It's a New Year!

Anyone who regularly reads this blog knows just how crazy my last 12 - 18 months have been. Being told my son needed a bone marrow transplant pretty much threw everything askance since August of 2012. However, now the light is starting to show at the end of the tunnel. As of January 1, he was 8 months post transplant, and doing AMAZINGLY well. All of his doctors seem very pleased with his progress, and while we have a follow-up planned in Seattle, when we return from that, he should return to treatment with his regular hematologist for Shwachman-Diamond Syndrome.

Even though clinic appointments are far too regular still, with no end in sight until mid-late spring, that light at the end of the tunnel is starting to shine a glimmer on the future.

While I'm not going to guarantee I'll be posting here regularly--even pre-transplant, it was beginning to be a gamble--I'll post as much as I'm able to. But, this is what my goals are for this year where my writing is concerned:

1. Write five days a week for at least an hour. To accomplish this, I'm going to try institutiting an early-morning writing time. Between appointments, and the fact I'm a stay-at-home mom (and my daughter will be starting homeschool Kindergarten sometime this year), early mornings are about the only time I can guarantee I'll have uninterrupted time, five days a week. I instituted this early morning time on the 30th of December, and so far, I've gotten up four of the five days, and wrote/edited for three of the four.
2. Publish. This one should go without saying, but I have a very aggressive goal to publish several short stories/novellas/novels this year. I'm not going to specify my exact number (partially because I'm not 100% certain of the exact number, but also because I don't want to have life happen and not be able to follow through), but when I say it's aggressive, it is. A body at rest tends to stay at rest, and a body in motion tends to stay in motion. I'm trying to put myself into motion so that it becomes just part of it that I'm constantly writing, editing, and publishing. Listening to the Self-Publishing Podcast since May of 2013, and reading "Write. Publish. Repeat." (by the same guys behind SPP) in December really motivated me. I can do this. It just takes momentum to get started.
3. Set a production schedule. The only way I can stay on track is to know what I expect myself to do. Listening to Joanna Penn's The Creative Penn podcast (also started around the same time as I started listening to SPP--I think I learned of one from the other) has helped me see that a production schedule will help me stay on track and on purpose. I'm apt to take rabbit trails, and distractions are very easy, so knowing I've GOT to work on this project rather than that one may help keep me on track. I say may because who knows. ;)

I have other goals, like getting my feet in order where I can begin exercising again (I was told I had a very bad case of plantar fasciitis in my arches in December, so I haven't been walking the dog at all) and sticking to a gluten-free diet (I've lost about 5 pounds since Thanksgiving just by going gluten-free, and 99% dairy free!) But, I'm really mostly focused the writing goals. Hopefully, on January 1, 2015, I'll be able to look back at 2014 with a smile.

How about you? Do you have any new goals you want to accomplish in 2014, writing-related or not?

Until next time,

Liberty

P.S., if you haven't done so already, be sure to pick up a copy of CSI Effect! 

On Hospitals

Life sure does take the craziest paths sometimes.

For instance, I've only been admitted to the hospital twice--and both were avoidable occurrences (the births of my children.) I actually hate hospitals. When I was having my son, I remember vividly telling my doctor that I just wanted to go home--that's how much I hate hospitals. My words were met with a laugh by all in the room, but I was dead serious.

So, you can imagine my consternation with the amount of time I've had to spend IN hospitals in the last two years. Yes, I understand they're necessary. Yes, I understand that it's been for the best that my son is there periodically, and that most of his doctors are based at hospitals.

Doesn't stop my slight germaphobia.

I'm pondering this aspect of my personality more as the day gets closer that we'll be taking our son out to Seattle for a bone marrow transplant. While we won't be inpatient for 4 - 6 months, he and I will be in hospitals several times a week. How will that work, especially since I get a bit of anxiety when I'm in the hospital for a long time (i.e. more than two days)?

Fred Hutchinson Cancer Center, Seattle, Washington

I have decided that there are a few things I'm going to do while I'm in Seattle. Right now, since I'm mostly writer blocked (hence no blog posts for the last two months!) all of these are reading and crafty. I figure I'll have a lot of downtime. Currently, my list of things includes: learning to knit socks, learning Tunisian-style crochet, possibly learning to hand quilt, reading all of the James Bond novels by Ian Fleming, and reading all of the Sherlock Holmes stories by Sir Arthur Conan Doyle (there was a freebie on Amazon.com a while back and I've already started it.) I'm hoping these activities, possibly coupled with writing some short or novel-length stories, will keep some of my anxiety at bay... and keep me from going bananas while being surrounded by doctors, nurses, and germs.


Until next time,

Always with the Questions...

"What do you write?"

My husband and I were in a doctor's appointment with a doctor who may potentially perform our son's bone marrow transplant. He had asked me if I would be the primary caregiver while in the hospital. "Yes," I reply. "I'm a stay at home mom and a writer."

That's when I got THE QUESTION.

I've gotten it over the years, so the reply has started to just roll off my tongue.

"Murder mysteries, book reviews, and the occasional sci-fi," I say with a smile.

The doctor and transplant coordinator laugh, and the doctor says, "Well maybe while you are here, you will get an idea on something to write!"

Sadly, I thought later on as we left for the parking garage, he's probably not far from the truth, especially given my propensity for hating doctors and hospitals in general, and this situation in particular. And, I tend to have a running list in my head of things that will be useful down the road where stories are concerned.

But, then, you never know where that one little detail may come in handly. So, it's good to stay on your toes.

So, will a scenario with a murdered doctor in a children's hospital come up in my writing? You never know... Most of the time, I don't always know where my brain is headed. :)

----------------------

By the way, if you're in the United States, don't forget to vote tomorrow. And, if you're a Republican, a new law passed by Congress gives you the right to vote twice, three times if you're in Chicago. ;) j/k

Until next time,

Liberty

How High Can You Jump?

So, things are moving a little faster than anticipated.  Last week, I stated we hoped to go out of town soon for my son's treatment. Within TWO HOURS of posting last week's blog, I had a call from the hospital. "Can you come see us next week?"

Next WEEK? Are you KIDDING ME? Do you realize we live 2,000 miles away????

It's really amazing how things can come together in just a few days with less than 10 days warning. People have stepped up to help us out, which has been the biggest blessing of all. I've been truly stunned and humbled by the assistance we've received. It's made a stressful time less-so.

Photo by Vox EFX

I'm a little anxious about the trip... mostly because I've read too many horror stories about the TSA, so the thought of going through security with 2 strong-willed kids, and a headstrong momma (me), I'm a bit afraid something will happen that will make the news.

Seeing the doctors, being on the plane, that doesn't bother me. Being subjected to something that in my mind is a direct violation of my 4th Amendment rights (that's the one about illegal search and seizures, folks) puts me on edge. Heck, with my background, I should be scared of being on an airplane. My dad has worked for one of the airplane manufacturers for most of my life in the department that fixes crashed airplanes, so I've seen more crash photos than the average person. (I am also more than aware that the most dangerous place for a plane is on the ground--not in the air. More damage is done by stupid ground people than pilots that have been drinking too much. Maybe sometime, I'll tell you my favorite story that my dad repeated to me, about a "crash" on the ground...)

Really, I'm glad that we're going out now rather than later. Waiting makes me nervous. But, it does make me concerned that they felt so strongly about his case that they felt the need to get us in this soon. Maybe it's not as serious as I'm fearing, maybe they're just being pro-active. (Please, please, please let this be the case!) Still, I'll be glad when we're back on the ground in good ol' Kansas City...

Until next time,

Liberty

P.S.: I've received a lot of questions about how people can support us during this time. Prayers are always welcome! But, additionally, if you're between 18 & 44 and in generally good health, you can get tested to become a potential donor. Search for a donor drive at this link, request a test kit here, and maybe even consider hosting a donor drive! Marrow.org has additional information, just surf the site and see what's there! Also, if you know a woman about to have a baby, urge her to donate her umbilical cord blood for use in transplants (and for research.) -- LS

Life Goes On

Life goes on.

This is the lesson I got in the last week.

I also got this lesson: don't count your chickens before they hatch.

What am I talking about? Is my son's health okay? What's going on?

Well, here's the long and the short of it: life continues happening even in the midst of trials. And it can make it completely crazy, but it can also give you bright spots during the times you're in the deepest, darkest canyon.

Take for example what's happened in the last few weeks. If you read one of my last blog posts, you know my son's been marked for a bone marrow transplant. Not the most fun thing, especially when the two-year survival rate for someone with SDS is somewhere between 45 and 60%, depending on what method and drugs are used to prep for transplant. For this reason, my husband and I decided to get a second opinion, since we want to be absolutely sure that this is the road we'll go down.

Which led to a flurry of activity, and ended with me having a lengthy conversation with one of the doctors who is probably in the top three in the nation, if not the world, with experience with Shwachman Diamond kids. Of course, we can't stay in Kansas City to get our second opinion. After speaking with this doctor, which I'm going to call Dr. S (because her name is too long and difficult to pronounce!), it was decided we'll be heading out of town, we know not when, for that second opinion. Hopefully, sometime in the next few weeks to a couple of months.

So, while we're waiting on the answers, we find out our daughter is NOT a match for her brother, which means we have to go to the national registries. Mixed feelings about that. Glad she doesn't have to go through that, but at the same time, now we don't know whether he'll have a match.

Enter: a bright spot.

You know how a few weeks ago, I said I was giving up on "Homebody"? That I'd decided it was time to tell it goodbye, thanks for the memories, all that? (Here comes the "don't count your chickens" part.) Yeah, I may have spoken too soon.

With everything going on, I hadn't checked my business e-mail in 6 weeks or so. Last week, I decided I'd better do that because I *thought* I may have a short story out somewhere and probably should see if I'd received any mail on that.

Well, I didn't have anything out on my short.

But, I did have a reply from an agent I'd sent "Homebody" to back in--get this--February. FEBRUARY! This was a query only agent, which means I didn't send anything to them besides a letter. I saw their e-mail in my spam box, and thought, "Oh, here's another rejection." But I opened it anyway.

First, there was an apology for the long time in getting back to me. But then I read these words: I'd look at the first 75 pages and synopsis after 8/20 if you don't have an agent.

Did I read that right? I got a request for a partial?

HOW COOL IS THAT?!

So, the day I actually read this, I went around the rest of the day with a stupid grin on my face, unable to do anything. After that, it's been a mad rush--is everything ready? I did some changes to the opening scene--does it read okay? And about that synopsis, I never was happy with it, so let's rewrite that on the fly.

And, I have to admit: I haven't sent in anything yet. But, I'm close to doing it. Hopefully later today. I'm nervous, excited, and at the same time, if this is meant to be, let it happen. Maybe I wrote off this book too soon. If not, maybe I'll get some decent feedback, and perhaps, the agent would be willing to look at another project when I've got them done. We'll have to see.

Funny thing is, I looked at the day they sent the e-mail. It was the day before my son's biopsies. I find that kind of meaningful, but that's just me.


In closing, I thought I'd share something that proved especially meaningful last night. My husband and I have seen "The Fellowship of the Ring" dozens of times. We saw it in the theater when we were dating. But, we hadn't watched it in a while due to the demands of parenting. Watching an episode or two of "Castle" or "Stargate" in the evenings is all we have time or energy for, let alone a 3 hour movie!

Near the closing of the movie, Frodo says, "I wish the ring had never come to me."
Gandalf replies, and I'm paraphrasing, "So do all who live in perilous times."

While I wouldn't say my life is perilous, at least not at the moment, it hit me. I could really get Frodo in that instant. Since we found out our boy has SDS, I've prayed, "Don't let him need a BMT. Don't let him have cancer. I can handle diabetes, but please don't let him ever have to face cancer treatment." Not much different than Frodo's lament.

Oh well. I have a request for a partial, and while it doesn't make my troubles go away, it does make them a lot more bearable.

Life certainly goes on.

Until next time,

Liberty

Topsy-Turvy

The last ten days have been anything but normal. And, the news TMOTH and I got last week has definitely turned our world on its ear.

Our son is headed for bone marrow transplant.

When I got the news a week ago, I fell apart. My world has been rocked. How could this bubbly, hyperactive, absolutely most adorable little boy in the world need such a risky procedure?

But, at this point, he does. We've got a lot of steps to go through before the ultimate decision will be made. And, we have to find a donor--it's not certain any of his immediate family will be a match. The likelihood is 25% for his sister, and 2% for both TMOTH and me--29% chance that one of the three of us will match.

The dust is just starting to settle and I can think straight again after getting the call last Tuesday. But most of my energy is being spent trying to figure out what's next, and looking down the road to the next few stages of treatment. Still hoping that when we go in to do another biopsy prior to transplant that the numbers have changed and we can hold off. I'd rather deal with biopsies every 3, 6, or 12 months than transplant.

I don't know what this means for my blog, or even my writing in general. I know I'll need to write to deal with the stress. And it seems like I've had three major things happen in just the last few weeks: first, deciding it was time to say goodbye to "Homebody" and move on; second, a personal decision to work on something I'd been struggling with for a long time; now, this. All in a matter of just a few weeks.

I'll check in when I can, try to post as I'm inspired or led... and this blog may turn into more of a journal of our journey, at least for a while.

Thank you, loyal readers, for any prayer you happen to send my family's direction.



PS: If you should feel so led, please consider becoming a marrow donor. It's an easy, painless process to get on the registry (although there is a small fee unless it's associated with a donor drive). Please check out Marrow.org for more information. -- LS

Two Years... and Counting...

Two years ago, my house was blessed to have the most precious (and I'm not biased in any way) little boy come into our home. His labor and delivery were brief (2 hours of labor, 3 minutes for delivery).

And when I saw him for the first time, I was stunned he was a boy (I'd really thought we were having a girl.) But, I thought he was perfect in every way.

I still cling to that thought every now and then. Now, I know he's not perfect (he's got the ornery streak to prove it!) And, I know he'll never be the same as other little boys--not just because God made him different, but because of what's different about him at a cellular level.

When I was growing up, I can't remember having birthday parties. Sure, I had a girlfriend over most every birthday, or went to spend the week of my birthday (which strangely almost always fell over spring break) at my grandparent's house in the Ozark's of Missouri. But, I never really had parties that I can remember.

Alexander

With Alexander, we don't know how many years we're going to get with him. He may grow up, have a family, and get to raise his own children, see his grandchildren.

I pray this is the case.

But, I also am all too aware that every birthday he has may be his last one. And, as a mother, this chokes me up. As I'm writing this, I'm crying, even though I can hear him and his sister in the next room, playing.

You see, his condition, Shwachman-Diamond Syndrome (SDS), puts him at a high risk of developing leukemia. I've talked about that before. Right now, until he has his next biopsy next month, we know he's at an even more elevated risk.

And, should it come to it, and he requires a bone marrow transplant, I know he's got but a 50/50 shot. We saw it with another SDS family just in the last few weeks. Their son had a transplant, and sadly passed away a few days later. He wasn't much older than our little guy.

It scares me, more than I thought anything ever could.

So, on Saturday over the weekend, Alexander turned two. And, we celebrated, as we expect we'll be doing not just with him next year, but with his older sister when she turns four in October.

While both of them can drive me nuts, and some days I wonder if it's really worth it, something in the back of my mind reminds me that all of our days are numbered. Only God knows how many days we get. And even though writing my stories are important to me, blogging and social networking are fun and even important tools as I try to get the engine going on my writing career, there's things more important.

Until next time,

Liberty

P.S. -- I should have mentioned this when it posted, but I guest blogged over on Linda Yezak's site about 10 days ago. Should you get a chance, go check it out.

Rare Diseases Day

Tomorrow, February 29th, is the 5th Annual Rare Diseases Awareness Day.

One year ago, I'd never heard about Shwachman-Diamond Syndrome.

Today, I live with its effects every day, and see its challenges in the face of my son.

Please help raise awareness. It's not just cancer and obesity that creates health challenges. Rare disease--like SDS--together are just as common as cancer, obesity, and heart disease. But because the individual diseases affect only a handful of people around the world, you never hear about them--and few people fund research simply because they don't know about them.

It's Coming!

... and I don't necessarily mean in a good way!

Since my son was diagnosed with Shwachman-Diamond Syndrome, we've known one of these days, he'd be having a bone marrow biopsy (BMB).

Well, it's official. He'll have one late next month.

This has left a lot of our family and friends with lots of questions, some of which we don't know how to answer (and are fumbling around trying to at least sound somewhat intelligent when we respond.) Why does he have to have a BMB? Will he have to have it multiple times? Will he be sedated? How long will he be in the hospital? What are they looking for?

I asked my online support group about it, and they pointed me to these two resources:

Bone Marrow Biopsy and Aspiration
Bone Marrow Biopsy Day

Am I glad I asked! I think both resources answer more questions than even I'd thought to ask. :)

Probably our next biggest question is how long it'll take to get the biopsy results--TMOTH has asked this, and I told him I had no idea, but we'd probably have results by Easter--let's hope sooner!

More on health: our son's doing better, and it's been 2 weeks since he's had a CBC (Complete Blood Count) run. We go back tomorrow for another CBC. We're watching his hemoglobin slowly rise, and I'm hopeful it's closer to the normal range. As an aside, our son isn't the only person I've learned of in the last few days with low hemoglobin levels--a friend's child was down to 6 last week (never heard for sure if the child had a transfusion or not) and a member of TMOTH's family also had their hemoglobin drop and had to have a transfusion. At least I can understand the worry when it happens now!

Next week, I'm going to try to get back to a post on writing or some such thing. Maybe an update on those resolutions I wrote about a few weeks ago. (Hint: I've lost some weight, but have no clue why! I'm not exercising like I know I should be...)

Until next time,

Liberty

Follow up to Gifts of the Heart

Just wanted to let everyone know that my son's hemoglobin level has come up to 7.8. Normal range is 12 - 18 for ANYONE, so he's still anemic. We're waiting on his hematologist to get back from vacation to give us any further instructions, but the nurse seemed pleased that it came up 1.5 points in a week.

Overall, we're pleased, but know he's still got problems. Still, it's enough to be encouraged.

Until next time,

Liberty

Gifts of the Heart

Merry Christmas, a day late! Or, as our friends across the pond may say today, Happy Boxing Day!

I hope you've had a most blessed Christmas... and managed not to kill any of your family. ;) Or is it just me that struggles with those feelings sometimes? (tee hee hee, just kidding!)

Today is my regularly scheduled post for the ChristianWriters.com blog chain, and to be honest, the topic (Gifts of the Heart) kind of has me stumped. But, I shall charge on!

When I read the topic (admittedly, about 5 minutes before I started writing this post), I thought, huh.

So, rather than do a traditional post, I think I'll leave you with a few pictures of some of the things that warm my heart. I hope you'll find them as endearing as I do.

 

Obviously, these are my kids... and my dog. :) I'd put TMOTH's picture up, but I'm not sure if he'd be okay with it. 

So, my family is my gift of the heart... I hope you can say the same for yours!

In a little sidenote, I want to give a brief update on our son's health. Last week, we thought everything was going well, and then we went in to see his dermatologist, who, on a whim, ordered some blood work. Our guy has been sick most of the time since Thanksgiving, and when they ran his hemoglobin, it was 6.3. Normal is between 12 and 18, so he's exceptionally anemic right now. We have his blood retested tomorrow, and his hematologist (blood doctor) is watching this closely. We've managed to get through Thanksgiving and Christmas without being admitted--and seeing as those were both spent at the hospital in 2010, this is a great thing. Hopefully, we'll make it through the remainder of 2011 without being admitted again! (Now, if we can make it through cold and flu season...) 

If everything is okay, I guess you'll hear from me next in 2012... wow, can it really nearly be 2012? It barely seems like I was getting a handle on 2011! If for some reason things aren't as good as we hoped, I'll try to post a short update on Tuesday or Wednesday. 

(But I'm hoping it'll be 2012 before you hear from me again!)

Happy New Year!

Until next time,

Liberty

A Few Thoughts on Parents of Special Needs Kids

Before our little boy was diagnosed with Shwachman-Diamond Syndrome, I never really gave much thought to the needs of parents with kids with special needs. And while I would be the first to say that SDS isn't the worst possible diagnosis (and some would probably argue until the world ends that SDS makes him a true "special needs" kid), it also has given me a glimpse into the lives of other parents that do have truly special needs kiddos.

My Two Munchkins in a recent picture

With our daughter, if she had a cough or a sneeze, I never really had to worry it would turn into something more. (I did, of course, but she was never seriously sick.) If she missed being in the nursery at church one week, she'd be back the next week, maybe with the tiny tendrils left of a cold, but virtually all better.

Now, if my son coughs in the middle of the night--even if it's just once or twice--I wonder if he's coming down with a cold. Or the flu. Or worse. Will he have to be admitted to the hospital--again? How long will he stay?

And, it all runs through my brain in about one-half of a millisecond.

Every special needs kid is different. Whether the kid has SDS (like ours), leukemia, Downs Syndrome, or something else more rare like a muscle atrophy condition, there's an adjoining parent or two who struggles with the idiosyncrasies of their child's disease. With us, we've had to learn to accept the medications given daily (which I think is probably the same with most parents of kids with special needs) and the fact there will always be that "What If?" question in our brains. And the specialists that will have to be involved with his long-term care. And the fact he may not be as tall as his mom when he hits adulthood. (I really hope we're at least at eye-level. I'm a tall woman--5'8"--but I can't imagine having a child shorter than me when they're an adult!)

While most people tend to focus on the kids with special needs, sometimes the parents and sibling(s) get forgotten. If you're in this boat, maybe you should take a minute and give the mom or dad a call just to see how they're doing. Offer some babysitting time. Trust me--it's scary as a parent to hand your kid over to someone when you don't know what could go wrong--then you have the added concerns of medications, and it's nearly paralyzing. Since our son was diagnosed positively, I can count on two fingers how many times my husband and I have left both our kids with someone other than a family member. It's not that I don't trust anyone, it's that I personally feel it's probably overwhelming for someone to know what they need to do, even for something as "simple" as mealtime.

And, maybe I don't want to burden anyone else with the complexities. Who knows.

Question for you: do you know anyone with special needs kids? When was the last time you loved on the parents or siblings?

Until next time,

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.

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,

What *Is* That?

As I said in my last post, I was toying with doing an update on my son's health for this post.

Because of the rareness of his condition, I've thought about it and decided to share.

Chances of a child getting SDS from carrier parents

While my husband and I are still awaiting genetic confirmation, it is believed my son has an autosomal disorder called Schwachman-Diamond Syndrome. While related to cystic fibrosis, it's not the same. Schwachman-Diamond Syndrome (or SDS) mainly affects the pancreas, bone marrow, and skeleton. While we're not sure about our little guy's marrow, we know it's affecting the pancreas and skeleton.

In a normal person, the pancreas excretes enzymes to help process foods. In an SDS person, the enzymes necessary to process fat (at least in our case) aren't present. These must be supplemented, which we've been doing for approximately a month. This is apparently part of the reason our son hasn't been putting on weight, and at 8 1/2 months old, has just barely doubled his birth weight (something that normally happens by the 4th month.) If you can't process half of what's in breastmilk, you can't grow. :/

As for his skeleton, we know that our son's ribcage is misshapen. I haven't had it fully explained to me, but there are other markers in his skeletal x-rays that are consistent with a percentage of SDS cases.

SDS is extremely rare. Our doctors say it occurs in about 1 in 75,000 people, which puts the numbers in America in the 4,000 - 4,500 range. One of my son's doctors has about five patients in our metro area (around 2 million people.)

More information about SDS can be found at the SDS Foundation website and Wikipedia.

So, what's this mean for us right now? Well, our little guy is getting intensive treatment from his doctors. He's seeing three specialists and we fully expect to get at least one more in the next month or so. Medications are being added to his regimen on a regular basis. And, after being on a feeding tube since Christmas, we had one doctor tell us he wants X-man (our son's nickname) off the tube. After thinking about this, I can see the reasoning. It wasn't necessarily that X-man wasn't getting sufficient amounts of food, it was the fact he couldn't process up to 1/2 of what he was receiving!

Obviously, this isn't going to be a walk in the park. He's at a higher risk for severe infections (like when he landed in the hospital in February with pneumonia,) leukemia, type-1 diabetes, and the need for a bone marrow transplant in the future. Whatever comes, though, I know I have support from our friends, family, and church, as well as a spring of strength from God.


Until next time,

Liberty