Here is a calendar that we use to track Nicholas’s progress
|
|
|
|
| Sunday |
Monday |
Tuesday |
Wednesday |
Thursday |
Friday |
Saturday |
| |
|
|
1
* seizureseizure
Nicholas had a seizure at school at 11:35AM. It was 3 minutes of violent shaking arms and legs, stiff body, facial twitching, eyes to the side
|
2
|
3
|
4
|
5
* seizureseizure
Nicholas had a seizure today at 1:30PM. Lasted 2 minutes with violent shaking of arms and legs, hands were both fisted, facial twitching and eyes to the side. An extra 1 1/2 mg Ativan was given on top of scheduled meds for the day to prevent cluster seizures. Nicholas slept from 1:45PM to the next morning 5AM (monday) and woke with more myoclonic jerks
|
6
* myoclonic jerks and medsmyoclonic jerks and meds
Today Nicholas was still exhausted from Sunday's seizures. He slept from 1:30PM Sunday to Monday 5AM. He woke with a lot of myoclonic jerks. Meds given 15 minutes early 5:45AM 3mg Ativan, 0.25mg Clonazepam. Many myoclonic jerks 1 every 1-2minutes. Gav 1/2 mg Ativan at 7AM, 9AM meds gave 2 1/2 mg Ativan. Nicholas coninuted to have many myoclonic jerks between 9am and 11AM gave 1/2 mg Ativan 11AM, Noon 2 1/2 mg Ativan, 3PM 1mg Ativan, 5PM 1 1/2mg Ativan and continued with usual evening doses for meds and times. He was increased 2mg ativan total for the day. He struggled to get throught he day with out many myclonic jerks. He cried ALL day.
|
7
* Myoclonic jerks and medsMyoclonic jerks and meds
Nicholas woke continue to cry/whine all morning. He stayed home from school. No temperature. Many myoclonic jerks all morning. Very Fussy and not happy. Gave meds a usual times but increased a total 1 1/2 mg ativan on top of usual meds. (trying to ween down to usual meds) Maalox 5ml was given, tylenol was given but he continued to seem irritated and fussy all day
|
8
* myoclonic jerks and medsmyoclonic jerks and meds
Nicholas went to school today. Had school nurse increase his 9AM dose so he got 2 1/2mg Ativan instead of 2mg. She called me a noon and say he was having very large myoclonic jerks after noon dose and wanted to give another 1/2 mg Ativan. So he was given at noon 2 1/2mg ativan and at 12:15PM he was given and other 1/2mg Ativan. He got home from school at 1PM and continued to have more myoclonic jerks through out the morning about 20 + overll in the afternoon. He was very fussy. Continued to seem like he was struggling for a seizure to break through his meds. No seizure
|
9
* Myoclonic jerks and medsMyoclonic jerks and meds
Nicholas went to school this morning. He was given usual 6 AM doses, at 9AM he was given 2 1/2 mg ativan, noon 2 1/2 mg ativan. He came home from school at 1PM and had constant myoclonic jerks from 1PM-2PM and our service dog seemed to alert the nurse for a seizure. We gave Nicholas 1/2 mg Ativan at 2PM, 3PM 1mg was given (usual dose) Seizure dog alerted nurse and therapist at 4:20PM 1/2 mg Ativan was given at this time and he was also having large myoclonic jerks. 5PM 1mg Ativan was given and usual evening meds on time. A total 1 1/2 mg ativan was given for the day.
|
10
* Myoclonic jerks and medsMyoclonic jerks and meds
Nicholas was given morning meds on time. At 9AM he was given 3 mg Ativan (1 mg ativan increase). continued to have many myoclonic jerks at 11AM, noon dose given on time 2 1/2 mg ativan. Gave children's hosptial doctor a call to let them know about increase myoclonic jerks (which if no treated will eventually turn into a seizure). Will discuss with team about may need to increase Nicholas meds. He has increased weight and height which may be reason for needed increase in meds.
|
11
|
12
|
13
|
14
|
15
|
16
|
17
|
18
|
19
|
20
|
21
|
22
|
23
|
24
|
25
|
26
|
27
|
28
|
29
|
|
|
|
*************************************************************************************************
UPCOMING EVENTS
***************************************************************************************************************************
Bedford Mom’s Club and Our Promise To Nicholas Easter Egg Hunt
Date: April 16, 2011 9AM-11AM
Nicholas at Easter Egg Hunt 2009
Place:Sportsplex, Building 1, Technology Drive, Bedford NH
Cost: $5.00/family, $20 Max per family All tickets sold at the door
More questions visit: bedfordmomsclub@yahoo.com
Contact person for questions:
heatherdainiak@hotmail.com
*********************************************************************
1st Annual Fore Nicholas Golf Outing 2009
3rd Annual Fore Nicholas Golf Tourament
Date: Saturday June 25, 2011
Place: Stonebridge Country Club, Goffstown, NH
Time: 2PM Start
$125 per player Also Dinner Option only$50.
18 Hole Golf Scramble, Team Prizes, Raffles, Cocktail Recption, Music, Dancing and Live Auction! Clam & Lobster Bake, Chicken, Prime Rib
Click here: Sign up for Golf Tourament
Click here : FORE! Nicholas golf brochure 2011
Click here: Fore Nicholas Golf Tourament Sponsorship options
Contact Person: cdainiak@yahoo.com or heatherdainiak@hotmail.com
*****************************************************************************
Our Promise To Nicholas goes GREEN!A company called Shaklee has taken on our foundation.
Shaklee sells products that appeal to people interested in protecting / improving their mind, body, soul and environment. This company has been in business for over 50 years; it prides itself on its commitment to finding and developing quality non-toxic household products, vitamins, and many other products.
In my household, we are dealing with Nicholas’s eczema – we have to be very mindful of perfumes. I bought some bath products, non-toxic bathtub cleaner, non-toxic hand-soap, children’s vitamins and a multi-vitamin for myself on the Shaklee website. A portion of each dollar spent will also benefit the Our Promise to Nicholas Foundation. Look for the “Go Green” button on our web site.
2. Coin Boxes- Be in charge of one coin box at a location near you. You would be surprised how much money you can raise from coins.
3. We need volunteers- At all events.
- Outdoor Halloween Movie Night- Saturday October 15, 2011, Bedford NH
Nicholas Age 5 1/2
1st Annual Fore Nicholas Golf Outing 2009
Cost:
