Connor gets to join an Epidiolex trial!

We’ve been waiting months for confirmation that Connor can take part in a compassionate use trial for Epidiolex. His doctor was on board, but had to submit paperwork and jump hurdles due to the absurd schedule 1 classification by the DEA. Epidiolex is a marijuana-derived pharmaceutical. It contains CBD, and no THC. As we are still fighting for medical cannabis legislation here in Georgia, Chris and I desperately wanted this legal opportunity for Connor.

I actually cried when I got the confirmation. I had no idea how much of a weight this was on my shoulders until that moment because I hardly ever cry anymore. People who have known me for a long time might think, yeah right. I used to be Queen Crybaby, crying over the stupidest little things all the time. But now, on the rare occasions I do cry, it is still over something stupid — like the death of a favorite character on Walking Dead (and unlike some people who like to spoil things instantaneously on Facebook, I STILL won’t name names here for those who are playing catch up on Netflix–oops, veered off on a pet peeve tangent. Suffice to say, the instant someone croaks, you don’t need to flippin’ post it). But I never cry over important things that I probably should. Sometimes it kind of weirds me out and I wonder if something is wrong with me. At any rate, I knew tears were a sign of how important this is to me. As you can see, I may not be able to display emotion when it comes to Connor and TSC, but I’ll sob and punch you in the face over The Walking Dead.

Epidiolex trials are exceptionally difficult to get into, and I don’t know how we got so lucky. I know so many who have tried and haven’t been accepted. This also doesn’t change the need for legislation. Epidiolex is one formulation. It is not the same thing that kids like Charlotte Figi or Haleigh Cox are using out in Colorado. They are on whole plant strains of high-CBD, low-THC oils called Charlotte’s Web and Haleigh’s Hope. Some kids are benefitting from THCa. Others are supplementing with THC when the ratios in the oils don’t hit the spot for seizure control. And it will still be years before Epidiolex is available to the general public. What I’m saying is, Epidiolex isn’t one size fits all. But we hope it will fit Connor.

We aren’t sure on the start date yet. Before he can receive his first dose, he’s required to have a screening appointment. Being the holidays, the next available appointment isn’t until Jan. 6. I was rather dismayed by that as you must keep track of the seizures for a month after that appointment, and that meant he can’t start the med until February. But he happens to have a follow up appointment on the calendar already in early December. The study coordinator is looking into whether that slot will allow enough time for the screening. That would put him on the med by early January. Fingers crossed it’s sooner rather than later.

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CONNOR

Face of cannabis

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CONNOR

Connor was born in March of 2012. Ten weeks prior — at the 30-week ultrasound — we were told there was an irregularity of some sort on the heart wall. The explanation was vague. It might be nothing, or it might be <insert a bunch of big words we had never heard before>.
Tuberous sclerosis complex was mentioned as a possible cause, but it was such a vague maybe that we dismissed it when we Googled the stats. One in 6,000 live births. Well, it couldn’t be that. I was monitored carefully until Connor was born, but whatever was in his heart never grew or affected the heart function. Everything seemed normal until a few hours after delivery. That was when a nurse in the nursery realized he was having seizures. The next 37 days were spent in the NICU. The seemingly benign heart abnormality was confirmed as…

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Men and Mystery of the Woman’s Wardrobe.

photo courtesy of http://www.rimexbd.com
photo courtesy of http://www.rimexbd.com

“You have a lot of jeans.”

“You looked in my jeans drawer?” I asked my husband. Turns out he had decided to put away the pair I left slung over our dusty elliptical. Little does he know how amazing it is that I only have ONE jeans drawer.

I felt he needed explanation.

“That’s because I have three pairs that I don’t currently fit into, but I WILL (see dusty elliptical reference). I have skinny jeans for boots and bootcut jeans for my Converse–”

“Wait, shouldn’t the bootcut go with the boo–”

“Shut up and listen.” I continued. “There is a jean skirt and a couple pairs of capri jeans. Wait…three capris. Two blue — one boyfriend cut and the other a straight leg — and a white pair. Good for summer and sandals. I also have some red skinny jeans to mix it up. Plus the first non-maternity pair of jeans that I was able to squeeze into after giving birth. I could get rid of those…but it feels disloyal. And it’s almost the holidays. Not the time to be cocky.”

I think all this made as much sense to him as when I tried to explain that not only do I need my 80+ pair of shoes, but yes, I need multiple black shoes, brown shoes, flats, boots, etc. Or why I need seven black shirts. No, they aren’t all the same. This one is dressy. That one is casual. This one is v-neck and works with these necklaces. That one is scoop neck and works best with those scarves (I have a whole drawer of those, too).

This one is a collection of my husband's shirts sewn together by my sister-in-law.
This one is a collection of my husband’s shirts sewn together by my sister-in-law.

Yes, sometimes I get carried away. Like my blue stripey phase. I’m not even convinced I look all that good in stripes.

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Since having Connor, my wardrobe can now be divided into two more sections. Crap that requires layering, accessorizing and effort; and crap that does not. This has also led to a shocking rise in the number of flats living in the closet my husband and I share in a very reasonable 80/20 split. I don’t know what the future holds for my large collection of heels, but for now I tell myself I will have fancy, important meetings downtown that will necessitate the wearing of heels when Connor starts school. Who with or about what, I have no idea. In the meantime, I will continue to fight the urge to buy clothes for a life I don’t lead anymore.

To my shoes, although we’ve said good bye, Iiiiiiiee-ey-Iiiiiiii will always love youuuuuuuuuuuuuu:

Thank God I had seats at that Lady Gaga concert.
Thank God I had seats at that Lady Gaga concert.
I ordered these toward the end of my pregnancy. I hope they enjoyed that one dinner.
I ordered these toward the end of my pregnancy. I hope they enjoyed that one dinner.

Now I’m just rocking out with my boy.

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It’s just a bonus that my knee doesn’t hurt anymore.

“But why do you need so many purses?” Here we go again.