Archive for the 'big girl' Category

Birthday girl, Laelia, walking without braces!

Thursday, October 2nd, 2014

First off, HAPPY BIRTHDAY LAELIA!!! She turns 7 years old tomorrow! Here’s the birthday video I did for her last year documenting the years it took her to learn to walk.

Well now we’re doing this walking thing even better!!!

I need to preface these million videos with a few comments. First off, we didn’t think Laelia would ever be able to take steps without her braces. And there was much doubt in the medical community if she would ever take a single step, so ambulating with braces is still a miracle. But without braces? I didn’t really think it was possible. There’s only so many years of trying and failing before you assume she’s just missing those muscles. My hope, truthfully, was in some not-yet invented robotic.

Laelia largely directs her own physical therapy now, so when she showed a bit of trepidatious interest in walking with her KAFOs (full leg braces) unlocked at the knees we of course tried it. And lo and behold she got pretty good at it! Then we decided to try GRAFOs which are ground-reaction AFOs that cover much less of her legs requiring her to do a lot more work. (Dr. vanBosse in Philly had suggested these.) This led to the four month battle with our insurance that still haunts me, but we got them! She was super wobbly her first try in the physical therpist’s office, but she did great!

Next came walking in GRAFOs all by herself using crutches. “Stand back, Mom!”

Then getting so good at it she could go down the ramp and lift her crutches off the ground!

Then one day during physical therapy at home she just shed those crutches all together!

A few days later she was walking like she’d been in GRAFOs all her life!

So we decided, why not? Let’s try walking with NO BRACES! The crutches came back out for balance and she did it!

Then we moved up to walking in just her socks! Not even shoes on!

Then two steps all by herself without a walker!

Then four!!!!!!!!

Then she just held my hand and walked all over the place in nothing but socks! (Had to cover up our foster kid’s face in this one.)

And finally just once (she hasn’t been able to do it since, mostly because of her leg length difference) she walked across the room in nothing but socks while holding on to NOTHING.
(Sorry about the white box, but it’s the only video I have!)

We have so much hope for the future! I think she’ll be walking even better as she gets older! So exciting!!!

Hard times are rare, but unusually hard

Thursday, February 27th, 2014

 

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So I never blog anymore. Mostly because I’m living more adventures than I have time to write out.

The last two weeks have been nutso. But even though I started this blog to write out my hard times and get perspective, I’m writing today with great news!

Raymond has a family! A family! A family! Raymond has a family! Tra la la la la!

Raymond is this guy, an orphan on Reece’s Rainbow, and I’ve been advocating for him for about three years. He was the focus of Bring Hope, a blog I co-author. He was the focus of Grafted Branch, a .org my husband and I run. He’s been the focus of many blogs of mine. He has also had a spot on the sidebar of this blog for many years. He’s there now. :)

One of my friends wrote to tell me that she and her husband were interested in adopting Raymond out of that orphanage he’s in, but a lot of logistics were in the way. I thought they would be the perfect family for him, but I’ve had people interested in my other kids I advocate for and the majority of the time it doesn’t work out for various reasons. But they worked out their logistics and committed to Raymond! (Stacy you are the best mom ever! So excited for you!)

And that has nothing to do with me, but it changed the direction I was heading in. I had stopped praying several months back. I’d send up an occasional weak prayer, but it was empty. So hard to pray when you know that little boy is wasting away month after month with no end in sight and we can’t adopt him right now. I had felt this complete disconnect. And Raymond’s circumstances had a lot to do with that. The morning I received the news from several friends (who get up before I do) that Raymond had a family was the first day I was able to pray again. I was praying and crying as I emailed Stacy to ask if it was her (it was). I just gushed out my thankfulness to God for this one little life soon to be saved.

Life has been hard the last weeks for our family. Unusually so.

Laelia had her 8 plate removal surgery on February 12th. This was suppose to be a). an easy surgery and b). her last big surgery for a while. Neither would end up being true. The whole family flew to Philly since Roland also had his appointment. (He’s looking at 8 plate and external fixator surgery about a year and a half from now.) During Laelia’s surgery while we were playing with Roland on the 6th floor I got a call that they couldn’t bend Laelia’s legs once the plates were removed. That wasn’t good. So they wanted permission to put a pain block in and do a more aggressive surgery. I ran to the 3rd floor to sign the paperwork. They did several releases in her thighs to get those knees bent. It wasn’t that successful and it made recovery a bit harder. When she woke up she had troubles breathing which is rare for her. I spent the whole day bent over her until my back was sore. That night my huband stayed the night and I took Roland back to the Ronald McDonald House where we finally (after being turned away to a hotel initially) got to stay.

Then a blizzard hit.

Public transportation was down, roads were closed… It was one of the most stressful things I’ve ever gone through–being five minutes down the road from my post-op baby and no way to physically get to her. Finally, after taking great pity on me, the staff at RMDH got James, their shuttle driver, to make a trip once it was safe. It turned out a family at the hospital were desperate to get back and I was desperate to get there so he’d make that one trip. Then we’d be stuck at the hospital indefinitely. Well long story short, the family desperate to get back was my family, Charles and Laelia. The hospital worked out an early discharge and they were on their way. (If they hadn’t figured out we were the same family it would have been terrible to have swapped positions but still be separated!) Laelia was sore and cold but once she was back in my arms she was going to be okay. Another storm was coming, but we could beat it and fly out before it hit. So that was the plan but the night before our flight home she threw up all that night. Then she threw up 12 times on our planes home. We thought it was from the anesthesia, but it turned out to be a virus that had broken out in the hospital. So after two days with no sleep and a cross-country experience I’ll never forget we got a ride home (thanks Debra!) and then got in our car and drove straight to the ER. Laelia threw up violently in the ER parking garage. But they put her on some meds and that was the last time she got that sick.

Until my husband started throwing up.

And then I got a really bad cold and I couldn’t breath, but throwing up trumps a bad cold so I was still the single parent and taking care of my husband.  But my cold was awful and the sinus headaches kept me from sleeping. When Laelia was done throwing up she had lots of complains about potty time. Turns out she had a bladder infection, which involved another doctor and another medication in the middle of everything. So she’s been sleeping with a towel under her at night because the bladder infection makes her feel like she has to go all the time.

So I was putting that darn towel under my daughter and stupid me decided to just pick her up and move her onto it… while bent over her… while twisted a funny way. I blame the complete lack of sleep for my idiotic move there. She weighs like 50 pounds of dead weight by the way. Yeah I completely threw out my back… which not only kept me up all night in pain, but required two out-of-pocket trips to the chiropractor and put me out of commission for things like dishes, doing the kids’ stretches, walking, bending over, etc. That put a lot of strain on my husband for several days. And just when my back felt better I got another different cold, this one with mucus. Seriously.

So that’s where we’ve been. In Stressville. So why am I smiling like a crazy person and jumping (awkwardly because of my back) for joy? Because Raymond has a family coming for him. I have a major headache while my son is shaking a bottle of Tylenol right by my head like a maraca. And Raymond has a family. I’m coughing so hard I accidentally peed. But Raymond has a family. I leaned over to grab a toy off the ground and was not able to stand up again. Well, Raymond has a family. I haven’t slept in weeks. But Raymond will soon have a safe place to sleep under the roof of his family. My hair looks like this.

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But Raymond has a family. ;)

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Raymond

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Flying to Philly

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Laelia and Roland at the RMDH

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Roland’s friend Luke at RMDH (whom Roland calls “Mylukey”)

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The Please Touch museum in Philly

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Motorcycle at the museum

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Bakery at museum

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Hospital at museum where Laelia had the most correct medical knowledge and vocab of any of the kids there.

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Waking up after not much sleep (it was 3am our time) for Laelia’s early morning surgery.

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Waiting for surgery

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Roland waiting for surgery… in the toy room :)

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Going into surgery

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Laelia waking up from surgery looking like she has princess hair. My daughter is magic.

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Snow plows excited my son like nothing else.

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Snowpocalypse!

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Back at the RMDH after surgery

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Mean mommy made Laelia do the required homework.

The next day was Valentine’s Day. These are the cards I got:
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Yeah, Roland wrote his to the bus. :-/

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While we were snowed in Roland and I took down the snow decorations and put up Valentine’s day ones.

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We hated snow at this point. Trash it, Son!

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Laelia standing that night without braces! (Later that night she started to throw up.)

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Flying home while sick was hell.

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Laelia at the ER here in San Diego. She’s still wearing her flight wings.

 

Video of Laelia

Monday, September 16th, 2013

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

Enjoy.

First day of school!

Friday, September 6th, 2013

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First day of 1st grade and first day of preschool WITH bus service!!!

(How dare this girl be in 1st grade!!! She was in newborn diapers yesterday! And didn’t we just bring home Roland from the orphanage ten minutes ago??? Not right!!!)

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After so many weeks of wanting to ride the bus, little Rolly was doubtful this would happen.

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When the first bus arrived they started cheering!

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It was for Laelia. This marks the very first time our bus service has worked out correctly on the first day of school. For preschool the bus never came and we ended up fighting them for a while until they realized we were NOT backing down and gave us a bus. For kindergarten the bus took Laelia to the wrong school while both Charley and I drove to the correct school and then went crazy looking for her.

But today with the same bus service nothing went wrong! Well except for Roland cried when Laelia left. I should have known that would happen. He wanted to ride the bus with her. “No bus! Ba back! (Come back) No! Waywe-a! (Laelia) Ba back Waywe-a! Bus! Boo (school) bus! Boo bus!! No mama no!”

Yeah after 15 minutes of that, his own bus showed up.

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Roland’s bus driver strapped his car seat in. (Yes still pink. By the time he’s in college we’ll get him a blue one.)

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Actually I was really worried. Roland went blank. I asked if he liked his school bus that he’d been begging for all summer and he didn’t say anything or give eye contact. He did not understand when I got off the bus without him and I watched his blank expression as he drove away. I was getting flashbacks of his trauma coming out of the orphanage.

But his daddy was waiting for him when the bus pulled into his school. Charley called me right away and reported that Roland saw him and was all smiles and happy to be back in his classroom. Then he chittered endlessly about his school bus adventure in Rolly language. He gets bus service two days a week and he has school for only three hours in the morning so it’s not too much for him.

After I put Roland on the bus I shot over to Laelia’s school for orientation. I met her teacher and aide and gave them all the usual warnings. ;) Laelia clung to me doing her “fake shy” thing. But two seconds later she was in the swing of things. We even decided not to bring her walking sticks this year and see how it goes!

The only sad part was when Roland came back home on his bus all smiles and then went through the whole house looking for his sister who has three or so more hours of school a day. He asked maybe three thousand times, “Waywe-a where?”

When Laelia finally got home she was sound asleep on the bus (as usual) and Roland screamed his hellows so forcefully and so jubilantly that she woke up. Then they hugged a lot and two minutes later they were fighting over something. 0_O

Love these kids.

And these kids love school.

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Summer 2013!

Friday, September 6th, 2013

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Let’s see what the sweet, precious and totally not insane children have been up to all summer shall we?

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In July Laelia lost her first tooth. I took a picture with the Tooth Fairy app while Laelia was asleep. The next morning she was so onto me. “You said faeries were pretend. So you made that fairy in the picture. So I want to make a fairy!” And that led to the second picture where she pretended the fairy was stealing all her teeth as she screamed, “NOoooo Fairy! Not my TEEF!!!!”

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All summer we tired these kids out! Sometimes they even made it to their beds!

Thanks to Lauren and Ryan the kids had access to a swimming pool this summer!

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And of course we live next to the beach so lots of beach time!

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Then we met up with family from Tennessee and Utah at Newport Beach!

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And that night had dinner in Downtown Disney!

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Let’s see what else…

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Roland waited for school to start again. He wore a backpack and asked for a school bus.

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All the time.

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Every day.

School had not started yet!

Then I have some pictures of these masked children, whoever they are.

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Laelie bug

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Rolly bug

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Reading.

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Mom got slightly better at sugar-free dessert. This is a chocolate “cake” with Greek yogurt “frosting.”

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Party time :)

Oh and Grandpa and Grandma came down and took the kids to the zoo!

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Watching the monkeys.

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Roland actually climbed up that little step all by himself!

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Baby flamingo!

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Feeding the goat. (Roland called them all “doggie”)

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My bugs

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She’s nose to nose with this guy.

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Balboa park train ride.

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Balboa park walk.

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Children at fancy restaurant… fail (yes that’s Laelia’s foot.. stinker)

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Faaaaaaaaaaaaaaaail

Staying quiet or sitting up is beyond them!

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Laelia started making maps this summer. She loved to draw the map and then make a compass for it. Her maps led through forests and tunnels and passed monsters until you reached the X.

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“I did this all by myself.” Danielle, Charles’ former coworker, tutored Laelia in reading all summer. Now she loves to write sentences. And the compass has North, South, East and West, mostly backwards but in the right spots. Adorable!

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We also collected shoes for Angel Bins.

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We collected 530 pairs and all proceeds went to a Southern CA family adopting a special needs little boy in Ukraine.

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All in all a good summer. :)

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. ;)

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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.

 

 

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.

:)

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. :)