Archive for the 'little girl' Category

Arm Surgery Results! (rotational humeral osteotomies)

Saturday, May 31st, 2014

Once upon a time there was a little girl named Laelia who was born with internally rotated arms due to amyoplasia, one of the many types of arthrogryposis multiplex congenita (AMC).


It meant her little arms faced the wrong way. Go ahead and try it! Stand with your arms hanging at your sides. Notice how your palms face your body?


Now turn your arms around until your palms face away from your body.


Now imagine living life stuck like that. It would affect your…






Pushing a stroller…


Pushing a wheelchair…


Holding a basket…


Holding a hand…


Even holding a magic wand!

This is what Laelia’s arms just did as they hung at her sides.



On February 12th we had surgery in Philadelphia at Shriners Hospital for Children to remove hardware in Laelia’s legs and do some releases in her thighs. (Our lower limb doctor is the amazing Dr. van Bosse!) We realized we hadn’t seen an “arm doctor” in a while since Laelia was so functional. We asked if we could see Dr. Z (Zlotolow). He agreed to see us last minute before he left for the day since we flew there from California. (People from some foreign countries fly less of a distance to come here.) He showed us how Laelia’s arms were rotated. Duh, we know, that’s why we do all those stretches! Then he showed us how surgically rotating her arms would make her more functional.

So we discussed what the surgery would mean for Laelia and if she was cool with it.

She had some different ideas for this surgery. She wanted something to make muscles go into her arms.


Laelia’s vision

We explained that this would not do that, that she didn’t qualify for surgery that could do that since she’s missing the nerve endings and enough healthy muscle for a transfer. Well, at least where medical science stands now. But this would rotate her arms so she could eat lunch easier. She agreed that was something she wanted.

Six weeks after Laelia’s “last surgery for a while” we were once again traveling 3,000 miles back to Philadelphia to undergo surgery. Dr. Kozin and Dr. Zlotolow each took an arm and like synchronized swimmers they gracefully rotated them at the same time. (This was the first time they had EVER done both arms at the same time; and only because we were a special case.)


“You take that one; I’ll take this one.”


“Okay, go!”

And she got out of surgery looking like this:


This picture marked the first time in Laelia’s entire life that she had arms facing the right direction. *getting emotional here* And instead of actively forcing them into this position she was unconscious. Unconscious! I’d never seen her arms like this while she was asleep before!

(They could have rotated them even more, but then she wouldn’t have been able to reach her bottom to use the potty independently. She’s 100% independent in the bathroom now, depending on the outfit. ;))

Four weeks of casts later…






Hi, casts still.


Back we flew to Philadelphia! (Making it TWO trips to Philadelphia we hadn’t budgeted for. :))

And casts finally came off!



And that affected her ability to…


Hold Fuzzy Bear…


Color her Scarman coloring book


Play a game of cards…


And even fold her hands together!

Funny story: Charles and I were complementing Laelia’s new arms while she sat there and beamed. Finally we looked at her for her response and without missing a beat she put her fingers together (a feat that’s new since surgery) and said in the most perfect Mr. Burns voice, “Excellent.”

We died laughing.

Oh and her IEP (Individual Education Plan, required for special needs kids to go to school) happened around six weeks after surgery and her adaptive PE teacher, occupational therapist, physical therapist, the school principal, her teacher and aides all spoke about how she can write better, feed herself better, hold things better, etc. She had missed a lot of school for this, but she came back a totally new girl with different abilities! And they were amazed!

So to recap: We walked into the hospital like this:


And walked out like this:


Video of Laelia

Monday, September 16th, 2013

I created this video of Laelia learning to walk as a present for her 6th birthday. I used all of the videos I had of her where she is moving her lower limbs. And let me just say that there were not many videos of her even moving her lower half for the whole first year there, despite daily physical therapy and stretching. Wow, it’s amazing how far she’s come and how hard she worked. Laelia’s birthday party isn’t for a couple of weeks yet, but tonight she caught me editing, saw it was videos of her and then squealed and demanded to see it. (By the way this is my first video editing job EVER and it was really hard and I cussed a lot and now I hate technology.) So the cat’s out of the bag and I’m just going to make it public.


Laelia’s Song

Wednesday, December 26th, 2012

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Did I ever mention that a mere handful of days before I had to fly back to Ukraine that my friend Chelsea agreed to go with me (and pay her own way) so I wouldn’t have to go alone? Yep. And her band (Adams and Eves) had to move up their show to accommodate me stealing her. :)

So Charley and I went to the (rescheduled) show at the Riviera Supper Club. This was the last date we would have for a while.

While listening to one of their new songs Charley and I started looking at each other. Was Adam singing, “Laelie?” (Laelia’s nick name.) No he wasn’t. He was singing “lately.” But the rest of the song just sounded like it was about our daughter.

After the show we had to ask. Was that song about Laelia?

Yes it was!

{Fun fact: the elongated syllables during the chorus (ie. la-tely, s-lee-ping, a-bout) sound out Lae-li-a.}

For Christmas Adam got me the homemade single of Laelia’s Song. I got permission to put it on the blog.


It takes the tallest type of person
to crawl about my feet
and show me wonder
In the smallness around me

Freaking out so hard on the living room floor
and laughing afterwards
just crying out for more

Those days are over
but to me, you’ll always be
a twisted little heater
nuzzled up to my heartbeat… and my heart beats

It’s like taking your first two steps
at the ripe old age of three
It’s falling in love with everyone you meet
and seeing something in them they’ll never see

Lately I’ve been having trouble
Sleeping without waking woeful
About you and the pain that you’re in

With legs like little ladders you’re just bound to scale the walls
Of “No”s and “Nevers” that the experts built so tall
It’ll take a little time for me to figure which is bigger
your mouth, your mind or your heart
It makes the things I think are special 
about you feel a little trivial
when every single move you make 
is a miracle

Lately I’ve been having trouble
sleeping without waking joyful
About you and the shape that you’re in!

Laelia is a walking, kindergartening super girl!

Monday, September 17th, 2012

I have to brag on my daughter for a bit. My big girl just started kindergarten and became a big sister all within the last few weeks. There have been a lot of transitions and changes going on around her, and she has been so mature about it all (most of the time). She’s been doing lots of big girl things, like helping her brother through his issues. And thankfully our friends have been there to make her feel loved. Here she is all dressed up for a party at Lauren and Ryan’s house. Chelsea came to pick her up and take her. She was so excited to go all by herself (as we couldn’t go out with Rolly yet) and  had me do her hair and dress her up. Then she made Roland pretend to be a prince and hold her hand. So cute!

She also is doing well in kindergarten despite the rough start. The school bus took her to the wrong school on her first day. She ended up in the nurse’s office for falling asleep in class so deeply that they thought she had passed out. She dealt with a little boy who hit her. She finished her first homework assignment. (Homework in kindergarten?! Boo.) She even convinced her aide that she was on the school lunch program and that she was a  vegetarian who had to eat cheese sticks. All this in the first few days of school!

Somewhere in there she’s learning letters and stuff. :) Except for Friday. Friday went like this:

Me: “Laelia what did you do at school today?
Laelia: “Watched Lion King and ate cupcakes. Oh I didn’t eat my sandwich because of the cupcakes.”
Me: “Did you learn anything today?”
Laelia: “Meh.”

Haha. Fortunately I’m *that* mom who calls school everyday to figure out how things really are. (Wonderful team, wonderful teacher, wonderful aide, wonderful school. And rest assured that they made her eat some of her sandwich. :))

She wrote, “I <3 Dad”

First day of kindergarten picture!

And here’s Laelia ten minutes before her school’s Open House. :-/

As far as the hard work Laelia has been doing in physical therapy, she has exciting new accomplishments to share! It all started in Ukraine when Laelia learned to walk without her crutches. She then brought that skill home to San Diego and was walking around the house for the first time ever. (Video here.) While I was back in Ukraine getting her brother Laelia learned to walk down a large step by herself. (Video by Linda  here.) And recently she mastered walking up and down the wheelchair ramp without her crutches! (Video here.)

Laelia’s boyfriend, Ryan, started to walk without his KAFOs (leg braces) and Laelia was super impressed. So we started standing every day for a few seconds in the mornings. She was up to 30 seconds, then a minute, then two! Finally she got up to three minutes! (Video here.) After that I had her start lifting one foot up slightly at a time, back and forth, like walking in place.

Then on Sunday, September 16th, she was “walking” in place so well that I handed her her crutches and dared her to take a few steps. She didn’t hesitate. She walked for the first time in her life in nothing but socks and shoes! No KAFOs (knee braces), no AFOs (feet braces) and no… pants. Well sue me. These things happen when they happen, and sometimes you’re not wearing pants. ;) (Video here.)

The next day she was walking quite a bit further, maybe five yards. And she asked me if someday she could walk without any braces or crutches or anything. (Video here.) In this video she specifically mentions wanting to walk up the ramp.

Off camera I said I’d give her some chocolate if she ever made it up the ramp and then she started to head towards the ramp! I  cautioned  her that she had only been walking for two days and the ramp was hard. She got a few steps up and started feeling the pain on those atrophied legs. I asked if she wanted to sit down. She said, “No, I’m going up the ramp. Take a video.” So I turned the video back on and watched as she bravely took one painful step after another. She cried the whole time, but wouldn’t give up even though she knew she could at any time. (Video here. And it’s hard to watch.)

I gave her a long leg massage after that and she felt better. Then she went to AWANA a couple hours later and even participated in game time!

I’m just so proud of my little daughter. (Although if she heard me call her “little” she’d correct me and say, “I’m a kindergartener,” with all the pomp of someone who just got their doctorate.)

And I love how independent and mobile she is. If I tell her to go to her room, she can walk there no matter where she is. If she’s sitting in the living room, she can scoot over to the step near the wheelchair ramp and use it to stand up and then walk without crutches to her room. That’s simply amazing. She puts on her KAFOs (full leg braces) and tennis shoes over them herself and then walks around the house opening doors and getting into things. I love this! And these abilities are new; just in time for her brother’s arrival and me needing more help from her.

Okay I have to wrap this up since I’m out of time and it’s late. Someday I’ll have more time and sleep and just happily blog away about my amazing children. :) In the meantime I’ll just be in awe of my little baby who is all grow’d up. Boohoo. Love her.

Laelia inspires

Sunday, March 25th, 2012

I can’t imagine our lives without Laelia. For one thing I would not be as good a person. I would not be as patient. I would not be adopting a little one in a difficult situation. I would not have met the wonderful people who make up our AMC family. We would not be raising awareness for orphans overseas with AMC. I would not care as much about what happens outside of myself. I went from the broken mother who held Laelia in her arms and grieved deeply four years ago to someone amazed at how God has used this little girl to do great and mighty things.

Her daddy wouldn’t be as selfless. He would not be as good with children. He would not be as giving with his money. And he would have never considered going through something scary like surgery to save the lives of strangers.

Laelia is God’s gift to the world. All those surgeries weren’t for nothing. Laelia’s daddy had never gone through surgery before, and was scared of it, but knew if Laelia could do it then he could do it too. And he did.

Here’s the link to the story in the newspaper.

Here’s the link to the story on Channel 6.

Here’s the link to the story on KUSI News.

Here’s the link to the story on Channel 10.

Here’s the link to the story on Channel 8 (which is also embedded above).


The TV news stories take a few minutes to load.

Art Show!

Thursday, March 15th, 2012

 Laelia submitted some paintings to the  Park Gallery  Abilities Art Show before we left for Philly. The Park Gallery is run by our friends, but the Abilities Art Show was run by Ms. Wheelchair San Diego and Princess on Wheels. Many talented people with disabilities showed off their stuff. Laelia could not attend because of these stinking AFOs, but she did contribute her recent art as well as her (slightly wrinkled) painting she did with Theresa at the AMC national conference last year.

Deciding what goes with yellow.

“This one is called  Penguin Gets a Party.

Someone viewing Laelia’s pieces at the show.

Picture from last year’s painting session.

First thing Laelia asked after seeing her certificate was, “Can I color it?!!”


After every surgery you should get a trip to Disneyland

Thursday, March 1st, 2012

So we promised Laelia a trip to Disneyland after this last surgery. Her school had a planned field trip to Sea World that she couldn’t attend so we took her to Disneyland on that day instead. It would be the last opportunity to go anywhere as a family before we fly back to Philly in a few days and come home to Charley’s kidney surgery on March 20th. But little did we know it would rain and be cold! And we couldn’t get casts wet! And the adventures were endless!

Yes that’s water we’re walking through.

Disneyland was pretty gorgeous in the rain, and mostly empty because of it. Here are the ticket booths.

We wrapped Laelia’s casts up in platic wrap.

A nice family saw us wrapping with our kitchen plastic wrap and offered us their plastic rain coat for Laelia! So nice!

She was THRILLED to meet Micky!

She was less thrilled to meet Jake (from Disney Channel we found out later).

The wheelchair car at the Little Mermaid ride was a PAIN for the cast members since we would disembark only to get right back in line.  No one else was waiting for the “handicap  car” so finally after getting back in line so many times they just let us ride endlessly without getting out. We went five more times. (Laelia’s parents were less than thrilled  about it. Laelia was over the moon!)

By the way if you ask a cast member Little Mermaid trivia, they do pretty well!

The girls. We’re cold.

It’s a Small World and it’s raining on us.

Waiting to see Crush.


Crush the Turtle spoke with Laelia! Her question was, “Can you take off your shell? Because that would be cool.” To which he responded that he had never tried. So  he then  attempted it three times to the laughs of the audience. Nope, sea turtles can neither take it off nor put their heads inside. When Crush asked her name she said it very clearly, “LAY lee uh.” He renamed her “Longboarding Laelia.” (I know medical professionals who have botched my child’s name. Then a computer generated turtle hit it right on the money!) He asked how old she was and she told him, “I’m four.” She was so mature about the whole thing! Other people in the audience were whispering how impressed they were. Then when it was over she gave this self-satisfied smile and said, “I talked with Crush and did my best not to be shy.” Awwwwwwwwwww!!!

Disneyland you are still magical.

If not freezing cold and rainy. ;)


The cough that prayer cured.

Monday, February 6th, 2012

Future Doctor

We are back from Philadelphia with a princess in full leg casts. For those of you following  the story, our daughter had surgery on both knees to try and straighten them. (Because of her arthrogryposis her knees are stuck in a bent position.)  They did some releases in the back of her knees to straighten them as much as the contractures would allow, then they inserted eight plates into the fronts of her knees to stop them from growing. That way when the back of her knees grow, but the front of her knees don’t, it will straighten the knees over time.

As most of you already  know we almost didn’t have surgery last Wednesday. In fact we were ready to go home every day we were there. And people were praying. Lots of people. And everything worked out. But it worked out in this miraculous way.

When I was a little girl I read this boring  biography of Hudson Taylor. (Note:  NOT boring if you’re  NOT  ten years old and it’s NOT required reading.) He’s the guy  who prayed a lot and God provided, often last second or in a way that would make a good movie.  Our last week seemed like that.

For reasons we cannot share yet, we needed this surgey to happen now. We had no idea what God was doing by delaying it. From all we knew it couldn’t be delayed or a lot of things would go wrong. So all we could do was pray this was happening for some great reason half the time and  beg the surgery would  just  please work out the other half of the time. You see our daughter had a cough.

Thursday night I was lifting Laelia by her stomach and she coughed. But it wasn’t just one cough. It was a coughing trip. I thought I had squeezed the wind out of her or something. Then she finally said, “I just coughed like So-and-so at school!” Needless to say I yanked Laelia out of school the next day, cancelled the bus and mailed the form I was suppose to send with her that day. She had a very slight, occasional yet persistent cough all day.

Our good friends  have a  son who has the same condition as our daughter  and who also fly the same 3,000 miles to the same doctor in Philadelphia. He  had a cough once before surgery. He was fine and then the night before coughed just a couple times before surgery. That was all it took and his family was sent home to California. One slight cough and surgery was cancelled. Now Laelia had one slight cough. This was bad.

Saturday morning I called up Shriners to break the coughing news. Turns out I needed to run this by the anesthesiologist but  they weren’t  in on the weekends. I talked to a few people, was transferred six times, and finally the on call/charge nurse said to come on over. 3,000 miles and three airplanes over. So we did. And we prayed.

Sunday morning rolled around and we boarded  three planes with  the coughing monster.  The weather had changed and we  had hoped it was just allergies. She never had a runny nose or watery eyes or upset stomach or fever or  sore throat or anything else. And she would be happy and hyper and fine and then once an hour double over and cough her head off. And it was a cough with a little something going on. Not a dry one. But still I’d forget about it until she’d do it!

Monday our appointment was at 2:00, but everything at the clinic ran late and  we didn’t end up seeing anyone for three hours. Three hours! Finally we saw the doctor, his fellow  and the nurses and told them in person about the cough. I guess no one I had spoken with on Saturday had passed the word along.  At first the surgery was cancelled, and we started  making alternative plans (that sucked). The nurse coordinator outright told us  Laelia would  not be getting surgery. It looked like Laelia and I would  have to live in Philly for several weeks at one point.  But they had to get the anesthesiologist involved for the final determination.  Being after hours (now almost 6:00 pm),  we had to come back the next day when he’d be around. So in other words, because of our late appointment we had one more night  for the cough to get better.

And it didn’t.

So Tuesday morning she woke up coughing this horrible cough. She saw the anesthesiologist with the cough and he had her cough several times while listening to her chest. She was borderline with no other symptoms and even though we could hear something in the cough, they couldn’t hear it when listening to her chest. He had to pass us along to the head anesthesiologist who would make the determination on whether or not we’d be having surgery. Right before we met with him she coughed this wet, awful cough.  We planned to  pack our bags  home that  afternoon and try to get flights back that evening.

Then  we met with the head honcho anesthesiologist.  He asked her to cough. She didn’t want to. He asked her again. She coughed for him. And it was this beautiful dry cough. Then another beautiful, dry cough at his request. Then another!  She didn’t cough again through our entire appointment with him, including a trip to the PICU for surgery instructions. I thought she was cured! It was a miracle!

As soon as  we left the hospital she  started back up coughing again. It was like everything she’d experienced for days was just put on hold until she could pick it back up again when  we left.  The same ugly cough was back! Surgery was scheduled for the next morning at 6:30 a.m. She  had one more night  to stop coughing or it would be cancelled. But at least we were no longer going home that night. We held out hope it would just go away. Maybe she would stop coughing!

Of course she kept coughing. She coughed all night. I couldn’t give her  allergy meds  since we may have surgery the next morning. I just waited it out with her and held her hand. I didn’t even know if I should prep her for surgery and scare her needlessly.

I had a very small panic attack that night which defied logic because I was ready to go home and at peace  with surgery being cancelled. My panic  was obviously  not listening to how rational and peaceful I was. Charley noticed I wasn’t breathing and his reaction to that was to hug/smother me. I’m lucky  to be  alive. :)

(Note: I’ve never had a panic attack in my entire life. I think this was brought on by being woken up in the middle of a nightmare about not breathing and then my heart was already racing so fast it was just downhill from there.)

We arrived at the hospital  at 6:30  sharp (3:30 a.m. California time) and she coughed in the waiting room. Once again I mentally packed my bags thinking we were going home.

Then she coughed up the elevator and through her dress change and during her vital checks. In fact she coughed up until the anesthesiologist entered the room. Then she was fine, as if she’d never had a cough in her life. And it was his decision to proceed with surgery after checking her chest for the tenth time.

It was like something out of a movie. If I had reached the right person who told me to stay home when I called Saturday night there would be no surgery. If our appointment had not been three hours late and I’d met with someone who listened to that awful cough on Monday there would have been no surgery. If she had coughed during our Tuesday appointment with the head anesthesiologist there would have been no surgery. If she had coughed during OR prep for the anesthesiologist’s final check then no surgery.  When it really mattered, she became a perfectly healthy kid. But the rest of the time she was coughing!

Surgery went well. She opted not to have the knock-out meds and waved goodbye with such bravery  as they wheeled her  into the OR. She admitted she got scared and cried when they put the mask on her face, but overall she  was very good.

Back in the waiting room  I let out a breath I’d been  holding for six days. I was relieved for a brief moment before it hit me that my daughter was in surgery. But five hours later and she was out. Her epidural had worked, her cough had cleared and they had gotten a few degrees of range in her knees! In the coming two years the plates  in her knees will hopefully  get her even straighter!

No cough!

Epidural working!

One of the first things Laelia said after waking up from surgery was, “The next one to have surgery will be my brother. I’m gonna hold his hand and make sure he’s alright. I’m going to give him his medicine too!” (She seemed a little thrilled with that thought so I gave her a look. She quickly amended,) “Because I love him.” :) Someone is happy that this is her last big surgery for a while. :)

The first day after surgery everything went right that could go right. Everything. Then the day after that things went wrong. Laelia’s epidural had slipped a bit. The doctor recommended they pull it out and see how she did. We’ve made some stupid decisions before, but this one had two hard  days of consequences to it. She was in constant pain. And they threw every medicine they could think of at her. She had IVs in both hands and was on morphine, Valium, Tylenol, Codeine, something for the itching, something new for the panicking and something strong to help her sleep. As the first hard day progressed and they could not get on top of the pain they finally started doubling all doses.  She went 35 hours without sleep because of pain.  She made the nurse cry. She made us cry.  She was darn pitiful. Finally, since she was eating, drinking and pooping, I asked them to  discharge her and we would be right  down the road and come back if there were any problems. We took her back to the  Ronald McDonald House. Just being outside the hospital worked wonders. She got her first real sleep and so did we. Four solid hours. She woke up a new girl!

For as hard as her recovery has been, it is not as hard as the surgery she had  a year and a half ago when her epidural failed. That was much harder.

Sunday night we took two long plane rides home. We’d only been home  about twenty minutes before she threw up all the contents of her stomach, including her pain meds. She had a painful, sleepless night last night and a  painful morning all morning. I finally snuck enough pain meds into her food to get her resting again this afternoon. She is refusing pain meds and it’s hard to get them into her!  It’s my four year old verses my sanity! She  cries and cries that her legs hurt, but when I offer her pain meds she won’t take them and spits them out. Also they have me doing physical therapy with her already (if you can imagine this please say a prayer for me and for her) so just add that to the torture. All and all it’s been a hard week.

But we knew it would be  bad going into it. What we didn’t expect was any of the good times. It was downright thrilling to have to make the pediatric crutches Laelia uses longer because she  had gained a couple of inches overnight! Laelia was also praised for being the sweetest little thing in the PICU. And she was so diabolical even through her pain. She had a speech about what hurt and what she wanted done about it that she threw at anyone entering the room–even the janitor!  She directed her menu like a queen. When she was transferred out of the PICU she had me first take her to every floor of the hospital on her way to her recovery room  so she could tell them all that  she had just had surgery in an attempt to get presents out of the Shriners staff who seem to always walk around carrying goodies. (If it weren’t for all the medical stuff this place would be Kid Heaven!) She walked out with a monkey from the OR, a bear from PICU, a doll from the therapy floor and a doggie from somewhere.  It is a privilege to be this little girl’s mommy.  She is a  joy!

Today Laelia stood up tall by herself with the help of crutches and her casts.  She looked at me and  asked through  gritted teeth, “Mama? Am I tall enough for the big  rides at Disneyland?”

That little player is determined to get a trip to Disneyland out of this thing too. :)

I walked outta there.

Wednesday, January 25th, 2012

It’s been fun watching this go viral among our AMC family on Facebook. :)

Picture by Chelsea Powell

Words by Tracey Schalk

Edited by me


My pretty girl

Tuesday, January 24th, 2012

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. :))