Archive for the 'website' Category

And now a word from the IT dept.

Monday, March 19th, 2012

Charles here, with a sobering website update.

For the past 7 days, malicious code has been injected into the pages. We’re still not completely sure what caused this, but it’s now largely under control. If you visited the site in the last 7 days, you may have seen some pop-up window come up when you visited the site with something anti-virus related. If you clicked on that link, you may have unwittingly installed malware on your computer.

Here’s what this means for you:

  • If you’re using a different OS from Windows (Mac or Linux), you should be fine.
  • If you have an antivirus program installed that includes real-time scanning, you should be fine–the script would have been blocked–but you may want to run a full virus scan just in case.
  • If you don’t have real-time scanning on your antivirus software or don’t have any installed, you should install some and run a full scan. There are many places to go to get free antivirus software, but Avast is what we use, and we’re pretty happy with it.

I’m sorry this happened, and I’m especially sorry if you find yourself cleaning a malware infection out of your computer. I’m pretty sure you come to for updates on our darling daughter, not for a crash course in malware prevention. We may have some downtime over the next couple weeks as we try to clear out the last vestiges of this code; please be patient with us.

What is Arthrogryposis?

Sunday, June 5th, 2011

I changed the “Welcome” link on this website to “What is Arthrogryposis?” Please take some time to check it out. Thank you!

Diaper Change

Thursday, March 24th, 2011

Another first! Today (Thursday, March 24th)  Laelia stood through a diaper change!!! For the first time ever! We were at CCS for physical therapy and I  had to change her, but there was no changing table. Thankfully there was a stool in the bathroom so I leaned her against that and said, “Strong legs!” which is my warning when  I’m going to stand her up. She fussed the whole time, but afterwards was so proud of herself and told everyone about it! She beamed with pride when she told her daddy that night.  Time for Pull Ups!

(This posted late on the 27th, sorry. I used my magic website powers and set the publish date back to the 24th so I’d have a record of when it happened. That’s right, people, I went BACK IN TIME!   :) Since  Thursday she has stood through most of her diaper changes!)

Website Banner

Thursday, February 10th, 2011

Have you seen the blog’s new banner? It’s an adorable little cartoon Laelia in her signature pose! When Laelia first saw it  she said, “It’s a me!”

The art was done by Lauren Burke who I am incredibly blessed to know. You can find more of her work on or or random places all over. I’m not sure exactly what she charges for her work, but in my case she did it in exchange for getting to babysit Laelia. :-D   Then I got Laelia to do push ups in exchange for playing with Lauren tomorrow. Is it wrong to  capitalize  on their love for each other?


Glitchy glitchiness

Tuesday, January 11th, 2011

For all of you who received an email update from this website that contained only pictures with no text, it was in error. When we arrived home from Philadelphia, Laelia’s feet swelled up to three times their normal size. I immediately took several pictures of them so I could email them to her doctor for advice. I moved all of the pictures off my camera’s memory card onto my computer so I had access to the pictures of swollen feet. Right after that, of course, my darn computer crashed and went to computer Heaven taking all my pictures with it.

So I’ve been without pictures or an easy way to  blog for days. I thought I’d lost all my pictures for the last week, but Charley took the computer to the computer necromancer to retrieve them. So last night after getting my piece of junk computer back, it wasn’t staying on long enough for me to get my pictures back without crashing. So in that small window of time I transferred all of my good pictures from the computer to this website to save them from being lost. Then my computer crashed again (acccccc!) and it automatically sent those pictures from my website to everyone on my email list.

I promise there are stories and captions that go with these pictures, and I’ll have a permanent post in place probably tonight or tomorrow morning.

But if you did get an email of pictures this morning, I hope you enjoyed seeing my daughter with straight legs! And for the rest of you, be patient, they’re coming!

Well Done AMC Website

Thursday, May 20th, 2010

If you haven’t been to Mikaela’s website, then you’re missing out!   It’s really well done and now we’re even linked to it!

Check it out by clicking here!

Laelia is in the middle of the page, but there are also links to some adults with arthrogryposis, a lot of whom have been good email/Facebook friends for us!



Friday, July 4th, 2008

Can I get a bunch of people together to track down and cover with goo all the bullies that have written me lately? Yes, that is what justice calls for, a good gooing. Most of them are ads promoting themselves as friends commenting about Laelia, then if you approve their comment they torment you with endless ads for  RING TONES!!! Or worse, porn. But there are  also bullies who  by sheer cowardice write mean things to me through this site or youtube, thinking that anonymous messages about how my daughter is ugly or “deformed” are funny. That’s cyberbullying, kids, and McGruff don’t like that.

Speaking of cyber-related things,  most or all of you have probably received an invitation from me to sign up for This is a shameless bit of spam that sends out emails to your entire address book if you sign up for it.  The email  guilt trips  people into thinking that if they don’t click on  the “Is Alexis your friend?”  link then I  will receive this information and think they hate me.  It follows up the email by saying, “Please respond or Alexis might think you said no. :(”

I fell for it after receiving a  message from a co-worker who was leaving the company. I thought it was a way for him to stay in contact with everyone, so of course I would sign up (to his Indian love site? Okay, Jon, whatever) and be his friend. Well, just like he didn’t send out all those messages, I didn’t  send out  the subsequent mass mailing either.

Actually I have the perfect punishment for cyberbullies! Tie them to a chair and force them to feed my daughter peas and carrots! It’s the most disgusting/adorable thing you’ve ever seen. She recently  learned to spit them out of her mouth a good foot’s distance. (She once  got me right in  the face.) Then have those dumb cyberbullies call different government assistence programs and  daycares… ugh, no don’t do that. I’m not that cruel.


Wednesday, November 14th, 2007

Charles here.

Welcome to the new home for all things Laelia-related. CaringBridge was helpful up to a point, but we’re ready to cast off its limitations and go for a full-fledged blogging platform. Huge thanks go to good friends Bolt and Fjord, who had this site up and running about two-and-a-half hours after I asked for help.

You’ll note that a few things are missing from the site, like a photo gallery and guestbook. Those should be coming very soon. In the meantime, you can use the box at the right to subscribe to email updates, or add us to your favorite RSS reader. Also, you can now comment on specific posts directly.

Thanks, as always, for all your prayers and assistance. We appreciate it.