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 weekly. He has had an increase in seizure activity in the month of June and we had to increase his medications. He was waking up a lot at 3AM and seemed to be struggling with myoclonic jerks which when there are a lot of them….is a signal he may have a seizure. We increased his night clonazepam and moved the time to 10PM. We also increased his morning medications because he started to have seizures at school. Nicholas is now very limited in his words as well. Only able to say mom, on and again. He has a very difficult time nodding his head “yes” but is still able to cry/whine if he is uncomfortable to express his needs. He knows we will figure it out and seems very patient. Cognitively Nicholas still seems to understand us and sometimes he can get out sounds of words to us. He still really enjoys his Disney movies and still laughs at the appropriate parts, he still enjoys potty talk giving us a lot of giggles. He is also having more difficulty holding his head up and sitting up in a sitting position.
The most recent changes have been difficult for me to watch. Nicholas no longer is able to use his walker. He can still walk but with full assistance of someone holding his body and encouragement of picking up his feet. His hands have started to continuously twitch, his fingers are stiff at times and constricted. He can no longer easily hold on to anything such as a ball or toy. We did bring Nicholas into Children’s hospital Boston to see his neurologist. His doctor reported he was not in any pain. I knew this was going to happen to his hands and arms but did not think it would start over night. We have decided not to medicate him more to help calm his fingers and hands because we don’t want him to be more sedated and “snowed”. He remains quite alert of our voices and his surroundings. He will be fitted for hand and wrist braces in the next few weeks. With a lot of tears (on my part) I had to start putting pull ups (diapers) on him as he has been having a lot of accidents. I can see when he is sitting on the potty the signal from his brain for him to urinate is slowly diminishing. Putting a diaper on a 8 year old breaks my heart. Nicholas was potty trained at 2 and rarely had accidents. To make things easier I call these diapers “big boy undies” as I just can not tell if he really knows I am putting a diaper on him.
Nicholas and his dad laughing
His eating has plummeted in the last 2-3 weeks. He can no longer chew his food as his tongue pushes the food out and he has lost his ability to open his mouth on command. . Nicholas has lost a few pounds in the last 2 weeks, remains healthy looking but I can see how his weight is going to quickly spiral downward. I have been feeding Nicholas for 3 years since his diagnosis and pushing high fat, high calorie, high protein foods. Everyday we work on getting roughly 2000 calories into him and he loves food and loves to eat so it was not that difficult. Keeping his head in a up right position he is not choking which he eats, the strength of his neck varies. Most recently I have started pureeing his food and putting it into a big syringe and syringing the food into his mouth. I know he is hungry that has not changed as he cries and gets angry when he needs food. With a very sad heart he is scheduled to get a gtube placed next week on Thursday August 4 at the Mass General Hospital in Boston. I know it is the right thing to do but it just indicates to me another significant decline in his health.
This spring Nicholas participated on the Challenger baseball team. We did not make it to many games because
Nicholas has a very difficult time regulating him body temperature in the heat. But the games we did participate in he did enjoy hitting the ball and running to the bases with full assistance. Or me carrying him over my shoulder. The season ended with Nicholas being awarded a medal which was the best part of all!
We also did take a take a trip to Story Land in North Conway NH in the last spring and also stayed at a hotel with a water park. Nicholas still loved that roller coaster and water log ride. He was all smiles and yelled “again again again”. He loved the water park. It was a little more difficult for Chris and I to get him up to the top of the water slide. We did but had to carry his 58lb body up 4 flights of stairs. They yell of excitement was worth our struggle! It was a fun short weekend vacation which created great memories for all of us!
We took a trip to Nicholas’s favorite summer place in Cabot Vermont. We rode in his grampy’s old car, made smores, took a boat ride and he enjoyed listening to the waves in the lake and the smell of the crisp clean air. When asked if he wanted to go to Vermont Nicholas raised his arm and tried to get out the words yes me me me!
Grandma and Grandpa at Lake Winnipesaukee NH
Brother William with his cousins
We also spent some time at Lake Winnipesaukee with his other aunts, uncles and cousins! Being with family is what Nicholas loves best! I can’t believe that Nicholas will be entering into the 3rd grade in the fall! Time Flies!
Our Fore Nicholas Golf Outing and Charity Dinner was a big success on June 25, 2011! We raised $21K, we had 80 golfers and 65 whole added to the evening event at our charity dinner. Thank you to all our volunteers for this event we could not have done it with out you! Thank you to our sponsors, family and friends. Thank you to Amberly Gibbs and her band Common Knowledge, Stonebridge Country Club who made our event run so smoothly. Thank you to Kathy Davis Shaklee representative who continues to give our foundation support! We are already planning for next years 4th Fore! Nicholas golf outing and Charity dinner. The date will be Saturday June 23rd at the Stonebridge Country Club. It is going to be even better than this year! Don’t miss it!
OPTN 3rd Annual Outdoor Movie and Halloween Monster Dance Fundraiser: Saturday October 15, 2011 Reilly Field Complex County Road (near the town pool), Bedford NH 4-10PM
Movie:TBD Food: Hamburgers, Hot Dogs, Soups, Drinks Candy, Popcorn, Bake Sale, Children’s Games, Music, Prizes for the best Costume, Monster
Mash Dance Contest, Bouncy Houses, Decorate pumpkins, Raffle Baskets, Surprise Guest! First Movie Starts at 6PM, Second movie starts at 7:30PM
Support OPTN and Buy Shaklee Products through our web site:
By Simply changing brands to buy what you would buy anyways— it would benefit the OPTN foundation. Take a look and see Shaklee vitamins pack major power and handily outshine their rivals. Click here SHAKLEE
Go to “search” and type in Our Promise To Nicholas” . Shaklee sells only the higest quality products. They have been in Business for over 50 years and are the leading natural and nutrition company based in the United States.
Auntie Aida with N
Isabella loving Nicholas
Model T Ride with Aunt Amy and Isabella
Model T Ride with Uncle Danny
Nicholas with his cousins, Nana and Grampy in vermont
Smores at the Camp
We are at the Red Sox!
Nicholas at Story Land