Where did time go?

Harper is 9 years old today!  How did we get here so fast?  I am sure that next year when she hits double digits I may have a breakdown.  My first born is so far from a baby these days yet it is so easy for me to remember those first days, months with her in my arms most of the time.  She is so tall now that when Dayle carried her into the house today after she fell asleep in the car, her legs were dangling past his knees.  She amazes me everyday.

It's Official!

Just got the call from the neurologist.  All of the tests show that she has narcolepsy, so she has a diagnosis.  She has the genetic marker that 20-40% of the population has but most don't develop narcolepsy.  She fell asleep on average 1.6 minutes after laying down during the daytime nap test and she fell into REM sleep 3 out of 5 of the naps.  That was a shocking statistic.   I mean I watch it happen all the time but to hear that in less then 2 minutes she can fall asleep, that was crazy. 

The good news is that she did not have any signs of obstructed sleep apnea so we won't be going through a surgery to remove her tonsils and adenoids.  That was a relief and she even smiled when we told her that news.  She does snore and talk in her sleep though but those are minor concerns.

So what now you say.  Well she is going on a low dose of  Provigil which I am happy to say is not a stimulant like Ritalin or Adderall or an anti-depressant.  Well it is a stimulant but it has minor side affects, is not habit forming, and seems to be highly touted for staying alert and awake during the day.  She is going on the lowest dose and only taking one pill a day. 

Strangely nothing seems different.  I mean I wasn't shocked by the diagnosis.  I would have been shocked to hear it wasn't narcolepsy.    It will be trial and error from here on out though as far as medication goes.  Here's hoping it works.

A quick description

I have been trying to find a good video describing what she goes through and this is really close.  It does a good job of explaining what is happening in her brain to cause this as well as show what cataplexy looks like. 

 

Sadness

They're not here tonight, Dayle and Harper.  They are are Kennedy Krieger Institute for her sleep study.  I wanted him to take a picture of her when she first was hooked up but she was so miserable he didn't want to upset her more. She has been stressed over this for days and we were both unable to convince her that it was probably the easiest test she will go through.  It's 24 hours. It's not needles or a watch that she has to keep on for a week.  But she was so bummed by the thought of going that there have been a whole lot of tears the past couple of days. 

My thoughts have been with her all day and I have been a mess inside.  I'm just sad for her at this point.  Sad she has to even go through this, sad that I can't be there, sad that she is so sad, sad to hear her say "Why can't I be normal?"  I have been doing a lot of holding her as she cries and gets it out because I don't feel like I have any more words or that what I have to say is working.  

Today was picture day at school. I really hope she was able to summon up a smile.

Day and Night

The difference in her week days and her weekends are astonishing.  We have had such a good week.  The napping schedule is really making a difference in her ability to stay awake in the evenings.  Some how that one hour really helps her get through her day at school and then in the evening as well.  But for whatever reason her weekends are so out of whack. 

Well I can guess the reason.  She gets up and watches TV as she has always done on Saturday mornings, but an hour into that she is ready to sleep. We have to schedule things into our day that are just to keep active and moving.  Not that we can't all benefit from it but it is just an adjustment. But what's another adjustment.  If we don't do it she ends up spending her day in and out of sleep.  Then it throws her nights off and she becomes an insomniac. Tuesday night she claims she was up from 9-4.  I'm pretty sure she was in and out of sleep all night but she thinks she was awake the whole time.  Whether she was or wasn't, I just keeping thinking how that has to affect her mentally. 

We went to a party Saturday and she played  from 11:30-3:30. Riding bikes and scooters, playing basketball, jumping in the moon bounce.  She had a blast.  And she took a 3 hour nap afterward.  It wiped her out. I would think that school  would do the same to her. 

So I wrote all of the above paragraphs yesterday but today I had a thought that I really hope to be true. I think she may have come out of her funk, depression even but I'm not sure if she is just having a good week.  I really hope this is a turning point for her as far as her attitude goes anyway. But then again, maybe she has just slept well the last couple of days.