Lots of updates from the last post.
Where do I start……
We recently had two doctor appointments last week. The first was a 3 hour ophthalmology appointment at Children’s hospital in Boston. A VEP test done (Visual Evoked Potential Test) in which electrodes were placed on his head and he had to watch black and white stripes on a monitor. The test is measuring this visual acuity by assessing the responce of brain waves to the moving black and white stripes. He was given other eye tests but had a very difficult time getting his attention to focus what was being asked. He appeared aphasic at times and frustrated making the appointment difficult to determine if he could actually see the objects or not. The ophthalmologist did say he has had a decline in his vision according to what they could measure on this days appointment. We will obtain the final results of these tests in a few weeks.
The second appointment we had was at Mass General Hospital with our Batten disease specialist. Nothing new was discussed but just an evaluation of where he was as compared to 3 months ago. I did get my blood drawn as I am a carrier of this disease but they want to make sure it is the exact same strain as Nicholas. I do have the papers to get William drawn for this disease and I know it needs to be done to bring closure for our family about his possible diagnosis as well.
We did have a visit and evaluation from the Make a Wish foundation in the past weeks. We are asking for a service dog for Nicholas. The make a wish granters interviewed us and spoke to Nicholas. He made sure they knew ” I want a dog and I want to name him Buzz lightyear” It brought tears to my eyes that he could communicate that this is really what he wants. This dog will be able to detect seizures, help guide him as his vision declines and also be a mobility dog (if needed). It will also provide him with responsibility, comfort and security as this disease progresses his dog will be by his side. This dog may also be able to accompany Nicholas at school.
We did go to Disney as you can see in the pictures with Nicholas’ grandparents. We had an amazing time and I am glad we scrapped together our money to go on this last minute trip. Nicholas had a blast and we went on every ride possible. I could not believe he did not have one seizure while we were down there because we exhausted the boys and ourselves. He even went on the roller coaster twice…he loved it!
Lastly but not least we had our Egg Hunt fundraiser. Wow! This event took my breath away by the amount of families that came out to support us. There were about 500 people that attended the event.
It was completely put together by volunteers in Mom’s group of Bedford NH. Nicholas laughed, smiled and giggled (and RAN) then entire 2 hour event. He had his face painted like a pirate and he danced to music by Amy Connely. It was endearing to watch his excitement surrounded with love from our family and friends.
He has had a little set back this last week with a few seizures. Not sure if it was from a virus (as usual) or all the excitement over the weekend. It was a larger seizure than usual so we have increased his Ativan dose again. I was glad to have Chris with me during this seizure. Nicholas came out of it okay but it really slowed down his mobility and slurred his speech for a few days. He is getting back to baseline.. thank goodness! He is our little fighter!
Next fundraiser is “Fore Nicholas “golf tournament on June 20th at Candia Woods in Candia NH. We are looking for hole sponsors and golfers to come to this fundraiser. It should be another fun event. Please check out the tab on the front page for more information.
I also wanted to mention that in the past 8 months of knowing Nicholas has this disease I have met and made so many kind new friends. Chris told me when we found out that people we meet and friends are not going to know what to say to us or what to say to their own children (friends of Nicholas). I also wonder what do I say to William when he is ready to ask me about Nicholas. Just being honest and open seems to be best for our family. I am not afraid to talk about Nicholas and I want those reading my posts to continue to approach me at anytime in public or private. Of course if I am with Nicholas… I might not be able to talk because Nicholas continues with his fast pace of running holding my hand.
Every donation and fundraiser will bringing awareness to Batten disease. Our non-profit foundation plans to raise money to fund a gene therapy study. This study could save Nicholas and other children with Batten disease. The study only needs funding to start enrollement. We thank you for your support and donations! In the mean time we are trying to provide Nichoals with the best quality life.