Buzzing

Many things around here are buzzing…new knowledge I am trying to cram into my brain and then hold on to, new ideas to help Abbie, and then…literally, bees.

I’ve been delayed a few (more) days from posting because RJ and Kyle have required my OJT-nursing skills. We were at a friend’s house Saturday evening, preparing to share a relaxing meal and unwind. Most of the kids had gone out the back gate and were hiking the ridge right behind the house. Matt beckoned me up to the second floor of the kids’ fort to take pictures of the hikers. Through my lens, I saw Kyle rip his shirt off and start swinging it madly. In that second between seeing it, and figuring out what was going on, I saw RJ pinned down by the swarm of bees that Kyle was attempting to get away from.

Because the bees were attacking his face, RJ had to close his eyes, which made it impossible for him to move down the steep slope. Kyle, also being attacked, could not reach him. I was screaming for all I was worth, and never have I felt so utterly helpless.

We eventually got him down and right into a cold shower. We began getting the stingers and live bees out of his hair and off his body. I stopped counting stingers on his head when we reached 50. There were at least 20 elsewhere on his body. His pain was unbelievable and unstoppable. The pediatrician told us to take him to the ER because of the number of stings. As I was getting stingers out, he told me, “Mom, I didn’t think I was going to be able to get down. I thought I was going to die up there.” That broke my heart too much to tell him that I’d had the same thoughts.

The ER had the I.V. prepped before we got there because they’d assumed RJ would look like a basketball-head upon arrival. Amazingly , he didn’t, with the major effect being repetitive vomiting, which helped him get all the toxin out. He was fairly calm until the doc mentioned the I.V., at which point he screamed again. Thank goodness for sublingual medicine and a flexible doctor!

Unfortunately, Kyle got lost in the rush to help RJ. Walking around saying, “I’m fine”, he convinced us that his measly 10 stings were nothing to worry about. Alas, he was the one to awake the next day with an eye swollen shut and a hand that looked like a water balloon.

Just another day in our life….

The bees buzzing in my head are the friendly kind, and I am grateful, just overwhelmed. Abbie has required a change of diet recently, which has prompted a whole new round of nutrition research. Things just seem to sink in at different times, because it’s impossible to take it all in at once. This iteration has focused on enzymes. I had been giving her Ox Bile for quite a while, but recently discovered that most of it is destroyed in the stomach, which is why it comes in capsules that carry it to the small intestine (which I, of course, open and discard.) Hmmm. What to do?

Enter my favorite kind of author…another mom! Karen DeFelice has written a few wonderful books about enzymes, gut function and neurological issues. If you are a caregiver, I HIGHLY suggest her books. The one I read is “Enzymes: Go With Your Gut.” She has done what she writes about with her own children. So, Abbie and I are adventuring down this road together now. Mrs. DeFelice included a “Go Low and Slow” approach for introducing enzymes, most likely targeted for impatient mothers like me, so I haven’t even started all of the ones I am curious about. I will keep you posted on what we see.

Last week I was able to spend a couple of days in an intensive anatomy class, taught by a PhD anatomist. I learned so incredibly much about the brain, and what a miracle of architecture and engineering the human body is. But, we also had some interesting side conversations.

The professor related the incident that sparked his interest in neuronal research, recalling taking his son to see a showing of Star Wars that was delayed by projector problems. When the theater was at last quiet and dark, a young boy using a walker entered. There was one wheel that went “squeak….squeak…squeak.” But, as the boy noticed the movie starting, the wheel went “squeaksqueaksqueak” as he ran to his seat. Finding his row, he dove for the seat and let the walker just roll to the front of the theater. The professor was impressed by the fact that this boy, with an obvious neurological deficit, was living his life full-steam, and resolved to put his energies toward figuring out how to help kids like him.

His research has included attempting to grow neurons in the lab. Not only did they grow, he said they “grew like crazy!” He, like so many others, is convinced that it’s the environment the brain is in after injury that limits recovery, not the brain’s capabilities. The challenge now is figuring out the characteristics of a post-injury environment that tell the neurons not to grow.

We know one of them is structural misalignment. I was stunned to see how perfectly each lobe of the brain, and the brain stem fit into custom-molded parts of the sphenoid bone. The first time we worked with Maria, the misplacement of Abbie’s occipital lobes was her primary concern. We have seen tremendous changes since beginning this work, and I think returning the structures to their proper places is a big contributor to the success so far.

One other inhibitor is a protein appropriately named “Nogo.” Remediating the action of this protein may hold promise for spinal cord and brain injury survivors. While I was researching it last night, I hit upon a link that was an answer to my prayers. www.cnsfoundation.org is the website for the Children’s Neurobiologial Solutions Foundation. I realized that I had found kindred spirits as I read “Brain repair and regeneration are possible!” They have assembled an impressive Scientific Committee, with researchers from institutions like Harvard and Johns Hopkins, and are focused on FIXING brains, not working around limitations of injured ones. There is a parent group there, so I wanted to pass this link on to all the families like ours who still, and will continue to believe in solutions and recovery!

Abbie continues to teach us daily. And, along with the lessons, she freely gives love, smiles and joy. Today, after reading “Love You Forever” for the gazillionth time, I asked her what kind of house she was going to have when she grew up and moved into one of her own. She was very excited by this conversation, but remained pretty ambivalent about house features until I got to “fireplace.” She about jumped out of bed! So, I guess she is willing to live in a tent as long as it has a fireplace and people who love her!

I pray your summer is off to a wonderful start — can it really be June already??

One thought on “Buzzing

  1. I love reading all your newsy blog entries. You never cease to amaze me my friend, where do you find the time to do so much research? I hope the boys are all on the mend and doing better after their bee stings. I hope this summer will find many relaxing days. Try to go to the beach often, have fun, relax these days with your children they will be gone before you know it. They grow up so fast!

    Love ya,
    Sue Searles

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