First, I need to say thank you for all the prayers, messages, texts, phone calls, sleepless nights and meals you all have shared with me and my family. I haven't been able to respond to all of them, but they've all touched me and given me strength. My Sensei gave a beautiful speech when I received my brown belt, where he quoted my favorite saying of his: "Life is a fight. You get up in the morning, wrap your hands, slip, duck, move. You wait for your opening, and take a clean shot. You go to bed at night knowing you've fought a good fight." We have fought a good fight this week. We are exhausted, but we've taken huge strides.
Grace's pump is delivering 75 micrograms of baclofen. She has a completely new body. Some of the things we're finding are funny, some are unnerving, but overall it just means we'll have to relearn things that she wasn't supposed to be able to do even the first time around. ;) The tone has been decreased so much, that she is really loose in her legs which is what we wanted. She's also become very loose in her arms and hands. Enough so that I've noticed when her hands are relaxed and stretched, she has her Aunt Michelle's exquisite fingers. And she has one heckuva backhand...which I found out as she was trying to reach for something that now requires much less strength than before. :) Duly noted.
She had homefries and an egg for breakfast, with chocolate pudding. (we promised...) She had some mac n cheese for lunch, but not much for dinner. Progress is a fickle thing. She's still groggy, and her speech is definately more muddled, but that could also be the baclofen. She had a dose of valium at 2:30AM and a dose of morphine at 6AM, and none since. I'd like to pull back more from the valium to get it completely out of her system so we know where we are, but that will depend on whether she has spasms. If she does, she'll need to continue taking it. So far, so good. Her PT session today was amazing. Her legs were almost fully extended and loose. I sent a picture to a friend of mine who is a PT, just to make sure I wasn't over reacting or turning into a medical version of "Toddlers and Tiaras". His response? "That is AWESOME!" Stage Mom label - denied. I feel so validated...thanks JV. :)
She sat in a hospital wheelchair reclined to about 80 degrees for two hours, and she was confortable sitting in her own wheelchair at 90 degrees. She prefers to lay in bed...but so do I. However, I can't, so neither can she.
She had one IV port removed as it was no longer viable, but the other is still in. She's not hooked up, but they're leaving it just in case. Her O2 sats were at 99-100% last night on room air. Go girl!
Lisa came to visit for a bit this afternoon, which gave me a chance to shower and grab some food. Ted will be here all day tomorrow, and his parents (Grandmom and GrandBob) are coming to visit.
She wants out. She knows she has to really concentrate on eating tomorrow in order for her to get the go ahead to leave. We'll make a decision with Dr. Miller as the day progresses.
Special thanks to Dale and my Mom for talking my heart back into my chest yesterday, as we were trying to make sense of all the side effects and complications. Between the two of you, it was truly the smack I needed that yes, we're doing the right thing, yes, this is normal, yes, it's okay to panic, but move on, and move forward. Never ending gratitude ladies.
She has a really long way to go. I would love to be able to tell you all exactly what these procedures will do for her, but honestly, we just don't know. At the very least, it will make caring for her easier, and reduce her pain. That in itself is a beautiful thing. Anything else is icing on the cake. Will she walk? I don't know. Although a few of you have dreamt it over the last few months, and honestly kinda freaked me out. In a good way. Will she use a gait trainer? Possibly. But, the most important question is: will she be able to do all she was DESIGNED to do? Abso-friggin-lutely. Whether that's gaining mobility, causing someone to stop and appreciate what they take for granted, or teaching a total stranger a life lesson, she'll do what she's been made to do. 'Cause that's how she rolls.
xoxo
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