Archive for the 'bye-bye' Category

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.

 

 

 

 

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!

July

Monday, May 2nd, 2011

(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!

Our New Home

Saturday, March 26th, 2011

Standing in front of our  front door  a year and a half after starting this process.

Laelia’s new room. (Before the walls were cleaned and the carpet ripped out.)

Our new housemate. He’s as big as a pen!

The stair. Click on this picture to go see the video.

So we finally found our home! We move in  next week, but  are starting the major cleaning/fixing projects now. The above picture shows Laelia sitting on the only major stair in the whole place! And if you clicked on the picture and saw the video then you saw that she can easily mount it! Remember when  that was a LOT harder?  

What this means for Laelia is huge!  National Seating  can finally  deliver her power chair! And the kind of independence and joy this will bring her will be immeasurable! Laelia has been looking forward to this chair since we first got it months ago. The only obstacle was moving into a single story place since our apartment complex had a several too many stairs. We are planning on building a small ramp on the left side of the stair just for her wheelchair, but that doesn’t stop  us from bringing it home.

We  have been  completely blessed by wonderful friends and strangers alike  in the last two days. It became clear by the size of the mess that it would be VERY difficult to finish cleaning and tearing out carpet before we moved in next week. I mentioned this to Brenda, who had a group of  ladies over (she is my model for  hospitality),  and within 24 hours her husband, David the Hurricane of Service (as my husband refers to him), had a group of volunteers over ripping out carpet!  Laelia LOVED having people over and mentioned the  names of the  people she remembered (Mike and Brenda mostly) again and again. She also went around telling  the crew to be quiet. Ah the three-year old princess.

David works at Fellowship of San Diego, a church down the road from our apartment who has left us speechless more than once. They barely knew us before they were bringing meals and visitors after Laelia was born. We have some great friends from there who we adore!  Well it happened that a group of people from California Baptist University were in town for the weekend doing service projects through Fellowship. So Saturday morning around  ten college students in work clothes came to scrub walls and rip out carpet padding! They were here almost three hours and did  more work  in that time than Charley and I could have done in the next week! It was amazing!!!

The living room (and stair) after demo.

Laelia “helping.”

Laelia LOVED having the team over. She sang them songs and showed off her new standing ability. She also followed a couple girls, Ashley and Raquel,  around very closely just watching them work. (Once again like the little princess she is.) She drove around in her little pink caster cart that my dad had made for her (the wheelchair substitute for shorter distances) going  back and forth to all the rooms to see what was going on. I think she was super bummed that they weren’t all moving in with us. :)

Our hearts are so  full of thanks I can’t even describe it! And we appreciate those who have gone out of their way to help us. Thank you so so so much!

It goes without saying that  we saved not only time but also money because of the abundant generosity of these friends and strangers. We decided to give back a bit so we donated some of that saved money to a little boy with Laelia’s condition facing some bad circumstances in an orphanage in his home country.

Click on the link to donate to baby Joel!

We also donated some of the saved money to Reece’s Rainbow, a wonderful organization helping  people adopt  special needs kids  from countries where orphaned  special needs children  go to  mental institutions where life is awful. (And “awful” is too mild a word.)  Laelia, had she been born there,  would be a year away from facing the mental institution, despite her intelligence  and beauty. Baby Joel is around four months old and it takes around seven months to adopt from  his home country in the Ukraine. If adopted soon he would be around a year old and still very viable for serial casting, surgery and splinting, as well as English learning! I love his little face, it haunts me, and I hope he finds a family soon.  Donating to his  personal account helps a great deal in that it catches the eyes of potential parents.    Laelia has three friends with arthrogryposis  who have been adopted through Reece’s Rainbow. It’s a great program! (You all know you want a mini Laelia. ;) He’s so cute!)

And if any AMC families need to come to San Diego for Rady Children’s Hosptial or any of the many services available down here, we’d love to have you over! Please let us know! Right now we even have one working, yet gross  bathroom! (Oooooh tempting.) We love meeting new AMC families and Laelia loves it too! Or if you’re thinking of adopting a kid with arthrogryposis, come meet our Laelia!

Again, thanks to all who helped us and continue to help us. Thanks for the  borrowed tools and cleaning supplies and painters. Thanks for cleaning walls and ripping out the little boards with nails in them. Thanks for helping us remove all the doors. Thanks for the prayers and words of encouragement. We feel so loved!

Blogging Out the Blessings

Wednesday, March 9th, 2011

Laelia finally gets to meet Mickey! Her summary, “He doesn’t talk much.”

We went to Disneyland last weekend with Laelia’s grandparents on Charley’s side. See, I do let her have a little fun between physical therapy and her exercises! Sometimes I even let her play video games.

Laelia really  doesn’t get  Dr. Mario.   :-D

Mama:  “No, honey, the blue pieces go on the blue guys! No the blue ones! Just wait for a blue one.” Laelia: “I made the pill go BONK!”   I think we were playing two different games. :)

Laelia is really good at technology! Are kids nowadays just born knowing this stuff? I couldn’t get my VCR to work half the time when I was a kid, and it only had six buttons! The other day I went upstairs for a minute and when I came back down Laelia had gotten the iPod Touch (the one we won in the raffle) off the coffee table, turned it on, slid the slide bar to unlock it, scrolled over two screens, clicked on the Angry Birds game, selected the last level of the first chapter and then beat it! She was happily watching the credits when I walked downstairs. What?!!! She’s three!

Anyways, where was I? Oh yes, lots of good things have happened to our family lately! (I knew I started to blog for a reason.) I had meant to write something earlier, but life has been crazy lately! I’ll just start off with the good news: We’re moving!!! We’re finally moving!  Our new place  will be  four minutes up the freeway  from where we are now. And we can finally  take Laelia’s wheelchair out of storage and bring it home! I’m so super excited I don’t even know what to say! My dad and Christina (aka Grandma and Grandpa) are moving in with us for a couple weeks to repair the place and maybe  add a ramp since there’s one stair that goes from the kitchen to the living room. Also the roof needs work, the pluming needs a lot of work including  the major water  damage it caused, the carpets are covered in dog urine and there are spiders everywhere. But besides the cracks and flaws, it’s home sweet home and we’re over the moon! (But this is the last time I’ll ever move into a fixer. It’s a  lot of work!) We hope to move in sometime in  the beginning of April and have it mostly fixed by the end of April.

CCS finally started up! We had our first appointment almost two months  after we started the paperwork!  We now  drive over there  twice a week, Mondays and Fridays, for PT. An OT eval  through CCS is also scheduled for March 16th, and who knows when that will start up.  I can’t believe how long this process is!  Laelia is no longer even  “post op” since her surgery was four months ago! And now she needs to catch up  on all this PT and OT that post op kids should get right after surgery! Ugh.  Bad system. Bad!  Of course the therapists don’t have any control over the process  or timing and then they get kids that needed them months ago–it’s just hard on everyone. But so far it’s going well and Laelia is working hard.

Also Laelia has been seeing a chiropractor to wake up some proprioceptors twice a week, but we just had her last appointment. At least for the time being.  We were making gains, but it’s costly and we’re going to see how she does without it for a while. But I have to say  Laelia’s lower lumbar has shown  improvement and I continue to do the  two exercises I learned from the chiropractor  on Laelia everyday.

Can you spot the feet in this picture? :)

I’ve been praying a lot about Laelia’s poor little feet lately. I won’t go into the AFO drama, but she’s had sores and infections and pain and redness and… issues.   And we have tried everything. (So exasperated.) The doctors recommended recasting her until new AFOs can be made. At the word “casting,”  a little girl begins to cry… and sometimes Laelia cries too.  Mama hates casts! And I’d hate to go back into them and  wreck our new PT schedule. *cry*  I’m hoping maybe we  can just cast the left one since the right foot seems to respond to my torture sessions better.  (I am still stretching  both of her feet three times a day.)  We go in to see a new orthopedic doctor on March 18th to see what he thinks, and see if he’ll cast her.

(UPDATE: I just got back from Johnson Orthopedic this afternoon. They added some temporary  padding to  Laelia’s AFOs,  and they made molds for new ones! They think they could be ready in two to three weeks! If so, it’s almost not worth it to cast her up, especially if we have to wait until March 18th to even start the process. So I’m thinking that we may not have to cast her, but I don’t know for sure. I’m keeping my fingers crossed and hoping the shoes  are made  quickly!)

I know there’s more good things that have happened resently, but I’m having trouble thinking of  them in the few minutes I have to blog. Oh, well, here’s one: I love  Laelia’s doctor! Can I just  say that? Love him! I know people think that I’m crazy to travel 3,000 miles to see him, and I especially feel the distance when we deal with these AFO issues, but I just love him! He emailed me the other day (as he often does  to check on Laelia)  just because he and his wife were watching Laelia’s You Tube videos at home and he  can’t wait to see her walking! He definitely missed that class in medical school where doctors learn to be uncaring, hope-sucking egomaniacs. Plenty of our other doctors took good notes in that class, believe me.

Well I took my blog break and now it’s time for Laelia’s push ups. There’s a video of a dog on You Tube doing push ups that we watch while Laelia, who  also pretends to be a doggie, does her push ups.  I also  found a video on You Tube of a Sea World  walrus doing sit ups, so we’ll do those next  along with him. Then she’ll be a butterfly to work out her arms and legs, then a giraffe who has to  reach her long neck (standing up) to eat “leaves” (potatoe chips) off the tall tree (my hand). Then she’ll be  an elephant in a circus and have to lift up her leg while balancing on her other three legs, then she’ll be  a kitten learning to crawl, then she’s an earth worm for her back exercises, and then,  hopefully,  she’ll be a little girl again just in time for daddy to come home. Wish us luck!

Busy!

Monday, January 31st, 2011

Kisses and secrets!

Can I have some?

Pictures of  the going away lunch for Adam and Chelsea as they head to Tanzania in twelve days.

We’ve been super busy lately. I had a frustrating experience today with Children’s Hospital and their scheduler. Charley and I  both. Ugh. They may call back tomorrow. So moving on.

Today I called CCS to ask how things were going. I think my contact forgot that she was suppose to call me, because she sounded surprised to hear from me. Evidentally she had forwarded our packet to San Diego South’s Medical Therapy Unit. So I got their number and  left a message on  their weird answering machine that didn’t have a greeting. Feeling weird about that, I called back later and got someone who asked if I was getting services for a tramatic event. (Oh those poor babies!) I told her  that Lali had been diagnosed at birth. She was surprised that we hadn’t done orientation yet so she said they would call me back tomorrow and set up an orientation. Then she mentioned that if it was more urgent (like a tramatic event) they’d also try to work out an evaluation. I quickly mentioned we had had surgery and gotten casts off on January 7th  and she said, “Oh! She had surgery? When?! Well we need to move faster! Let’s do the eval the same day.” Finally! I’m just relieved to be moving forward with an actual person who knows our situation!

I seriously don’t know how shy parents get these services. I feel like I’ve had to hassle every single person in this organization so far. I mean, I’m a nice bully. :)  I’m sure they didn’t set up this system to make  parents in hard situations  have to  go through this much hassle to help their children.

Today we also went to Laelia’s second ever chiropractor appointment. It’s so wonderful. She loves it so much! She tells  the doctor  when something feels good, and it all feels good. I set her on the table and she immediately laid down on her tummy,  put her head down and took a deep breath. So cute! Plus the doctor tells me she is the smartest, most well-behaved kid he’s ever seen. Love it!

Today I also contacted Laelia’s pediatrician’s office to get a referral to Johnson Orthopedic. It’s slow going, but eventually we may get this AFO fixed.  I followed  up with CPMG after we’d gotten home today and they were closed. Grrrr. I really hope between my work schedule, Laelia’s school schedule, doing a CCS orientation and evaluation and working this out  with insurance  that we can fit in an orthopedic trip tomorrow. I think it’s wishful thinking.  Wednesday we have a PT coming to our home  who is paid  out of pocket (as opposed to  going through  insurance) so we don’t cheat CCS.  I’m hoping she’ll give us a few more ideas that we can do at home! I’m thrilled that she’s coming to us!  Thursday we have an occupational therapy appointment with the best hand therapist in the world, Jill Peck-Murray, to get Laelia’s splints adjusted. Friday we have another chiropractor appointment and also my dad and Christina are coming to  visit! Then after a weekend of fun with them, we’re all going to Disneyland on Monday!

I really need to clean. No time.

Tonight Laelia’s stretches were easier. Maybe it’s the fact that I do them every hour or so  instead of once a day now.  Laelia was even able to count down the 30 seconds out loud with me instead of just  screaming the whole time. It’s just very nice.  

We also have the dorsilflection straps on her left AFO up to the line! That means it’s on correctly! Twenty-four days after we got them and  I have one stupid shoe on correctly. Hurrah!  :)

Okay the correct AFO lasted exactly 19 minutes. She just screamed her head off and it’s far enough past her bedtime that I loosened it. Still, we’re  getting there.

My throat is still sore and my back hurts, but I’m doing much better physically. My vertigo episodes are down to maybe two a day and that’s it. Also Laelia’s  sore (crater)  looks better I think. It doesn’t bleed as much so I think that means it’s closing up.

Our new rule about only watching cartoons while actively weight bearing is working beautifully. I’m thrilled with this. Laelia will even tell me, “Mama you need to pause Blues Clues. I need a break.” :) But while waiting for the chiropractor there was a television playing and Laelia had to point that out while grinning like she was cheating the system. :)

So things are better. Now I need some sleep.

New Legs!

Wednesday, January 12th, 2011

Today at the grocery store I went to remove my daughter from the shopping cart and, before I even touched her,  she grimaced. She grimaces every time. Not because she hates grocery shopping as much as I do, but because her wide legs  always catch the cart, and her knees, that  stick out past her hips on either side,  bang against the metal frame. It takes two people to successfully remove my child from a shopping cart: one to hold her legs together and the other to lift her out of the seat. But  there was no one else around so Laelia grimaced. Like she always does.  

But what a shock when her legs slid right out!   For the first time in her life, my daughter  has legs that are positioned correctly to fit in the shopping cart seat!   Thank you Father God!  Thank you Dr. van Bosse! Thank you Shriners Hospital for Children in Philadelphia!

Laelia’s legs, a history:

10-10-07 – Laelia’s splayed, externally rotated legs at birth.

10-29-07 – Laelia’s first casts to correct her feet at three weeks old.

2/23/09 – One of our attempts to keep Laelia’s legs together. :)

2-14-10 – Laelia’s corrected feet (that finally fit into shoes) look great, but  her  legs  are still  so splayed and outwardly rotated  that  her toes point away from each other and her knees go off  in different directions.

(Her shirt says, “Dr. van Bosse Fan Club.”   Thanks Jessi!)  

1/11/11 – After seeing Dr. van Bosse and getting her osteotomies, Laelia’s legs are now straight! Her  knees now  crown her legs instead of jutting out to either side, and her toes point up instead of  away from  each other! She’s in the position most people have naturally when sitting or standing! And boy did she work for it!

The trip back to Philly was exhausting.

And required a lot of travel. Her friend, Justice,  gave her a push, but he didn’t go all the way to Philly so we had to get on a couple airplanes too. :)

When we got there it was so cold! Too cold for this little California girl!    Lali had  never seen snow before and asked me why it was  wet and cold.  She thought it would feel like pillows.  :)

At the Ronald McDonald House we spent time with Sophie, Ben and  their Mommy, Tammy! (The next day  the five of us would all get in a big rental car and drive to Shriners!)

Mama got practically NO sleep that night… or the next night… or on four of  the five airplanes we took. The reason for that was one little girl who would not let me sleep. The only sleeping she did do at the RMDH was when she was faking it for this picture. Mommy about strangled her. :-/

The next morning  we waited for our appointment with our friends. Here’s  baby Lexi!

Before cast removal.

After cast removal.

Lali’s new legs are so straight that I often find her staring at them like this. :) My favorite Laelia quote in her sweet little voice, “I’m very beautiful and straight now after my surgery.” Precious!

Her legs go together!

 

Her legs go apart! (She’s sporting the Wicked Witch of the East socks. :))

Oh and here’s a video of her waiting for Dr. van Bosse.

Laelia took FOUR baths while in Philly; I just emptied the tub when it got cold and filled it back up again.  Each time a new layer of dead skin got  gently massaged  off. She LOVED getting bath time back!

Laelia’s feet (especially the right foot) swelled up pretty bad  after our three (in one day)  airplane rides back home. It was because of the new, aggressive  AFOs and all the pressure they caused. Now she gets foot massages everyday until the swelling goes down.

But no matter how bad the travel, surgery, recovery, swollen feet or negative comments from strangers got, look at this end result! Look how straight she is!    Compare the above  picture of her lying on her side  to this!   Amazing, right?!

So now that I’ve gone through the eye candy (aka  pictures), I guess I’ll sit down to actually chronicle our journey. It was long and hard. Wait, that’s summarizing our journey. I guess it’s going to be hard to write about. Half of my brain no longer exists because of this trip; it was that exhausting.

I just want to say we had zero problems with flight attendants. Every one we met was courteous or helpful or nice. This is a major improvement from last time! And this is the first trip  where I prayed about this specifically.  It just made the whole trip seem surreal. Where were the fights? :) People I handed Lali’s card to were just really interested in her. It was great!

I also want to say that our needs kept getting mysteriously met. For instance, I got a rental car, but it was going to be too small to fit all my passengers. But before I even realized this I was getting help out to my rental car by a nice lady (just another traveler) when I heard her whistle and remark, “Wow, that’s a nice one! That must have set you back.” I was totally confused as my tiny rental car was unexpected, unasked for,  upgraded for free  to a larger vehicle! It fit all of us including three casted kids in the back, all our stuff,  a wheelchair and a double stroller.  

But not only that, our little needs got met too. I ran out of arms to carry things on the plane and several strangers at several different times helped me. Lali and I  were hungry but we  had no cash for the cash-only cafeteria so  they gave us  food  at no charge. We got lost,  but ran  into a security  guard we recognized who gave us directions. Getting lost meant I didn’t have time to stop for  gas for the rental car, but  Thrifty Rental decided to waive the fee and cover the gas.  It snowed, but we stayed on the road.  The Ronald McDonald House doesn’t take reservations, but we were able to stay  at the house  we wanted that was closest to the hospital.  Laelia was an excellent flyer and was well behaved through five airplanes! That in itself is a miracle! (And when we got back and I praised her in front of her father, Laelia beamed with pride.) I had a vertigo episode so bad that I fell over during Lali’s PT appointment, but that was the only bad one the whole trip and it was in a safe place!   Laelia would not sleep at all, so we ended up leaving at 3:00am our last night there because we were up anyway. We would have missed our flight if we hadn’t since we got lost, the elevators at the airport were broken and the flight was at 6:05am!

Pretty much lots of things just worked out. If I had written them all down, I could write a whole book of blessings! Our needs were met again and again. Our comforts not always, but our basic needs were covered.

I had  a sore throat, vertigo, stomach cramps (diarrhea and vomiting), a headache that only got worse when I got home, and stress and dizziness caused by lack of sleep while on this trip. I  didn’t sleep more than about three hours in four days. So this was a hard trip.  In fact, I got so sick the night before our appointment that I stopped up the toilet in  our room to the point that we had to switch rooms!

And the whole while  one special little girl refused to  let me sleep; she was too jet lagged and excited.  (She would not sleep the next night because  of pain and discomfort.)  I yelled at her once. I said–and I remember it exactly since it’s the second time I’ve ever yelled at her–I said, “I’m SICK and TIRED of YOU!”   Since then if I’m down or frustrated Laelia will  ask me, “Mama? Are you sick and tired?” It breaks my heart.

I  tried Lali in the bed with me, Lali in the other bed, Lali on the floor and even Lali in the closet! Nothing worked. She would not sleep. Finally in the middle of the night (around 3:30am) Lali asks me, “Mama, will I go to Heaven like Grandma if I die?” Okay now I was wide awake. I told her she wasn’t going to die, she was just  too sleepy and needed to get lots of sleep. (I was very desperate for sleep.) But she asked again, “Will I be with God if I die?” Sure honey, just sleep now. But it seemed to bother her so I cuddled her close under my chin, her fuzzy hair going up my nose, and said that she was God’s most loved kid. Then when it was clear she would not sleep I told her her favorite story of Adam and Eve. I told her how God created  Adam and Eve  and how good they were and how he loved to hang out with them and how Mama is sure they always went to bed on time and slept through the night. :)  Laelia loves to chime in that they ate the fruit when they weren’t suppose to and that’s called sin. And sin is “anything we think, say or do that makes God unhappy.” (Insert Laelia’s sad face here.)  And how sin pushes God away (insert Laelia pushing me here)  because God is holy. Then I resume my story once I get it back and add that God caught them in the garden of Eden all naked and ashamed so he sacrificed an animal, using its skin/fur  to cover their shame. And how the punishment for sin is death so people used to sacrifice animals to cover their sins temporarily. But how Jesus was called  “the Lamb of God who takes away the sin of the world.” And how he died in our place, to take our sin away in the same way. Then he rose from the dead. So Laelia said, “Jesus died for my sin like a lamb! Now I can be with Holy God!” And she accepted Jesus as her savior with all the passion of a three-year old trying to get out of bed time.

Before we realized it, it  was morning and we’d gotten zero sleep. Time to drag ourselves into the snow for cast removal, AFO fittings and a very special, life-altering (although we didn’t know it at the time)  doctor’s visit.

Our insurance change slowed the whole process down a bit. Cast removal was a dramatic event. Laelia screamed louder than I have ever heard her scream before. It was unnerving. And the screaming lasted as long as the cast removal, a whole 20 solid minutes since they had to saw around the bars. Then we were on to x-rays.  These were  the first x-rays she ever took in her whole life that she didn’t cry/scream through. (Small victory!) Then off to  her AFO fittings. That took forever. It was at this point that we realized no one had a small child’s potty for her to go number two in. And she was afraid of the adult toilet because she could fall in. So she had to go number two in  a diaper while waiting for the AFO guy, which embarrassed her a bit. When we finally got to our doctor’s appointment, AFOs in hand (well, on feet) it  was after lunch.

We briefly met Zak and his daughters, one of which is Grace who has AMC, and the Nalle family whose blog I follow. The Nalles adopted Aaron and this was their second trip to Philly–their first casting. Poor Aaron.

Then we finally got to see Dr. van Bosse. Even though he was pleasant as always, we were hit with a life changer. Laelia needed a lot more than what she was getting. She needed two PT appointments a week with a professional. She needed stretches and exercises several more times a day. She needed weight bearing. She needed her feet stretched. And if we couldn’t get these things then we needed to start contacting our local government. We could no longer just do PT and OT once a month because it cost $80 a visit. If she is going to walk, we needed to step it up.

Well I work full time so that creates an issue. Her school won’t do a darn thing, not even simple stretches. It’s a mess. Dr. vB also mentioned that if worst comes to worst I could have her bused up to Los Angeles to get free PT at the Shriners there. That would literally be  six hours away from home twice a week.

And on top of it all, it was going to be a painful time for Lali. Especially the first two weeks.

My husband and I aren’t always graceful in how we handle all this stress. Charley once asked me once I got home  to stop doing Laelia’s stretches in front of him because he couldn’t take it anymore. Laelia’s pain makes us crazy. And I get so upset with how everything has to be so much harder for her. She can’t do simple things seemingly everyone else on the planet was born doing naturally without huge effort, surgery and pain! It sucks! Laelia says, “Pain is good because it means I’m getting better.” At least one of us has a good attitude… when she’s not screaming.

And I’ve been dealing with her preschool as well. They are a government-run facility, meaning they can’t “quit me.” But the head admin there  can be the least amount of understanding as humanly possible to make our already miserable lives even more hard. It’s willful ignorance.

So life has changed, and life is hard, but we continue on. Our beautiful daughter looks at herself in the mirror often and stares at her straight new legs while smoothing them with her hands. I don’t think she gave it much thought before, but she now thinks of herself as very pretty.  And she  is.  

We weren’t given bad news in Philly, but we were handed change. And that’s always hard. I hate change. It makes me feel out of control. I like things to stay the same. But I know if they did then  my daughter would not  have her lovely straight legs. I just need to focus on the positive.

Maybe I’ll go  buy a shopping cart and then just spend hours putting my daughter in and out of it. Just for the fun of it. :)

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! :)

Love is Kind!

Tuesday, November 23rd, 2010

Friday was the best day. We had our flights scheduled for 5:00 pm that day, but we were planning on delaying those flights because I didn’t think there was any way we could go home.  So when our doctor discharged  us at noon that day  I was shocked!    It had only been three days since her surgery, but  Laelia was already  doing so much better. She looked battle-damaged and weary, but her little imp smile had come back.  Shriners was wonderful and let us borrow a wheelchair for the trip home. (Our insurance is changing during recovery  and  wouldn’t cover it so Shriners just handed us one.) And they fitted us for a new  car seat that would be better for her wide casts and took our pink car seat in a  temporary exchange so we wouldn’t have to carry them both home.    

Car seat fitting.

Watching TV in her wheelchair. Mama is resisting the urge to pinch those cheeks!

Friday was a great visitor day! Just three days after surgery and she was already so so so much better! Plus we finally got to meet Tracey Schalk in person!

Tracey is on the right. :) We’d been friends online for a while. Tracey is great! Anytime there is someone with AMC in Southern California, Tracey inevitably finds them and sends me their contact info from Ohio! Tracey came to our room and gave Laelia a surgery present! Tracey and her mom, Cheryl, had emailed me a lot about Shriners in Philly and how to get Laelia care there. They, along with the support group (amcsupport.org), never lost hope  in Laelia’s future even when five doctors did. I was so happy to finally meet them! And I love the Dr. van Bosse Fan Club shirt! I want one!

Friday is also clinic day. So we knew a few other kids with AMC would also be there! It’s so rare to find kids with AMC, so it’s weird having so many in a waiting room! This really does feel like AMC Mecca sometimes. So using our new borrowed chair we went down to the forth floor. We finally met Tammy in person too! I recognized her from her facebook pictures. And her daughter, Sophie, and son, Ben, both have arthrogryposis. Laelia is Sophie’s “mini me.” When Sophie learns to do something (like drink from a cup without using her hands) then we see the video and Lali is soon to copy her. Sophie was so cute;  Charley was totally charmed. :)

When we were leaving the forth floor and waiting for the elevator, a lady I’d never met came up to me and asked if  I  was Laelia’s mom. I said yes. Then she looked over to spot my daughter smiling at her and verified that this was indeed Laelia’s family. Her name was Anna and she  wanted to thank us for our blog and tell us it had been one of the things that had helped her get her son with arthrogryposis in to see Dr. van Bosse! She had just adopted him from China! You can read their story here.  That was so neat! It gave me goosebumps!  And of course during their stay, Tracey already had them connected to another family there who had adopted a little girl with arthrogryposis from China. Wow!

We had to say goodbye to our new friends and pack up to leave.  We learned  what pain meds to give Lali and  how to change her bandages. (By the way, they didn’t make us go to a pharmacy to get her meds, they  just delivered them free of charge right into our hands!) Then Laelia announced she was ready to use the potty! So after getting a potty and  figuring out (with the help of a nurse) how to get her on there, and waiting through  five minutes  for the waves of pain to die down after  being picked up and transferred onto it,  she went poo poo in the potty!  I couldn’t have been happier!  What a great day! That may sound silly, but it was such a relief, and she looked so much more comfortable after that.  

At noon I ran back to  the Ronald McDonald house to check us out. I followed the check list and changed the sheets, made up the beds with the comforters, folded the blankets,  turned off the  heater, cleaned the bathrooms, wiped down the walls and vacuumed the room.    I made sure it would be perfect for the next family in our situation who would come for comfort and rest. Then I took the trash out to the dumpster, grabbed some Cheerios out of the help-yourself  pantry and paid our bill in full which totalled less than one day’s stay  at a hotel! Love this place!

Then we decided since we had two and a half hours to spare that we would drive the 40 minutes to the airport, drop off Mama and Miss Post Op, then Charley would drive downtown and return the rental car and take a cab back. This was an alternative to going downtown together and then having to take a shuttle back. The plan would have worked too, except for the meddling  traffic.  So last minute in the drop-off zone of the airport we had to move all our stuff into my bag in case we had to fly back without Daddy. Charley helped me carry the kid in her car seat, her wheelchair, our giant bag and a back pack into the airport and then he drove off towards downtown. I watched several people walk right past me as I slowly dragged everything at my feet one inch at a time. A couple in their forties  with one bag between them  stopped behind me and I thought they were going to help me, but they had thought I was in line because I was going so slowly. Then they complained under their breath about me being in their way and moved past me. A couple of security guys stood there and watched me. Finally I made it all the way to  check in–dragging a car seat with a kid in it,  then going back and dragging the bags then dragging the kid in her car seat a few more inches, repeat repeat repeat. It took me half an hour. At the front I set up wheelchair assistance for the rest of the trip and then waited for assistance. As I waited I worried about my husband who was now very late. An airport employee took my daughter (only airline employees are allowed to pushthe wheelchair) to our gate as I followed. Charley wasn’t at the gate either. In fact I was starting to steel myself for a solo flight home with post op kid who needed pain meds on the plane. Then I saw Ryan’s family and realized I wasn’t alone.  We found out that our buddy, Ryan, and his family would be on the same flight back with us! These kids are practically twins. So cute!

Going home with our read-headed  twin, Ryan!

Charley showed up minutes before boarding, then he took off to get a slice of pizza! That turkey. :)  Laelia slept on the plane like a champ, even though  she was somewhat restless, tossing her head around. But  right before our decent into Denver, Laelia woke up crying out in pain. Her legs hurt her and she was  grabbing at her casts, face contorted. We decided to unbuckle the car seat to lay her  across our seats and give her the liquid meds. She didn’t swallow them of her own volition so we had to lean her back and force it down her. That’s when we realized that the seat belt was stuck on the inside of this  giant, borrowed car seat. I was near tears and she was crying in pain and we considered cutting that airline  seat belt off her! The problem was that  the car seat back  was too narrow. So you can buckle it, but you can’t lift the darn flap to unbuckle it. We didn’t have this problem in the car since it was  a push button release.    It  took a long time to get it unstuck; Charley cut up his hand doing it. The whole time this guy sitting behind us kept saying super helpful things like, “His ears are just not used to the altitude, he’s fine Mom.” (Taking out our daughter’s earrings for surgery made her a boy no matter what pink dress she was in. And could he not see my child was in full leg casts???!) Finally we were able to get her out, give her meds and put her back. That’s when the person in the middle seat in front of us leaned his seat back and we saw that the seats went too far back and if the lady in front of our daughter leaned hers  back it would really injure her! So diving  forward, Charley explained our situation to the lady in front of us and we offered to switch seats with her if she wanted to lean back. She smiled and told us she realized the situation the moment she got onto the plane and had already decided she wouldn’t risk leaning back with that poor baby behind her. Whew.

For the next flight after a couple hours lay over we asked the boarding agent to move us to the front of the plane because of the leaning-back situation. He changed our seats, but it turned out that the car seat was too wide for the front seats with their fixed arm rests. So we had to switch seats with the second row (who didn’t like that they couldn’t get to their bags anymore) and the young lady in front of us was given free tv by the flight attendent  for the flight if she promised not to lean back. She complained, but agreed.  When we thanked her  and offered to switch seats if she wanted to lean back  she just said, “Whatever, it’s fine”  but continued to complain that  she’d had a long day of flying… childless, pain-free flying.  I wanted to smack her.    

When we arrived in San Diego I was so ready to be home. Laelia was due for more pain meds and I wanted to put her in her own bed to let her finally sleep soundly. Unfortunately the wheelchair assistance I had set up fell through. We waited 25 minutes for a wheelchair and the lady at the gate said, in effect, “too bad.”   They said it was too late for wheelchair assistance (after 11:00 pm) and the couple of pages they sent out over the PA  for a wheelchair were unanswered. Our own wheelchair was downstairs in checked baggage so we were stuck. Charley started to slowly drag her car seat down the airport corridors. After ten minutes of dragging we saw an airline guy walk by with three wheelchairs! We were relieved and  waved him down  to explain through the exhaustion that one of those was for us. He asked what airline we were on and when we said Frontier he explained that these were for American airlines and he left us there. So we dragged her in her car seat the long length of the airport. Every time she went over a bump she cried out in pain and I snapped at her dad. I was ready to kill someone at this airline. I hate traveling to Philly. Hate it. Hate it. For every airline person who is kind to us, ten are not. Seriously.

When we  got to  our bags downstairs, Adam was waiting for us. He lifted  Lali’s car seat up with her in it and carried her right out to the parking lot! Adam drove us home and we walked in the door to, not joking, this:

Clean!

Clean! (The stuff on the table I put there afterwards.)

Labeled tubs magically appeared in my cabinets.

Everything was organized!

No more “junk” drawers!

The kitchen cuboards were cleaned and organized. A spice rack appeared in there!

Laelia’s room was the best part!

It was so much roomier with the crib stored. The cubbies were new and everything was clean! Even all her clothes were folded! She loved it!

The night before we flew to Philly, Lauren and Chelsea had come over to clean. Lauren  tackled my kitchen like a pro while Chelsea took some notes. I left a key because  Chelsea said they  were going to “finish up” while we were gone. Well apparently for the five days we were gone Chelsea and Adam and Brenda and Laura and Dorothy cleaned and organized our whole apartment! I can’t express how wonderful this was! It was like walking into a stress free environment after days of stress! At first when we  stumbled in Friday night I did noticed it was clean and I was very thankful,  but it wasn’t until I gave Lali her medicine and put her to bed that I was able to  relax and notice my surroundings fully for the first time.  We slowly realized the extent of the work put into our place.  It is rearranged to make best use of space. Things were purchased that we didn’t own to make it more organized. And Charley and I went around opening random drawers  that were all completely cleaned and organized!  It was like Christmas morning! This was  an overall giant cleaning/organizing   job that must have taken hours and days and so much effort–I can’t even imagine!

Laelia slept for ten hours that night, making it the longest stretch of sleep she had gotten in almost a week. Her record before this was four hours. Being in her own bed, surrounded by her toys instead of monitors, did the trick. It almost made flying that Friday (a crazy endeavor) worth it.

In the next couple of days (through the weekend) we had some fun worries when her incision site decided to make us needlessly worry.

Is that spot gangrene?! Does she need antibiotics? Nope. It was fine.  But we panicked and  called the doctor anyway.

What in the world is this large purple thing that’s hard to the touch and popped up over night? Turns out it’s bleeding beneath her skin. It hurt her one morning and she had me rub it. Then this happened. Doh. So I emailed this picture to Dr. van Bosse and got an email reply immediately that calmed my fears. (What doctor emails you back? And quickly?!!)  

So the above two pictures were the cause of some panic, but looking back on this whole adventure Laelia is healing well, recovering nicely and on track for getting her casts off on January 7th!

Also one thing that made everything better, and this was my life saver, was apple sauce! Her liquid meds are best taken with apple sauce because it  covers up the taste beautifully! I haven’t had to force anything down her throat since discovering this! We tried mixing it with other things, like chocolate pudding, but nothing works as well.  This is so  much  better than having to squeeze those little cheeks and make her choke! Apple sauce. God’s gift.

Laelia hanging out.

Today marks exactly one week since her surgery, and I can’t believe how miraculous this  kid bounces back from this stuff! She’s doing well. We can now pick her up using a blanket under her for support and it only causes her a little bit of  fussing that she quickly gets over. As of yesterday (Monday) she went all morning and afternoon without pain meds. Now she’s down to taking a little something before she sleeps. She’s  got  that cute little personality back and she is already wanting to help with laundry again and play with her kitties. It’s gonna be okay. People told me it would be “a hard week,” but I never knew exactly what that meant until now. Yes. It’s a hard week. The first 24 hours are the worst, by day three it was a lot easier on her and just seven days later she’s singing and laughing and playing again. I have a lot to be thankful for  right before Thanksgiving.