Monday, November 19, 2012

Unlike my kiddo, I love sleep- Narcolepsy update

I went to the doctor a few weeks ago to establish myself as a new patient and to check in on some things I'm slightly concerned about.

First up, I was so thankful to not experience hardly any of my symptoms of Narcolepsy while I was pregnant, and even for the last few months (which often happens).  I experienced what I would think is "normal" pregnancy tiredness, but honestly, it was NOTHING compared to how I feel when my narcolepsy symptoms are in full swing.  It was just a tired feeling, usually reserved for the evenings, that actually would improve when I would rest, as opposed to the constant fog of narcolepsy with attacks of sleep that are not helped at all by any amount of rest.  When E was brand spankin' new, I would say that level of fogginess was the closest mimic of my narcolepsy symptoms, but I fully attribute that to the lack of sleep any new parent experiences.  There were no sleep attacks, and as she slept for longer periods, I felt more rested too.

Unfortunately, over the last couple of months, even when E gives us pretty good nighttime stretches (it's her daytime sleep that has me frustrated), I can feel my symptoms returning.  There is a difference between being tired and having a narcolepsy attack.  At the start of an attack, my body is still awake, while my brain goes to sleep.  In high school and college I would actually continue to take notes while my brain was asleep (they were completely unreadable), before completely succumbing to the attack.  I can usually feel the episode coming, but there's nothing I can do to stop it.  Then I'll be completely asleep and out of it (usually just for a few minutes for me).

I do have a mild case, thankfully, but there have been several times I've planned to be out of the house that I've had to change my plans because I don't feel like its safe for me to be behind the wheel.  I've also had a few times when I'm holding E and can feel an attack coming so I make sure to place her somewhere safe and ride out the episode.  My narcolepsy was really well controlled with Provigil, so when I went to my check up, I talked with my doctor about going back on the medication.  But, as with many medications, it is not approved for breastfeeding.  I had hoped there would be an alternative medication my doctor felt was safe, but he didn't know of any that was approved for narcolepsy.

So where do I stand?  Right now, I don't plan on any changes.  So far, my symptoms are still fairly mild, and the attacks are few.  I'm thankful I'm at home with E, and have a lot of flexibility in when I leave the house.  If it gets worse, the hubs and I will be discussing if I need to stop breastfeeding and get back on my medication.

Thursday, November 15, 2012


Tonight you wriggled in my arms, turning your face into my body to block out the light of the lamp.  I was reading to you, trying to prolong your wakefulness before letting you sleep, in an effort to extend your sleep time.  But I knew as you did this that you had reached your limit.  I nursed you, as I do every night before bed, and you sighed, knowing that it was finally time to eat and go to sleep.  You latched on, and your eyes slowly closed as you ate.  Your tiny fist reached out, flailing, grabbing at my shirt, at my neck, until your hand found mine.  Your fingers closed around mine and you relaxed.  Just a few minutes of peace, and then I swept you into my arms, resting your head on my shoulder and patting your back.  You lifted your head, groggily smiled at me, and nuzzled into my neck, fast asleep again.

I love you, baby girl.  I cherish these sleepy moments.  I dreamed about you since I was a little girl, and I waited for you for so long, wondering who you would be, having no idea that who I was would change with your arrival.  Thank you for making me a mama.

Dear Emersyn: 6 Months

Well, baby girl, I now understand why they say that each new month with a baby is the new favorite!  Each day brings out more of your personality, and when you're not a fussypants due to teething and sleeping issues, you are SUCH a happy girl!

Up first, sleeping- you wake for the day around 7am, and go down for your first nap at 9am.  This is where your predictability pretty much ends.  You nap off and on through the day, sometimes as short as 10 minutes, occasionally as long as 35 minutes and usually somewhere in between.  You go to bed between 6:45 and 7:15pm, and you often wake up several times before you get your last feed of the day at 10pm.  You were doing pretty well with sleeping from 10pm until between 4 and 6am for another feeding, but here lately you're waking several times during the night.  Mama is sleepy.  Just when I think I've made my peace with how your sleeping is going (even if its not how I would LIKE for it to be), it gets worse.  Not sure where to go from here.

Teething, however, is another story.  This has definitely improved ever since we got your amber teething necklace.  You wear it all the time, except for in the bath, and you are MUCH less fussy.  We very rarely have to give you Tylenol anymore, and while you still love to gnaw on anything you can get in your mouth, you don't seem to be in total meltdown mode anymore!

You have started some solids, though I'm not very consistent in a schedule for these.  So far you've had oatmeal, avocado, banana, squash, and peas.  Our dog, Gus, is suddenly taking quite the interest in you:)  You still nurse about every three hours, and you and I both love your 10pm dreamfeed.  You eat again during the night before you wake for the day.  I really wish you would drop this middle of the night feed, but sometimes its just easier to nurse you again so I can get some sleep.  At your six month appointment you weighed in at 17 lbs 9 oz.  This puts you in the 74th percentile for weight.  You are 25.5 inches long, which only puts you in the 30th percentile for height, but the dr said you could hit a growth spurt and be two inches longer, so it is nothing to worry about.

While you still show no real interest in rolling from your belly to your back, its hard to keep you from rolling onto your belly. This is proving to make diaper changing and dressing you quite the challenge.  In an effort to encourage you to crawl I started putting toys out of your reach, but you quickly figured out that you can just reach them by pulling the blanket they are on toward you.  You look so proud of yourself when you manage this!

Your sitting up skills continue to improve, and you love for me to pull you to your feet from sitting.  Your very favorite thing though, is playing airplane.  The smiles and laughs this produces are priceless. I think you're starting to recognize your name, and I think you also know that I'm "Mama" even though you don't seem interested in actually saying Mama, despite my best efforts.  You are a people person, doing great at the nursery at church, and with any visitors.  Your daddy's grandparents love to visit, and this month you were reunited with your long distance boyfriend, Knox (the son of mama's bff).  

Things you're loving right now: bathtime, your pacis, snuggling with mom and dad, seeing yourself in the mirror or on our cell phone cameras, and anything you can get into your mouth (bonus points if its our cell phones).  You also love music and dancing, your exersaucer in the mornings, and cups.

Obviously we'd still love for your sleeping to improve, but in general, this has been such a wonderful month.  I think teething was a bigger issue than we knew, because your necklace has made such an improvement.  We love you so very much, and can't believe how fast the last six months have gone.