Hello from the Bus,
An anecdote: One night, while reading the story of Cinderella to Rachel, I came up to the line, “The emperor sent an invitation to the royal ball.” In my efforts to entice Rachel to read, I paused mid-sentence.
“The emperor sent an….”
“Email,” Rachel offered.
We laughed so hard the bed shook! But she still offered a word that contextually worked, and that is a great sign of hope.
It’s Thursday here at the BOH headquarters, and I’m lucky to have this day off from teaching. Today, I will be assisting my mother in getting ready for back surgery. Yes, that’s right: back surgery. Tomorrow, September 25, at 7:45 a.m. she will undergo lumbar stenosis. I will not attempt to explain it; instead, I’ll provide a link to a video that does that for me:
http://www.parknicollet.com/Surgical-Services/Neurosurgery/Neurosurgery-Videos
The most *amazing* part of this surgery is that the patient goes home on the same day. The dream I have for my mother is that she is able to go on walks without pain, perhaps even travel. I will keep you posted on this with a brief follow up email by early next week.
Here is my mother’s email should you want to send her best wishes: domkat@usfamily.net.
I’m sorry it’s been a while since I have written. All is well…
In August, Rachel was officially discharged from Gillette rehab in St. Paul. She is now back at the Minnetonka clinic. Speech still is leading the way in terms of the greatest improvement. Her vocabulary expands, and her comprehension deepens everyday. When she had her speech assessment, the therapist did a test: the therapist said 100 words, and Rachel was to repeat them back to her. Last December, when Rachel did the same kind of test, she got 45 wrong. Last month, Rachel rocked the test and got zero wrong. Incredible, no?
Another example: While cleaning up the office, she and I were recycling and shredding paper. I’m not sure if she read it or if the word just showed up on her mental radar, but she said, “Membership.” She said it clearly, with each syllable ringing out like a church bell.
Today, while getting ready for school, she reviewed the day: “No therapy.”
“Nope, none today, but you’ll have it…”
“Friday.”
“Right. Tonight we will watch…”
“Fixer Upper!” (This is a home improvement program on HGTV, and we both love it…)
“Yes! And we’ll have dinner and hang out. Where will Daddy be?”
“Second job,” she said, holding up two fingers.
Another new development in Rachel’s life is something called Adventure Club. This is an after school program that engages kids in activities and fun while parents finish out their workdays. It is the exception rather than the rule to have a special needs kid in the program, but thanks to the team at our Community Ed, they were able to hire a para for Rachel. Said Fighter and para are BFFs. Yesterday, the para popped Rachel onto the trike, and I imagine R rode it up and down the hallways at Shirley Hills.
Riding the trike will only help her regain her strength. You see, on August 4, 2015, Rachel had the screws/plates removed from hip surgery done in 2014. (Remember that?) Dr. Walker remarked that Rachel’s bones look good, and the procedure went very well. However, her strength and endurance took a hit after the procedure. Only lately do I see it coming back. For example, when we need to do a transition from the bed to the wheelchair, she has to stand up tall. For the last month, she has not been complying. (Some of this is an obstinate streak, thanks of course to her father, right?) But much more of it is the post-surgery weakness.
But now she is getting stronger as of late. This is good.
In fact, this morning, when I dropped her off at school, her new case manager, a lovely young woman by the name of Teresa, reported that Rachel “likes” being in her stander in the a.m. (What? Is this the same kid who kvetches when I put her in the gait trainer?) Apparently, she tolerates it for 45-50 minutes.
When Rachel can walk again, Shirley Hills will get full credit for providing the positive environment and motivation for R to improve. Thanks, Shirley Hills!
So, in PT at Gillette, we’re waiting for the strength to come back, but the therapists put her on the treadmill. She is strapped into a harness; her body is lowered onto the treadmill so that she can work on the patterning of steps. It is much like what she did with the Lokomat, but this time SHE has to move the legs.
To support the increase in strength, OT will work on the core muscles (again).
Like anything, it just takes time. Her right hand is still improving, and often I see Rachel in her wheelchair, with both hands folded on a table in front of her. The symmetry is a beautiful sight to see in this stroke survivor.
Speaking of time, I’m in week five (already) for teaching. My students are all a treat, and I know all their names. After the summer off from teaching, I am enjoying my profession now more than ever. I’ve noticed that I’m more focused, more energized, and more engaged.
One area that is lacking is writing. I have not been able to return to the blog or the manuscript since school started. Of course, I haven’t given up, but I must find a way to revive my writing engine. Find it, I will, for the BOH didn’t hire me to write a rough draft only! I will make time if I must.
I hope this missive finds you doing well, Hopers. Please let me know how you are doing, too. I will close for now. Your marching orders are to pray and hope for Rachel’s continued strength and powerful steps for walking as she speaks her mind about everything. I also need your happy thoughts on Grandma’s surgery tomorrow morning, bringing total success, pain free living, and traveling too. Finally, send positive thoughts to me as I return to the BOH manuscript with a critical eye and a heart for revision, sending Rachel’s story to an agent and/or publisher.
Thanks for all you do. Much, much love from the front of the Bus!
xo Melissa