Shoe Shopping (Snoozing)

This is how Van feels about shoe shopping for school. We made it about 10 minutes and he went to the car with dad to sleep lol. On the plus side we did pick a pair of shoes before that.

Blood for Mignot

Prepping to see Dr. Mignot....
Even though we still aren't scheduled till December we are getting all the prep work done so we can up and go last minute if we need.
Vand'n did so well, he didn't even cry (before he asked if it was ok if he did) he had to watch the whole thing. He wiggled a bit and had to have a second poke to finish. But all in all he did great.

SOME GOOD NEWS!!!

Some Good News.... Vand'n is going to go see Dr. Mignot (Dr. Mignot is the worlds leading Narcolepsy research Dr. ) He is at Stanford University and he only see patients one day a month. We are so very lucky to have Van be accepted as one of his patients. We are tentatively scheduled for December but they are wanting to get him in before school starts. So hopefully we will be flying out in a month or two.

Just finished... This book was truly eye opening to me as I have experienced narcolepsy second hand to my 5 year old who can only explain things to me as he feels and understands. Author Julie Flygare made it possible for me to have an inside look of what my little guy is feeling in his head and I can't thank her enough for this. Really it's a great read for everyone.
Julie Flygare is a narcolepsy advocate.  She has made many helpful and insightful videos to the world of people with narcolepsy.  She also has a blog and a Facebook page with lots of information and new updates.  For more on Julie's experience living with and advocating for narcolepsy visit http://julieflygare.com/

Cataplexy Video

I have had alot of people asking about Cataplexy so we put together a small clip of van's cataplexy attacks. Before treatment he was having these 15+ times a day (triggered by laughing). His cataplexy ranges from barely noticeable face drooping to complete colapse. 

A Very Emotional Week.
It's been a long hard week for us as reality is setting that we will most likely never have the same little boy even with meds. We had a great day on Tuesday, actually we haven't seen Vand'n that happy and himself in months. We took full advantage, dad took off work and we went St. George to the splash pad. I got my hopes up:(. Wednesday morning we woke up to his heavy eyes and angry heart. Everyone has to walk on egg shells around him and make sure everything is done and said perfectly to avoid his rage. I feel like our family is straining to just maintain survival.
If we go out people look at me like "control your child", Or we are packing a very big (70lb and really tall) 5 year old sleeping boy, along with our 2 year old and the 9 month old baby. Luckily we have Denim (our 11 yr old) to help with the younger ones. Easier to just stay home.
We did get in contact with another mom who has a son with very similar traits of narcolepsy. It was so great to hear from her and know that there is someone who knows what we r dealing with and that we can ask questions. We hope to find others. So please help us spread the word and if you know anyone who has young children with Narcolepsy please send them our way.

After 6 weeks of being on medicine for his narcolepsy. We have these sparkly eyes a lot more lately. While his medicine is in effect at night he doesn't have night terrors or hallucinations. His cataplexy attacks are decreased to a couple a day (they were 10+ times a day). He still falls asleep 2+ times a day, but they are much shorter naps. He is experiencing multiple side effects from the medicine like; being angry and very violent, he seems a little depressed, and he is not quite himself. We are debating whether it is worth continuing the medicine much longer. The Dr. And the pharmacy nurses tell us that the higher doses and the longer he is on the medicine the less the side effects get and what doesn't go away they said we could treat with other meds like anti depressants and/or stimulants. We don't feel that treating the side effects with more drugs is the right answer we feel that it's just causing a vicious cycle and we don't know how long we can actually hold out before we look for a different treatment option.
On a positive note we are so grateful that it wasn't something life threatening, life altering yes, but it could have been so much worse, and at least we still have him here with us and we can learn to deal with his narcolepsy step by step. We know our Heavenly Father has great things in store for him and that he loves us all so very much and he will help us through. We also have the love and support of so many family and friends that will help us in anyway that we need.