Archive for January, 2011

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!

Casts almost off!

Wednesday, January 5th, 2011

Once again we fly from California to Philadelphia because what’s a rare disability without a three thousand mile commute for treatment? :-D

This afternoon, during the automated call to confirm my Friday appointments at Shriners, I both dropped my phone and fell out of my chair… at work…  in front of my boss.  :) It’s my own fault for  stayed up late last night to drive out to Santa Ana and have some fun with friends (who are moving to the Congo… yeah you read that right). So  I’ve suffered from sleep-deprivation-induced  delirium all day today. That might affect my blogging a little. Or not. I dunno.

Weeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeee!!!!!

Right now I’m still packing. I have everything in front of me but it doesn’t all fit in my back pack like it should. I didn’t count on the weather meaning I had to take bigger clothes. I would have been done by now but I had to go to the gym tonight after my daughter, and I’m quoting her here, says, “Mommy do you have a baby  in your tummy or is it just big?”   :-/

All that to say… I’m still packing. I’m sure I’ll be done before we take off for the airport at 4:30am tomorrow. :)  So it’s all good!

Well it would be all good if not for this cold I feel coming in my throat. Also my vertigo was really bad today. It was probably just the lack of sleep though. Also I have stomach cramps. (Ladies, you know.) So everyone feel really sorry for the rude flight attendants who enter my war path this weekend.

Speaking of flight attendants, I was out of my “Hi! My name is Laelia!” cards that I pass out to flight attendants so I don’t have to explain  over and over again  about  Lali’s condition. Flying  so much for  medical treatment has taught me that if I don’t pass them out it means trouble. For example: When the head flight attendant demanded my daughter stand up because it was “a policy” while waiting for the bathroom. Example: The flight attendants who said my daughter wasn’t really disabled and implied I was somehow abusing her. Example: The flight attendant who held us up to check out our car seat and rudely said (as I waited and held my heavy daughter) that I should just put her down and let the poor child walk a bit instead of always carrying her. Example: The flight attendant who didn’t give me a straw (stir stick) because, “She can just use her hands.” Example: The flight attendant who said my daughter was “dirty” because she was scooting on her bottom instead of walking. Example: The flight attendant who could not or would not provide a wheelchair when we got off the plane because “you don’t get one just because you have a small child.” Example: The flight attendant who took our wheelchair from us and scolded, “This isn’t a stroller.” Example… you know what, I really need to keep packing so I’ll make this short. :)

So I didn’t have any darn cards left. We’re thinking they got thrown away accidentally during one of my infamous purges.  I even  tore apart my apartment looking for them. I ended up finding instead a doll’s head, a banana my husband was hiding from me (caught!), my UNO deck and a pair of pants I thought I’d lost, but no cards. So tonight I ordered new ones (that will come in two weeks). Then Lauren found out about  this and made me some on her computer and emailed them to Chelsea who ran to work tonight to print them out for me (since I don’t have a working printer) and then delivered them an hour ago! Yay! I’ll pass them out to every flight attendant on all five planes!

Ugh five planes. Three lay overs. Calculating…  that’s like forty-eight hundred  flight attendants! Ugggggggggggggggggggggh.

On the plus side I get a massage on January 15th as my reward  if I make it back from Philly in one piece and with the same small  child that I left with, minus casts. :)

Once again I’ll figure out where we’re staying (the day of) during our 55 minute lay over in Denver. I printed out directions to and from three different possible places: two Ronald McDonald houses and one hotel. So we’ll see. I’m hoping for the RMDH on Erie  that’s closest to the hospital. I don’t want to drive too much  in bad weather if I can help it.

It’s suppose to snow on Friday and be 20 degrees or so last I checked. I borrowed a jacket from Chie because I don’t own one and Chie’s family lives  back East and she’d heard of this thing called  “cold.”   I’ve got my one and only scarf Chelsea made me for Christmas and some gloves I got on sale from Target. I’ve also brought a blanket to wrap Laelia in. I think we’ll make it. I’m just so intimidated by snow! More so than traveling across the country!

But nothing can get me less excited about this visit. While we’re at Shriners we’ve got a lot to do: Updating our new  insurance information  with the  office, showing off standing (!!!)  for Dr. van Bosse, casts removal, car  seat swap (they’ve been holding ours since November), KAFOS or braces fitting, wheelchair returned (followed by begging and pleading to hang onto it), Laelia will  get her  first full  bath in six weeks, we’ll be  meeting up with other AMC families (who I’ve been  stalking on Facebook) and also  we  *may* even schedule Lali’s  next surgery for the Fall!

I just don’t know what I’d do without “AMC Mecca” and the amazing progress Laelia is making because of the experts there. Arthrogryposis has met its match! :)

Bringing in the New Year: 2011

Saturday, January 1st, 2011

“I wanna stay up with Mommy and Daddy!”

Don’t try to take me up to bed!

Making party hats!

Wearing her party hat while singing really loudly.

Getting really sleepy. Charley couldn’t help but mess with her.

“Zzzzzzzzzzzzzzzzzzzz.” It’s like 8:30pm. :-D

Happy New Year!