Archive for the 'video' 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!!!

Laura’s kidney (kidney saga continues!)

Monday, November 18th, 2013

(For a link to the story with text click here.)

I want to thank Ashlee DeMartino from 10News for airing the original story (seen here) about the cancelled surgery. James is a great advocate and because of his fight and the exposure from the news report a new surgery date was given that’s only two days from the original date instead of two or more months! This last week has been a roller coaster ride for the Rivera family. Thanks for all your prayers and support. My aunt, uncle and cousin fly in day after tomorrow! Exciting!

(The above video contains Roland being a cute little annoyance who wouldn’t let us do an interview. He was really cute. He talked the whole time I did. :))

There’s so much background to this that is incredible. One of my good friends, Meg (who is responsible for the veggie lasagna that kept my newly adopted and very stubborn son alive for the first month home), really cared about her coworker, James. In fact one day when she was over she pulled me aside to talk about him. She told me all about his family and his little girls and his circumstances. She encouraged me to find out my blood type and consider donating to him since she was one of the few who knew I was starting that process anyway. I contacted my kidney coordinator and, after talking to Janine I got James’ coordinator too, but long story short he didn’t fit in my chain unless we wanted to kick several people off the chain who had been waiting a long time. Plus our two hospitals weren’t really compatible, although Sharp was willing to try to work it out if there were no other options. (Sharp Memorial and the NKR pretty much would have done whatever I asked even if it was in no one’s best interests but mine. They take care of their donors.) Then Laura said she would see if she could help. (So in a way Laura gets credit for the six additional people in my chain who got their kidneys since James was now taken care of.) After the testing Laura found out that not only was she a match for the oh-so-hard-to-match James, but she was a VERY close match! The kind of match they usually only see with siblings! I texted Meg the good news about Laura and she was texting me back while in labor and I didn’t even know. Haha! Her son was born sometime soon after that! This is the most random amazing story. James’ and Laura’s surgeries are this Friday!

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.

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.

 

Videos!

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.

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.

 

 

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. ;))

 

 

 

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.

:)