Uncategorized
Nicholas has been well since his brain surgery on August 24, 2010. He has returned back to school and his after school therapies. He was very lethargic and tired for the first 4 weeks after surgery. There were days when he hardly spoke a word and his walking was not...
by siteadmin | Aug 4, 2023 | Uncategorized
We were called. We were called/invited for Nicholas to participate into the phase I gene therapy trial in NYC but were given a two week notice. When Chris told me the news my stomach burned and I filled with anxiety. This could be Nicholas’s only chance to live. ...
by siteadmin | Aug 4, 2023 | Uncategorized
Below are 5 letters that I wrote to family and Friends while we were going through our journey in NYC. I thought I would share them on my web site. If you want a more detail and more pictures of day by day of our journey in NYC read September post 2010. Update Letter...
by siteadmin | Aug 4, 2023 | Uncategorized
Nicholas had a busy summer. Here are some more pictures from time at the Red Sox! He continues with PT, OT, Speech, Horseback riding and Massage every week. Never a dull moment here! Here are a few pictures from the summer. Thank you Laura Pace for setting this all up...
