Archive for February, 2013

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.

:)

Six months ago today.

Friday, February 15th, 2013

This happened six months ago. Happy six months home, Roland!

 

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!

New Stuff Grandpa Built

Friday, February 1st, 2013

Many of you have seen the accessible light switches and door to the kids’ room that my dad built. (If not go here.) Laelia was able to get out of her room for the first time by herself using that simple contraption. Also one of the first great joys of my son’s post-orphanage life was being able to open and shut (and open and shut and open and shut) the bedroom door. When we were in Kiev he would shut the apartment door and then wait p.a.t.i.e.n.t.l.y for us to open it so he could swing it wide and then shut it again. Now he just does it all by himself all day long. :) He also loves the light switches and will turn the light off and on (and off and on) all the time… especially when his sissy is on the potty, taking a bath or brushing her teeth. Of course.

Well a few weeks ago Grandma and Grandpa came for another visit. This time besides some weather-proofing (what is this liquid stuff falling from the sky?!) Dad built a way for Laelia to enter the front door of our house! He had to figure out a way to keep the door in place using a gate latch. Then he drilled one of those shower bars to the door. Then he made a handrail (with another sturdy shower bar) for the one tiny step before that. I can’t tell you how nice it is to get Laelia out of the car and while I’m fighting with Roland’s carseat to just say, “Go in the house Laes!” and she does! Before I would use my necessarily beefy arms to hoist them both over the step and door jam. Now I don’t have to!!!

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Click here for a video of how Laelia uses them.

Also we got a portable “hide-y ramp” as Laelia calls it. Because it hides the one step to get to the living room. But it’s completely removable too! Dad even found left over carpet in our garage to match! Now instead of Laelia walking across the entire house to get to the living room, she takes the short cut! And she has totally mastered walking up this slightly-steeper ramp perfectly!

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No step here!

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Ramp upended to show it’s removable.

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And lastly he built a ramp going out the back. It’s just a simple one, but Laelia can do it herself!

We are just SUPER ACCESSIBLE NOW!

THANKS GRANDPA!