Thursday, June 21, 2012
Hello, hi, how are ya? Remember me? I used to post stuff here. Then my kids got sick and my life got crazy, and I started saving my energy for much harder tasks than blogging...like getting out of bed in the morning...and smiling...and having faith in the future.
Wait, wait wait. I promised myself this post would not descend into maudlin territory. Let's begin again.
Hello, hi, how are ya? Nice to see you again. How've you been? Me? I'm doing okay. Sorry I haven't blogged in awhile. The docs at Primary Children's Medical Center let us know in May that the best way out of our medical crisis was going to be through brain surgery, the good, old fashioned trap door in the skull kind, and I focused on that for awhile.
By focused, I mean I worried myself into a new case of Post Traumatic Stress Disorder. A few panic attacks later, I am now proud to say I've joined the ranks of the heavily medicated, and I'm back in therapy with a a nice lady named Dr. George. Also, the name Dr. George strikes me as funny for some unfathomable reason, and that helps a lot.
(By heavily medicated, I mean a low dose of Zoloft...but for me, that's pretty heavy duty. The good news is it's working, and life seems manageable again.)
So surgery... We got Miriam to the almost seizure free point between February and May and then met with both her neurologist, Dr. Van Orman, and her neurosurgeon, Dr. Kestle, to discuss where to go from there. In the meantime, I studied up on the various options, reading more research reports and journal abstracts that any mom should. (Note to self: that probably didn't help the anxiety...)
While Miriam wasn't having the big, scary seizures anymore, and her new med didn't have the side effects of the first one (prompting us to have a goodbye party complete with ice cream and lemon bars for "Mean Miriam" the day she finished her last dose), she was still having daily "jolts" down her left leg, sometimes falling and injuring herself. Dr. Kestle told us those were still seizures, if partial ones.
Looking at the options, it was clear to everyone that watching and waiting was not going to work. Not only were seizures still a problem, the stroke risk for leaving her cavernous malformation alone would rise every year. By the time she was middle aged, her stroke risk would be in the 50/50 range. This sucker needed to come out.
We hoped for a noninvasive option, and Dr. Kestle was good enough to call around for multiple opinions, both inside and outside of Utah. Stereotactic radiosurgery and gamma knife procedures would have used beams of radiation to obliterate the malformation from her brain without pain or cutting. Unfortunately, all the doctors who looked at her MRI agreed: noninvasive treatment was not an option, and traditional neurosurgery was definitely warranted.
August 7th is the big day. We'll drive down the day before for a super technical, futuristic MRI that will use GPS technology to map out the surgeon's route through the folds of Miriam's brain to the malformation. It's like geocaching, only smaller, I guess. I'm very happy we live in the future.
The docs say we can expect to be in the hospital for four days, and they will not, I repeat, will not have to shave her whole head. Since she'll be starting her 8th grade year just a couple of weeks later, this is kind of a big deal.
Miriam has gone from terrified to determined to impatient in regards to surgery. We had a sad moment when she asked if she could just go back to the way things were before and not have to make such a hard choice between stroke risk and surgery. By the time the day of decision came, she was saying, "I just want this thing out of my head." This past Sunday, after having two big seizure in two hours (out of nowhere), she said she wished it was August already.
That was a hard day. Fortunately for us, we have pretty empathetic cats who realized she needed some cheering up. (Forgive the grainy photos below.) Men from our church were also kind enough to take a break from their Father's Day love fests to come and give her a blessing (Richard being an hour away at work).
Thankfully, giant cats are ridiculously comforting, and we haven't had a repeat of Sunday's seizures.
Even more thankfully, we've been blessed to see the best side of human nature through all of this. People in our church congregation have shown love and support in the form of hugs, well wishes, and much needed treats. Weight loss or no weight loss, there's just something about homemade apple pie and warm scones that says, "It's going to be okay."
Our Mat Camp prospects for the summer were changed dramatically by medical bills and otherwise tight finances. Your remember how much we love MAT Camp, yes? Knowing permanent leg damage following surgery is a real possibility and knowing this year's camp could be her last chance to dance, we swallowed our pride and looked into scholarship possibilities and were told immediately (4 minutes, people) that she qualified for a free pass to camp based on special circumstances. The camp also gave a scholarship to Cate in exchange for Richard working as a volunteer and working musician. Carolee Bowen and Shasta Wigginton are two of my favorite people.
You know who else is my favorite? Eric D. Snider. His name has come up a lot on this blog because he's cramazing and funny and Richard and I have a secret couple crush on him. (Don't tell...unless he'd like that kind of thing...) When he launched a Kickstarter campaign last year to fund a year's worth of his humor columns, I made a $100 donation to purchase some advertising for The Mother Load on one of his posts and profiled the campaign as an Awesome Product here.
A week or so ago, he emailed me to discuss the timing of my ad. Knowing that an ad sending people to an inactive blog was probably counter-intuitive, I asked him to wait to run it until his next round of columns so I could get my act together. As an explanation for my absence from the blogging world, I mentioned Miriam's upcoming surgery.
Things got crazy after that...the good kind of crazy. Citing his well known and potent internet powers, Eric asked if this was a situation where a fundraiser might be helpful. Pride effectively swallowed months ago, I responded that yes, goodness gracious, we could definitely use some help with our out of pocket medical expenses. We emailed back and forth so he could have the information he needed, and yesterday, he rallied his fan base to come to our aid. Here's his post. 24 hours into this thing, and they've already raised more than $500.
I'm not going to lie. Our couple crush for Eric has been blasted into the full on LOVE dimension. If Richard and I were capable of having a baby together, we'd name it Eric/Erica and raise the child on his columns and song parodies and YouTube videos. He's probably glad we can't have kids. (I would explain why, but adding the words "You need a uterus for that" to this already awkward paragraph might cause the man to regret ever emailing me...)
Life has been a little on the hard side, but we know without question that people are good. The weight on my shoulders has been lightened so much by all of these acts of kindness and generosity, and my faith has been bolstered by these small miracles. Thank you to everyone who has donated so far and for the many friends who have reposted and retweeted the link to the fundraiser. The money is sorely needed, and Miriam has felt loved and comforted knowing people care.
So...am I a blogger again? I can say with a surety that I am. Whether or not my writing is worth anything to the world at large, it means a lot to me to have it back. I'm incredibly grateful for that.
I'll keep you posted on the results of the fundraiser. If you want to help, just click the donate button right here on this blog. All of the money will be going into our health savings account, so all of it will be paying for medical expenses only. Prayers and thoughts and energy also welcome.
I'll leave you with a picture that can't help but make you smile. As discouraging as this has been, Miriam is one resilient kid. That's the kind of kid you want to help, no?