One month ago today Elisabeth went into surgery to have a VNS placed in her chest. Two weeks later, we went back to Spokane to have the device turned on - meaning it would start sending electric pulses to her brain in hopes of reducing seizure activity.
Since turning it on, Elisabeth and I have traveled to Spokane two more times to tweak the settings, searching for that perfect balance between pulse intensity and the interval between pulses.
I am pleased to announce that...
In the past two weeks we have seen a dramatic reduction in seizures. Where we used to see them every one to two hours, we are now seeing perhaps two a day. There was even a period of two days where we saw zero!
As you can imagine, we are thrilled. Elisabeth has been suffering from seizures since she was just six weeks old. Seizures have stolen so much from her: her ability to crawl, her ability to eat, the three words that she once knew how to say. Hopefully, the seizures will continue to decrease. And hopefully, with relief of constant seizure activity, Elisabeth can begin to regain some of the skills that she lost.
The cheers for VNS!
Hip hip hooray!!!!
Do you like Elisabeth's crown? Her nurse at school made it for her! In fact, she made a whole lot of them to be sold at a local boutique under the name Queen E Creations. Isn't that amazing?! And isn't it adorable?!
In less than two weeks we will walk out of the orphanage in Addis Ababa with Elsa at our side. I've been trying to imagine that moment; what I will be feeling, what she will be feeling.
No doubt, she will be a little nervous. And although she does know quite a bit of English vocabulary, I'm guessing Elsa will be somewhat timid about speaking in those first few days (weeks?).
So I had an idea. What about creating a little picture flip book so that she has an easy and comfortable way to communicate her wants, needs, and feelings to us? Because the last thing I want is for her to be sitting on a 17 hour flight from Africa to America too afraid to tell me she has to go to the bathroom!
I explained my idea to Donald and he arrived home from work yesterday with this:
[Elisabeth and I drove past the building where she was born while we were in Spokane yesterday.]
Yesterday, I woke up knowing exactly what I expected of the day:
~ get the big kids off to school
~ take a day trip to Spokane with Elisabeth
~ get home in time to pick up the girls
~ drop them off at guitar and gymnastics lessons
~ pick up Lex from guitar
~ take Lex to karate
~ take myself to the gym
~ swing by and pick up Lorelai from gymnastics
~ go back and get Lex from karate
Did you follow that? Like I said, I had it orchestrated to perfection.
That's before I met my doom with Corn Nuts.
Whenever I have a trip to Spokane with Elisabeth on the docket, Donald stocks the car with snacks for me to munch on. Yesterday's stash included corn nuts and a king size chocolate bar. Which explains why sandwiched in between 'take Lex to Karate' and 'pick up Lorelai from gymnastics' I scheduled a trip to the gym for myself!
Anyways, as I was eating said corn nuts, I suddenly realized that my tooth was gone! I was still about an hour and a half from home and I sort of started to freak out (remember, I have dental phobia). So apparently I swallowed my tooth - or fragments of it - with my corn nuts. Needless to say, I will never eat corn nuts again!
So the next thing I know I am in the dentists chair. And I kept thinking, "What am I doing here? I am not supposed to be here. This was not on my schedule for the day."
But that's how life is, isn't it? As hard as we try to plan and prepare, we just never know what's waiting around the corner. 18 months ago I had no idea that I was about to adopt a little girl from Ethiopia. 7 years ago I had no idea that I was about to become an expert in things like shunts and seizures. 15 years ago I had no idea that I was about to move to the state of Washington.
We always end up in places we don't expect, that's the way life is. Yesterday it was the dentist chair. And who knows what today will bring. Of course, I have my list...but I suppose it is more of a guideline, really. What I have learned is that life can't be planned - it can only be lived.
Reminder: Watch my brothers music video to help him make it to the top 100.
We received an email yesterday from the US Embassy in Ethiopia and they are ready for us!
It's time to bring Elsa home!!
It is so surreal - in just a few weeks she will be here. I can't wait to have her be a part of everyday life; running errands, baking cookies, sitting with us at the dinner table. These seem like very ordinary activities, but Elsa hasn't had a mother to run errands with, or a kitchen to bake in, or a family to dine with. There are so many things that we take for granted everyday. Elsa has really opened my eyes; indeed, she has made the ordinary seem extraordinary.
Our appointment at the embassy is set for November 12th.
Let the great airline-ticket-search, begin!
Now for more exciting news:
As many of you know, I am one of six children (all extremely talented, might I add ;) ). Well, my older brother, Michael, has entered a songwriting competition sponsored by Guitar Center. The top 100 finalists are chosen based off of the number of views each video recieves.
So, would you be so kind as to click on the video below and help him make it to the top 100? I would be so grateful! (And I know he will, too!)
Since Lorelai's birthday comes third in our birthday season, it is very important that I don't lose steam. So I take special care to go above and beyond; to let Lorelai know that even though her birthday is last, it is most definitely not least.
I hereby present the celebration of nine:
Treat bags filled with silly string and Cracker Jack - to go with our circus theme.
Highlights of Lorelai's day:
~ A gymnastics meet.
~ Lunch at Costa Vida
~ Trip to Costco
(Where I said yes to things like ginormous boxes of brownies...
because she asked and she was the birthday girl.)
For Lorelai's 9th Birthday she got:
~ Crystal garden
~ Rainbow loom
~ Guinness Book of World Records
And now, my favorite picture of the day:
Two sisters, whispering, whilst holding a can of silly string.
In 1991 my grandfather was awarded the Disney Legend Award (alongside Mary Blair and Julie Andrews...aka...MPopp!!).
Recently, my brother discovered this video of the awards ceremony. Memories came flooding back as I listened to my Grandfather's acceptance speech; I hadn't heard his voice in over twenty years. In an instant, this long-lost video became a family treasure.
I hope you will enjoy watching this clip of Roy Disney presenting the Disney Legend Award to the 1991 recipients. If you fast forward 7:10 it will take you directly to my Grandfather!
And here is part II (In case you want to see Ms. Andrews!)
Are you familiar with Joshua Bell? If not, you should be. He just so happens to be my favorite violinist - and one of the best in the entire world.
A few years back he did a social experiment with The Washington Post. Bell anonymously situated himself in a D.C. metro station, case open, playing his Stradivarius during rush hour. In the video you watch as hundrends (thousands?) stream past him. Few acknowledge him much less stop and listen. Joshua Bell is a virtuoso who regularly sells out concert halls across the globe, yet in a subway station, dressed in a ballcap and jeans, he went unnoticed.
So what is it? Is it our fast-paced life that doesn't allow us to slow down long enough to enjoy something truly beautiful? Or is it our fascination with labels? (No matter how beautiful the music - a musician wandering the streets does not carry a prestigious label.)
This story and these thoughts were fresh in my mind after re-watching the video on Monday night. As a result, my ears perked up when I heard the sound of music while passing through the hospital lobby yesterday. I looked over to see an elderly man playing piano in the corner. The seats surrounding him were empty. People, in a hurry, passing by quickly.
Immediately, I thought back to Joshua Bell in the subway station. I knew I didn't want to fall victim to what I saw in that video - people moving so fast that they didn't see [hear] the beauty right in front of them.
I lifted Elisabeth from her wheelchair and we sat in one of the vacant seats. It wasn't a world famous musician. It wasn't an invaluable instrument. But nonetheless, we stopped, we listened - and it was lovely.