If my life had a soundtrack I believe the song “Everything Changes” from Waitress would be heavily featured. The first part that truly speaks to me goes like this:
“Today’s a day like any other
But I’m changed I am a mother
Oh, in an instant
And who I was has disappeared
It doesn’t matter, now you’re here
And a few bars later these are the words:
“Two tiny hands, a pair of eyes
An unsung melody is mine for safekeeping
And I will guard it with my life
I’d hang the moon for it to shine on her sleeping
Starting here and starting now
I can feel the heart of how
As I look back I see there are no entries in Grace’s blog since her birthday. Frankly, it’s because Grace is changing and Kevin and I are trying to keep up. Her seizures have been messing with her quality of life more than we like. She’s been considered “malnourished” for a while; I hate that label it makes me feel like a horrible mom. As she gets taller she’s been deemed further malnourished. (Ugh) Her sodium levels are still low, and the doctor leading that arm of her care is discouraged he can’t diagnose her with something that explains it. Grace’s pediatrician and I had a good chuckle over that; Grace’s pediatrician long ago realized that Grace defies explanation and he is good with that. It’s one of the reasons we love him. Grace has had so much blood and urine tested for all kinds of levels it’s unbelievable. It took two IEP meetings to get her school plan figured out. One of the lenses of her glasses kept popping out. She’s outgrown the flexible soft glasses we’ve been buying her. And there are other things I can’t write about, but I believe I’ve given you a taste.
So, we’ve changed her medicine. We went up on one and we are adding one. The medicine we are adding is called Epidiolex. It’s derived from marijuana and FDA/DEA approved. It does not contain anything that would give Grace a high. There are only 10 pharmacies in the country that have access to it. Once we had the prescription we waited about six weeks for it to actually arrive. When it did we found out there were additional steps we needed to take to make sure we had all the documentation we need to travel with it. We have her on the lowest dose right now and will gradually be increasing her dose over the next month. I’m anxious to see what it will do for her and am daring to be hopeful that she could have fewer seizures, and if not fewer seizures then easier ones for her to bounce back from. As with any new med we second-guess ourselves about whether or not we are doing the right thing. We’ve known that a cannabinoid medication has been an option for Grace for a long time…but until now it had never been legal in the form we needed it to be. Cross your fingers.
We’ve changed her formula. No more pediatric blend for Grace. She’s now getting a formula for adults made primarily from whole foods, but we don’t have to do the mixing or blending. We now have to feed her every two hours when she’s awake so she can get the calories she needs. It’s intense. We are adjusting. The flexibility we had seems gone. It’s taken time to get her to the right amount and there have been multiple calls and emails between doctors, the dietician, and home care nursing all with us as the hub in the wheel between everyone to figure this all out. The amount of formula we get from the supplier to feed Grace in a month is exactly to the drop what we need to feed her. If we spill she misses calories…No pressure. Once we see how her sodium does, and if she plumps up a bit, they’d like us to introduce some blended real foods. That could be amazing.
Kevin, master of research, found glasses. He found a place willing to get a few pairs onsite for Grace to try. We paid for the transition lenses so sunlight isn’t so bright for her. We want her to hold her head up in the world- even outside! We are anxious to see how the glasses hold up to Grace’s abuse.
Through all of these changes, Grace just keeps going. She complains at times, but I have to think if I were her I’d be complaining more. One thing that has brought me comfort through all of this is watching her sleep. We watch her at night through a video-based baby monitor. She has slept the same way since she’s been little. She curls up on her right side. She tucks her hands under her right cheek and she sleeps. When you put her on her side in bed she usually just snuggles right in. I can easily imagine her little when I watch her sleep. She’s so beautiful and I don’t see ability or disability when she sleeps, I only see Grace.
And in those moments the song plays in my head. In an instant she was ours. In an instant we got a diagnosis. There were other instants she got more diagnoses. She is innocent. Her unsung melody could easily be lost to our fear or our complacency. We can’t hang the moon but we can try our best to do whatever we can for her. We recommit everyday to Grace because she is here.