Archive for June, 2013

June 30th is arthrogryposis awareness day!

Saturday, June 29th, 2013

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It’s Arthrogryposis Awareness Day!

I wanna play! I wanna play! What do I do?

I’m glad you asked! There are four things you can do to participate!

1. Wear blue today!

2. Share pictures of you wearing blue on Facebook and tag me so I can show the kids!

3. Practice pronouncing ar.thro.gry.po.sis!

4. Learn three new things about arthrogryposis!

To help you with #4, Tracey shared one fact a day about AMC every day in June leading up to AMC Awareness day. I have copied and pasted them below.


Day 1: Arthrogryposis is defined as multiple congenital (from birth) joint contractures or multiple joints that are stuck in 1 position and have very little flexibility. (A comprehensive fact sheet (6 Pages) can be downloaded here: and a short (1 page) fact sheet can be downloaded here:

Day 2: a newborn has to have 3 contracted joints in two different body areas to have a diagnosis of Arthrogryposis. ARTHROGRYPOSIS AWARENESS DAY 2013.

Day 3: Arthrogryposis in an umbrella diagnosis, which means that it is part of other many conditions and syndromes. These conditions and syndromes are usually referred to as the type of arthrogryposis. Currently, there are 400 identified types of AMC. Amyoplasia, Distal and Escobar Syndrome are the more common types (but they’re still rare within the general population). Some individuals never have their type of AMC identified. ARTHROGRYPOSIS AWARENESS DAY 2013.

Day 4: All types of Arthrogryposis occur 1 in 3,000 live births. Each type is than more rare from there. Amyoplasia occurs approximately 1 in 10,000 births. Sadly, about 20-30% of infants born with AMC won’t make it to their 1st birthday because they have severe central nervous system dysfunction or have a genetic type that is lethal and some baby’s don’t make it for unknown reasons ARTHROGRYPOSIS AWARENESS DAY 2013

Day 5: Arthrogryposis is caused by an unborn baby not moving properly during fetal development. A baby has to move its limbs for proper joint development to happen. When a joint doesn’t move for a long period of time, it gets stuck and contracted. Why a baby fails to move its joints depends on the type of AMC. For example, In Amyoplasia (a non-genetic type), it happens the muscles fail to develop. In Escobar Syndrome (a genetic type) the messages that impact a person’s muscle movement is affected, the message isn’t able to get through very well making it more difficult for them to move ARTHROGRYPOSIS AWARENESS DAY 2013

Day 6: Common joints contractures in arthrogryposis include: Clubbed feet or vertical talus, extended (straight) or flexed knees, dislocated and/or externally rotated hips, internally rotated shoulders, extended or flexed elbows, flexed wrists, adducted thumbs (stuck-in- palm), fingers fisted or extended ARTHROGRYPOSIS AWARENESS DAY 2013

Day 7: arthrogryposis is not curable but it is very treatable! Usually the goal of treatment is to make a person as independent as possible in activities of daily living (ADL’s). ADL’s are those things you do every day to take care of yourself (eating, dressing, ect) ARTHROGRYPOSIS AWARENESS DAY 2013

Day 8: Treatment for arthrogryposis usually involves: stretching (to increase joint range of motion), physical therapy to work on overall strength and gross motor skills (walking, standing), occupational therapy to work on fine motor skills and self-help skills (grasping, feeding), speech therapy to work on speech and oral motor skills, serial casting (including the Ponseti Method for clubfeet), splinting, bracing (AFO’s, KAFO’s) and orthopedic surgery (osteotomies (bone cuts) to change angle or rotation of a bone, soft tissue releases (releasing and lengthening tight muscles and tendons), muscle/tendon transfers (changes what body part a muscle/ tendon moves) and external fixators (metal frames that are applied over a deformity that is exceptionally rigid/tight and needs to be corrected slowly or to length short bones). And there are other therapies as well: hippo therapy (using horses for therapy), aqua therapy (therapy in a warm water pool) and massage therapy to name a few.

Day 9: Arthrogryposis is considered an orphan condition by the National Organization for Rare Disorders, Inc. (NORD) because it affects less than 200,000 people in the United States. Statistically speaking, The US has 313 million people so about 104,000 people would have arthrogryposis but this doesn’t account for the babies who don’t survive infancy. Rare disorders and conditions are significantly less like to be researched. ARTHROGRYPOSIS AWARENESS DAY 2013

Day 10: 1/3rd of all cases of arthrogryposis are amyoplasia type. Amyoplasia means a lack of muscle development, this means muscles can be completely absent (they just failed to developed during fetal development) and the ones that did develop can be weak or are not of normal size. Amyoplasia is not considered genetic because it doesn’t repeat in families however there is still no known definitive cause to explain why amyoplasia occurs.

Day 11: arthrogryposis can affect just the arms/hands (sometimes referred to as upper extremity only) or just the legs/feet (sometimes referred to as lower extremity only) or it affects all the limbs (sometimes referred to as all extremity). Having all 4 limbs affected is the most common.

Day 12: Many people with arthrogryposis have other co-existing conditions. These other co-existing conditions may be part of their type of AMC. Some of these other co-existing conditions include: cleft lip and/or palate, an airway that is narrow, weak suck/swallow, gastroschisis (intestines on the outside), tethered spinal cord, facial birthmarks (also called stork bites, angel kiss), micrognathia (small or recessed jaw), vision and hearing impairments, plagiocephaly (abnormal head shape) and severe scoliosis (curvature of the spine) can cause lung problems. These other conditions can lead to needing trachs (a tube in the airway that helps with breathing), g-tubes (a feeding tube), hearing aides and cranial remolding orthosis (helmet). ARTHROGRYPOSIS AWARENESS DAY 2013

Day 13: The distal arthrogryposis types are characterized by the joint contractures being isolated or more severe in the distal joints, basically the hands and the feet. Distal means furthest from the core of the body), but other joints can be affected. Hands being clenched and fingers stuck in a fist and clubfeet are very common. Most distal types are genetic but some are not. There are approximately 10 types of Distal arthrogryposis. ARTHROGRYPOSIS AWARENESS DAY 2013

Day 14: lack of movement during fetal development is called Fetal akinesia. The fetal akinesia leads to the arthrogryposis (joint contractures) but there are other signs in a newborn that they didn’t move properly while in the womb. Extra hair or long dark hair can be present in areas that lacked movement. There can also be dimples over joints that didn’t move correctly. ARTHROGRYPOSIS AWARENESS DAY 2013

Day 15: Babies born with arthrogryposis can have a very rough start in life. Many babies with AMC accidentally have their bones broken during delivery or during the neonatal period. The lack of movement can make their bones more brittle (this is not the same as brittle bone disease) and if the position of the contractures are not favorable for delivery (for example if a baby’s hips are externally rotated and knees stuck in flexion) a lot of force may be needed to deliver them, resulting in fractured bones. The thighbones (femurs) and the upper arm bones (humerus) are common bones to be broken. Some babies have their limbs fractured immediately after birth because their medical team doesn’t know how to move them yet. If AMC is detected before birth a c-section may be needed to try to avoid broken bones but even with a c-section it can still happen. Some kids continue to have fractures throughout childhood from accidental falls. ARTHROGRYPOSIS AWARENESS DAY 2013

Day 16: if a baby is diagnosed with arthrogryposis before birth it’s now recommended that the mother take steps to get the baby moving, because the more movement there is, the less rigid the contractures will be. At the 2009 AMC Conference, Dr. Hall (the top geneticist in the study of arthrogryposis) said that mothers should drink caffeine, exercise and take deep breaths often. All of those things will keep the baby moving as much as possible. She also recommended delivering at around 37 weeks if the baby’s lungs are mature so that physical therapy can be started sooner. ARTHROGRYPOSIS AWARENESS DAY 2013

Day 17: With treatment many people with arthrogryposis will walk, while some will need a wheelchair. Regardless of whether they walk or use wheels, it’s all about effective mobility. Those who walk may need braces (AFO’s, KAFO’s or HKAFO’s) or walking aides (walkers or crutches). There are two types of wheelchairs people with AMC may use depending on how they’re affected, manual chairs (which are propelled with the arms) or power chairs (which are propelled by a motor).

Day 18: There is no cure and even fabulous treatment can’t regain normal range of motion and strength in every joint BUT Its AMAZING what people with Arthrogryposis figure out how to do despite “crooked” limbs! People with AMC kind of make range of motion and normal muscle mass look over rated. Think about this….could you make a fruit salad *without* using your hands!? ARTHROGRYPOSIS AWARENESS DAY 2013

Day 19: Arthrogryposis can cause height and weight deficits in childhood and subsequently in adulthood. Children with AMC tend to be on the low end of the growth charts for weight (or not on the chart at all). As adults they tend to be 4-8 inches shorter than familial height and weigh 10-20 lbs less than their peers. Obesity should be avoided because it makes it harder to move limbs that are already weaker (taken from page 24 of the AMC Text Atlas) ARTHROGRYPOSIS AWARENESS DAY 2013

Day 20: Lack of movement during fetal life causes the joint contractures in arthrogryposis but another sign that there was lack of movement is lack of creases over the joints. Look at the skin over your joints when they’re straight, there are creases visible, a lot of babies with AMC lack these in the joints their affected in.ARTHROGRYPOSIS AWARENESS DAY 2013

Day 21: Despite the fact that Arthrogryposis is not curable, kids with arthrogryposis grow up to be success and independent adults. Some people will be able to care for themselves unaided, while Some people will need aides to come in and help with some daily tasks. Some professions adults with AMC have chosen include, doctors, lawyers, dentists, engineers, teachers, artists, business owners, professors, chemists, personal trainers, social workers, authors, musicians, journalists and more! ARTHROGRYPOSIS AWARENESS DAY 2013

Day 22: Adults with arthrogryposis are prone to developing osteoarthritis, some earlier in life than their typical peers. It’s not known exactly why arthritis develops in adults with AMC, it’s either because of abnormal joint surfaces (due to the contractures) or its because of the vigorous PT early in life that’s necessary to increase joint mobility. Some adults will need joint replacements to relieve the pain of the arthritis. (adapted from the AMC Text Atlas). ARTHROGRYPOSIS AWARENESS DAY 2013

Day 23: arthrogryposis is not considered progressive; it’s as severe as it’s going to get at birth, and the contractures won’t worsen with time. It is however regressive in nature. This means that even after any type of treatment (even highly effective treatment whether it be surgical or non-surgical) the contractures/ deformity can re-occur. So a foot can go back into a clubbed position, a knee can get stuck in a flexed position again, a wrist can stop going to neutral again ect, this is also called relapse. Post-treatment bracing (like after casting or surgery) is very important to try to prevent relapse but even strict brace wear doesn’t stop all relapses. Once a person stops growing the contractures are less likely to re- occur. ARTHROGRYPOSIS AWARENESS DAY 2013

Day 24: Most kids and adults who have a diagnosis of arthrogryposis are cognitively typical, meaning their IQ scores are normal or above normal. Some people with AMC will have some level of cognitive impairment that does affects their IQ score.ARTHROGRYPOSIS AWARENESS DAY 2013

Day 25: amyoplasia, one of the most common types of Arthrogryposis, can occur in identical twins but only 1 baby is affected and one is typical. This is one of the reasons that amyoplasia is not considered genetic. AMC can happen in just 1 twin of a fraternal set and AMC can happen in both twins if the AMC is genetic in nature.ARTHROGRYPOSIS AWARENESS DAY 2013

Day 26: arthrogryposis is not a newly identified condition. Adolph Otto officially described it in 1841. There is also evidence of it in literature as early as the 12th century (perhaps earlier) and it’s likely that the beggar in the 1642 painting, “the clubfoot”, (which hangs in the Louvre) has some form of AMC (the text atlas says amyoplasia, another article says distal). ARTHROGRYPOSIS AWARENESS DAY 2013

Day 27: arthrogryposis is not a widely studied condition but Dr. Judith Hall, a clinical geneticist, has been studying AMC for 40 years and has advanced the medical community’s understanding of joint contractures in a newborn. In her talk at the 2012 AMC conference she reiterated that arthrogryposis is a symptom of an underlying condition/ syndrome. Her dedication to the AMC community is astonishing. She stayed at conference for 2.5 days and met with families all day long, giving them answers no one else could. As a community we are forever indebted to her for the advancements in understanding the causes of AMC. ARTHROGRYPOSIS AWARENESS DAY 2013

Day 28: Dr. Hall said at conference that it used to be believed that all cases of lower extremity only arthrogryposis were amyoplasia type but that now its known that a whole list (she showed the list) of conditions and syndromes can cause contractures in the legs only ARTHROGRYPOSIS AWARENESS DAY 2013

Day 29: According to Dr. Fisher from OrthoIndy (who spoke at conference) there is very, very little information in the medical literature on joint replacements in adults with AMC and degenerative arthritis. Dr. Fishers experiences in replacing joints affected by AMC in 2 of his patients have been positive and he is publishing an article soon about one of his patients! Like with all things AMC related, there needs to be more research on aging with joint contractures! ARTHROGRYPOSIS AWARENESS DAY 2013

The best gift to an adopting family: baby pictures

Monday, June 24th, 2013


Roland’s only baby picture

By the time Laelia was 2 years old we had exactly 247 billion pictures of her. It’s weird to have so many baby pictures of one child and only one single baby picture of your other child. But today my friend Carissa found not only nine pictures of our son, but a video!!! He looks to be probably 1 year old. We literally just saw these for the first time today! We’ve watched the video over and over. My husband got really emotional too. (And it’s pretty hokey.) We joke that of course it’s in slow motion because our son does NOT sit still long  enough for a calm video. ;) First, here are the pictures. (That suit!!! Little teefies in his mouth! That pout! He’s so little!!!)

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And little Yehorchyk’s video (the cooing slays me!!!):


Here’s him now with his new stretching elbow splint (and tennis ball added by Uncle Phong so Rolly wouldn’t damage more furniture):


I’m all grow’d up now.


In other news our friends, the Ashes, are adopting a little girl with special needs from China!



These are friends we knew before either one of us were in the adoption process or even talking publicly about it. You remember Elliot from the blog post before last? She’s the one walking for the first time. Well she’s getting a sister! Go here to learn more and maybe even donate a little something. Laelia has already said she will be donating her tooth fairy money as soon as her tooth comes out. :)

Speaking of teeth I took both kids to the dentist today. Both had great teeth! Roland was not happy getting his teeth cleaned… it took three adults to do it. He also just about destroyed the entire office before that with a rampage of happy screaming and touching stuff and throwing things while Laelia was being seen. Laelia, who has previously been terrified of the dentist, behaved perfectly. She followed all instructions even when she was so scared she was shaking. (She was only scared of the suction devise though.) Afterwards she showed off her princess teeth. And Laelia has her first permanent tooth growing in behind her first wiggly tooth! I was informed that the tooth fairy’s new rates are $1.25, a national average. (Laelia thinks that’s like a million monies.) She’s wiggling it daily so she can donate her monies to Elliot’s sister’s adoption.

Here are both kids posing with their new Congo shirts, helping another friend get adopted. (This friend is in the same orphanage as my nephew/the kids’ cousin.) Notice Laelia’s new haircut that she picked out herself. Every time the lady cut her bangs Laelia would demand, “Shorter. No more hair in my face… I use my face for everything.” ;)


Now that we’re back from the three hours at the dentist I’m going to go lie down for ten years. Excuse me. ;)




When Hollywood does good

Thursday, June 20th, 2013


James Gandolfini (picture taken from Getty images)

I know this blog is about my kids and their amazing lives, so it may seem strange that I feel compelled to write a brief memorial to James Gandolfini. But little do people realize the connection between this man and rescuing our son from a third world orphanage.

This is just a (long) story of someone doing something good in life, and that goodness, like a waterfall, trickling down and touching others who will never meet him. We just learned yesterday of Mr. Gandolfini’s death by heart attack at the age of 51 while on vacation. It was emotional to read. My son never met Mr. Gandolfini and neither have I, but our family, and extended family, owe him.

Mr. Gandolfini did something good with his talent and position that indirectly helped us adopt our son: He produced a documentary called War Torn: 1861-2010 which featured my cousin Nathan.

When filling out applications for home studies–the first step in the adoption process–social workers mail you a bunch of application forms to fill out (and charge you a lot for doing so) and then consider to take on your home study based on the answers. One question is if anyone in your family has a felony. Yes, my cousin Nathan. Are they in prison? Yes.

And from what I’ve read and learned elsewhere this is where our adoption process may have ended. Anyone just paying attention to the cold hard facts would know that a close family member, someone I grew up with, from a side of the family I’m close with, is in prison for a violent crime.

So I was angry. Angry at my cousin, our system, our military and my own neighborhood for giving out free drinks to the returning hero that night. My impaired cousin, suffering from PTSD after two tours in Iraq, started bossing around, then put a firearm to, an Iranian cab driver here in San Diego. You see Nate had starting having a bad alcohol-induced flashback where he thought he was in Iraq, and sad as it is, this was part of his job in Iraq, to detain suspicious drivers. The Iranian cab driver (the only description I know him as) did not get why this guy was ordering him around and did not know what was going on. It’s like two different movies were playing at the same time: One where an innocent man was being threatened by a crazy person (the true story), and the other where a soldier put in charge of detaining suspected bomb carriers (my cousin had driven over a bomb once, had three friends killed in action and this threat was real to him) had to pull a firearm on a suspicious man (my cousin’s head’s story). The cab driver acted appropriately, called the cops and, although it was terribly scary, no one was hurt. Nathan was taken into custody crying and confused.

And Nathan got six years in prison (a plea bargain) after being threatened with 15. (But he’s due to be released early. We’ve been told March 2014.) No look into his history. No care of his medical condition or time in Iraq. No consideration for it being a first offense. No treatment plan. Nothing. Just a DA up for re-election, a situation with a firearm (which adds 10 years to any sentence here in CA) and an open and shut case. (At the time there was no Veterans Court in San Diego, but I’ve been told there is now.)

A camera crew (sent out by Mr. Gandolfini) showed up to film Nathan after he was sentenced, but before he was scheduled to show up for prison. They were doing a documentary on “Shell Shock” which we now know as PTSD. While us Wesleys were cut from the documentary, my cousin Charilyn, Nathan, Josh and my aunt Charlotte all got to share Nathan’s story. And we got to know our cameraman, Matthew O’Neill, who we forgot was even filming because he was just so personable. (And he let my daughter play with his really really really expensive camera because it made her giggle. We liked him.)


Laelia (on the drive home): “Where Nate?” Me: “He had to go bye-bye.” Lali: “Bye-bye Nate.”

Two minutes later. “Where Nate?” (She thinks about it.) “Nate bye-bye.” (Feb 26th, 2010)

And that’s why the social worker asked, “You have a cousin in prison, but he’s featured in an HBO show? I think I saw that. Can you explain what happened?” They learned that the violent crime was just because of the presence of a firearm and not because anyone was hurt. They learned it was a very specific set of events that are not likely repeatable. They learned about Nate, the real person, not the criminal justice statistic. And my family (and extended family) after background checks and questions and lots of fact-checking were approved as a suitable and wonderful family for an orphaned child. Our son came home eight months later.

James Gandolfini did a documentary on PTSD that shook up the way we treat and view people suffering from it.

And that had a trickle down effect.

This film was shown to military personnel where they discussed it at length.

Things started changing.

Nathan’s mom became an advocate for returning soldiers and their families working through Blue Star Moms which began here in California.

Soldiers who were once told, “Don’t say you have any nightmares or any problems, or you’ll be delayed even further [from getting home],” and came away with the belief that “If the Marine Corps wanted me to have PTSD, it would have issued it to me in boot camp,” are now getting the resources, education and support they need. Or at least it’s getting better all the time.



I’m cuddling my son this morning. He has a yogurt mouth, a pencil in one hand and is singing two letters of the alphabet very loudly (making cleaning the yogurt off his mouth nearly impossible). It’s scary to think that not too long ago we may have been unfit to adopt because of the ignorance surrounding PTSD. And I’m left here thinking of the hundreds of people, from financial supporters, encouraging/praying friends, government officials, USCIS personnel, Reece’s Rainbow staff and a million notaries who helped bring our son home. And in that list, strangely, is one Hollywood actor turned producer.

In memorial of Mr. Gandolfini. You never know how one good thing can really make a difference.


AN UPDATE: I want to say that this is a very messy story. It’s not clear-cut, clean or nice. There are no “good guys” or “bad guys” but a lot of human people, even human court people. The law is set up as black and white and as unfair as it sounds to us, there is a real victim who got a bad scare that night and it probably left him shaken for a while. Choosing to drink to excess, whether to drown out a condition as bad as PTSD or for any other reason, is wrong. I hope there’s nothing political about this story. It’s just a true story about a good thing Mr. Gandolfini did to help soldiers and their families, which also helped us adopt our son.


Tuesday, June 18th, 2013

Here’s Roland standing up by himself (using the wall) for the first time ever!!!

Here’s Roland riding a bike for the first time ever!!!

I usually get to sleep in on Saturday. This was my wake up song. (Roland only knows two letters: B and Y.)

Which quickly de-evolved into this. My kids are insane.

A bunch of pictures.

Tuesday, June 18th, 2013

So here’s a bunch of random pictures. We won a kid’s digital camera in an adoption auction. It’s Laelia’s new favoritest thing ever. Here are four shots taken by Laelia.

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Daddy. I love the angle.


Mommy who doesn’t know she’s getting her picture taken.


Roland is grumpy he can’t play with the kid camera.


And a self portrait showing off Laelia’s first ever wiggly tooth! (Bottom middle.) :)

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Here’s a picture of Laelia’s x-rays. Notice the length difference?


Right leg… pins almost ready to come out!


Left leg pins. She’s only a few degrees from perfectly straight!


Picnic at the park.


Roland can’t climb the hill so he’s calling for Daddy help.


Both kids climbing to the top!


Laelia can now remove her shirt!


She lifts it over her head…


Then she flips over.


Then she looks up until the shirt falls off!


Roland was practicing standing with his braces unlocked. He didn’t like it.


Roland’s school happened to have a picture of Laelia up on the wall from three years ago! She was a favorite so they put her picture up. We got a good laugh when we realized that it looks like these are the kids guilty of bringing the weapons and drugs to school. The offender list. ;)


Daddy helping the kids inside the house.

Laelia climbs down by herself!

Sunday, June 2nd, 2013

Tonight as I left Laelia to brush her teeth and wash her face (and then prayed she wouldn’t just goof off the whole time as usual) I sat down exhausted and caught up on some email. Roland came toddling in and said to me, “Lay lee la down.” He looked back towards the bathroom and then looked at me expectantly. “Yes Laelia is brushing her teeth and I’ll put you both down for bed soon,” I said absently. He said, “Kay,” and walked away. A second later he came back, “Ba da da! Na down!” He really is trying to communicate something, and usually I would get up and take his hand and he’d walk me somewhere and show me what he wants, but it’s the end of the night and I’m tired so I just say, “Okay Roland wait a minute,” and go back to reading. A third time Roland says urgently, “Down Mama! Down da Mama! Layla!” I am only catching the “down” part clearly so I ask him if he wants to sit down and he says no. I ask him if he wants his doggy to come down off the piano where hubby had placed it. Roland says no and then thinks about it and in a cute little voice says, “Ummmmmmmm. Da.” (Da=Russian for yes) Okay then, “I’ll get your doggy down before bed, but let me finish these first.”

A second later Laelia says with a big grin, “Hi Mama!” And my mouth says, “Where did you come from?!!” Before my brain realizes that all those Roland warnings were about Laelia attempting to get down from a very tall chair all by herself and unsupervised.

Now don’t get me wrong, we had been practicing this. But she had never shown an interest in trying it without a lot of motherly hovering.

Plus this had happened the night before so it’s not like I had a lot of confidence. ;)


I don’t know if she is really stuck or if she just wanted some attention. :)

So getting off a chair without bending your knees is a very hard thing to do. (Remember Laelia has a bit longer in the straight leg braces that do not bend before her plates come out and she can bend her knees again.) And how she does it is totally impressive! She grabbed her daddy and me to show us exactly what she did. This video is the second time she’s ever done it independently.



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 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. ;))