Wednesday, August 22, 2012

Goadsby's Magical Receptors

*Let me start this post off with a disclaimer:  I am NOT in any way, shape or form a medical expert (or even a scientist.)  Everything in this post is based on my interpretation of what has been told to us by our magnificent team of doctors.*

She looked up just as I clicked ... oh, well

As many of you know, my oldest daughter, Samantha, has been suffering from a debilitating headache since January 3, 2012.  Her official diagnosis is NDPH (see this post for more details.)  She continues to be unresponsive to treatments, so last week we got to travel down to San Francisco for another course of DHE treatment--this time with her specialists at the UCSF Headache Clinic.

Things went well.  She reached the target dosage of the DHE (dihydroergotamine) and with a little experimentation, was not nauseous for most of that.  The doctors were concerned with that because nausea is an indicator as to the efficacy of the treatment--basically the more nauseous you are the less effective the treatment is.  Her "drug of choice" (boy that sounds bad) was a combination of Domperidone (the non-alcoholic distant cousin ...) and Kytril--not for everyone, but worked wonders for Samantha.  We had an amazing team of doctors working with us--headed by the two doctors at the headache clinic.  The intern assigned to her, Dr. Chan, was amazing!  She is a first year intern focusing on Pediatrics, but she was so good for Samantha.  She has an amazing fashion sense that caught our attention right away, and when Samantha was having difficulty seeing things through, she was able to talk her through it.

Without going into too much detail, Sam and I agreed that "Goadsby's magical receptors" was the phrase of the week.  I heard Dr. Goadsby himself talking about them with the other doctors using thousand-dollar words that I couldn't possibly hope to repeat, but one of the Neuro-interns dumbed it down for us with that phrase.  Basically they are the neurotransmitters in our brains that act as pain receptors.  Sam's are misfiring and not responding to treatments thus far.  Sooo, the DHE molecules are supposed to connect themselves to these receptors to confuse them into letting other meds through to the brain and therefore break the headache.  Very oversimplified, I'm sure, but that's how I understand it.

So now we wait.  Again.

Monday, August 20, 2012

This-is-so-COOL: Happy Birthday to ME!

Forgive a little self indulgence today.  This has been a month to remember already and I have no idea where time has gone.  I woke up this morning and realized that I hadn't posted since the first of the month.  Yikes!

Last night I came home from work and Rhett showed me our new cabinets.  This was an idea I saw on Pinterest a while back and pushed for in our bathroom remodel.  There's a couple of more things to work on, but here's a preview:

Last year Rhett took me to Best Buy for my birthday.  I know ... woohoo, right?  Well, you know, not really.  He's the best husband ever, but definitely has a one-track mind and uses special occasions to try to keep me more up-to-date ... ANYWAY, he bought me a Kindle.  At the time, I indulged him as he let me browse the various readers and make my final choice, but I've always thought of myself as a traditionalist--smell-and-feel-the-pages-of-the-book, look-at-the-glossy-pictures-in-the-gift-books, rip-articles-from-magazines-I-want-to-keep, always-carry-a-paperback-in-my-purse kind of gal.  And I am, but ... I LOVE MY KINDLE!!  It's like the gift that keeps on giving.  It's small enough to fit in my purse even with the case on it.  I always have several choices of books to read from.  I can read it in the sunlight and there's no glare to worry about.  Even my eye doctor extolled the virtues of this e-wonder when I went in for an eye exam.  When I'm finished with a book, it stores away nicely in a folder and I can easily get the next gem over our home network.  What used to take up two double deep shelves of my bookcases, now takes up six lines on my Kindle.  Don't misunderstand ... I still steal away to B&N every chance I get and I will always keep certain books (Narnia and Green Gables, for example) on my shelf (there are just too many memories and too much sentiment to let them go,) but I have a new tool in my shed that is better in so many other ways.

This past year has also been so full for me.  I've gone new places and learned so many new things.  I started this blog in earnest and I'm really enjoying it.  The original intention was to have a family-share forum as well as  a place to share my love of crafting.  I think most of all its become a way for me to process and evaluate.  This works for my craft projects, but more especially for LIFE.  There is a magic to writing that helps clarify the thinking process.  There have been many posts I sat down and worked out, then never published just because I needed the therapy.  Maybe I'll get better about sharing more, but for now the process works for me.

Since I was a teenager, I always wanted to learn to quilt.  I'd check books from the library and read them and look at the old quilts in the pictures.  I even went to see a play called Quilters with Grandma Heath as a teen.  I loved that you could tell a story with the fabric and construction as well as through its life and lineage.  But no one in my circle quilted and I'm too timid to try something that grand on my own. Well, about two years ago, I decided it was time to bite the bullet.  I had one of those chain mail things were you send the first two people blocks then forward the letter and wait for your blocks to come in the mail ... Well that prompted me to my first basic project (below).  I bought a couple books from JoAnn's and off I went.  I won't tell you how long it took, but I was LEARNING!

I also got the idea for Sam's Trek quilt about that time and went to town on that.  I'm not very patient with the hand quilting, but I can do it and I get better each time I work on it.  This year I plucked up the courage to start machine quilting.  I've got the basics down and love to spend time practicing.  I've got a long way to go, but am loving the journey.  I can totally see how this hobby can become an obsession.

All in all, I can look back at this past year with a deep sense of accomplishment.  I'll never get to everything I want to get to, but I've kept it all moving right along.  I've focused my priorities into taking care of my family and eked out time for other things I enjoy.  I hope you all can feel as blessed in your own endeavors!

Wednesday, August 1, 2012

Half-baked: A little bit of this, a little bit of that ...

Welcome to August!  I've always loved this month (and not JUST because it means its almost my birthday :) Memories of August include sweltering days poolside, watering flowers in our yard for Dad and back-to-school shopping.  I still remember buying some sweet cords and a brown velour top that I LOVED one year for elementary school.  (Did I just totally date myself?  Oh well.)

Last week Rhett and I removed EVERYTHING from our bedroom for a pretty intense deep-clean.  That meant furniture, craft supplies, clothes and well, you name it was spread throughout the house.  You could barely walk into our living room for almost a week.  The kids playroom literally had paths to the computers.  We took that time to re-arrange things as we put things back in order.  Rhett and I switched our "office" areas.  He now has my old sewing table and that side of the bedroom and I have a longer fold-out table in the living room.  I also gave up my craft closet that stored all my supplies--painting, crochet, sewing and scrapbooking.  Its been quite interesting trying to create suitable new spaces.  It will be ongoing ...
Since I got most of that to a stopping point, I took some time to finish my Tetris block for week 3--YAY!  I'm loving how this is coming along.  This is my first truly scrap project and I think it'll make a fun picnic or outdoor blanket.
Finally, I got some baking done last night.  We have a little "thing" this afternoon at Rhett's work that I'll post more on later, but I wanted to make a goodie tray to take with us.  Both recipes I got from other bloggers.  My favorite cookie ever is Oatmeal Chocolate Chip, so I had to try this recipe that was recently posted.  I made them with my small Pampered Chef scoop--so people would be more likely to munch.  They turned out really well.  They browned up nicely and are soft to eat.  I still prefer my Aunt Susie's recipe (I'll  have to post that sometime ...) that I've had forever, but these aren't bad.  The cinnamon flavor is really strong, so I'll either halve or totally omit that next time.  This other recipe is one that I've made before for ward potlucks.  It always disappears super fast.  I cut it into about 1" squares.  It's a very rich three layers:  chocolate chip cookie, oreos and brownie mix.  The recipe calls for double stuff, but I just use regular Oreos.  It can take 15 or 20 minutes more to cook than the recipe says, so be patient. Its definitely worth the time it takes to cool and set up, so leave yourself plenty of time by making it the night before you actually want it.