It's been awhile. I scratch my head a little as to why that may be. I took up blogging while in the midst of going to nursing school at night, while working full time and, of course, managing Sofie. I had a long list of possible blog topics, and then I graduated from nursing school and just sort of lost the urge. I was cleaning the basement recently, and came upon a huge stack of papers I had written in nursing school, and had to remind myself that, yes, I did write all of those, while I was working, and being a wife and mom. I started to tell myself I wouldn't possibly have the energy to do all of that now. But then I remind myself how many times I've had that thought, and somehow we manage to find a way. I'm sure we can all relate to that.
So that's the mini explanation as to where I've been.
But a major change has happened and I suddenly want to write about it, even though I am a little bit afraid to.
I was talking to my mom the other day. She had called me on my birthday, but I missed the call and it was days before I could call her back. I was exhausted. Sofie was on "Spring Break" and I had taken vacation time from work because we couldn't possibly find anyone to help watch her. It's no one's fault. She is an exhausting little girl. I apologized to my mom and told her that taking care of six patients on ventilators at work for twelve hours is easier than watching Sofie. It sounds so terrible to say that. But between a brain injury and autism and seizures, her mind and body don't stop. Several times over the break I wanted to cry because I wondered how her school staff could possibly handle her without losing their patience and it made me worry for her safety. Her last aide lasted only a few short weeks before she found a new job. Her aide turnover is very high. I remember my school days and learning about Helen Keller as a child, and how she'd bite and scrape and scratch, and overturn and break things. Sometimes it would feel like we were raising a little Helen.
The week culminated with our annual visit to our neurologist, Dr. "Z". By the time we got into the exam room, I was already sweating from wrestling with her. I had put her braces on her, so she could stand on the scale, but she wouldn't stand long enough for a weight to register. She immediately discovered the top of the scale was wobbly and could be manhandled, so she grabbed it and jiggled it to the point I thought it would break, and then noticed a cart with a scale on it for babies. She made a run for that and tried her best to make off with it. She has long been obsessed with anything with wheels. Once she gets a grip on anything with her left hand (the only hand she uses), that grip is so strong now we have a hard time releasing it. A stern face and the word "no" mean nothing. As if trying to comfort me, the nurse proclaims she's a busy girl, a saying I've heard a million times and I hate. Thankfully we didn't have to wait long for Dr. "Z". She smiled at him and made good eye contact, but it didn't last long. She scraped his hand with her fingernails. Her way of either acknowledging him, or trying to convey she wanted something from him. She pulled hard on his tie, kept grabbing at the doorknob to leave, ripped the paper off the examination table, and grabbed at every tool he subsequently took out of his little black bag. I hate all of those tools. They cure nothing and generally diagnose heartache. I had been reading that sometimes medications for ADHD can help children with brain injury and/or autism and so I asked him about it (even though she already takes so many medications). He did not disagree, but wanted to give it the proverbial "couple more weeks" and let her get situated back in school from the break, and then decide. Two more weeks sounded like such a long time.
The following day was her surgery to have a feeding tube put in. Doctors have been putting a full-court press on us to do this, especially these last couple of years. Even if we only used it to give her medications when she's sick and to hydrate her, they said, then it would be worthwhile and may keep her out of the hospital. In my mind, I thought of a feeding tube as a symbol that we'd lost some battle, and I wasn't ready to surrender. In nursing school, a couple of doctors suddenly appeared at my patient's bedside one day and and told me they would be putting a feeding tube (and tracheotomy) in. I thought, okay...we've contemplated a feeding tube for Sofie, so maybe this is some kind of sign. They prepped the patient and darkened the room and I tried to imagine her little body lying there. I watched as they snaked a little light through the throat and into the belly and when they saw the glow of the light under the skin, took out a scalpel and made a hole. It was at that moment I felt weak and broke out into a terrible sweat. My face shield steamed up and I couldn't see. I made it to the back of the room just so I could breathe and dehumidify. Needless to say, that did nothing for the cause. Furthermore, I would think of the children in poor countries surviving on grain and water and thought of how delighted they'd be to eat the biscuits and gravy she ate for breakfast and dinner every day. And the endless supply of Reese's peanut butter cups she'd eat in between. Nevermind this was her diet for the last three years.
After this last hospitalization for pneumonia, my husband and I raised the white flag and started the preliminary tests to have a feeding tube put in. I was suddenly on a countdown, knowing it would be the last few times I would see her soft little belly without the ugly feeding tube, akin to a view of the most beautiful countryside you've ever seen, with a huge utility pole jutting out of the earth. I mourned the idea of putting a hole in her stomach, without her ability to understand why we would do this to her.
Thankfully, the surgery went well. The nurse made us look at the site not long after, which is part of the acclimation process to a change like this, and we were discharged about 24 hours later. I had decided that since we were going to do this to her, I would go ahead and supplement her nutrition with some Ensure so she didn't crave quite so many Reese's. And I would add Fish Oil. The expensive liquid Whole Foods kind of fish oil harvested in deep, cold water off the coast of Norway that sounds so good and tastes so terrible. I tried it and nearly gagged on it, so I knew she would have too. We'd be putting that through her feeding tube, and iron. We learned she was slightly anemic at her last hospitalization and it took her a while to get off oxygen so we could go home. The only other change would be 1000 micrograms of Biotin, a B vitamin tablet to be given twice a day, that a doctor had been wanting us to try. We'd just put this stuff right in the tube, because almost every bite of biscuits and gravy had a seizure pill or allergy or asthma pill hidden inside. We were at the max using that route.
For the first few days she hurt a little and was subdued from the pain and pain medicine. On the fourth day, I took her to a local mall, which for the last while had become an exhausting experience. She would grab at every item she could, pull items off the shelf just to watch them fall, pull down "sale" markers and knock over displays. And then there's the checkout. In the time it takes to reach into your purse, pull out your wallet and grab your debit card, she has pulled down shelves of trinkets and store gift cards and overturned boxes of candy and tic tacs. Lately I would have my debit card in my pocket so there was no fumbling and fewer angry looks. I wouldn't even think of getting into a line with more than a couple of people ahead of me. Well this shopping trip was different.
I took her to Old Navy. She saw one of those plastic utility carts stacked with clothing and actually left it alone. She didn't pull clothing off the racks. She turned around in her stroller chair and smiled up at me. I actually found her a few pieces of clothing. She turned around and smiled some more. I went through the checkout. I wasn't sweating. The cashier didn't say a thing about Sofie being "busy" and instead commented on what a pretty girl she is. I sent a text to my husband. "We're at the mall and she is like a different kid." "How?" he typed back. "Not grabbing at everything. We went to Old Navy and it was a breeze. Smiling and looking all around." Just to be sure it wasn't a fluke, I took her to Wilson' Leather. We didn't buy anything, but she didn't destroy anything there either. We rode the carousel and she didn't try to bail halfway into the ride. I took her to the shoe store. She was a complete angel. I took her to this "hippie" store I don't even know the name of with overpriced clothing from India and dusty geodes. A sales woman approached us and made the usual small talk. Sofie did grab her hand and smiled at her for the longest time and just didn't want to let go of her hand. I couldn't blame her. She did have long, beautiful hair, and flowy clothing, and exuded peace and happiness and warmth. I think I had a crush on her at that point.
I didn't say anything to her teachers about the change we'd seen, but as the bus driver pulled up yesterday to deliver her from school, she commented on how different Sofie was. I wanted details. She said she was smiling all the way home, and not trying to open other children's backpacks or unlock her wheelchair to escape. They said the teachers noticed some big changes too. I immediately opened her backpack to look for clues. Her aide wrote about how she smiled and was eager for hugs and alert and interested. And there was a piece of artwork that said "great job cutting and gluing". That was the first time I'd ever seen a comment like that, and I knew it wasn't the teacher just trying to make us feel good.
There is no way to convey what these last few days have been like. To us, it's almost as profound as if she suddenly started talking, and in fact, she's been trying to make a few consonant sounds. Or maybe what it would be for a paraplegic to suddenly rise up out of a wheelchair and start walking. Those are the two examples that keep coming to mind.
I hesitated to write about this for fear of jinxing it. As we first started seeing these changes, I would say to my husband, "can you believe this?" He would shush me and tell me that even mentioning this is like playing baseball and telling your your pitcher he's pitching a no-hitter. But I'm so blown away I can't help myself. I know that these changes have come about from some vitamin or mineral or nutrient she was missing. We are so happy, but so mad at ourselves for being so stubborn. We were so wrong.
I hope this change continues, but of course, I know there are no guarantees. I do have a few other things that I want to add (slowly) to that feeding tube of hers. That dangly calibrated rubber sculpture with a nozzle on the end. The most beautiful thing I ever saw.
