Monthly Archives: July 2016

Stories from Camp

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Laynie and Owen

One of my favorite stories from camp involved our daughter and this sweet boy Owen. On our first night there, we were having blue bell after the welcome ceremony and a little boy we had never met approached our table. When he walked up he paused looking at Laynie and then turned to speak directly to Kevin. The pause was long enough to be awkward so we weren’t sure what was about to unfold.

This is how the conversation went between Owen and Kevin:

Owen: Hi, I’m Owen, what’s your name?

Kevin: It’s nice to meet you Owen. My name is Kevin.

Owen (smiling): Kevin, is this your daughter? (pointing to Laynie)

Kevin: Why yes it is Owen. Her name is Laynie.

Owen: She’s really cute! (Now he and Laynie are smiling and giggling.. Kevin not so much)

Kevin: Owen, how old are you?

Owen: I’m nine, sir!

Kevin (shaking his head): Owen, I think you’re a little too old for my daughter.

Owen, who never stopped smiling, gave Laynie his blue bell hat to which she replied with a giggle and then threw it back at him. Kevin was pretty pleased with that response. After that Owen told Laynie he’d be seeing her later and went back to his table…laughing the whole way.

Had I known this conversation was going in that direction, I would have recorded the whole thing! Kevin was completely unprepared (as were the rest of us) for this interaction and the whole thing was just priceless. Especially since Kevin always says that Laynie won’t be dating until she’s 35 years old.

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Gideon and his STMs

Another one of my favorite stories from camp is how God uniquely places specific people in our lives. There were more STMs (short term missionaries) at this camp than there were last year. And any one of them could have been assigned to my son. But by the grace of God and much prayer by the Joni and Friends staff, Gideon got assigned two STMs and they were both physical therapy students from Hardin-Simmons University. It could not have been a more perfect match!!

Caitlyn and Taylor were so good with Gideon. If there was an activity that Gideon couldn’t participate in (like making crafts) they just took him to the pool. When he needed a nap, they rocked him and they even became experts when it came to feeding him… which is NO easy task! I know those precious girls were initially nervous to care for/entertain Gideon, but they did such a great job. They even did some PT with him. 🙂 Kevin and I felt completely comfortable leaving him in their care.

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Issac

So another one of my favorite stories from camp is about Laynie and Issac. Isaac has what they call CBLC, or Cobalamin C deficiency. This means his body can’t process the vitamin B12 which feeds the nervous system. He needs B12 shots daily to survive. It’s a genetic disease and it affects all kids differently. Some are completely blind, some are very mentally challenged, some have seizures..

We met Issac and his precious family last year at camp and it turned out that we lived only a few miles from one another. Small world! Anyways, last year, Laynie was very hesitant around Issac. Sometimes he can be aggressive and there were times when I could tell Laynie was not sure what to expect. However, after knowing this family for a year, I watched the beauty of this friendship unfold while at camp. I noticed Laynie was wanting to be around Issac more and help him with different things (not that he needs her help though…he can do quite a bit himself). She loves to play his games and entertain him.

Watching these two just reaffirmed what I already know to be true. God doesn’t waste any of our circumstances. Anything that seems sad, tragic or horrible to us, God can still bring beauty from it.

I don’t know what Laynie will be when she grows up someday, but I do know this- because of her brother Gideon, and her friends like Issac, she will have an empathy for others that some adults might never achieve.

May we all learn to love like our kids… unconditionally.

Update on Gideon’s Seizures

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So here is a brief update on Gideon’s seizures… Last time I wrote about his condition, we were exploring our options for how to treat his seizures. Our choices were high dose steroids, anticonvulsants, or CBD oil (Cannabidiol). Our neurologist could not prescribe CBD oil, but he told us to check out a website called Realm of Caring and so we did. This site provides the public with current research on CBD oil as well as companies that safely manufacture a quality product.

Since CBD oil is legal to purchase (because they remove the THC) and since the side effects are so minimal when compared to the other two options, we decided to try it. We chose the Charlotte’s Web Hemp Extract and began dosing Gideon June 5th. We didn’t see a huge improvement right away. However, after about a week, we noticed that Gideon was only having his cluster of seizures every other day. So we slowly increased his dose each week. Gradually we saw fewer clusters and as of the first of July, Gideon appears to be seizure free!!

The more I research CBD, the more impressed I am with how this product appears to help with  more than just seizures. I would encourage anyone who is considering CBD to do your own research. For now, this is working for our son. Not only have we seen his seizures go away, but Gideon is actually eating more and appears to be more alert.

As for his low platelet count, we go back to the hematologist in August for a retest. For now, the doctor isn’t worried about Gideon’s platelet count of 88K. All of Gideon’s other numbers were only slightly off, but not significant enough to be concerned. Thankfully the doctor was certain that there was no cause for concern regarding any type of cancer. Praise the Lord! And who knows… maybe this CBD oil will help his platelet count?? I guess we’ll have to wait and see. I haven’t seen any research on that.

But a mother can always hope, right?