It has been a while since the last post. Nicholas has been doing excellent on the new medicine regimen. He did have a small set back last Sunday with a small seizure but otherwise his mobility has been good. He is able to run around without falling for about 10-15 minutes. The further we get away from the seizures the better his body reacts. He is happy! We did make it to the beach a few weeks ago. It was a terrific day and worth the efforts to get there.
Nicholas and William ran in and out of the water for 45 minutes with out stopping. We could only spend a hour at the beach because Nicholas was totally exhausted and could no longer run or walk but we wrapped him up in a towel and he continued with a big smile. The water was freezing but the boys did not care. The look of excitement and pleasure on the boys faces really made Chris and my day on that beach day. Nicholas had a request for lobster for lunch and we found a place and he devoured a 2 pound lobster drenched in butter. Loving every minute of it. A family day out is what life is about for us.
Otherwise we have been spending a lot of time outside in the sprinklers. The sun really heats Nicholas up quickly and tires him out so we are careful not to over do physical activities.
I have increased Nicholas physical therapy to 4 times a week. He has good days and bad days but we have a fantastic therapist that works well with Nicholas and pushes him daily. I have signed Nicholas up for therapeutic horse back riding for the summer and also looked into some type of swim therapy.
We made it on TV! Make a wish foundation and the Manchester NH Firefighters had a BBQ celebration for our family. They are the ones who raised the money and donated it to the make a wish foundation to full fill our wish to obtain a service dog for Nicholas. We will be getting the dog in January 2010 from an agency in Ohio. It takes time to train this special dog to match Nicholas exact needs and this was the only agency which would provide a dog to a child. Make a wish foundation brought in a few service dogs from a local agency. Nicholas and William fell in love with the dogs at first sight. It was a special day for all of us. We are very thankful and lucky Nicholas was choosen to have his wish fulfilled.
I continue to feed Nicholas almost every meal with high calorie foods. I do encourage him to feed himself and sometimes he surprises me but he still does not consume enough calories on his own. His weight is stable at 45pounds and he is 45 inches tall, he has gained 1 1/2 pounds since last year but also grew 3 inches. He looks lean but I also think he has some strong muscle that keeps him going. He now does have AFO’s which are leg braces, ready for when we really need them and a walker is on the way. But, currently he gets around well on his feet on his own or holding my hand at times. Nicholas is remarkable and continues to fight this up hill battle but at least now we can help him.
Fundraising: What we are doing? Get involved!
1. Russells Garden centerin Wayland MA (owners and all the employees) Thank you for your love, support of our fundraisers for Nicholas. They currently have our wrist bands and coin boxes at each register. Everyone knows about “Dotty’s grandson Nicholas!” Thank you! Your efforts make a big difference!
2. Harmony Learning Center, Bedford NH- Tuesday June 23, 2009 Family BBQ fundraiser for Nicholas. The kids have made home-made signs in the school selling raffle tickets $1 each. Gift baskets will be raffled off on this day. The kids have also made coin boxes “Nickles for Nicholas”. 100% of the proceed from this fundraiser will go to Nicholas Research fund. It is so endearing to see Nicholas friends get involved.
3. Cut-a-thon Sunday June 14, 2009 at Salon Thairapy1100 Hooksett Road, Hooksett NH. 100″% of the proceeds on this day will go to our foundation.
4. Fore Nicholas Golf Tournament– June 20, 2009. Candia Woods Country Club, Candia NH. Prizes, Raffle, Silent Auction, Luncheon. 7AM gun shot start. See tab on the side to sign up and additional information
5. Square -1- Art- Date to be determined. July 2009. Make art for your kids and 33% of proceeds will go to Nicholas Research fund
6. Bounce for Nicholas– Bounce U, Bedford NH Friday August 7, 2009 4-8PM. Steven Blunt, Krickey the Clown, Bake Sale, Silent Auction Items. Price to be determined. 100 %proceeds from this event will go to Nicholas Research Fund
7. Fore Nicholas Golf Tournament– Monday August 10, 2009 Farms Country Club, Wallingford Connecticut. 9 AM Scramble Prizes, Silent Auction Luncheon. For more information see tab for CT Golf tournament. It is going to be a fun event!
8. Batten BBQ Summer Bash– Date to be determine August 2009
9. Old Town day– We will have a table with our foundation information. Selling wrist bands and candy bars and Nicholas’ favorite food which is home made cup cakes.
9. Nicholas Gala Event– Friday Oct 9, 2009 Manchester Country Club, Bedford NH
10. I-give– A percentage of your on-line purchase will go to our foundation
11. Candy Bars– Nicholas’s grandmother Gail has designed a candy bar called “nickko bar” and “Nutty Nicko Bar” which will be selling for $3/bar with a picture of Nicholas on the bar. To purchase a bar please contact send an email to email@example.com
12. Wrist band– “promise to keep” , green band, web site on inside of band. $3 each. Contact us at firstname.lastname@example.org for more information.
Thank you for our family and friends who volunteer their time and efforts to make all the fundraiser events above happen. There is not a day that goes by that we are not fundraising for Nicholas. Chris and I want to thank you from the bottom of our hearts!