Archive for the 'friends' Category

Double Birthday Fun!

Saturday, October 5th, 2013

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Laelia cut her own hair.

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And the lady at Supercuts evened it out for her birthday. (It’s short, y’all.)

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Grandpa and Grandma drove the ten hours down to stay with us for a couple weeks.

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They wear the kids out. :)

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And they bake the kids cakes!

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Hand-decorated by Grandma

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Birthday hair band

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On the go!

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Wink

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“It’s my party and I’ll cry if I want to.” Whiny boy was cold. Mama didn’t mind all the cuddles to warm him up.

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Presents!

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More presents!

Tomorrow we drive up to LA for the AMC mini meet up! Can’t wait to see all our AMC friends!

These last several days were nuts. In the the last 12 days and next two we had/will have:

1 ministry fair
1 major all-day metabolics clinic we waited 8 weeks to do, with testing
2 visits to the orthotist
1 battle with insurance over a shoe lift
2 school meetings for Roland since he no longer qualifies for Head Start because of his diagnosis and we have to transfer him
1 meeting with regional center (2 hour psych eval for Roland, he’s now testing at 26 months old, he’s three)
1 wedding
2 trips to AWANA with verses memorized
2 ball games (Miracle League) for Laelia
Cleaning the house for 3 visitors coming to stay with us
1 blood draw and doctor’s appointment
3 special writing projects
1 trip to Laelia’s school for her citizenship award
2 trips to Sharp to meet with doctors
1 Compassion Int. conference where we worked the booth
1 AMC meetup in LA
1 double birthday party for both my kids
2 orphan blogs due on the first
1 giant fundraiser with multiple vendors that I’m organizing

And of course my surgery is Monday. I’m donating my kidney to a stranger same as my hubby did a year and a half ago. Kids will hang with their grandparents while I’m recovering the next couple weeks.

Then naps for everyone!

Vegas baby!

Monday, July 8th, 2013

This last week was the AMC Conference in Las Vegas! We drove up to see hundreds of AMCers from all over the place! There were over 500 attendees! The drive was six hours. Six. Long. Hours. (Roland slept for maybe five minutes total.) Here’s a cartoon I drew of the drive. ;)

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Hey I only thought about it!

So one big thing I wanted to find out in Vegas was what type of arthrogryposis Roland has. Dr. Me (Myself and I) had already diagnosed him with mild amyoplasia, but he wasn’t “classic” amyoplasia. His limbs are stronger than typical amyoplastic limbs for one thing. He has no inverted shoulders for another. And have you seen his  nice, functional hands with minimal finger contractures? No abducted hips. No downward bent wrists (they are stuck upwards and are unable to go down). Really he presents a lot differently than Laelia despite all their similarities–stork bites on their faces, knee and elbow flexion contractures, clubfeet, etc. Well we would get to meet with the famous Dr. Judith Hall and take advantage of her 40 years of AMC-specific research. But unlike when I met with her about Laelia years ago, this time we had a big question mark by all our kid’s family history. We joked that we wanted to make it hard for her, to test her stuff. But of course Dr. Hall is knowledgeable about all 400+ types and was up for the challenge!

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Dr. Hall (far right) consulting parents all day for free

So ready for it? Roland has… *drum roll*

Arthrogryposis – Distal type 2E

There are 85 cases of Distal type 2E known to Dr. Hall. Super rare. Now I know what you’re all thinking, “Distal? But distal only affects hands and feet! Plus he has lots of muscle loss that’s indicative of amyoplasia!” Yeah that’s where my mind was too. (Okay maybe that was just me. ;)) But apparently this type is very VERY similar to amyoplasia, in fact it probably could be described as a light case of amyoplasia in most ways. So how is it not just “mild amyoplasia?” Well there are 17 types of Distal AMC. Type 1 is just hands and feet. Type 2 is hands and feet and “something else.” So we’re type two because Roland has severe elbow and knee contractures as well as a smaller jaw. But we’re not just type 2, we are type 2E. This type is NOT genetic and has everything in common with amyoplasia, including the big mystery of what causes it. Dr. Hall mentioned that she thinks the difference between amyoplasia and Distal type 2E is just the timing of when whatever caused it… happened. So Roland’s case is caused earlier during development in the womb when different things are growing and Laelia’s classic amyoplasia happens a bit later. (Or vise versa. I can’t remember.) Roland’s AMC was caused when his face was still in development. His asymmetrical face has large eyes, a large nose and small jaw. Dr. Hall said that classic amyoplasia babies like Laelia have “perfect little faces,” but Distal 2E kids have Roland’s exact face. I was told in no uncertain terms that that is NOT a “Russian” or “Ukrainian” nose. They don’t get that big at his young age! Haha! To give you an example here’s another little boy who was diagnosed with the exact same thing on the same day.

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They also have very similar personalities!

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They’re like twins, am I right!

This is A.J. His parents started the Raise Your Glass foundation! I contributed a writing piece to their efforts to celebrate Dr. van Bosse and raise money for Shriners Children’s Hospital a while ago. Crazy small world!

Okay so we got a diagnosis. Now to the rest of the conference!

Oh actually one more thing I wanted to share. We saw a gal at conference who was born in the 60′s and who walked around in Laelia’s exact braces. It’s rare to see KAFOs that are one piece (no joints for knees) and there she was with Laelia’s exact gait too. And I realized that there was a small part of me that held fast to Dr. Fathead’s words from long ago. He told me that he would not do anything to help straighten my daughter’s legs out because “once she hits 60 pounds she won’t be able to stand and will crumple under her own weight.” He implied this would happen with braces. Okay I just looked it up and found where I blogged about it. To quote my grieving self from February 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. Whatever went wrong inside me, made it so that her muscles didn’t grow normally. The doctor said her AMC is like Polio, we don’t have a cure and don’t understand why she doesn’t work right. 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. She also does not have the arm strength to use a walker or wheelchair. She’s not quadriplegic since she can twitch fingers and slightly bend elbows. Once again we find ourselves crying out to God and stunned with grief at the thought of a little girl who won’t dance on her wedding day or who can’t go to the bathroom without assistance.

Excuse me while I go back in time and cold cock some doctors. Someone have a drink I can throw in their faces really dramatically? Because… really doctors? Really?! Amyoplasic limbs “will not grow with her?” Ugh. Here’s a science lesson for you for free, whatever anterior horn cells developed into muscle WILL grow and will grow large as they compensate for missing muscle in amyoplasia kids. Laelia didn’t have certain muscles until we worked them (something you told us not to bother with) and she couldn’t do that until she was in a position to stand… a position you refused to put her in! Boo on you! Ugh. I remember asking so many questions that appointment and just getting shot down until all hope was gone. (And he took away hope that my girl would walk down the aisle or dance at her wedding! Watch this video taken at conference with her little boyfriend and tell me she won’t! I dare you!)

Okay so now I logically know that the whole 60 pound thing is bunk, but there’s a small part of me that unconsciously worried that 15 pounds from now, when Laelia reaches the magical 60, she would crumple. This doctor obviously had never met an adult with AMC before! And I’m glad for the opportunity to face those unconscious fears I didn’t know I still had! Plus when Laelia saw adult leg braces just like hers she got excited, “That’s a grown up like me! She walks and does grown up things with braces like mine!” That’s why we do AMC conferences y’all!

Okay onto more pictures!

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Right before we were going to head out the door Roland made a mess. Typical.

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These are my children back before the six hour drive, back when they were sane.

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Roland’s first 4th of July! Check out that shameless American flag shirt for my new American!

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Tracey, Deborah, Nick and Keely.

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Scarman posing with Laelia and Ryan. He hadn’t seen them since they were both in wheelchairs!

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Yes we put baby in the closet, but in our defense it was a giant walk-in closet and we all actually slept after he was out of our beds!

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Lily, Laelia and her boyfriend Ryan.

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This is how Roland sits in a chair. *chair fail*

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We hadn’t seen Tyler since Reenee came out to San Diego for a visit and some PT goodness.

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Laelia, Elliot and Ryan

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Ileana, Tracey and the kiddos

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Ani lovin’. They both ran into her arms. Roland likes to hang.

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The San Diego crowd!

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These two…

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Laelia and Lucas. She’s tickling his feet using the invention to lift her arm that he inspired when he bit his sleeve to lift his arm!

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Laelia and Daddy

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How to carry a Laelia.

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How to carry a Roland.

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How to freak out your mom when she’s distracted taking pictures. (Have your dad lower you down above her head until you’re in the shot! I about jumped out of my seat!)

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Fall into Lily #376

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Crowded around the iPhone

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The kids doing Ring Around the Rosie for the Talent Show. Roland started walking three months ago, Laelia (without crutches) nine months ago and Ari (far right) five months ago.

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Fall into Angie #385 (What? My kids like to fall into people!)

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Here’s one of Laelia falling into the dads when they were not ready for her.

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Here’s one of her flat out tackling Ward to the ground. Where is her mother? Oh right. Taking pictures. ;)

We went to sessions on genetics, adoption support, mom support (for me), dad support (for Charles), alternative therapies and more! We had to take long 20+ minute walks just one way to get to the main conference area from our hotel room and both kids walked the whole time! Then we came home and I’ve spent all today avoiding unpacking. So I drew another cartoon! (Actual conversation where Charley and I both described each other’s jobs.)

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Click to enlarge.

I hate unpacking.

 

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. ;))

 

 

 

The easy life

Wednesday, March 13th, 2013

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I wanted to write a little about how we’re doing considering it’s been six months since we brought our newest little home. I’d describe our adoption as “easy,” not that it was always that way, but because on the grand scale of things we have been incredibly blessed, and that has nothing to do with us. We weren’t especially prepared and we weren’t especially good at patience or parenting tricks. Regardless Roland has fit in really well, bonded incredibly fast and we all love each other. And thanks to our wonderful family and friends we were able to provide him not only a home, but a loving community.

I have incredible respect for those families who choose love during the hard times. I sometimes think I have this so easy because God knows I suck at being a loving mother during a screaming fit. And even though it’s been easy (much easier than we expected) it hasn’t always been roses. I’ve struggled with anger during the last six months. You’d think communication difficulties would just be hard on the little one, but I found myself getting angry! “What in the world do you want?!” has come out of my mouth more than once. And I have felt deeply the irony of yelling, “Stop yelling!” And some days I’m only one more “No!” or “Ow!” away from grinding my teeth to nubs. Oh and have I mentioned that my cute little man still has the well-earned nick name Mr. Screamers? I feel like my major accomplishment in this adoption has been to show the world that ANYONE can adopt.

And even though Roland has had some trauma in his past, most of what we’re dealing with is just two year old boy. I think my biggest parenting handicap is the fact that Laelia was so easy on me!

But really even when we were loving a picture of a boy and imagining what he would be like, I didn’t really think I could have as much love for him as I do. I mean Laelia is my world. She’s my life. Come on, she’s Laelia! So how after six months do I have as much love for my Roland as I do for my Laelia? He’s not flesh of my flesh. I didn’t have his newborn face to memorize or breastfeeding to bond us, but I love him as much as my daughter. How? I don’t know. It’s true that love doesn’t divide, it multiples. But I didn’t expect it on this scale.

Sometimes holding my little cuddly boy is healing. Just goodness.

We adopt because we were adopted. We love because we are loved. We give because it’s all been given to us. Our entire family is one collective response to a divine Initiator.

People say all the time now much Roland looks like us. And I know that’s true, but when I look at him I notice every single Ukrainian feature. I’m drawn to those differences like anyone is drawn to notice the differences in things. The things that look nothing like us are just as beautiful as the things that look like us. His eyes are the same color as his sister’s. His skin has the same paleness as both parents. But that Russian nose and dark eyelashes are on a completely different genetic canvas and they are beautiful.

So I know I haven’t found the time to write endlessly about our days, regretfully, but know that we are imperfect people who are enjoying life and learning as we go. And things have been good.

Really good.

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Our excursion up north… in pictures

Friday, February 15th, 2013

It’s nice to have most of our family living in the same state… oh wait, it’s the state of California which is freaking long! Family is really a ten hour drive “up the road” so we don’t see them as much as we’d like. But a friend’s wedding provided the opportunity for a road trip and off we went to make the rounds! Here are a few pictures of our trip. (I realize now I missed out on pictures with Grandma Wynema, Aunt Linda, Ginny and Emily and Daniel. I guess we were just too busy having fun and catching up.)

The wedding (Saturday):

We drove up Friday night after Charley got off work. We arrived in Fresno at 1:24 am only to be told our room had been accidentally given away. We drove around looking for the other hotel. We got the kids to bed by 2:15 am by some miracle. So then we were crossing our fingers that they would last the whole wedding later that day without being the crazy children they already are, but more so. Crazy concentrated  Lynn’s wedding was so great because the ceremony was set up in the banquet/reception hall. So we sat at the tables we would be served lunch at while watching the ceremony. Somehow this made it very intimate and perfect… like a family reunion. Roland missed most of the ceremony as he had to be louder than anyone speaking. At least I wasn’t the only one in the “little screamers” section and the set up made it less obtrusive to dart out the back. :) Roland cheered, clapped and hollered when the couple walked back up the aisle after the ceremony. :)

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The couple: Lynn and Doug

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Becky

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Bubbles!

Check out the video of my littlest trying to blow a bubble. He would have passed out before too long. :)

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Check out that face!

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That face there. :)

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Laelia decided to “meow” silently during the entire ceremony. Don’t ask.

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Roland sat with Becky… you know for the 30 seconds he was quiet, then they darted out the back. :)

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Loud little man!

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Flirting with my camera.

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Oooh!

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This was our table.

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Kids with Uncle Bolt

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One kid stealing food off the table.

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I had put the bubbles way up high, but Laelia climbed a small mountain of wide stairs to get to it! The first step was almost as tall as she was, but she did them all by herself. I even got a short video of the last couple steps. (She started at the bottom!)

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Sunday:

We drove up the extra three hours to Placerville that night with a little boy who cried most of the drive. (He had his casts cut off, bivalved and strapped back on with ace bandages which cut into his skin. Long story.) We arrived a bit after midnight and worked on getting the kids to bed. Later that morning we visited the church Charley and I met and fell in love at. It was nice to see the familiar spots like  that parking lot we used to make out in the… um… trees. :) And we spent some time at their new playground.

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Lunch after church at Tortilla Flats!

AMC Mini Meet Up:

Charley had to drive back to San Diego right after church. (He ended up being too tired to make it the whole way and stopped off in Bakersfield at Linda and Phong’s to sleep.) He had work the next morning, but the kids and I stayed a few more days. Through Facebook I learned of another AMC family living right down the road from my childhood home! So we went to her house. It was us three, plus Becky and her kids, plus Kayla and her kids and a friend. It was funny how we all knew some of the same people even though we lived a long ways away.

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The AMCers

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Love these people!

The next day we visited Sue who had just had hip surgery a few days earlier. We also visited Ginny and her family. Both Ginny and Sue flew down to San Diego to see us after Laelia was born and to welcome us to the special needs community and offer support. I had no idea what to do when Laelia was born. Wow how times have changed!

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Helping “Auntie” Sue learn to walk again. :)

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Getting Jared rides. :)

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Destroying Juni’s princess tent. :)

And last but not least…

Staying with Grandma and Grandpa and GIANT DOGGY!!!

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The three “kids.”

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Dog = ride-able

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Giddy Up!

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Grandpa taught Laelia poker (which she called “pokes”) and she beat us. All. The. Time. We even dealt the dog in. Laelia would give back cards that made no sense and then STILL WIN. ACCCCCCCCC! Grandpa says he’s taking her to Vegas.

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My car goes on your head. You’re welcome.

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Rolly Man getting tuckered out.

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Rolly had to be typing too. So they put a calculator out for him.

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Laelia pushing Levi.

Here’s a video of her pushing  Roland all over the kitchen. Compare it to this video in the same kitchen. She’s come a LONG way!

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Aunt and Uncle meeting Rolly

Afterwards we went to Seniors Club to meet all Grandma’s friends who had prayed Roland home.

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Laelia and Grandpa

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The little rascals. (Soon to be four! One more is coming from the Congo!)

We got to fly back home because these kids would not put up with another drive. (Especially after we drove out to Elk Grove one day, and Folsom the next.) We closed an entire TSA lane in the security area when I put Roland’s homemade walker through the xray machine and it got stuck. They had to open it up to get it out. I guess it was suspicious because of the two random planks of wood I had duct-taped to the bottom to add weight. The lady asked, “What the hell is this?!” I answered, “Roland needs a walker. Walkers cost $3,000. This was $5 plus $2.50 for caster wheels.” Then I hand it to my son who happily walks around with it yelling, “Wok wok wok!” (His word for walk.) The lady then smiles and says, “You saved $3,000? Say no more. That’s awesome.” Laelia demanded to walk through the area because she could walk now over “bumps.” They were telling her she couldn’t because of the metal in her braces. Guess who won. :) Roland is a MUCH easier flyer now that he’s been home for six months, and surprisingly taking my two AMCers on a flight was not that hard. These two are wonderful travel buddies when they want to be!

Remembering the heels

Thursday, January 24th, 2013

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There was a physical therapy convention in San Diego this week. Hundreds of PTs from all over swarmed the convention center. As we walked by several cheered on Laelia as she manuvered through the Hyatt hotel lobby. Yep we were in PT world. Laelia was the star. Haha! A few helped her through the front doors (there was a lip) and one said, “Oh! Arthrogryposis!”

But we weren’t there to attend the conference (I’m not a physical therapist), just to slip in the hotel lobby and see Reenee Donohoe, a PT out at Dupont Hospital in DE. (The one holding Roland in the above picture.) We had met up with her briefly in Kansas City during the 2010 AMC conference, but only briefly. I mostly know her from Facebook.

Remember when Laelia first tried some crutches?

 

Well Reenee saw this video and wrote me on Facebook:

“Hi,
I saw your video. I think Ms.L would do better standing with a wedge under her heel. Try duct taping ~ 1 cm piece of foam, cardboard, or cork under her heel and she’ll stand and balance straighter. She might need a little more than that but it is a good start.
Reenee”

Two weeks later while Laelia was playing with wooden blocks I got a wild hair and duct taped them to the heel of her shoe. I said, “Hey Laelia do you want to wear some fancy high heels?” She said no. Ha! Too bad!

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Immediately she was standing without assistance for the first time in her life! A mere few hours later she was walking with full confidence and no falls!


 

Eventually Laelia got good at walking and we switched to three dominoes duct taped together which made for a lower heel. Then once knee surgery straightened her out, little Laelia no longer needed heels.

So yeah we like Reenee. :) Her wedges (heels) idea wasn’t bad either. ;) And it was fun for Laelia to show off her (now expert) walking skills in person just over a year later. (Part of me still can’t believe she walks.) And it was also nice that Roland got his PT consult in person instead of over YouTube and Facebook. :) We even met some new friends: baby Tyler and his parents! All in all a great visit!

Laelia is a super walker now, but I have to admit that sometimes I miss that little princess in her high heels. :)

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!”

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.

Lyrics:

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!

Friends!

Tuesday, October 9th, 2012

Last Saturday was our Southern California Arthrogryposis Meet Up! It was at Angie and Rob’s new house and we had a blast. There was a bounce house which Roland LOVED, and Angie made Laelia a birthday cake for her fifth birthday which she LOVED. Plus we got to see so many friends!

Hanging out in the living room.

Liam, Ryan, Laelia and Roland.

He loved the bounce house! No fear!

They had a blast in there!

Roland and the ladies. ;)

Ryan (Laelia’s *cough* boyfriend) helping decorate her cake.

The first time the fan blew out the candles and we had to re-do. :)

These girls are so much alike. Marion and Laelia.

Roland and Jen spinning Laelia in the chair.

And here’s a video of Laelia and Jen spinning Rolly in the chair.

Ileana (who also has AMC) designed these shirts for the kids! You can order your own here.

Here are some cool black-and-white pictures from Rob’s camera:

From left to right: Laelia, me, Roland, Angie, Heston, Ileana, Elliot, Ryan and Marion.

Here are a couple of adorable pictures of not-so-shy Laelia with her little shy boyfriend, Ryan.

Click here for a video of Laelia chasing poor Ryan (who was walking without his KAFOs) down, hugging him, kissing him and then bossing him into following her to play in the other room! Oh my goodness!

We stayed late and it was close to a three hour drive home so obviously the kids were exhausted. Roland did okay on 2/3rds of the drive up, and he slept most of the way back. After playdates or a lot of stimulation, Roland often can’t sleep. He gave a little  resistance when we got home, but his Ukrainian teddy helped put him to sleep. He did so well during this adventure that we’re debating whether or not we want to start doing more grand adventures with him. We’ll see! :)

Easter Pictures (presented without commentary)

Wednesday, April 11th, 2012

Happy Easter!