Archive for the 'hooray' Category

Laelia’s two friends are walking!

Sunday, June 2nd, 2013

Remember in the last post I mentioned that two of Laelia’s little girl friends started walking at the end of May? Well now I have two videos to share! (If you are getting this message via email go straight to www.laeliasky.com to see them.)

Elliot got osteotomy surgery back in December, right before Christmas. This is the same surgery Laelia got when she was three.

(Here’s an old blog post of Laelia’s new legs after osteotomy surgery was over.  You’ll recognize Sophie in this blog post. Hang on! Her walking video is coming up next!)

Elliot sees Dr. Deirdre Ryan locally here in Southern California. She is a professor of orthopedics at the L.A. Children’s Hospital. It turns out Roland doesn’t need this surgery, but if he did it’s nice to know there’s another trusted doctor besides ours who does this. And a local one! I love doctors who recognize that this presentation of AMC needs osteotomies at the hips (femurs) and NOT at the knees. (One doctor who said Laelia would never walk does these at the knees. Everything I’ve studied shows this is an inferior strategy and lowers the child’s chances of independent ambulation.) Elliot’s legs were spread wide before and now are so straight. It makes her look so much older and taller. At first she started standing independently. Then she started talking giant steps forward! The first time I watched this video I cried. It doesn’t help that her daddy is a video editor and captures this beautifully.

 

05.23.13 from rob ashe on Vimeo.

We met Sophie in Philadelphia. She and Laelia both see the famous AMC doctor: Dr. van Bosse. (Maybe you’ve heard of him from my 12 million mentions on this blog.) When five pediatric orthopedic bigwigs from San Diego to Seattle told us that Laelia would never walk, we finally applied for free flights and did a medical trip across the country to see the expert surgeon. Now Laelia walks everywhere, and it’s her preferred way of travel. Sophie was a Reece’s Rainbow baby like Roland and was adopted from the same country as Roland. Sophie has a few things in common with Laelia. They both have a severe type of amyoplasia that have baffled inexperienced doctors. They both have brothers with AMC through adoption who started walking earlier and easier than they did. They both have to fly to see their orthopedic doctor. They are both little talkative goofballs.

Sophie was an older child adoption (meaning she was older than 3) and had never had medical care for her AMC until her parents brought her home. Sophie and Laelia started treatment in Philly around the same time, but Sophie required external fixators to get her knee contractures straightened out. Laelia had the benefit of knee stretches and OT/PT for the first several years of her life and got by with 8 plate knee surgery, a much much much tamer surgery. So the fact that Sophie’s legs are beautiful and straight, and that she can walk both using a walker and without one, shows how hard she’s worked and how amazing she is. (Oh and even though I’m known as “Laelia and Roland’s mom” my first name is actually Alexis so this video is even more special since Sophie showed off her skills just for me. ;))

 

 

 

Grafted Branch

Friday, April 26th, 2013

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My husband and I started a ministry for orphans called Grafted Branch. My husband made a pretty website for it too: www.graftedbranch.org. So far we’ve had lots of help from our friends, including Lauren Burke who did the art. We designed this ministry to be picked up by our church so it’s got “Bible” and “Christian” all over it, although everyone can help orphans. If you’re interested you can sign up to be a prayer partner. In May we’ll be helping the little guy who we’ve been advocating for, Raymond.  I hope you can join us!

Mama’s birthday

Monday, April 15th, 2013

This Mama had a birthday. I now have as many years on me as Baskin Robbins has original flavors.

Hubby and I were going to go on a date this weekend to celebrate, but Laelia got sick. We made her a bed on the couch but accidentally left the controller (the way to turn on cartoons) on the table out of reach.

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We found her in this position weakly saying, “help.”

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Her daddy could not stop laughing at her.

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She’s got the controller in her hand and is all happy again.

On the actual day of my birthday (Wednesday) both kids had physical therapy.

They decided to make a run for it.

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Out the door.

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Down the hall.

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And I caught them at the drinking fountains. :)

Seriously, two walking children is the best birthday present ever.

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We then did a little yard work in the ol’ weed hole. Still need to get the ones by the fence.

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These are some of the thousands of rocks we have moved out of the front “yard”, but the kids still can’t walk on the uneven ground. We tried.

Wednesday night we celebrated by having dinner on the beach and watching the sun set.

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They can walk on the uneven sand. (If that gives you an idea how bad my front yard is.)

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Oh and I also had some blood work done (re-done) the next day and didn’t pass out like last time. Score!

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So, um, the glamorous life of a mom. :)

Happy birthday to me. :)

PT newness

Friday, April 12th, 2013

Two new tricks!

1. If Laelia puts on her KAFOs (leg braces) in bed then she can just scoot off her bed and walk around. But if she is on the floor when she puts them on then she has to scoot or roll all the way to the living room step in order to stand up. (Here’s a video of her standing up using the living room step. It’s one of the first times she ever did it so it’s slow. Now it’s second nature to her and goes quickly.) The other week at physical therapy we discovered she could stand up all by herself using only a small sturdy table! I kept saying how I wanted one of those special tables for her room so she doesn’t have to go all the way to the living room to stand. Well those PT tables cost $300. Yeah… no. But we found something that works just as well!

(Ignore Roland’s whines. Whenever Laelia does anything under the sun he is right in line waiting and begging and whimpering to do it too.)

2. Now Roland is working on standing up too! The little guy walks all over the place, but standing up is something he’s still learning. And boy does this kid love standing practice! Anytime Laelia uses the step to stand up, Roland will try it too. He begs to go “down” and then rolls to the step, gets into position and then I help him stand. He grins so huge every time and then walks up the ramp and begs to go “down” again to the floor to do the whole process over. Repeat and repeat infinity times. I get sick of it way before he does. :) What energy!

Aren’t they the best kids ever?!!!

:)

Roland is walking!!!!!!!!!!!!!!!!!!!!

Saturday, February 23rd, 2013

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Laelia has been a rock star standing queen for a while. Here she is with her new KAFOs!

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Roland just learned to stand! Here he is with his new KAFOs.

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Now they stand together!

(And the new KAFOs happened during an insurance hiccup and we are now $10,000 in medical debt because of them. *bangs head on wall* Yay… :-/)

But wait, there’s more!

On Thursday Roland and I spent the morning at Early Head Start, a preschool (only three hours, two days a week) that will help Roland catch up on his language delays. Right before lunch I asked him to sit in his chair at the table and he didn’t want to. He shook his head, said “no” and started to walk (using his little cart) the opposite way. So I took his cart away and led him by the hand to the chair. My little willful guy decided that right then and there he was going to walk independently for the first time ever AWAY FROM THAT CHAIR! Hahaha! So his teacher was cheering and I was half cheering half chiding as Roland took his very first independent steps since being out of casts. And the very first to be initiated by him. He took several steps, got redirected and then walked straight to the table. Once at the table I put him in the chair where he proceeded to scream his little head off in protest. Oh boy is this class in for it. :) A few minutes later he was happily playing with his food at the table. Gosh that independence streak will help you later in life, little man of mine, but what a stinker you are! :)

The next day (yesterday) he got a tummy bug and was a little puke factory.

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“I swear it was having to sit at that table. It gave me the plague.”

But today he is totally back to normal and wanted to walk some more!

And he did!

He walked independently several more times!

It took a while for me to get him to do it again, but finally he did it!

Then just now I was sitting in the chair and taking random videos of the kids when he decided to walk again! Well more specifically he decided to yelp for Laelia to get him going and then he walked to me! I didn’t even have a bribe that time!

This just happened, people!

Oh he’s so close to just taking off and walking EVERYWHERE! I can’t wait!

Roland’s knees and legs

Saturday, February 16th, 2013

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I’ve already done a blog on my daughter’s knees and their progression from bendy to straight so you all already know how amazing this little girl’s story is. We went from doctors absolutely flatly refusing to cast her knees five years ago (and denying us for stretching knee splints because Laelia was too “disabled” to utilize straight legs) to commuting to Philadelphia so Dr. van Bosse could get this little lady’s legs super straight and walking everywhere. She’s even begun to climb small steps!

Five years later and one of the original doctors who didn’t want to cast Laelia’s legs straight was all too willing to cast Roland’s legs straight. (Saving us weekly flights to Philadelphia.) Medical practice evolves, thankfully, and I want to believe my daughter was a pioneer in that regard, at least in a small way. I do know her pictures were used in many occupational therapy presentations across the country, and I have met people who have seen this blog and changed their expectations for their AMCers based on it. Her story was made stronger by the dim predictions of some of the best doctors in orthopedics early on. And I’d like to think there was a reason we did not have instant access to the best advice and therapy techniques. Maybe it was so people could learn from our mistakes. Maybe it was so we could travel to Seattle and Philly and Kansas City and meet many people. Maybe so others who had also missed the boat could get hope that if Laelia could start walking at age 4 and independently at age 5 then their kids could too.

Well, I know one AMCer who has had his life changed by Laelia’s experiences: her brother. Someone who was not believed to ever walk himself and started doing that very thing after six months* of Ponseti casting, bracing and stretching.

(*Now Laelia’s experiences seem to be at one end of the spectrum  and Roland’s at the other. Roland responded really well to casting. He avoided tibial subluxation (a complication of casting knees) and he had enough of the right kinds of leg muscles to walk without needing years of PT intervention first. What has taken Laelia years has taken Roland months. We know we got off easy with him. So I guess I’m not saying, “Roland achieved ambulation in six months and so can you!” The same exact therapies would not have worked as quickly on Laelia’s body. Every AMCer is different. But I am saying even the most severe cases of amyoplasia can be ambulatory. I know two adults around my age who have decided to start the process of ambulation or easier ambulation later in life. And Dr. van Bosse has seen many many adopted older kids with AMC and increased their functionality greatly!)

Okay now on to the Roland pictures. Here’s what’s been going on for the last several months.

Roland’s knees

Roland's knees

(Click on any picture to enlarge it.)

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Those knees were stuck around 100 degrees for one leg and 90 degrees for the other.

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Stretching and gravity didn’t straighten them much.

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Roland’s little legs during tummy time.

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Combined with his little curved feet we knew Ponseti casting was in his future.

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After a month home we had stretched his arms to around 15 degrees of bend, but his knees only gained a few degrees of range from the stretches.

Time for casting!

Casting montage!

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Dinosaurs from Philly. Dr. van Bosse started us off with the first set of casts. The following were all done locally.

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Red

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Green

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Black

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Purple

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Blue

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Right after blue were removed. Look at those straighter feet too!

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From the side

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Red, green, blue and purple

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Orange was our favorite!

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Blue again. This is Roland playing at the Polar Bear exhibit at the zoo.

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Right after second set of blue casts were removed.

They gave him little stockinette gloves to keep him from scratching at that poor skin.

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Look how straight those knees are getting!

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PINK!!!!!!!!!!!!!!!!!!!! Just for kicks.

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Standing practice! (Hiding the pink casts under yellow socks. ;))

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Some skin breakdown meant we needed to take a break from casting. But his feet were very close to perfect!

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This is how far we got his knees. It’s easier to tell in x-rays.

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FIRST REAL BATH IN MONTHS!!!!!!!!!!!!!!!!!!!!

(The casts smelled so bad.)

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The casts were bivalved (cut in two) and became removable.

We kept them on with ace bandages while his leg braces were being made.

Those ace bandages had to be burned afterwards. STINK!

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Finally new KAFOs! (Knee Ankle Foot Orthotics) The left leg needed more time to heal at this point.

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In Payless getting his VERY FIRST PAIR OF SHOES! He’s really thrilled.

Once they healed enough (and we put a ton of liquid skin on the sore areas) someone could wear his KAFOs again!

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And he’s standing independently for the first time!!!!!!!!!!!!!!!!!!!!!!!

(And he’s thrilled about it.) :)

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You’ve come a long way little guy.

:)

Disneyland

Wednesday, January 23rd, 2013

Because what post-institutionalized child wouldn’t love a day at Disneyland to celebrate five months out of an orphanage?

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Seriously this picture is the best Disneyland advertisement ever.

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This one too. ;)

We had a great time!

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Balloons for all three kids (the third kid is in Meg’s tummy :))

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Someone loves daddy! …And is about to smack him with a balloon in the face. :)

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Our family enjoying Disneyland.

And just for fun here’s an excerpt from my diary last August:

“We got back to the apartment in Kiev and realized we had no diapers for this guy. So Chelsea and I walked to the pharmacy since they sell diapers there and not in a regular store like you’d expect. Roland was strapped to me, facing me like I’d been told to do, and so cute. I never could imagine how someone so foreign to me could be so loved by me. But I know we have a long way to go in bonding, but the fact that he clings to me around unfamiliar things is nice. It was still raining when we stepped outside so I got out an umbrella to share with him. It’s a cute little purple thing with kitties on it we picked up in the underground mall. You’d have thought it was the scariest thing imaginable by the way Roland reacted! He started shaking and buried his face in my chest. The pharmacy didn’t have diapers so we had to walk down to another one farther away. That was hard. While walking the traffic scared him, the parked cars scared him, the city noises scared him and the people (oh so many people!) scared him. He was shaking so hard. He had his face buried in my chest the whole time so he wouldn’t have to see. He was so nervous he puked down my shirt and stomach. We finally found our diapers and walked back to our apartment. Being in four close walls again helped calm him down. This guy is so timid and the world is so big and scary. Oh I hope we bond quickly so he’ll be able to leave the house someday!”

Excerpt from my diary last weekend:

“Woke the kids up a bit early and they were all grins and giggles and squawking. I said we were going to Disneyland and Laelia did her happy scream which Roland echoed. Roland loves the car so he was good until about an hour and a half of driving when he got bored. Then he started making noises, being annoying and getting everyone’s attention. Why did I leave his piano toy at home?! When we unloaded in the huge parking lot both kids looked a little bored. Haha, cars and traffic and all these people are boring to my little spoiled boy! That was not always the case! When we entered the park and made our way out of the crowd both kids were sitting up in the double stroller (love this stroller!) each with a park map in hand and looking around excited. We were meeting Meg and Davie near the canoes but we had a little time since they got stuck in traffic so we headed to the carousel. I put Roland on the horse and I have never seen him so happy and excited! He was thrilled. This was the best ride ever! And he had no idea it hadn’t even started yet!! Then it actually started and he squealed in delight! He kept saying, “Weeeeeeeee!” I wanted to tell the people smiling in our direction that this boy had never seen a carousel before, or a horse, or anything besides four walls most of his life, but I didn’t. When the ride stopped he was pretty sad and kept reaching for the horsey and saying, “hosey!” But we had more rides to go on! [...] During It’s a Small World (a 15 minute ride) Rolly said, “Hello” and “Bye-bye” to about a million animatronic singing children. When I bought him a Micky balloon I had never seen a more happy child in my entire life. He got ice cream for dinner and glow sticks to poke his sister with. What a happy boy! [...] That night we placed him in his bed and he slept through the night. I remember when this much stimulation would leave him scared or up all night or nervous or clinging. Not our adjusted little guy! I’m starting to think his life started five months ago. His real life. And he’s doing amazing!”

New Feats for Rolly Man!

Monday, January 14th, 2013

I’ll keep this brief. Roland started out with super straight arms and super bent knees. And they were stuck that way. And I mean STUCK.

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Roland before any medical intervention.

 

After therapy, stretching and casting  for the last five months, Roland’s arms can bend enough to suck his thumb (!!!) and his legs are straight enough to walk across the living room without a walker.

WITHOUT A WALKER!

(Those were links up there. That’s right. Videos. Clicky clicky!)

Oh yeah and the doctors in his birth country didn’t think he could do either one.

Take THAT arthrogryposis!!!

Oh…

You may all commence screaming now.

YAY YAY YAY YAY YAY YAY YAY YAY YAY YAY YAY

!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Roland took his first steps without a walker today!!!!!!!!!

Tuesday, January 8th, 2013

Roland took his first independent steps today!!!!!!!!!!!!!

Click here for the video!

Walking down the aisle… the proudest mommy moment

Sunday, January 6th, 2013

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“The doctor leaned across my bed to break the news. He spelled things out and wrote them down. Every time he asked if we had questions, we didn’t know what to ask. We asked if she would be able to walk. He said he didn’t know. I cried some more.” ~October 4th, 2007

“I have a physically disabled daughter. It still hurts to say that.” ~October 7th, 2007

“We went into Children’s hospital and our physical therapist looked like a teenager. [...] They only had two other children come through with Arthrogryposis and only one could walk. His (the walking kid’s) physical therapist said it was nothing she did either, he just could. It turns out that babies with Arthrogryposis that have the leg joints stiff in a straight, outward way are more able to walk. Of course our baby girl has the wide open legs and hope seems dim.” ~October 10th, 2007

“We had our first orthopedics appointment! We called ahead of time to see if they were closed for the fires. Then we covered the baby, held our breaths, brushed the ash from our car and drove through what looked like Armageddon. What felt like little drops of rain turned out to be tiny bits of ash from unusually dark skies. [...] We were getting casts that day. :) We decided to try and fix the club feet with the casts and stretch out the legs (knees).” ~October 25th, 2007

Charles: “We got Laelia’s casts changed again today. My wife asked the doctor how far the knees could get straightened out. We hadn’t seen a ton of progress, and we were wondering if her legs would be straight enough for her to walk. “Oh,” the doctor replied, “we haven’t been trying to straighten out her knees. Right now I’m thinking that she’ll be wheelchair-bound, so her knees are at about the perfect bend to accommodate that.” ~November 19th, 2007

“There’s no cure for what she has. There’s no way to grow the muscle that she lacks. I can’t even get all her parts looking the way they should let alone moving the way they should. And she’s working toward goals that fall short of even the basic normal functioning of typical kids. Right now we’re focusing on getting her to be “less special.” ~December 20th, 2007

“Okay tonight is when we find out how Laelia’s surgeries went. We will discuss braces or more casting and it will be decided split second without a sit down.. as usual. As for more casting, our physical therapist told us that she will not be able to straighten out Laelia’s legs with stretches or therapy, so we are going to request more casting to hopefully achieve that. Unless our orthopedics doctor has major objections or doesn’t think that will work.” ~January 7th, 2008

“They didn’t cast the legs straight. We were told she wouldn’t walk. Ever.” ~January 10th, 2008

“We switched orthopedic doctors today (Friday). This new one also does not believe Laelia will walk either, but actually explained the physicality behind that belief. So even if she were able to be straightened out, she doesn’t have the muscle to walk. Even if we did a muscle transplant, the muscle wouldn’t work. Even if we could get her to stand, she would not be able to do so once she got to be around 60lbs since she won’t be able to hold up her own weight and her muscles will not grow with her.” ~February 15th, 2008

“I was curious as to how a doctor’s note could be three pages long. But what I was reading was the doctor’s impressions and findings in detail. I read over, “…significant deformity…significant upper extremity involvement…certainly require surgery…not significant leg power…goals need to be reasonable…I suspect she will come to utilize an electric wheelchair…the need for good upper body strength to control walker was stressed [to parents] (as in she won’t be able to)…toes will require flexor tenotomies at time of posteromedial releases…all of this was discussed in quite frank detail with the family, trying to paint a realistic picture, though not be overly pessimistic.” ~March 16th, 2008

“The EMG showed extremely poor muscle tone. What we had suspected was now proved on a test. The muscles in her arms and legs are in extremely poor shape. I start to wonder once again how her life will be.” ~July 25th, 2008

“Sometimes I forget what normal movement looks like and am amazed at what my friend’s newborns can do that Laelie will never be able to do. She will move, but she will use technology to help. Of course by the same token, there are a lot of things that Laelie will do that none of her new friends will be able to do. Like move a wheelchair with her head.” ~August 18th, 2008

“Everyday during PT (physical therapy) I get discouraged by Lali’s lack of movement. Stupid arthrogryposis! Stupid amyoplasia! If I try to do her exercises she throws a fit and refuses to do much. I try to encourage her to move her arms and legs, but she will just lie there and cry. And I really start to think, Will my baby ever move?” ~September 14th, 2008

“Laelia may never walk. I was sitting on the couch today playing with my baby and it dawned on me that my baby is not looking like she will be able to stand or walk or lift her arms. Her legs never got straight, her muscles never fired up or grew. Her therapists mentioned that she was one of the worst cases as far as muscle atrophy that they had seen.” ~September 21st, 2008

“Even with all the muscle loss, she is able to roll! That makes all the difference in the world! Now I’m hopeful she’ll be able to get around her home as an adult by rolling or scooting.” ~November 21st, 2008

“I saw two callus doctors today, and my experience was not that great. One largely ignored me while smiling. The other thought I was in denial of the severity of my daughter’s condition and took the opportunity to tell me that Lali “has severe joint contractions and muscle loss that will NEVER go away,” and I needed to “deal with that fact instead of searching for new splints or braces.” Do not treat a child like their worth is the sum of their workable body parts. And that their worth of your time is the sum of their fixable body parts (of which you’ve determined my daughter has little).” ~January 30th, 2009

“When checking out at Target the lady at the counter asked me if Lali could walk yet. I just said, “Not yet.”  The lady looked so confused. “Well why not? Have you tried?” ~May 11th, 2009

“We found out at our last trip to the PT that Laelia’s body is still not in the position for standing. That’s what the two major surgeries were for so we’re bummed as you can imagine.” ~November 21st, 2009

“At PT the other day they strapped Lali up to a giant suspension machine and moved her hovering self across the room while she kicked out her little feet to keep them from dragging. She eventually got a rhythm going: right left right left. She looked in the mirror as she went by and exclaimed with so much pride, “Laelia walking!” ~January 28th, 2010

“Laelia can now stand on her knees for ten seconds! This is her biggest accomplishment to date! Doctors said she wouldn’t be able to do this!” ~February 26th, 2010

“[Flew to Seattle to see another orthopedic doctor.] He said she wasn’t a great candidate for this (osteotomy) surgery, and to wait six months to a year to see if we should do anything with her. He said that 90% of kids with amyoplasia were ambulatory (able to transfer and stand), but it wasn’t looking like Laelia was going to be one of those kids.” ~April 3rd, 2010

“Tomorrow we’ll be in Philly and the next morning we’ll have our appointment with Dr. van Bosse at Shriners. [...] I’m also not sure if I’m ready to hear the straight truth from the arthrogryposis expert on my daughter’s care.” ~June 16th, 2010

“Dr. van Bosse is now our orthopedic doctor!” He said my baby will walk! ~June 19th, 2010

~

“Tonight my baby took her first steps. My baby can walk! My baby can walk! My baby can walk!” ~August 31st, 2011

~

Then it just snow-balled…

In September of 2011 Laelia knee walked for the first time. On November 1st, 2011 Laelia used a walker by herself for the first time. On December 3rd, 2011  Laelia stood independently without holding anything for the first time. The very next day she took her first independent steps and crashed into a couch.

 

Linda and Phong became engaged 21 days later and asked Laelia to be their flower girl. The kid was walking with crutches but we had no idea how she would throw the flower petals. It wasn’t until August 2012 that Laelia started to walk independently for long distances without her crutches and was hands-free. We practiced holding a basket while walking. She fell. A lot. We kept practicing. She fell. Rarely.

Last weekend Laelia the flower girl walked down the white runner towards the waiting bridesmaids and groomsmen. She walked with confidence. No walker. No wheelchair. No crutches. No falling or stumbling. She held her basket of petals with one hand and tossed them down the runner with the other. Her movements were like a synchronized dance as each action swayed her balance.

 

 

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Laelia was suppose to walk to a specific place near her grandma, but instead she walked straight to me. (I was matron of honor and standing up front.) She grinned up at me with such pride in her eyes, beaming like the sun! I walked her to where she was suppose to be while whispering my own joy and pride into her ears.

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They said she never would.

She did.

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Thank you God.

*tears*