November 29, 2015
In the last five(?) years, the Bus of Hope has had its share of peaks and valleys. From a broken femur in 2011 to a freedom of body casts in 2014, the BOH has survived, thrived, and remains alive for the next stretch of the road. It is interesting to go back and review the travel notes for this time of year. They reveal the hard work of hope.
From November of 2011, I reported this:
Jim and Rachel traveled to the U of M for Rachel’s infusion. Rachel is on an experimental drug called Soliris, the single most expensive drug on the market. We all believe that it’s saved Rachel’s life.
While there, Rachel’s nephrologist, Dr. Lydia, paid a visit. She asked Jim several questions related to Rachel’s recovery process. He told her things like how she can feed herself cashews out of a bowl at Grandma Kathy’s house. How she can, while being held by Mom or Dad, push up to a standing position on her legs.
After she gave Rachel a quick look, she turned to Jim and told him how thrilled she is with Rachel’s overall progress. She says that Rachel is taking days and weeks to do what other kids with brain injury take months and years to accomplish. She was particularly moved by how GOOD Rachel looks as well as the muscles in her legs are in good shape.
She is recording her progress for future use of Soliris. And by the way, the improvement in the neurological department was NOT what this drug was intended for, but Rachel’s case may be proving it to be so after all.
This kind of report from a doctor whom I’ve grown to like and trust fills my hope tank. It lights the way out of a dark era in my life.
Now in 2015, she is now lightyears away from that drug. Just a few weeks ago, she requested the Ipad. She was sitting at a small table that was pulled up close to her wheelchair. Her small coffee cup sat in the middle of the table. As I grabbed the Ipad, she moved the cup out of the way so that she could use her favorite device. She did it automatically, without instruction.
Just this week, we were coloring at our new dining room table. She looked a little sleepy. I turned to her and asked, “Are you tired?”
“Kind of…”
That kind of response is contextually appropriate and music to my ears.
From December 1, 2012, I reported this:
One Tuesday afternoon, Grandma Kathy planted Rachel in her special Ikea chair in her den. It was late in the afternoon, and the daylight was fading quickly. Grandma Kathy’s den contains lamps and her flat screen television. None of these were on yet.
Grandma got up to check messages on her home phone, turning away from Rachel, when our fighter proclaimed, “Dark.”
Grandma spun around to look at Rachel who smiled at her progress of a new word, and then she pointed at lamps to alight to chase away the darkness.
Now, in 2015, Rachel can ask (or demand) that I “turn the channel” on the television. Or the longest one, “I want to be on the couch.” And now, we are working on questions. If I drop the bar of soap in the shower, she can ask, “Where is it?”
From 2013, I listed the following speech high points:
As of late, the vocabulary is the strong point as we see it. Jim was putting her pajamas on the other night, and as he was narrating his next move, he said, “let’s get your pants off,” and Rachel said, “Off.”
The night before, Jim was getting Rachel ready for bed. He was struggling with the shirt, and he reported to her, “Rachel, I’m having difficulty getting your shirt off.”
Rachel said to her Daddy, “Duh!”
When she says my name, it alternates between Momma and now Mommy. I don’t know why this thrills me, but just the variation of the word suggests that she’s capable of a change up.
Currently, I wish I could report more success in her walking. That’s not to say she doesn’t do it: she is in gait trainer and stander everyday at school. I wish I could report that she can get up out of her chair and walk with the assistance of a walker. Not there yet. That is going to be quite the mountain to climb.
Her right hand and arm gain more range of motion. I see her stretch Miss Rightie more each day. When we read in bed, I ask her to touch the page with her right hand before I turn it. Books are a great motivation.
As we look forward, we have a lot of ground yet to gain. Furthermore, as I reported in the last update, the shadow of epilepsy still lingers. She has had a few “episodes” since I wrote last, and that suggests that the wires of her brain are still crisscrossing. We had a few close calls in October, and in our conversations with Dr. Williams, her neurologist, we have to be ready to put her on a medication to suppress the seizure-like activity so that her brain can continue to heal. At this very moment, she is fine. We aren’t ordering meds today.
She is also getting bigger and heavier. This means that Grandma Kathy’s role is diminished as she cannot lift her alone. Soon, I will contact the U of M’s Occupational Therapy school to find a strong, young student to hire as Rachel’s PCA . This benefits us as a family and that student as s/he will earn money and hours toward the educational certificate. Keep your hopes and prayers on finding a new person to add to the BOH’s support.
Rachel continues to show me her awareness of her body and mind. She still has a long way to go, but when discussing her seizures, I asked her if she knew what part of the body the seizures came from. She said, “brain.”
Her ninth birthday is in a week. Clearly, this is not the road I hoped to be on when I gave birth to her. But I’m not ever going to give up on her recovery. Here’s an image, and I’m sure I’ve written about it: Right before she got sick in 2011, we bought baseball gloves for Rachel and Mom. They still are in her closet, collecting dust. And sometimes I catch a glimpse of the blue whiffle ball in the corner of the basement. I will continue driving this Bus in the hopes that we play catch with those mitts.
Well, those are your marching orders. Let’s make sure that those mitts aren’t riddled in dust for life.
On behalf of the BOH, Melissa