One afternoon in June, Handy Helper Evelyn, Rachel and I were driving the BOH to an appointment. I seem to remember focusing on the road, but my mind was trying to think about too many things all at once. At one point, I looked down and noticed I was going about 70 in a 55 MPH zone. As I realized my grave error, and started pumping the breaks, a squad car flipped on his lights and pulled me over.
I was lucky, and I got off on a written warning. But this moment brought a cautionary tale to the fore, with a dash of philosophy thrown in for good measure: While I have learned many things as your trusty Bus of Hope Driver, the theme as of late is about the speed limits of life. Rachel’s recovery process is not linear; rather, it meanders like a country road. Her milestones have been scattered all throughout the eight-year journey. Often, as the driver, I want to speed the Bus to get to the next glorious vista, attraction, or goal met. It is hard to be patient.
Yet, here we are, landing safely in the middle of July. For most folks, it is filled with vacations, sports, barbeques, and any old excuse to enjoy the great outdoors. For us on the Bus, our itinerary is filled with medical appointments, therapy, summer school, teaching, and working hard at all of our roles.
This particular summer, during this particular episode of care, Rachel’s recovery offers a crystalizing Polaroid of hope. Overall, her language skills continue to blossom. Her comic timing is sharp, and her eyes are round and bright as she soaks in the sights of life all around her.
Physical therapy offers very exciting view of her recovery. For those of you new to the BOH, I’m specifically talking about the Hocoma Lokomat ®. It is a robotic device that assists patients in gait training. Minnesota only has two of these: one is at the veterans’ hospital, and the other is at Gillette in St. Paul. Rachel is a rare breed as a repeat patient. I think this is likely her fourth or fifth time using it.
This current success wasn’t happening two years ago. We had to wait to this summer for this outcome. See? We can’t speed on this journey, as much as we would like to have…Now to be fair, if Rachel is unfocused and tired, the left leg lags like a sandbag. No muscles fire, and the brain’s signal to the leg fades. When this happens, the vision of a full recovery feels like a mirage rather than reachable milestone.
And yet, with the March 22nd osteotomy and hamstring surgery behind her, Rachel’s legs are *able to pick up a stronger signal from the brain, offering some of the best steps I’ve ever seen. This video is from Friday, and I call it “Twenty seconds, twenty steps.” Look at her eyes, open and bright. Look at her calm demeanor, and look at her soaking up the supporting chorus of counting steps. Look at the straighter legs, the even, bilateral steps from both feet. As posted on Facebook two weeks ago, here’s another video of Rachel walking on the treadmill, after a vigorous session in the Lokomat.
The Lokomat sessions take place on Mondays, Wednesdays, and Fridays. On Tuesdays, Rachel, Evelyn, and I head over to Minnetonka for speech and OT.
In speech, Carrie is working on:
- Classification (whole to parts) – Where can you find a sink, toothbrush, tub, and toilet? In the bathroom!
- Increasing complete sentences – Here’s one sentence I teased out of her: “I want to call my friend Randall on the phone.”
- More recall (WH-questions) – I hear these a lot: Where is Daddy? (Working overtime.) What are you doing, Mom? (I’m doing the dishes.) Where are we going? (We are headed to Costco.) What are you looking for? (I’m looking for my hat.) What time is it? What is this movie? And, the ever-famous, often asked, starting early in the day…WHAT IS FOR DINNER?
- Naming actions or activities displayed in pictures (verbing it out). A little girl is holding a cup to her lips; Rachel should be able to read and say: She is drinking. And she can deliver said line pretty well.
Just now, I turned to Rachel and prefaced a dialogue about making a choice between popcorn or painting fingernails with the following line:
ME: Rachel, you’re going to have to make a decision…
Rachel: Uh oh!
At our last few sessions, Carrie has been happy with Rachel’s overall progress. Carrie is really impressed and pleased with how Rachel has deepened her focus this summer.
(In fact, one could argue that perhaps Rachel WANTS to focus, WANTS to work hard. Such a milestone is worthy of waiting for, but easy to lose patience while obeying the laws of recovery!)
Over at OT, we are working with a new therapist to the Gillette team, and her name is Jamee. A pint of a woman who offers gigantic hope and joy when working with Rachel. Both OT professionals – Jamee and Wendy – have always regarded my daughter as having tremendous potential.
On any given day, Jamee has Rachel working on self-care, such as teeth-brushing, cleaning-while-naming the body parts with a loofa, and putting on deodorant, AKA pit-juice! With Rachel’s tone in her right arm, Jamee offered the following idea: flipping the day and night-time splints. Oddly enough, it’s working: first, she will tolerate the switch and wears the splints for long periods of time. Second, she is able to open her right hand a little more, holding the side rail at the Lokomat, letting it rest with an open palm on her commode, and reaching up and over to her mid-line to touch a toy or pop a bubble.
In fact, one afternoon, as we wheeled her out of the Gillette lobby, Rachel took her right arm, reached all the way to her left to push the button that opens the door. I was floored with her strong effort to complete a challenging task.
In one of the recent sessions with Wendy, they worked on getting her own socks on her feet. Did you know there is a contraption for this? And in another session with Jamee, they worked on blowing whistles to strengthen the pelvic floor muscles. Why do we do this, you ask? Well, that’s because we’re “taking it to the MNGI and Urology Street!”
Ahem…Allow me to explain:
OK, so…I think you all know that Rachel’s still in a diaper. If there’s ONE thing I would sacrifice almost anything for, it’s getting Rachel back in underwear and out of diapers. Way back in April, I started making calls and asking questions about incontinence. As a result of these inquiries, we had the pleasure of meeting an urologist (at Gillette) and a gastroenterologist (at MNGI).
I don’t want to gross you out, so yes, I will be efficient – but I won’t speed! – with my words:
- In May, we learned that she was really, really, really backed up. We were strongly suggested to jumpstart the process with an enema, but back that with Miralax. We enacted Miralax on a semi-regular basis and balked at the enema, hoping the latter would do the trick.
- In early June, we traveled to MNGI off of Broadway in Minneapolis. We met a young, enthusiastic doctor and had an honest, frank discussion about the beauty, regularity, and momentum of poop. She recommended that we start slow, with the basics. She told us that she was treating Rachel as if she were any other 12 year old who suffered from constipation. At the close of our consultation, she requested that we get an X-ray to see if we had made progress in our Miralaxing program….We snuck in the X-ray that afternoon.
The next day, while watching Rachel walk in the Lokomat, my cell rang and it was the doc from MNGI: Rachel is STILL backed up. She requests (sternly) that we first give her 14 ounces of Miralax over the weekend to get her bowels moving. Then, starting that following Monday, we were to give her Miralax every morning and Ex-lax each night. We have been pretty diligent on this program ever since. And her pooping has become much more consistent. I also learned this: If you’re backed up this much, the full colon exerts pressure on the bladder, thus making it challenging to control the urine. In fact, we can measure our success in this program by how many dry diapers she has in the morning, and yes, in the last week or so, she has not only been dry but voided too. - On July 1, we headed back to Gillette to perform a test to see how much liquid Rachel can hold in her bladder, which is 400 mils, in case you’re wondering; yes, I’m sure there is a name for this test, but I can’t remember what it is. As far as that technician is concerned, Rachel’s bladder is pretty normal, and she CAN hold it if she wants to…After that test, we visited with the nurse practitioner to discuss our progress with voiding and BMs. She told us to keep doing what we’re doing with Miralaxing and Ex-lax; while gaining control is a marvelous goal, keeping her regular is good for her overall health, even if we have to assist her. But the big billboard message she shared with us was this: This program we have her on could take anywhere from 6-12 months. Once again, I’m reminded to obey the speed limits!
Another aspect of Rachel’s growth emerged in May: she began menstruating! The pimples that pair with this are a quite the time marker. The only way is through, I suppose. But the timing here is a thing of beauty with 3/22 surgeries: On average, girls grow about two more inches after menstruation begins. (But I got a feeling her current height of 55 inches will far exceed that. Period.)
This past week, Rachel started another round of Summer School here at Grandview Middle School. She works on language arts/reading, math, and a little gait training for good measure. All reports thus far are positive, suggesting that she lives out the mantra we say while she boards the bus: “Work hard, have a positive day and attitude.”
Now, please allow me to lay out a theory of sorts: Throughout the month of May, Rachel was having a tough time in math, unable to focus. Now, she is just fine. My theory is that when you are constipated, you’re gonna have a sore attitude. This is just another reason to keep Rachel’s inner engines working.
I’m enjoying teaching a Creative Writing course and a research writing class. CW is fully online, and the other is a traditional, face-to-face course. I have also begun teaching the Summer Scholars Academy, hosted by Normandale’s Continuing Education.
The overtime at Jim’s job has been steadily flowing; he is putting in an average of 55-60 hours at his job. He is up by 3 most mornings, drinking the coffee I have (often) assembled the night before. I join him by 4. Rachel and I are in the shower by 5.
(We think sleep is for wimps.)
Just like last year, BOH Day Camp is up and running; Evelyn is our consistent ‘Handy Helper Elf.’ She intuits what’s needed and offers to do things: she opens the van door and lowers Rachel’s chair, she fills up water bottles, doles out snacks, paints R’s fingernails, and vacuums. We have had a few meals at Perkins, enjoyed Caribou Coffee, munched on stove-popped popcorn, and swung through McDonald’s. We have a list of fun things we want to do before the summer is out, such as visit the Cat Café in Mpls, enjoy root beer floats, and take more walks.
Finally, before I forget: Ev, Rachel, and I headed over to Gillette’s Phalen Clinic in St. Paul so that Rachel could get an EEG. The results of this allowed us to begin weaning Rachel off of her current medication for seizures: Lamotrigene. It will take 11 weeks total to gradually, slowly titrate off this med. I also learned that many young girls who have seizure activity on their records actually have an increase in brain waves, with the possibility of more seizure activity.
So, as I look at our itinerary, it’s pretty full with therapy, school, BOH Day Camp, and more. Fall semester starts on August 26, and Grandview Middle School starts on September 3. My prayer is that I keep the BOH free of speeding tickets, full of fun, and grooving along to each new milestone.
Until August, I bid you a safe, careful summer!
Melissa