Wednesday, March 25, 2009

She Speaks

I am a child of God. I am a wife of a minister. I am stay at home, work at home, homeschooling mom of four children. After a curve ball was thrown my way a few years back, I became a writer.

Not a writer of books, or a writer of a huge blog, but a writer of a CaringBridge website. If you are not familiar, Caringbridge.org is a wonderful site set up for families of people who are sick. It is a free site that allows you to set up a website where you can update friends and families on the medical developments of your loved ones.

My caringbridge site is for my daughter, Abigail, who was born in September, 2003 with congenital scoliosis. (Congenital means “born with it”. In Abigail’s case, she was born with a section of her spine not having developed properly. She has two vertebrae which look like triangles, and three that are fused together on one side. It basically looks like a puzzle back there.) Congenital scoliosis, if not treated, can be fatal. Typically, children with congenital scoliosis have lung issues. In Abigail’s case, her curve in her spine was causing one of her lungs to not grow like the other.

After waiting and watching to see how she would grow, and to see how her curve would progress, we had a titanium rod installed in Abigail’s back last January. She has had two expansion surgeries since then, and is scheduled for another surgery one week from tomorrow. Our life the past year has definitely not been normal, but it has definitely been a blessing.

I began writing Abigail’s caringbridge updates to inform our friends and family of her medical progress. Then it began to take on a life of its own. I found myself using it to encourage others and making them laugh. I would relay our day to day activities, searching for humorous moments in the midst of hospital stays. Most importantly, I was sharing the love of Christ by showing how He was loving our family through the storms.

I hope to continue encouraging others and to bring laughter to their days. Abigail will be continuing to receive treatment for her “curvy pieces” until she is done growing, so it looks like I have ten more years of writing. Maybe by then, I’ll have enough entries for that book that my friends are encouraging me to write.

There is a great conference coming up this summer in Concord, NC that would definitely benefit my writing and help me reach more people. It is called She Speaks and is hosted by Proverbs 31 Ministries. It is for speakers, writers and women’s ministry leaders. They are offering a scholarship to one very fortunate winner. Check out all the details on the conference and scholarship opportunity!

WFMW - Family Friendly Happy Hour


My kids love to eat out. I can’t really blame them. If I had to choose between eating in and eating out, I’d definitely choose out. But with a family of six, it just doesn’t happen that often. Well, probably more often than it should during some weeks, but I try to not make it a habit.
I have discovered though, that many times it doesn’t matter what we get, but as long as we get something out of a building that has a drive thru window, they think they are eating out.

One of my bffs has always been Chick-Fil-A and their “kid size”. I’m all about getting kid sized drinks and kid sized ice cream cones because they are much less expensive. Especially if you are eating in, why not get a kid sized drink. Free refills. And the kid sized cones are definitely plenty of ice dream for a snack.

Our newest discovery, which is probably not new to most, is Sonic’s happy hour. Oh my. Just the other day, it was unusually hot while we were out running errands. Everyone was “dying” of thirst, so I thought, “Hey, we’ll just run by Sonic because they have slushes.”

For some reason I always thought Sonic was a little pricey for me. Well not during happy hour, my friend. No, during happy hour, all of their drinks and slushes are half price. So all five of us got the beverage of our choice (no one had to share this time) and it was $3.21. I was thrilled. It was certainly a special treat and I know now I can treat them “out” without it breaking my budget.

Sonic Happy Hour. It definitely Works for Me! Head on over to We are That Family for more great ideas!

Monday, March 23, 2009

Might not survive otherwise

Might not survive otherwise. Those words pierced my heart today.

When my girl was first diagnosed with congenital scoliosis, I spent hours researching on the web. As a parent, I felt like knowledge was vital. I wanted to know all of the possibilities, all of the options, and really, I wanted to know that she was going to be OK and live a full life. I was searching for answers.

It’s been a while since I’ve went searching. Life has been busy and things have gone well. My girl has a VEPTR in her back which seemingly did the trick. She’s had three total surgeries since last January. I had it settled in my mind that we would have expansions every five months, probably install a new VEPTR in a couple of years. Everything was settled.

Until we had our checkup a couple of weeks ago. The short version is that the VEPTR isn’t really working any more. We need another solution. We were informed of the next possible step, which is called a Shilla. It’s relatively new, still considered experimental. I’ve been busy and haven’t really researched it much. Until today. And this is one thing I read.

“the Shilla procedure is being used on patients who might not be able to survive otherwise”.

Wow. Straight to my heart. I’ve never thought of my girl in that way. That she might not survive. Oh I’ve known the reality of her condition. Basically, her lung can be crushed if we did nothing. And I know that life can be a little tough if you have a crushed lung. But I’ve never thought for a moment that we wouldn’t come out on the other side of this, and all would be well.

I’m still working through it. I’m not a worrier. I’m a “let me ponder it, understand it, accept it and let’s move on with life” kind of gal. I have absolute faith in God and stand on our verse that we have claimed for my girl from the beginning. “For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future.” Jeremiah 29:11

Meanwhile, I’m off to ponder. And understand. And accept. Then we’re moving on. We’ve got lots of fun to be had. Lots of laughter and funny moments to come our way. And on the other side of our curvy journey, we will be able to say that we survived.

Friday, March 20, 2009

Buma the Cow


Have any of your children ever had a stuffed animal that became part of your family? I’m sure most parents could answer yes.

Our family is no different. We have Buma. Buma the Cow. (Pronounced Bumma – long story on the spelling of his name.)

Buma became part of our family on our first family mission trip to Cleveland. Our church collected stuffed animals to give to the campers (we held an Upward sports camp) and my youngest son was a camper. So he got to pick a stuffed animal. And he picked a cow.

I’m not sure when or how, but Buma has become an integral part of our family. He goes everywhere with us. He has his own blog. (An in-progress blog, but a blog, nonetheless.) He also has his own group on Facebook. It’s called “Friends of Buma the Cow”.

One of our favorite pastimes is taking Buma and have his picture made different places. He has been to Carowinds and had his picture made with Blue from Blues Clues and Diego. He’s visited Washington, DC and Disney World. He had his picture made with a lot of the characters at DW and had a song composed for him by one of our favorites, Gi-Tar Dan at Animal Kingdom. Most recently he went to see the Charlotte Bobcats play and went to Myrtle Beach for some relaxation!





We’re looking to many adventures this spring with Buma the Cow. Stay tuned.

Wednesday, March 18, 2009

Let's Go Tarheels!!






Our family loves basketball. Love to play. Love to watch. And we absolutely love the Carolina Tarheels.

For the second year in a row we were able to go watch the Heels practice for the first round of the NCAA tournament. It is basketball heaven.




What a glorious day to see Ty Lawson, the ACC Player of the Year, walking. I've never prayed for a toe as much as I have the past week. Carolina is a great team, but boy, oh boy, we need Ty Lawson.

It is so cool to go to these practices. Admission is free, parking is free, entertainment is great. The Tarheels definitely did not disappoint their fans today, and had a great slam dunk performance at the end of practice.

LET'S GO HEELS!!

A Rotating Spine and a Goat

Our family has lived in a whirlwind over the past couple of months. All the boys played Upward basketball at church, with my girl loving being a cheerleader for the first time. I also coached a girls team this season, so we had five games we HAD to be at every weekend. Upward is a great program, and I would highly recommend it to anyone. But I am so thankful that it is over.

We went to see my girl's specialist last Wednesday and are thinking maybe she enjoyed cheering and jumping just a little too much because her device is pulling through her rib again. (He didn’t actually say what caused it. It’s probably a combination of activity and growing.) It is not completely through the rib, so that’s a good thing. It looks like it’s about halfway through.
We also found out that her spine is still rotating, which has really always been one of our biggest concerns. Well, that and her lung are the biggest issues. The “cut to the chase” version is that the VEPTR device is working to her curve from getting worse, but it doesn’t keep her spine from rotating.

The plan is to go in a couple of weeks and try to extend the device again by another cm. He is hoping to do this without coming all the way through the rib. (Yeah, I’m hoping for the same thing.) His goal is to buy her a little more time with the VEPTR.

The next stage of the plan is to try and stop the rotation of the spine. The curve continuing will smush her lung, and the rotation will do the same. (I know that smush is not a medical term, but it works for me.) The option that he recommended is in the next six months or year, he will need to remove the VEPTR. Right now, the plan is to fuse the vertebrae that are causing the rotation, and install a new device, called a Shilla.

The Shilla is a new thing that he has mentioned for a couple of visits. The inventor (or whatever you call him) is in Arkansas. It is still considered experimental, so there’s not a lot of data on its success rate. It is some type of rod that will be attached on both sides of her spine with screws, and will extend on its own. This would be great to prevent all of the little surgeries between the biggies. This is definitely a plus.

Like every option we have had up to this point, there are always unknowns. With the device being considered experimental, the first unknown is how the insurance company will treat it. We’ll definitely be trusting God to work that one out. I know that the VEPTR was $22,000 and it is only one rod. Hmmm…..I’m thinking that we oughta “ebay” the VEPTR to pay for the Shilla. Surely there’s a market for titanium.

The other unknown is the surgery itself. Our doctor told us that his experience with the Shilla was with a goat as the patient. You can only imagine the amount of self-control that I exhibited after he gave us that little tidbit of information. Do you know the number of jokes I could have made with that one? Bless his heart.

So that’s the update with our little Super Girl who’s walking around with another ½ broken rib. Please pray for wisdom during the upcoming surgery that he is able to extend without completely coming through the rib. Also pray for wisdom for our next step in the process. And that the man puts one in on a human in the meantime.