Archive for July, 2011

Laelia has cute stories

Sunday, July 31st, 2011

I found this  while washing one of  my husband’s shirts. The “other woman” uses chocolate instead of lipstick. Oh who could it be? ;)

Here are a bunch of Laelia stories in no particular order. Enjoy!

Laelia has new hip stretches  that make her cry. I’m getting flashbacks to when she was a tiny baby and we had to do stretches all the time  that  made her scream. It’s awful, but it’s necessary. But the difference between now and then is quite huge. Instead of just screaming and not understanding why I’m doing it,  she now just cries (or says, “owie owie owieowieowie”) and then when it’s over she instantly stops crying and  says something random like, “I’m a finger puppet!” Yep. In that cheerful voice while making what I can only imagine is a finger puppet face. I’ve never been a finger puppet myself so I wouldn’t know.    Regardless it lets me know I’m not damaging her for life. When I tell her how sorry I am that it’s not comfortable  she just  says, “Stretchies are good for my legs. I’m gonna walk soon!” Love this kid.

I asked if Laelia wanted a sandwich or pasta for lunch. She said she wanted a sandwich, but after her daddy whispered something in her ear she said, “Not peanut butter sandwich, a SUBWAY sandwich!” Being suspicious I asked her what kind of sandwich she would get there. She replied, “ELEPHANT!”

My husband and I  were sitting on the couch talking about the “someone who is sometimes very loud and  crazy.” Then Laelia gets all excited and yells, “I LIKE TO BE VERY LOUD AND CRAZY TOO!!!” As if she’d found a kindred spirit! We didn’t have the heart to tell her we were talking about her. :)

Laelia decided before bed one night that the best way to get to stay awake was to ask a bunch of questions. “Hey Mama, why is it dark?” “Hey Mama, why come I don’t move off my bed?” “Hey Mama, can I have some water?” “Hey Mama, why are my fingers doing *this*?” (As she wiggles them around.) “Hey Mama? Hey Mama? Hey Mama?!!!”

And when I started to ignore her and finally walked towards the door  she just  became more frantic. “HEY MAMA! HEY MAMA?!!! WHY, um, WHY IS MY BED HERE? HEY HEY HEY!!! HEY MAMA, HOW IS MY PILLOW HERE? WHY HOW COME IS WHY HOW?!!” I had no idea what to do at this point, so I had to rely on my intuition and motherly wisdom. I pulled deep into the storehouses of this wisdom…

…and then  this worked.

So we thought Laelia had ring worm and took her to the doctor. It turned out to be nummular eczema (I blame her daddy’s genes  for this one). So it’s not contagious and she can go back to school. But when I told her it wasn’t ring worm she looked so relieved. Then she said, “I don’t have the worms! Yay!” I realized that she thought ring worm was really little worms in her body. Poor thing. I explained it was just a skin problem that looked like little rings. Then I get home and tell my husband that it’s not ring worm. He looked so relieved… you can guess what he was thinking too. ;)

Laelia had her most successful game of hide and seek this week  yet! Since all her games involve telling the seeker exactly where to put her, and then laughing with glee when she’s found (even though the seeker JUST PUT HER THERE), let’s just say it’s an easy game. :)  So this time she had me hide her and her  daddy seek her. Smart kid, she’s learning. She asked me to put her on the kitchen counter. I told her that there was nothing to hide behind there, but she insisted. Then she just buried her face into the cabinet.

Can you spot the hiding child?

How about now?

Well her daddy didn’t spot her right away. He looked in her room and then  the hall and then walked through the dinning room and then almost walked  right past her! I saw her shaking with excitement–this was the longest she had ever hidden! She  refused to quit “hiding” even when he spotted her, called her name and had me take a couple  pictures. That’s what I call a  real professional. :)

Last night I told Laelia if she got ready for bed quickly that I would give her a surprise. Well she did well  so I hunted around and found an old sticker. She likes stickers, right? Well her disappointment was so obvious but she replied, “Thanks Mama! Um…. it’s a sticker. Thanks. Well, do you want my sticker? Thanks for my surprise.” So sweet and mature! I had to spend the next half hour finding her better presents: a rock from the yard and some old $1 juggling balls from Target.  :)

My husband sent our daughter to school in pajamas the other day. And it wasn’t any sort of special pajama day either.  Well, it wasn’t for anyone else anyway. ;)

Laelia found a dime on the ground and I let her keep it. She later said, “Mama, I need to give my money to the guys, to the kids, you know, that don’t have a Mommy and Daddy so we adopt ‘em.” ♥ Yeah my kid said that!!! Isn’t she the best?! We put it in a special jar to give to baby Joel. ♥♥♥♥♥♥♥♥♥♥♥♥♥

Laelia begged to do some gardening this week. Well she’s begged me about this very thing  since we moved in four months ago, but we always had so many other pressing things to do. But this week I gave in.

Mr. Gnome and Jessi the flower

Before

After

Here’s Laelia helping. She promised she would dig the holes and clear the rocks and water them every day. For the rest of her life!

The helping part lasted, er,  ten minutes before she got bored and started throwing rocks, pulling petals off sunflowers and attacking ants with the spade. I asked her at one point while my arms were  buried to the elbows in dirt, “Hey Laelia can I see your tiny shovel?” She responded, “Um… I’m busy.” Then I  hear, “ANTS GO SQUISH NOW!!!” As she  continued pummeling them with her spade.

Here’s the rest of the yard. Laelia wanted to know why I would ever want to pull out these lovely plants.  Since I had a pretty big blister forming I decided she can keep her weeds. :)

Okay I think I’m done being random with Lali stories. Oh wait, here’s a video of Laelia being mauled by a bear. Okay good-night! :)

Back from Philly and Placerville

Tuesday, July 26th, 2011

Home again home again jiggidy jig!  Let’s not go anywhere for a while, shall we? I have three suitcases with scattered contents  migrating outward across my floor. Each has at least one scavenger cat all over it. My house could be the stage for a disaster movie.

Three weeks ago Laelia and I flew out to Kansas City for the AMC Convention. Well last week it was Daddy’s turn so he and Lali flew out to Philadelphia for a check up and x-ray appointment. (Did I mention that all of our flights were free? Besides one AMC clinic in Seattle, all of our medical travel since Laelia was born has been covered! Woot!) This is the first Philly trip I have not attended. I kept having to tell myself it was just a check up. And it was just a check up. And I did figure out how to micromanage the entire trip long distance. Hehe. But still. Leaving Laelia with her daddy is a terrifying experience for me. Not that he’s not super responsible and smart… he is,  but he’s also a space cadet. Every other phone call went something like this.

Him: “We arrived safely in Philly! Now where are the directions to the Ronald McDonald House?”

Me: “Um, what’s the ONE thing I asked you to print out because we don’t have a printer?”

Him: “Directions.”

Me: “And didn’t I call you to remind you at work to do that before you came home?”

Him: “Yeah, but where are they?”

Or,

Him: “Well we got a ride to the grocery store because, besides other things, Laelia just really wanted some animal crackers and kept asking for them.”

Me: “She went through the entire giant bag of animal crackers I sent you with already?!!”

Him: “Oh this bag marked, ‘Snacks’? Yeah I see it now. Oh this would have been helpful on the plane. Whoa, look at all these animal crackers!”

Add to that the fact that I did all the packing, compiled all the medical questions, safety pinned all of Laelia’s outfits together because  matching colors on little girls’ clothes confuses the poor man… well, *sigh* anyway.

So where was I? I was busy seeing my brand new nephew! So I flew up north to visit family in Placerville. I’m an aunt now! Yay me! And my sister and her husband are first time parents! So yay them too I guess. :)

I didn’t have much time, but I  made myself busy by visiting family, losing money at the  new casino down the road  (that my dad won back because Christina is lucky and I’m not), taking a three hour walk and coming home with my pockets so full of rocks that I couldn’t clean them out in time to answer my buried cell phone, cleaning my sister’s bathrooms and floors, making and eating ham sandwiches, ham with corn, ham with ham, more ham and ham with ham on ham, losing  to my sister  at Doctor Mario… a lot (you haven’t heard my excuses yet!) and playing and cuddling little Levi. Here are some pictures courtesy of my sister since my camera went to camera heaven.

Levi with his favorite aunt: ME!!!!

Teaching Levi to make faces.

And here’s the fish face!

Note the family resemblance?

Here’s Laelia at Levi’s age. Parents should keep their children’s cheeks away from me, apparently.

And while I was busy back home, Laelia was in Philly!

Laelia and Ronald and Ryan

Of course they ran into Laelia’s future husband, Ryan. He practically stalks her, you know. ;) Daddy and Lali actually stayed at the Ronald McDonald House in Camden, New Jersey this time and just commuted to Philly for their appointment. Their room was Harry Potter-themed–from broomsticks on the walls, Harry Potter books on the shelves and posters  or life-size cutouts of the characters everywhere. Each wall was painted a different Hogwarts color with a corresponding banner: Gryffindor, Slytherin, Ravenclaw or Hufflepuff. It was awesome. Actually every room at Camden’s RMDH is themed. The room they almost stayed in was 70s tie-dyed themed. There’s even a  Sponge Bob room!

While in New Jersey, Kiersten and Ryan took them to eat real pizza. Jersey style!

“Now that I’ve had my Jersey pizza, I want my Snooki tan!”

They saw the doctors and therapists on Friday for  Dr. van Bosse’s  AMC clinic. Laelia got her x-rays (lookin’ good!), some extra padding for her shoes and some magic pony toys (that my cats are always trying to swallow and kill themselves with). The physical therapist said to do more tummy time (like a baby?), hydrotherapy (I’ve called them but haven’t heard back yet), hippotherapy (called them and heard back… $25 a session?!!!??!!) and more physical therapy everyday. I’m not sure how we’re going to fit this all in. It’s a lot. A LOT. Let’s just say  I’m going to look for  stay-at-home jobs now.

And we’re adding new hip stretches to the daily routine.  Because we didn’t have enough stretches. Yay.  o_O

Then there’s the stressful paperwork dramas that must now take place. We are suppose to get  KAFOs but we have to get the script from a local doc (Philly docs don’t count in California) and then send that to insurance, and then to the orthopedist, so  it will take months I’m sure. And we’re suppose to start using her Kid Walk, but I can’t figure out what happened between steps 5 and 6 (better known as between the insurance auth step and the manufacturer step).  We also got the go-ahead to do E-Stim, although I have no idea how to find out anything about that… and it’s low on my list.

We also have a surgery date of November 8th. They want us to fly to Philly a week or two before that to do intense, daily out-patient physical therapy. After those weeks of hard work and the concluding surgery we’ll have a better idea of what to try next.

And since lots of people have asked about the surgery, let me back up. Last November Laelia had her bones,  between the hips and femurs,  cut through and rotated and then screwed back together like this:

So these screws or pins or clamps (I’ve heard them referred to as all three) need to come out. Then we’ll have to start over with PT.  Ugh. Well  in a way  she’ll be learning to do everything  she does now only with her actual hardware and not the metal hardware we added.  Osteoporosis is a major concern for AMC’ers, so the more weight we can put through those legs  now, the better. We already have her on a high protein and calcium diet which I think is helping. Or at least it’s SOMETHING. She eats eggs and peanut butter sandwiches and  protein (“chocolate milk”) shakes for her muscles, and she eats yogurt and supplements (gummy vits)  and other things with  calcium in them for her bones.  I know kids who have bones break just from the lack of weight bearing just from the amyoplasia (which she has) so I’m hopeful we’ll  escape that fate.

In other news we started physical therapy with new therapists today (Tuesday). The bad news was that we were (read: I was)  so desperate for a camera that we tried to get one for cheapo off Craigslist and ended up driving to Spring Valley to pick it up. And that’s where our car stayed. Bad alternator. Just great. So we  had to bum a ride to PT and then wait over an hour for a ride home. But  I like our therapists and think we’re doing the right thing.

It’s so weird getting new therapists. Every  year and every new therapist, we get a new evaluation. And my brain knows that these exercises are to test where Laelia is now, and not a test that she’s failing. But still my heart has not  wrapped around the idea that we’re not failing when, you know, we fail. So instead of hearing what the therapist actually says, “Looks like she’s a little weak here, let’s make it a goal this year to work on it!” I hear,  “Well Laelia FAILED the physical test. No A+ for her. BAD PARENTING!” :) Okay not really, but I have to make an effort to change my thought process here. After the tests Laelia looks at me waiting to see my reactions (because she’s hella smart) and I have to mean it when I tell her how good she did. She lights up like the Fourth of July when she hears she’s  done well. A+ for Laelia!

Well we just got back from picking up the dead car in Spring Valley. We now also have a camera we got on the cheap! Don’t know if it works yet. It came without batteries or memory cards or anything. *crosses fingers*

There’s lots more to say but I’m tired. Charley keeps telling me cute Laelia stories from his trip to Philly, but I told him he’d have to blog about it himself. I’m going to eat my weight in food since I have to fast tomorrow (feel sorry for my coworkers) for a blood test.

Ooh left over pasta! Bye!

 

Convention Pictures

Saturday, July 16th, 2011

My favorite memory at the AMC conference. Scroll down to read about it.

I have finally uploaded all of our pictures! Thanks again so much for those who supported our trip out!

(Please don’t miss the words/links in pink, which, if you click on them, will take you to some really cute videos!)

On July 6th we packed up and headed out to Kansas City for the 6th Annual AMC Conference!

 

GROUP PHOTOS

The whole gang. :)

All these people are chasing me!!!

Front of the line (the perks of arriving late to things) :)

 

DONATIONS

Laelia’s old AFOs/KAFOs/Dennis-Brown AFOs that we donated to orphans at the conference.

I was hunting for Laelia’s Dr. van Bosse Fan Club hair bow (that I couldn’t find last second) when I ran into ANOTHER pair of AFOs to donate!

We completely filled the donation box! (And still have two pairs of AFOs  at home!)

Was my daughter ever this tiny?!!

 

SEEING RYAN AGAIN

(I think she missed him.)

Wrestling!

Screaming for fun!

Just click here to get a sample.

We put them to bed like this…

…and  would find  them in the morning like this!  (They’re still sleeping.) ;)

And they would talk to each other late into the night. It was so cute! To quote Ryan’s mom, “My favorite was, Laelia: ‘Ryan, you have to stop talking soon, it’s bedtime.’ Ryan: ‘Ok’ ….silence for 10 seconds…. Laelia: ‘Ryan, do you want to still talk to me?’” :-D

We ended up watching Dumbo every night. It was fitting since Dumbo had a physical difference and people treated him differently. (Did you know Dumbo’s real name was Jumbo Jr? And those mean elephants changed it just because he looked different?! I think I pulled too many deep things out of this movie due to  the sleep deprivation.)

Checking out the wheels on the bed. (Knee therapy!)

Here’s a video of them sword fighting.

And then there were the Oreos that made them crazy…

:)

And here’s a video of us catching Lightening Bugs (aka Fire Flies), which both Laelia and I had never seen before. Kiersten calls this video the  Watching Alexis Turn Six Years Old video. :)

 

WHEELCHAIR RACES AND CRASHES!

 

Click here to see Wheelchair Tag.

Fun, open, flat places to  wheel around!

 

My amended name tag after Laelia got a reputation for crashing into people. Instead of saying, “Sorry!” over and over I just started flashing the name tag. :)

 

SPEAKING OF CRASHES

 

Laelia took this picture. Pretty good, eh?  This is my bloody lip after Laelia jumped (for the first time in the pool!) right into my face. I was so proud. (And in pain.) We left the pool with Laelia in tears because she couldn’t stay, and me holding a hotel towel up to my face. We were a sight.

 

TOO MUCH EXCITEMENT!!!

The workshops were… um… so exciting! But not for three year olds.

Taking her out of the workshop to play and watch a magic show… also… so exciting?

Click for video.

Waiting for the elevator back up to our room… it was just an exciting trip is all I can say. :)

 

OUR MAIN SPEAKER!

 

Ward and Scarman (a doll with all of Ward’s surgical scars on him)

Ward had the kids make their own scar dolls. All those lines on the doll represent scars Laelia has. (All lower body so far, thank the Lord!) They even have matching orange shirts!

Ward loved the kids!

He and Ileana took off with the kids. Yay! Free babysitting!

 

PAINTING!

 

Theresa is Laelia’s favorite “movie star” who paints with her mouth instead of her hands. Theresa (or Auntie Reesa) has arthrogryposis too! Laelia has been waiting so so so patiently to learn how to paint with her mouth for Theresa.

Click here for the video.

 

Laelia also got her face painted! Here she is in line. My camera broke so I didn’t get the butterfly on her face. But it was cute! And of course, Chris, the artist, also painted with his mouth! Laelia stayed really still, so whatever magic juice this guy was using, I want some!

 

BREAK DANCING!

Thanks for the tutu, Kiersten! It as perfect for… break dancing? :)

Laelia confidently scooted out into a group of boys and then  Luca “Lazy Legs” Patuelli,  from So You Think You Can Dance, started directing her moves.

You can’t miss this video!!! Kiersten took it, but it was the second time Luca showed her some moves so it was not as spontaneous as the first one.

In fact, here’s a better, more official video done by the AMC documentary gal. Laelia is 4.23 minutes in. It’s short.

But I would love if anyone had that first video when she scooted right into the middle of things and he started telling her how to cross her arms and give a tough guy face and go on her side and lift her legs… stuff she won’t do in physical therapy but she’ll do when break dancing!

 

OUR FRIENDS!

 

Our Ryan (future husband)

Ronan (lower left)

Sadie and her mom, Jessi

Gracie

Ileana

Ward aka Scarman (Melanie, yes she definitely is not buying whatever he’s selling!) :)

Tracey

Parker! And Sean.

Mik

Elliot and Abby

Paint-covered Elliot and Rob chasing Laelia

They got her!

Bar flies… I mean FRIENDS! :)

Angie, Sean, Melanie, Ileana and Maria!

And believe it or not, my camera broke on this trip. OR THERE WOULD BE EVEN MORE PICTURES!!! (Thanks to everyone who let me borrow their pictures.)

:)

One of the biggest things I took away from the convention was feeling “normal.” My child wasn’t stared at. Her scooting was normal. Her wheelchair was normal. I started to see kids without clubbed hands and contractures in the airport on our way home as the  different ones. :)  I watched my daughter blossom. She isn’t normally very active (physically) and has no close, local  friends with special needs. But at the conference she was in her element. And constantly on the move! She had wheelchair races, she crashed into her friends’ wheelchairs (and into the occasional person… and hotel  bar server), she got into trouble for rolling in front of the Talent Show stage (“Where is your mother?”), she laughed her head off and painted and wrestled and scooted and practiced standing all the time for fun. She even started jumping in the pool for the first time, surrounded by other kids with AMC. She gave me a bloody lip doing it too! :) :)

But one of my favorite memories is when Laelia scooted her way into a break dance circle. My bull-headed child scooted right into the middle of those tough boys in her little pretty pink tutu. Luca “Lazy Legs” Patuelli didn’t miss a beat and immediately started giving her instructions–”spin around, now put your arms out like this, now go on your side, now cross your arms and give me a tough-guy face.” She followed his every instruction. I think she felt comfortable doing this because she wouldn’t be the “disabled one.” I just realized while writing this that no one made us feel weird for being different. Luca (and the rest of the people there) didn’t ask me, “Can your daughter lift her arms? Is it safe for her to participate? Should you be doing this? Is she okay?” Ugh! Like Laelia is some brain-dead handicapped pity party! These people just  “got it.”  I think it’s important to attend conference because it’s “home.” Because you can be normal here when you can’t be normal around any other group. I went there for medical advice and therapy tricks and came away with so much more. It’s one thing to attend a splinting workshop (which I did), and another thing to talk to some moms afterwards who show you how their splints work, and share skin break-down horror stories and show you what gains their child has made so you see the whole picture. Especially when those moms know what you’re going through and can pronounce your daughter’s condition! It was also nice to see the AMC adults and realize that they are  everyday folk who are personable and well-adjusted. Such a relief. And I also met a few people who didn’t start walking until they were 4, 5, 9, etc. That made me relax about Laelia’s upcoming fourth birthday and the fact that we’ve not taken a step yet. (Unless you count this one in our room with Ryan’s borrowed walking sticks and him cheering her on in the background. “Go Yayeeah!”)

I’ve been able to  make new connections and strengthen old ones because of this conference. I need those connections and that support to survive this journey.

 

AMC Convention

Wednesday, July 13th, 2011

AMC’ers and their families in our orange shirts!

Pure joy.

I just wanted to say how incredibly thankful I am that we got to go to the AMC Convention. I haven’t had any time to blog about it and it’s killing me. To say we’re exhausted would be an understatement. Coming back from Seattle so I could jump on a plane to Kansas City was hard. But I’m not even unpacking since the little girl leaves for Philly next week! Her Daddy is taking her for her check up at the Philly Shriners and I’m heading to Northern California to see my new nephew. Our flights are within minutes of each other. Crazy!

So since it’s almost midnight and I have  to be up for work at  5:00 AM, I’ll just give some quick highlights of our trip.

After this week I just can’t wait for Ryan and Laelia’s wedding. They are so good for each other and they both have made declarations of love so it’s settled.  :) It’s the sweetest thing to watch them wrestle!  Plus they bicker like Fred and Ethel!  Adorable! I could listen to them argue and shush each other late into the night every night. It’s the cutest. So glad to spend time with friends! And so thankful they convinced us to go and shared their hotel room!

After this week I realized that this convention was way more like a family reunion than a convention. And everyone was happy to  talk with  Laelia or laugh with her. NO ONE STARED. They  got it. We were understood. Nothing about us stood out. We were normal.  Our friends are amazing.  The convention  was amazing.

After this week I want to modify my home with pull-string light switches and doors Laelia can open and close herself… and a bidet! (Home Modification workshop)

After this week it’s weird to see typical kids without clubbed hands and assistive devices. How boring. :)

After this week I learned that adults with AMC figure it out. They just figure it out. (How To workshop)

After this week I learned that painting with your mouth is sometimes more accurate than using hands! (Painting with Theresa) And Laelia got her face painted by an artist who used his mouth to hold the brush!

After this week I think maybe Laelia should take harp lessons… (Talent Show)

After this week I learned that my OT, Jill Peck-Murray,  made amazing splints for us! And OTs are not all that talented. We were darn lucky. And the fact that she suggested casting Laelia’s wrists  when she was a wittle baby was pure genius.

After this week I learned that if my daughter met a famous movie star on the street she’s be all, “Eh seen one seen ‘em all,” after meeting movie star Theresa! (She is on a DVD after all.) :)

After this week I learned that all our hopes and dreams  are so similar. We all want the same things for our kids. (Hopes and Dreams with Ani)

After this week my daughter has  done more physical therapy than ever before. On her own initiative! It helps when you play wheelchair tag, wrestle and break dance all week!

After this week I no longer freak out when I see another one of my daughter’s birthdays approaching and she still doesn’t walk. Valerie didn’t walk until age four, and  Lorie not until age nine!

During  this week I found out the shoulder muscle transfer surgery I really wanted to ask the doctors about would not work for my daughter. :(   But I also found out lots of other things we could try until they come up with something else for her!

During this week I got to stand up in front of everyone and publicly thank Laelia’s doctor, Dr. van Bosse, who  had of course flown out to the convention to support his favorite kids.

During  this week I felt like my daughter belonged somewhere, and so did I. She was so happy and so active. She even got in trouble! (“Where is your mother?!” Someone asked as she rolled around  on the ground disrupting everything.  HERE I AM!!! SO PROUD!) And she gave me a bloody lip from jumping in the pool  (for the first time)  right into my face! I’ll take it! And did I mention she was break dancing??!!!! With this guy? Yeah he was totally teaching her rad moves! Or groovy moves? Um… Cool moves?  Wait hold up. *looks up lingo of today* Sick moves. There you go. :)

And I was completely humbled, just crushed to the floor, after so many people came up and said they had seen every one of Laelia’s videos on YouTube, or that she was the very first kid with AMC they had seen after their child was diagnosed. Two moms found my blog and it eventually led them to this convention! We’re even popular with Canadians! Hehe. :) Actually the whole trip was all about finding the people who matched the Facebook, blog  and forum pictures. Seeing them in person, hugging them, spending an afternoon at the pub while our kids crashed their wheelchairs into the poor servers… it really just solidified relationships. I’m so glad I went. I will be posting pictures soon. I just need a couple hours sleep and some……….zzzzzzzzzzzzzzzzzzzzzzzzzz.

 

 

 

 

Arthrogryposis Awareness Day 2011

Monday, July 4th, 2011

Once again another AMC Awareness Day has come and gone.  (It was the same day as our tire blowout on the freeway so I was a bit distracted and didn’t post about it earlier.)  Every  June 30th  is the official awareness day. Unlike other awareness days (and I participate in Deaf Awareness Day every year) it seems like this is a condition that truly needs awareness. I have yet to meet someone who asks what my daughter has, and then recognizes the condition or can even pronounce it! So we need more awareness! Although I did get to share about arthrogryposis with two new people this week.  I  got to share Laelia’s condition with my driver in Seattle (who got  Laelia’s card and  gave me a hug afterwards! Hi Buzz!), and with a dog-walking lady at the animal  shelter who had muscular dystrophy and compared her AFOs with Laelia’s. :)

This year most of my friends and family participated, which was amazing! (I loved seeing all my cousins in blue!) The only thing you have to do is wear blue that day. Even the AMC’ers themselves wear blue. Want to see all the blue? Click here to see all the AMC’ers who participated! Laelia’s picture is on the fifth page down. We submitted the “shirt art” that my Aunt Linda created for her.  But this was her official picture for our Facebook friends:

See my blue flower?

Princess Laelia!

And here are a few  of me wearing blue too, but keep in mind I had not showered after my sweaty, two-hour freeway drama. And Laelia was too busy  being goofy…  :)

Thanks to everyone who sent us pictures of your blue-wearing selves! We appreciate your support! Thank you!

Here are a few of the pictures people gave me. Although many more told me they were wearing blue or they put Laelia’s picture (or an awareness message or picture) on their Facebook profiles! (Thanks Charilyn, Linda,  Lynn, Brenda, Debi, Jim, Phyllis, Sarah, Beth, Chelsea, Deb,  Lauren, Melissa, and many, many of my AMC family not pictured!)

 

So much this summer!

Saturday, July 2nd, 2011

I realize that I have been behind in blogging, and I’m trying to catch up since we have a crazy summer ahead of us that I’m sure I’ll want to blog about. Now that I’m back from my work trip in Seattle I can focus on what’s ahead. Our plans for  the next month  (for those of you who have asked repeatedly) are as follows.

This weekend is our July 4th weekend and includes a party and lots of other activities.

July 6th-10th Laelia and Mama will be flying to Kansas City for the AMC Convention.

July 11th Laelia starts Summer School!

July 19th-July 23rd Laelia and Daddy fly to Philly to get a check up, a surgery date for the Fall and return the manual  wheelchair. Mama will be flying to Northern California to see her brand new baby nephew and then meet Daddy and Laelia at home. Our flights there and back are within minutes of each other.

August 7th (tentatively) I’ll be giving a talk  about special needs families to New Vision in San Diego.

So that’s what’s coming, but so much has happened! I know I just don’t have time to blog about it all, but let me give you the highlights in no particular order.

 

Baby Levi!

Laelia’s only cousin! (Born June 26th)

Little Levi  had a high and irregular heartbeat and presented signs of distress. But right before my sister, Emily,  was going to  have a C-Section, Rock music saved the day and he came out on his own. (You’ll have to ask her about that one. ;)) He was born with a fever and needed a tiny baby IV. He’s doing well now, but my sister is really sick and, you know, newborns are freakin’ hard! If anyone in the Placerville/Cameron Park  area  wants to make them some anonymous meals (so my sister won’t feel obligated to be coherent enough to be social or say thank you) that you leave at their doorstep, ring the doorbell and run away, they would LOVE that.

I can’t wait to see  Levi  in three weeks! (My internal voice got really squeaky there, in case you missed it.) :)

Charley’s family all came over so Laelia could teach them how to read a book on the iPod Touch.

They taught her how to make kissie faces while at the zoo.

And Grandpa (it was his birthday) shared his birthday hat!

Okay I have like no good pictures, mostly because her grandparents took most of the pictures. But you get the idea. :)

We celebrated Father’s Day by making Daddy bounce us on the horsey for a loooooooong time.

We celebrated Jared’s birthday at Karl Strauss. The view was incredible and the weather was great! Fun times!

Adam and Lali looking at the water.

Adam and Lali looking at each other.

Happy Birthday Jared!

Then there was the luau!

Luau Fun!

We got free tickets to a luau from our friend, Rocky! Yum!

But on our way home from the luau, we almost hit a runaway doggie when he ran into the road!

We took him home, fed him, gave him water and loved on him.

This little doggie was running in the road, and it was late enough that no one was around. I got him then looked around for his owner.  No luck. So I made my reluctant husband take him home. We gave him water,  fed him chicken and rice and gave him cuddles. Laelia fell in love entirely too quickly.  She is over the moon. I said, “No we’re not keeping him. I never wanted a dog.” Laelia misheard me and said, “I never had a dog too! Let’s bring him home!” Ugggggggggh. No doggie. Quit falling in love with him. Quit it! :)

I put him on Craigslist under lost pets, put an ad (Found Dog) in the paper and put him on Facebook. The next morning we took him to the Central Shelter in San Diego so they could see if he had a chip they could track. They said it’s best to keep him there where he’s not terrorized by our three cats who are ALL bigger than he is. They tended to his ear (that was bit) and fed him real dog food. They will call us in four days if no one comes for him. I did get one phone call about him, but it turned out to be a dog lover who just wanted him.

Laelia has been asking about her doggie. I had to explain that if she was ever lost I would want someone to return her to me and not keep her. It’s been a bit emotional for all the gals here since the doggie incident.

My family and friends are taking bets on whether Laelia ends up with her doggie. :) Daddy put his foot down, but we’re pretty pathetic and he can’t hold out forever! :)

In other craziness the other day  my tire blew out on the freeway with my daughter in the backseat. I called my insurance who could get a tow truck out there in one hour. We were told we weren’t safe and if I couldn’t pull my car over more I’d have to call 911. (I was on the side of a multi-lane freeway, underneath another multi-lane freeway. The noise was deafening and the traffic was shaking the car pretty bad!) Just then (like three minutes later) a rescue vehicle paid for by the state saved us! I cancelled my tow truck and had my tire replaced for free since it was still under warranty! All in all, it was the best that could have gone. Laelia even went home from Discount Tires with a giant yellow balloon and slept through the whole drama on the side of the road. I was about to have a heart attack, but she thought it was a fun day. Typical. :)

In other scary news we had a drive-by shooting on our street. Don’t know what’s going on with that, and it was not at our house, but we’ve been spooked ever since. Here are some pictures of the house that was hit.

Some prayers for safety would be appreciated. It has nothing to do with us, and we have a long street and this was at the other  end of it, but it’s still scary. We’re a good community and my neighbors are friendly. The cops have made themselves a more visible presence since the incident, and I now often pass a police  vehicle, or see them  talking/being friendly with the neighbors. They want to keep this neighborhood a safe one. (I jumped while writing this when I heard some booms, but it turned out to be fireworks. Oh right July 4th. Whew.)

And I want people to keep in mind that this neighborhood is 100 times safer than our last neighborhood. We moved for safety reasons, but San Diego is a crowded place and when bad things happen they happen around LOTS of people. There were three people shot and killed down the road from us in our last place that I know of! The police reports that we’re signed up to get for our new area are not nearly as  bad as they were when we lived  in the city. Still, we’re taking precautions.

Okay that’s all my news. I know I glossed over it all, but I’m out of time. We have a ton of busy times ahead!

Oh I forgot about Arthrogryposis Awareness Day! I’ll blog about that tomorrow!

Splints and Parenting

Saturday, July 2nd, 2011

So Laelia has to wear her splints EVERY night. Every single night. No exceptions. If she doesn’t then I can tell a difference in the range of motion in her wrists. Stupid aggressive  arthrogryposis…

So we were bummed when the little girl figured out how to take the splints  off.

She’s been smart enough to take them off for a while now, but this last time,  Jill, the hand specialist, made them extra hard and tricky with double, mountainous  straps and everything.  Lali was thwarted for  quite a  while before finally  figuring out how to remove them. But thankfully she’s old enough now that we can make a rule to not take them off and she just has to obey us.

But to make this parental command a little more sweet, we told her that for every morning she  leaves her splints on she gets some fish crackers  or cheese  crackers.

The child loves her some novelty  crackers.

So every morning Laelia (who wakes up first) yells, “I’m awake now!!!” and her Daddy (since I have been at work for two hours by the time she wakes up) gets her and checks on her splints. Every morning she holds them up and announces, “Look at my splints! I want some crackers now!”

But lately during her daily stretches I noticed her wrists were stiff. Usually this means she’s having a growth spurt so I didn’t give it much thought.

Then one day I was on the phone with my dad and I heard, “I’m awake now!!!” I had put her down for a nap so I could call  my dad  in peace. I walked in and Laelia held up both her arms with the splints on and said, “My splints are on! I want crackers please!”

I answered automatically, “Okay, just a minute,” as I continued to half talk to Dad and half get her splints off.

Then it hit me. “Wait, I didn’t put your splints on for your nap!”

Laelia said, “Oh. Then no crackers. Let’s read a book!”

Me: “No, wait. Did YOU put them on?”

Laelia: “…”

Me (inspecting them closer): “And you put the stockinette on underneath?!!! And you worked the special straps on?!!??!!!”

Laelia: “…”

Me: “Answer me young lady.”

Laelia: “…yeah.”

Me: “Wait, do you do this EVERY MORNING?!!!!!”

Laelia: “Keeheehee.”

It was hard to think of an appropriate consequence while Lali’s grandparents laughed  their heads off  on the other end of the phone. :)

Which brings me to my topic of parenting. I feel like Laelia has made me do it a whole lot more since turning three last October. I was so relieved when it looked like we would be  spared the “terrible twos,” but instead we got a more advanced form of acting out in our super intelligent three-year old. Potty training for example has been a battle of the wills. And her  fits are so strategic that sometimes I just ask her while she’s screaming, “Laelia is this just so you don’t have to do what I asked?” And she’ll stop screaming (because she never was upset) and will start to bargain with me, “Um, so maybe I can eat a snack instead?”

*sigh*

But one night I had this mountain top experience with parenting. You know the term, when things are going badly then it’s like you’re in a dark valley trying to climb out. Then something goes well and you feel like you’re  on the top of the mountain, all the hard work behind you. That’s kinda how it went.

Laelia was screaming  because she had to go to bed and she wanted to play. I counted (I’m always counting) to three,  because she knows she has to stop by “three” or she gets a time out. I held her in my lap, facing me, and said, “I expect you to obey and not scream. You’re a big girl and you have the ability to obey really well.” But my awesome positivity and encouragement got thrown back in my face as she yelled, “You’re MEAN!”

Me: (taken aback) “I’m mean? Why?”

Laelia: “Because you counted!”

Her Daddy was in the corner of the room, slumped over and  completely defeated. It had been one of those days.  This imp in my lap had the frump face going pretty good and I was worried this would be a long conversation, and that’s when the genius parenting fairy came. *bling!*

Me: “Do you want to be the Mama?”

Laelia (frump face instantly melted away): “…yeah.”

Me: “Okay you’re now the Mama.”

Laelia: “Can you be the Laelia?” (her tone was so bright all of  the sudden)

Me: “Okay. Ready?”

Laelia: “Ready! (then she converts into an overly stern voice) Go to bed!”

Me: “WAAAAAAAAAAAAAAAAAAAAAAAAAHHHHHHHHHH!!!!!!!!!!!!!!”

(I just have to stop right here and say this was the most fun I’ve ever had as a parent. :))

Laelia: “There there. Don’t fuss. It’s bedtime.” She gave me a hug.

Me: “But you’re meeeeeeeeeeeeeeeeeeeeeean.” I continued.

Laelia: “I’m not mean. I’m Mama!”

Me (phony sniffles): “But you COUNTED.” (Trying to drum up the horror.)

Laelia: “Mama has to count so you obey. That’s not mean. You’re a big girl and you can obey. It makes God happy.”

Me: “So I have to go to bed?”

Laelia: “Yes. It’s past your bed time. (She had my tone of voice down pat  for that sentence.)”

(She gave me more hugs and patted my back.)

Me: “Okay Mama. I love you Mama.”

Laelia: “I love you too, Laelia.”

I tucked her in and kissed her good night. She went down without a battle. To think all that parenting had sunk in!

I practically strutted back to my own room.

Mr. Bear

Saturday, July 2nd, 2011

So Laelia has a giant  new friend named Mr. Bear. Or at least that’s what we tell people.  What we don’t tell them is that Mr. Bear is for me. Yep,  Mama needed a giant bear. No telling! Promise? Good. Now I’ll explain.

It started out with a much needed trip to Costco. We usually get a toy that Laelia can hold while I shop, then we put the toy back before we check out.  Well when we saw the giant stuffed bears and Laelia squealed in delight, we figured we’d found our toy. Giant bear in the cart for the trip. Done.

We had some issues fitting anything else in the cart with us. Okay a lot of issues. Mr. Bear (or  Bear-y or Joey or Teddy, as Laelia kept naming him over and over in her excitement) filled up the entire basket while his head drooped over Laelia’s shoulder. I almost ran into people because I just couldn’t see past him well. Some people pointed at us and said things like, “Look at that huge bear!” Or “What a lucky little girl!” But one couple just shook their heads with disdain  like I had bought one hundred pounds of chocolate for dinner. I heard them mutter, “Better ways to spend your money…” Obviously they didn’t know that I was only getting him for the trip and it cost no money at all just to drag him around the store. I refrained from sticking out my tongue at them.

When we got  to the check out,  it was time to say good-bye to Mr. Bear. Laelia was so cute about it. She said, “We have to go now Mr. Bear. Oh no. No no.  Don’t cry. Be a big girl, Mr. Bear. No crying. Someone will buy you. We have to go…” It was around this time that I saw that Mr. Bear was only $29.95.

I caved.

I think I wanted him just as much as Lali. I put a few things back (stupid budget) and got the BEAR. (I would  type “bear” but he’s so huge.  From now on he deserves all caps.)  He took up the entire back seat of my car, leaving just a bit of space for Laelia and her car seat. He was hot too. It’s summertime and this  BEAR was furry and huge and a million degrees! I was thinking how impulsively stupid spending 1/3 of my budget on a  BEAR was around the time I was dragging him  through my front door.

But Laelia loves him. And so do I. In fact she had to ask me if *she* could have a turn with him after I was done cuddling him. It’s just something about having a giant teddy bear that brings back  weird  longings from my childhood. I couldn’t stop taking running jumps on top of him with my daughter in my arms. We laughed our heads off!

I curled up with Mr. Bear and took a nap. Laelia also took a nap ON TOP OF HIM!  We were having a great time until Daddy got home.  Charley  just stared at Mr. Bear for a minute and then shook his head like those people at the store did.

Charley says I can’t do the Costco shopping anymore. …   …     ….  This thing pays for itself! :-D

Laelia threw up a few days  later  and Mr. Bear was there for her with snuggles and bedtime stories. It was the cutest thing! He’s just so soft!

So now I tell myself we don’t need the black one just like him back at the store. We don’t. We don’t. No.    :)

UPDATE: It didn’t take  Charely long to warm up to Mr. Bear. He now grabs the bear in front of him (completely hiding  his frame  from view) and says, “I’m gonna eat a little girl!” (in a bear voice I might add) and  chases Laelia throughout the house. :)

Guy and Rainy

Friday, July 1st, 2011

I don’t know if any of you realize this, but for as long as Laelia could speak well, she has  had two dear friends: Guy and Rainy. Guy is a boy and Rainy is a girl. They are both her age. They are both always on her side. And they are both trouble.

They’re also both imaginary.

At one point there was also a monster-creature named Bushka who frequented our home, but once Laelia started making friends in preschool then her imaginary friends became more like her classmates.

And this is embarrassing, but I confessed to Ms. Wilson, Laelia’s teacher, that for the longest time I thought Guy and Rainy were classmates.  :)   I mean, they seemed so normal, and she’d talk  about them all the time! Sure I knew they were also imaginary, but I thought they had real counterparts. So paying extra close attention to the names on the cubbies in Laelia’s classroom I was surprised to not see  Guy  or Rainy or anything close.  Guy and Rainy were no doppelgangers, they  were complete fabrications!

And  that’s weird. Because the fact is, we don’t even have any idea where she got their names. Sure she’s heard of guys and rain, but Guy and Rainy are both real names. And since I knew a “Renny” I tried to correct Lali once and say, “You mean Renny?” And she just said, “No her name is RAIN-Y.” That’s just odd, isn’t it? No one told her what to name them, but she named them actual names.

Often when we play Candy Land with Laelia there will also be game pieces for Guy and Rainy. Often when Laelia gets in trouble Guy is the first one to blame. Often when Laelia gets a treat then Rainy needs a treat too… that Laelia is more than happy to eat for her. :)

So we adjust. I hold the car door open longer for “the imaginaries” to exit the vehicle. I sometimes set plates out for Guy and Rainy. I leave spots for them to sit on the cough. I make sure that if we accidentally leave one of them at the store (you’d be surprised how  often this happens) that I call the store to make sure they get a ride home. (I use Mama’s imaginary phone of course.)

And, sure, we have long talks about what’s real and what’s imaginary. And what the difference is between imaginary and invisible (wind is real, but you can’t see it).

But mostly I just enjoy Laelia’s world.