1st Week of school!!!

Vand'n was so ready for school to start.  I wish I could say the same for ME.  I had (and still have) very mixed emotions about it all.  As many other mom's of new kindergartners do.  We made it through the first week of school and although it is only 3 hours long he did pretty good getting used to his new routine.  He was exhausted by the time he got home just before noon and it was all he could do to stay awake while I made lunch so he could eat and have a rest.  I learned after the 2nd day that I needed to have lunch started or done before I walked over to get him.  Then it was NAP TIME!  You would think that since he is so tired he would be excited to take a Nap but not the case "NAPS are for babies" that is what I am told.  So we now have QUIET TIME!!! He goes into his been and reads books.  He also informs me everyday "I am not going to sleep I am just going to read".  He is out in under 3 min every time and he sleeps for 2-3 1/2 hours.  The first day to school he told me he didn't get tired at all "I didn't let that narcolepsy get me, I just  punched it right in the face". 

   As I think back to last year at this time... I had a few of the same emotions as I have now they are just stemming from the narcolepsy.  I worried about him being so much taller than the other kids and getting made fun of (more as he gets older), now I worry that he will be made fun of for sleeping or looking silly and/or collapsing when he laughs.  I worried about him being bored and loosing interest, now I worry about him getting bored and falling asleep.  I worried about him not eating school lunch, now I still worry about him no eating but honestly I am so grateful he doesn't like food because many children/people with narcolepsy are very overweight.

I NEVER imagined that he would develop narcolepsy.   

I NEVER worried that the flu shot/H1N1 would trigger narcolepsy.

I NEVER thought that we would have to meet with his teacher and the special education department discussing a 504 or an IEP for  his schooling and his well-being.  

I NEVER knew anyone who had narcolepsy (that I was aware of).

I NEVER knew we would be PUSHING FOR & HELPING SPREAD NARCOLEPSY AWARENESS.

I NEVER dreamed that we would meet so many or even that there were other families dealing with narcolepsy in their young children.

   I have visited with so many mom's about their children's schooling and quite honestly have been sickened by their stories of how their children are treated by students and teachers.  How horribly mistaken they are for saying there was nothing wrong with these kids and that they were just lazy, unmotivated, and needed to get more sleep at night.  A few parents even told me that their child's school refused to let them have a scheduled nap (even after having a Dr's. note) because there was simply just not enough time.  Some that were allowed naps had to do so at the back of the class with no pillow or blanket and at the display of the class.  One story saddened me to no end...this boy was not allowed to have a nap and when he got tired the teacher would make him stand and walk (which is probably OK to do before they get tired) when he did fall asleep sitting at his desk he would awake with marks of pen and marker all over him.  

   We have been so very fortunate so far with school.  We set up an appointment with the Special Ed Department and his teacher.  We presented them with brochures and information sheets and we even showed them a few of Vand'n's cataplexy videos so that they could see what it looked like and to make sure they knew that he would be OK and that he wasn't having a seizure.  Also to make sure that someone would be in charge of making sure that Van wasn't left sleeping somewhere if there was a fire or other emergency. Everyone has been very curious and eager to learn and help him.  He has a great teacher and an aid in his class.  We will meet again in a month or 2 to put together a more formal plan when he see how his going to do.  

WE PRAY FOR HELP IN SPREADING AWARENESS OF NARCOLEPSY AND FOR THE FAMILIES AFFECTED BY IT.  ALSO FOR STRENGTH FOR THOSE WHO ARE SUFFERING BECAUSE OF THE LACK AWARENESS IN THEIR COMMUNITY AND OTHERS THEY ARE IN CONTACT WITH.

WE WILL CONTINUE TO PRAY FOR A CURE FOR NARCOLEPSY AND SO MANY OTHER DISORDERS AND ILLNESSES.  

HELP OUR NARCOLEPSY COMMUNITY!!!

FDA’s Narcolepsy Patient Focused Meeting on September 24, 2013 is quickly approaching. This ground-breaking opportunity puts narcolepsy advocates in the spotlight – educating decision makers and helping to shape the future of narcolepsy treatments.
YOU CAN HELP BY...
     TAKING THE SURVEY:  People with narcolepsy AND loved ones are invited to take this anonymous confidential survey, based on the FDA’s questions to capture the variations in patients’ experiences (about 15-20 mins to complete).
Take survey here!

YOUR CAN GET INFORMED BY....
    JOINING THE WEBINARS:  Check in with Julie here. She will have the link and updated information on her page as it becomes available.  The webinars are offered on each Thursday leading up to the FDA's meeting.

YOU CAN ATTEND THE FDA's MEETING...live or by webcast Register Here

T-Shirts!!!

We have been working on some shirts for a while, and they are now finalized and being printed (they will be ready on the 12th of Sept).  We took a while to get them right because the characters are the basis for a children's book that Vand'n wants to write.  Before you ask, it will be Super Hero themed since Van's whole life revolves around anything with super powers. 

Narcolepsy is our New Normal, and he has embraced it as his super power.  We know it will make him stronger and work harder to get him where he is going in life.  

We choose to empower him to not be afraid or to let Narcolepsy have any hold on him.   We realize that he will end up being "The kid with Narcolepsy" because of all of this, but we feel strongly that is going to be the case even if we try to hide it and push it under the rug, so we have decided to help him along by not backing down, and not hiding, and letting him go out and boldly face the world.  

The shirts will be available for purchase if you are interested.  We can ship or arrange pickup if you would like.  We are asking for $15 donation to help with medication/doctors visits and to help get him to Stanford and possibly the Narcolepsy Conference in the next few years.  Please contact Deidre at (four three five)-463.2001  if you are interested.   

The boy and girl are available in youth sizes XS, S, M, L  and adult sizes S - 3XL in the colors shown below.
  

Camping with Narcolepsy

This weekend, we decided to go camping, so we spent about 4 hours gathering stuff up and made it to camp at about 9:30 friday night.  Vand'n slept most of the way up, and was pretty wired when he woke up, so we had to give him his medicine early to help him get to sleep.

At some point in the night, he fell off the table/bed he was sleeping on, so Dee plopped him back on it, and he did pretty good for the rest of the night, but we were wondering if he falls off his bed often at home and gets himself back in, so maybe we will put a camera in there sometime to see.

Since we got to bed late, and slept horribly, of course we were up at 7 a.m. and cooking breakfast.  At least the scenery was good, and the weather perfect.  the kids wanted their guns out while I was cooking breakfast, so I decided since he was in a good mood, there was a smaller chance of him shooting his brother and sister.  So for the rest of the day, they spent every minute - that wasn't eating or riding 4-wheelers -"hunting" (I put it in quotes because they are scaredy cats and wouldn't walk more than 100 ft from the trailer).  They did however assure me that the each shot at least 1 grasshopper, and more than a few ants.  So when the apocalypse happens, I'm looking for hunting partners if anyone is interested.

Once breakfast was cleaned up, we went for our first ride.  We went to my favorite spot. Here is the view from there.

As soon as we pulled up Vand'n informed me that he was tired, so I had him lay on my arm, and he was gone within minutes.  That made for a fun 2 mile ride back.  

Lenix also decided she liked to sleep while riding.  Props to big sister Denim for holding her almost the whole time.

We had lunch and then decided to go on another ride to the pond.  I swear this used to be a 10 minute ride, but apparently it is a 45 minute ride with a kid who falls asleep about 20 minutes in.  This time was a little trickier because there was a steep downhill where I had to keep his face from bouncing off the handlebars.  

Here is a view from the top before the downhill to the pond.

Once we were down there, we started skipping rocks across the water.  This was great until Krosby (Van's 2 yr old brother)  tosses in a huge rock... and it floats...  Well since this is an open range area, the simple math tells us that Kros threw in a cowpie.  Without thinking I say, "Kros, that was poop!"  and next thing we know Vand'n is having a cataplexy attack and almost falls over.  

If you look close, you can see the floating "rock". Also I'm pretty sure Dee is holding his hand to he doesn't fall over.  A common approach we use when he is having Cataplexy.

It seems pretty consistent that any "potty" related humor is what makes him laugh the hardest and have the most aggressive Cataplexy episodes.  As we were leaving, one member of our group had to go number 1, and this made Van laugh again.  I tried to video it (the cataplexy, not the #1), but I was too slow.  The laughing cataplexy is a weird thing to watch, and we have to make sure he doesn't hit his head or smother himself, but it is interesting how he will be telling a joke and have an episode for about 5 seconds, and when he snaps out of it, he will carry on with what he was saying like he never stopped.  

So in closing, we learned that Narcolepsy will slow down your outdoor activities a little, but they are still a blast, and the family can really come together when you don't see anyone else for 24 hours.  These are the blessings that we are grateful for and hope to continue enjoying.

Dad's First Post

Since my wife has been updating so often, I figured I had better step up and contribute something to this lovely little corner of the internet she has created.

They always say the first step is the hardest, and that is true of this experience for me.  My mind is going a hundred different directions as I desperately try to get it all out and typed up.

It has been 4 months since we got the diagnosis of Narcolepsy for Vand'n, and I feel we are finally getting to where the medications have evened his moodiness and sleepiness to the point that he seems happy with life, and Dee and I aren't worried about him lashing out and hurting his brother and sisters.   For about the last week, he has only been taking naps once a day, and usually they have been in late afternoon, which gives me hope that someday he might make it through a full day of school.

Typically when Vand'n takes a nap, he tosses and turns the whole time, and often talks.  This is because he is typically in REM sleep when he naps.  The misconception is that they (narcoleptics) fall asleep and are passed out cold.  But the opposite is actually happening; they are so into their dreams from REM that they don't get any rest at all.  In fact, when we try to wake him from a nap, he will often yell random stuff at us, because he is still sleeping, and he is reacting to his dream world.  When I have to pull him out of the car while he is sleeping, he will usually sleep through it, but this is not because he is in a deep sleep, he is most likely having an episode of sleep paralysis.

His medication is given at night, so we will try to wake him up at about 1 a.m. to give his first dose.  We wait til then because the medicine only puts him into deep sleep for about 3-4 hours.  The second dose is at 5 a.m. so he will wake up about 8 or 9.  

Anyway, waking him up at 1 can be a pretty interesting experience depending on what he is dreaming about (remember, he is always dreaming until we give him his medicine because he is in REM sleep). 1 of three things will usually happen:
   1- About half the time he wakes up, stretches, goes to the bathroom (must be a guy thing) and takes his medicine, then it's back to bed. No Problem
   2- He will sleep through everything we do to him for up to 15 minutes or sometimes longer.  Then eventually he will wake up and either do the same as #1 or...
   3- He will appear to be awake, but he will say or do something completely unexpected.  I will try to post these as they happen

This leads me to my new goal: posting every other day.  I will try to make it entertaining and informative, so check back often and share with everyone you know!

-alex