My pretty girl.

Doctors told us ugly things.

Then we met this guy.

And started doing lots more PT.

And OT!

And proved them wrong.

 

Now we’re leaving this Sunday to fly to Philadelphia for knee surgery on February 1st.

Which means no more knee standing for a while.

And pretty girl goes back into casts.

And we’ll see lots of this face.

But in several months when all is said and done she’ll be able to do this:

(Photo credit.)

And *maybe* this:

(Photo credit.)

And why the heck not:

(Photo credit.)

Well, okay she’ll be able to walk better and have straighter legs.

Did I mention we leave this Sunday?!?!!

We need this:

(Photo credit.)

(But I’m tempted to make that last picture someone sleeping with chocolate in one hand and heavy medication in the other. )

We had a great Christmas and New Years! Here are the random pictures. Most of these pictures were taken by other people after our camera broke. We have bad luck with cameras!

Playing the piano.

Jumping rope. (Even though Laelia can’t jump yet.)

Making shapes.

Playing with Grandpa!

Getting ready to open presents!

After our 8 hour drive up to San Jose.

Showing off walking for Grandma and Grandpa.

Laelia’s cousin Levi steals her parents for a bit!

Laelia’s cousin Abby!

Food!

Cousins Abby and Gracie!

Playing spoons. Laelia’s mommy being super competitive.

Daddy cuddles.

Look at these goofy two!

Grandparents holding two of their three grandkids.

Family!

Grandpa cuddles.

Snake cuddles!

City Hall!

I took Laelia to downtown today because I am crazy and like to get lost in cities whose roads make no sense and are rarely marked with road signs!

We actually saw guys putting  up a road sign. Great! Now do that TO EVERY ROAD!

I called my husband (who I had warned before hand that we were going exploring and when we’d probably be calling him saying we were lost) and he was in a meeting! He said he’d call back in ten minutes! Ten minutes! I almost ended up in New Jersey in those ten minutes!!! So I called Chelsea and she helped me find City Hall again down one-way roads and back alleys. She saved my life. Did I mention I get lost every time I drive in Philly? And that Philly sucks? Oh I have? Countless times? Okay well then. We did get to see Independence Hall and the Liberty Bell finally.

Laelia stopped to see the birdies.

The birdies were digging little holes in the ground.

Looking up.

“She’s saying hi.” (Um, Lali, that’s a boy.) “But she has a ponytail!”

“Guys I can’t see!”

Me: “Here’s the most important room in American history!” Laelia: “Okay.”

Aren’t we cute?

Here it is!

So Laelia charmed all the guards and park rangers by being so sweet and showing them all her card with a picture of the liberty bell and asking them if they knew what this was and then telling them she was going to see it! She talked about it non-stop. Then we finally see it and she says, “Okay…” (she’s all excited) “Go for it!”

Me: “Go for what?

Lali: “You ding it!”

Me: “Um, no we don’t.”

Lali: “You don’t ding it? Then what do you do with it?”

Me: “You look at it.”

Lali: “…..”

History is boring.

I’m ready!

We fly out in half an hour!!! We’re ready! Looking forward to this two week trip for the last week left me a zombie with sporatic surges of panic.

(UggggggggggggggggggggggPANICPANICPANICuhhhhhhhhhhhhhhhhhhhhhhhhhhhPANICPANICPANICduuuuuuuuuuuuuuuuuuuhPANIC!!!)

One morning my husband found me just standing by the door with keys in my hand without moving. I knew that once I left home I would have to start preparing my final days at work and preparations for surgery so I just didn’t budge.

Oct 23rd: Today! We fly all day and arrive in Philadelphia at 11:30 p.m. We arrive too late to stay at the Ronald McDonald House.

Oct 24th: We move into the Ronald McDonald House and go to Shriners Hospital for Children at 1:50 p.m.

Oct 31st: Laelia is a bunny dressed like a duck (yes I got that funny costume worked out last minute) for Halloween in the hospital. I’m going as… well let’s just say it was the scariest thing I could think of depending on who you are. I’ll post pictures when I get home in two weeks and let’s see if you guessed right! ;)

Oct 25th-Nov 1st: We have intense out-patient physical therapy everyday.

Nov 2nd: Pin removal surgery with the most talented Doctor van Bosse.

Nov 4th: Fly all day.

Nov 6th: Officially home.

Nov. 7th: School meeting and my first day of work.

Wish us luck!

So Laelia was taking a nap after a ROUGH (I’m talking crying, hitting and biting) day of PT last Thursday. I was sitting on the couch contemplating how I was a bad mother while eating ice cream when I hear Laelia call out, “I don’t want a nap!!!” Okay, she was completely out cold when I carried her limp form into the house just twenty or so minutes earlier. So I did was any good mother would do, I hid I went and checked on her. Well I eventually checked on her. By the time I got to her door she was quiet again. Thinking she had gone back to sleep (and that there was a God!) I went back into the living room to hang out with my dad and Christina. Well moments later I heard what sounded like a door opening. Sure enough that little Turkey was sitting in the hallway outside of her room with a big “I did it!” grin on her face.

And the world of napping changed forever.

Dad had installed the door apparatus while we were at OT/PT and hadn’t even shown her how to use it! She got right off her bed and figured it out on her own. Stinker.

So now I have a child on the move!

Ask and the door will be opened unto you. Her new door knob and chain!

Let there be light! Her new light pull chain.

And lastly the video demonstration. Enjoy.

 

 

 

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!

 

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?’”

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’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.

 

 

 

 

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!

(To help Laelia and her Mommy get to the AMC Conference, please go here.)

So much has happened in the last few days! For one thing our summer plans are now officially crazytown. :) We decided, after a ton of encouragement, to attend the AMC Conference July 6th-10th! (This comes after announcing that we wouldn’t be going. What can we say, we thought it was a crazy plan. Mostly because IT IS.  But we’re in!) Then ten days after Mommy and Little Girl get back from the conference, a parent swap takes place, and then Daddy and Little Girl are off to Shriners in Philadelphia! (For a check up, x-rays, AFO adjustments and to schedule Laelia’s pin removal surgery for later in the year.) And while they’re in Philly, Mommy (who will have just become an aunt) will be traveling to Northern California to see her family, including her sister and new baby nephew who is due at the end of June!

This July is going to be BUSY! At least we hope so. If it all works out. I hope I hope!

Those involved with getting our family to and from medical treatment always humble me. The Ronald McDonald House in Camden, New Jersey, has us on a waiting list already. Also it looks like we will have flights through Frontier again. (They have given us our last few complimentary flights, and were willing to help again even though their program has changed!) It goes without saying that without these wonderful programs we would be forced to, I don’t know, move to Philadelphia? Hitchhike and live off the streets? Go without care for our child? Get second-rate surgeries from unqualified doctors? Be in an insane amount of debt? Probably. I am beyond grateful.

But back before anything with our Philly trip was worked out, and while I was standing in my kitchen just staring at my appointment letter from Shriners and worrying about the future (as I always do with medical trips), I can guarentee you that the LAST thing I thought would work out would be TWO arthrogryposis-related trips in twenty days! But then our wonderful friend, Kiersten, asked me to reconsider going to the AMC Conference, and offered to let us share (aka bum) her hotel room and rental car! (Despite the fact that last time she shared her hotel room with us, during the Arthrogryposis Clinic in Seattle, Laelia kept everyone up all night! I definitely won’t remind Kiersten of that. ) It was such a gracious offer that it sent Charley and I back to serious talks concerning the conference, and finally to a decision to go. And after that decision leaked on Facebook (that was all me ), we were blessed by so many people writing us and telling us how excited they are that we’re coming! I love the people in our lives!

Then several people going to the same conference told us about their success with Gofundme, which is a website where people can support trips to medical conferences, and just about anything else. So after more discussion, we decided to set that up. (See shameful begging for $$ above.)

Oh and the conference is not just a meet-and-greet, but a life-changing experience. There are break out sessions that cover everything from home modification to hippotherapy. (I’m hoping to get at least ten new ideas for physical therapy alone!) There are speakers who have already sent me their books or blogs, and other coordinators or board members of AMCSI who have already encouraged us so much that I can’t wait to meet them in person! Plus of course our doctor from Philadephia and other wonderful medical professionals will be there donating their time! So much all in one place!

AMC families are an isolated group. Arthrogryposis is such a rare thing that we are scattered all over the place. All previous AMC conferences have been in Florida, Pennselvania, Ohio, Texas and Chicago, so it doesn’t look likely that one will magically pop up in San Diego any time soon. And I’ve wanted to go to one of these amazing conferences from the time Laelia was born, but we just couldn’t work it out. So I’m super excited! It will be such a relief to meet a group of people who have been there. Who get it. They get the joint contractures and splints and frustrations. They cheer when their kid wipes her nose on the towels, trips his sister in the hall or steals candy off the table. Why? Because it took specialized motor function that doctors told them they may never have to accomplished those bratty behaviors! I want to be in the company of parents who get the fact that ”normal” is flying for surgeries and running over the cat’s tail with a power wheelchair and fighting your school to get them to treat your kid just like the other kids. I can’t wait to be normal with these folks. And I can’t wait for Laelia to meet so many people–kids and adults–just like her!

So thanks for supporting us with your encouragement! I really appreciate it! I feel completely overwhelmed by so much love!