It Seems Like It Took Forever To Get To This Point…

You might remember several months ago, I did a blog post about my son’s battle with a disease called Shwachman-Diamond Syndrome. You may also remember the fact that he’d been on a feeding tube since Christmas.

My little boy, hiding

Well, we’ve had some pretty decent progress in the last couple of months.

My little boy has gone from baby nearly completely dependent on his feeding tube to a toddler who had the gumption to practically insist on having it removed. Permanently.

As of a week ago today, we haven’t been using the feeding tube.

This may seem like a strange post to do on a writing blog, but let me tell you–this is something I’m rejoicing about. For 7.5 months he’s had this stupid thing. When he first got it just before Christmas last year, they told me it would probably be three, maybe four months.

Before we knew it, spring, then summer was here. Do you realize he’s spent more time with it in than out in his short life?? He’ll be 13 months old in a week or so, and we’ll still have another two months to go before he’ll equal out the time!

So, let me finish updating you on his health.

On Friday, we had what we call a combined clinic. Three departments who are following his progress at the hospital we go to all came in for different parts of the same appointment and discussed his health with TMOTH and me. They said he looks good overall, and are so pleased with his progress, they don’t want us to come back for 6 months.


This is absolutely huge for us, especially since we’ve gotten used to seeing almost all our doctors once every 4 – 6 weeks. We will, of course, continue to follow up with our personal doctor, and keep one of the doctors updated on illnesses, weight gains/losses, and call with questions. And, when we go back, our little guy will be having his first bone marrow biopsy. That’ll be the sucky part, but we’ll hope/pray that it’ll just be one thing we have to live with and nothing bad will come of it.

For the time being, if you want to pray for our little guy, just pray we can get into and through cold/flu season unscathed. The theory is the fewer times he’s sick, the less hits his bone marrow will take, and the less stressed it will be, which may reduce the likelihood he’ll develop leukemia in his lifetime. Everyone in our family will be getting a flu shot, and he’ll be getting a pneumonia shot as well. If you’re family or friends and reading this, we beg you to get a flu shot–not only for your health, but his.

** ** ** ** ** ** ** ** ** ** ** ** ** ** ** ** ** ** ** ** ** ** ** ** ** ** ** ** ** **

I usually don’t do a two-topic post, but will today, just for the sake of getting it off my chest.

My writing has been coming along beautifully. While I’m still behind on my CCBR reviews (sorry Kristina and Tanya!), I’m attempting to catch up there. Too bad the short books are the easiest to read and review… I’ve just got the longer, chapter books to work on now!

But, more importantly, I took the plunge and signed up for the Port Yonder Press mentorship program for the 2011-2012 season. So far, I’ve written my first story (of the four required) and it came out rather well, if I do say so myself. The goal is to get it worked into a publishable/saleable shape. So, right now, my goal is to sit down and figure out who would be the likely takers for this short project (under 1000 words.) Then, I need to work on my next project, which will be longer. My exclusively-novel-trained brain is definitely getting its exercise working on these shorter projects.

And, finally, I have been once again actively working on the 2nd Draft of “Cora’s Song.” Have I mentioned how much I really love this story? Well, I really love this story. 🙂 I’m nowhere near done, and have already written about 85K (as of Friday last week) on the project. My first draft? 70K. As I said on my author page, I see a lot of editing in my future, since I think this could easily clock in around 110 – maybe even 120K. The really awesome thing is that even though I’m actively outlining, staying about 10 chapters ahead, I’m coming up with some cool ideas to incorporate when I go back to edit further.

Now if I can just get all my notes in one place

Until next time,


3 thoughts on “It Seems Like It Took Forever To Get To This Point…

  1. I'm so happy to hear that your son is showing progress! Nothing warms my heart more than to see God walking along with his children as they fight for a better existence. I'll pray for your family, and I wish you good luck in your writing endeavors 😀


  2. Praising the Lord with you Liberty! Time and time again He assures me that His watchful eye is on our little boy.

    Love and prayers, mom Speidel


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