Archive for the 'endurance' 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!!!

Expecting the unexpected

Friday, March 7th, 2014

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Can life get better?!!! Right after we found out that Raymond had a family, we got word that a donor had dropped several thousand dollars into Aubree’s account! Aubree is another one of “my kids” (orphans with AMC who we advocate for). Aubree now has $15,000 in her account!!!!!! WOW!!!!!!!!!!!!!! And since that money went into her grant I’ve had two moms ask me what would be involved in adopting her and that they were praying about it! Of course they are far from committing, but the financial burden being lessened is really opening up doors for Aubree who has about a year left before she’s ineligible for adoption. Whoever you are, thank you thank you thank you for giving to Aubree!

So many people ask us why we aren’t adopting all these kids we advocate for. Let me just say that if I *could* there are FIVE kids with AMC who I would adopt in a heartbeat (not an arbitrary number, three are in China, two in Ukraine). Our experience adopting our son with AMC has been one of the best things that has ever happened to us. I say all the time that I would adopt ten more Rolands. But in reality it would be closer to 20 or 30. ;) They would absolutely trash my house, but it would be worth it. :) But our lives are heading in a different direction. Several months ago we went to a Resource Parent Orientation. A week later we made the decision to apply to become foster parents. Our focus will be on reunification with birth parents (aka we’re not in this specifically to adopt again). And our social worker will be helping us care for children who will be a good match with our own children and their needs and vulnerabilities.

Three days after returning from Laelia’s last surgery we started foster parent training classes. (And if you read the last blog you know that was not a stress-free time for us.) Hubby’s classes are in the evenings after work and my classes are 6.5 hours long on Saturdays. Except for this Saturday because the kids and I are flying up north to see my cousin Nate!

Nate has done two tours in Iraq, been the subject of the HBO documentary “Shell Shock,” and spent the last several years in prison for holding a gun to a cab driver’s head when he was having a PTSD flashback. (The cab driver was Iranian and part of Nate’s job in Iraq was to do this very thing. He thought he was there.) No one was hurt at all, and they found Nate crying and completely confused at what had happened when he realized he was still here in San Diego. But no treatment was offered and the presence of a gun meant automatic prison time so he took a plea deal. He was just released Sunday. He hasn’t seen Laelia since she was a tiny thing. She hardly remembers him but she’ll see him again tomorrow afternoon. We fly out early in the morning. After doing the cross country trip from hell two weeks ago, this trip will be easy, even if I am going alone with the kids.

And after we get home from this trip we wait three more weeks and have our lives upended yet again.

Here’s the story: Two days before Laelia’s surgery we had an appointment with Dr. van Bosse to see the kids. While in the waiting room (with several other AMC families) we discovered that the upper extremities doctor, Dr. Zlotolow (we call him Dr. Z), was leaving for the day and we had forgotten to actually set up an appointment with him. We needed him to look at Roland’s elbows as we had just finished up the second round of serial casting. Thankfully he agreed to see us before he went home. He vasillated between recommending the surgery and recommending waiting. Roland’s arms look pretty good: one is at 75 degrees and the other around 90. Finally Dr. Z made the decision to keep an eye on Roland’s arms and put off any surgeries. We got a prescription for two elbow splints which work really well. I know we’ve gained ROM (range of motion) on his elbows just from stretches and these wonderful splints alone. Will he have that elbow release surgery in the future? Who knows. So far he hasn’t had a single surgery. Lucky duckie.

But we really didn’t expect the doctor to look twice at Laelia’s arms. Blessed with excellent passive ROM from us stretching her since birth she doesn’t qualify for any of the usual AMC-related arm surgeries. She also lacks the muscle for a muscle transfer. So we were very surprised when he showed us plain as the noses on our faces that she needed arm surgery to assist with feeding herself. In every picture I have of her I’m now noticing how much her arms are rotated. If you try to put your own arms into that position you’ll realize how awkward that feels. Here’s one example in a picture.

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Laelia’s hanging arms are twisted inwards with palms out.

What will fix that is derotational osteotomies (cutting the bones and rotating them). The same thing they did to her legs when she was three, only this time with her arms. If successful it will help her with reaching her mouth and holding a ball. If REALLY successful it will help her to clap her hands together. (Right now she claps the back of her hands together.)

So when is this major surgery happening? April 1st. Not an April Fools joke this time. (Although everyone will probably think so based on my track record.) She will not be able to use her arms for six weeks after that. She will not be able to walk since falling (which happens) would have dire consequences on those healing bones. She will not be able to write, play on the iPad, feed herself, etc. For all practical reasons she’ll be a quadriplegic. She’ll need constant care and supervision. And we thought this last trip to Philly would be the last one we would have for a long time. Boy were we wrong. Two more trips in April alone. Big time recovery. More stress.

Another complication recently has been with our insurance company. They are refusing to cover Laelia’s leg braces. So she STILL doesn’t have them, and it looks unlikely that she will get them before the next surgery where she won’t be able to walk. I can’t tell you how awful it is that she went through a leg surgery and now doesn’t have the needed braces! The old ones don’t fit anymore and they are hurting her. The CA doctor (more accurately his nurse) I sent the prescription to messed up big time. The orthotist tried to get them made and our insurance told them they would not be covered.

Long story short our only recourse if we don’t want Laelia’s legs to atrophy after surgery (where they stressed the importance of PT and correct leg braces for recovery) is to have them made by the same people who were so incompetent when Laelia was a baby that we fired them. And it is taking forever!!!

Laelia has huge “balls” on the bottom of her feet so we could not have her braces made in Philly as they require many many adjustments as the giant sores move and the braces are always needing to be repadded. Laelia’s feet are also starting to reclub. Ugggggggggggggh. Reminds me of this thing I saw on Facebook: “When someone asks you ‘What would Jesus do?’ remember, a valid option is to freak out and turn over tables.” Author unknown.

Yeah, I’m about there emotionally.

 

I’m going to end this post on a happy note: random pictures of my cute kids!

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Laelia’s trying on a wig.

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Laelia seeing her first ever movie in a real theater: Frozen

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He always steals my oven mits. :)

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Roland found and destroyed an entire roll of wrapping paper.

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In-N-Out philosopher

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Swing outside Children’s museum

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Roland hiding from the doctor for his appointment

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Tired Roland is tired.

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Don’t let Roland drive the bus!

 

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.

 

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.

 

The best gift to an adopting family: baby pictures

Monday, June 24th, 2013

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Roland’s only baby picture

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

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


 

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

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I’m all grow’d up now.

 

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

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

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


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

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

 

 

 

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.

:)

Walking down the aisle… the proudest mommy moment

Sunday, January 6th, 2013

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“The doctor leaned across my bed to break the news. He spelled things out and wrote them down. Every time he asked if we had questions, we didn’t know what to ask. We asked if she would be able to walk. He said he didn’t know. I cried some more.” ~October 4th, 2007

“I have a physically disabled daughter. It still hurts to say that.” ~October 7th, 2007

“We went into Children’s hospital and our physical therapist looked like a teenager. [...] They only had two other children come through with Arthrogryposis and only one could walk. His (the walking kid’s) physical therapist said it was nothing she did either, he just could. It turns out that babies with Arthrogryposis that have the leg joints stiff in a straight, outward way are more able to walk. Of course our baby girl has the wide open legs and hope seems dim.” ~October 10th, 2007

“We had our first orthopedics appointment! We called ahead of time to see if they were closed for the fires. Then we covered the baby, held our breaths, brushed the ash from our car and drove through what looked like Armageddon. What felt like little drops of rain turned out to be tiny bits of ash from unusually dark skies. [...] We were getting casts that day. :) We decided to try and fix the club feet with the casts and stretch out the legs (knees).” ~October 25th, 2007

Charles: “We got Laelia’s casts changed again today. My wife asked the doctor how far the knees could get straightened out. We hadn’t seen a ton of progress, and we were wondering if her legs would be straight enough for her to walk. “Oh,” the doctor replied, “we haven’t been trying to straighten out her knees. Right now I’m thinking that she’ll be wheelchair-bound, so her knees are at about the perfect bend to accommodate that.” ~November 19th, 2007

“There’s no cure for what she has. There’s no way to grow the muscle that she lacks. I can’t even get all her parts looking the way they should let alone moving the way they should. And she’s working toward goals that fall short of even the basic normal functioning of typical kids. Right now we’re focusing on getting her to be “less special.” ~December 20th, 2007

“Okay tonight is when we find out how Laelia’s surgeries went. We will discuss braces or more casting and it will be decided split second without a sit down.. as usual. As for more casting, our physical therapist told us that she will not be able to straighten out Laelia’s legs with stretches or therapy, so we are going to request more casting to hopefully achieve that. Unless our orthopedics doctor has major objections or doesn’t think that will work.” ~January 7th, 2008

“They didn’t cast the legs straight. We were told she wouldn’t walk. Ever.” ~January 10th, 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. 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.” ~February 15th, 2008

“I was curious as to how a doctor’s note could be three pages long. But what I was reading was the doctor’s impressions and findings in detail. I read over, “…significant deformity…significant upper extremity involvement…certainly require surgery…not significant leg power…goals need to be reasonable…I suspect she will come to utilize an electric wheelchair…the need for good upper body strength to control walker was stressed [to parents] (as in she won’t be able to)…toes will require flexor tenotomies at time of posteromedial releases…all of this was discussed in quite frank detail with the family, trying to paint a realistic picture, though not be overly pessimistic.” ~March 16th, 2008

“The EMG showed extremely poor muscle tone. What we had suspected was now proved on a test. The muscles in her arms and legs are in extremely poor shape. I start to wonder once again how her life will be.” ~July 25th, 2008

“Sometimes I forget what normal movement looks like and am amazed at what my friend’s newborns can do that Laelie will never be able to do. She will move, but she will use technology to help. Of course by the same token, there are a lot of things that Laelie will do that none of her new friends will be able to do. Like move a wheelchair with her head.” ~August 18th, 2008

“Everyday during PT (physical therapy) I get discouraged by Lali’s lack of movement. Stupid arthrogryposis! Stupid amyoplasia! If I try to do her exercises she throws a fit and refuses to do much. I try to encourage her to move her arms and legs, but she will just lie there and cry. And I really start to think, Will my baby ever move?” ~September 14th, 2008

“Laelia may never walk. I was sitting on the couch today playing with my baby and it dawned on me that my baby is not looking like she will be able to stand or walk or lift her arms. Her legs never got straight, her muscles never fired up or grew. Her therapists mentioned that she was one of the worst cases as far as muscle atrophy that they had seen.” ~September 21st, 2008

“Even with all the muscle loss, she is able to roll! That makes all the difference in the world! Now I’m hopeful she’ll be able to get around her home as an adult by rolling or scooting.” ~November 21st, 2008

“I saw two callus doctors today, and my experience was not that great. One largely ignored me while smiling. The other thought I was in denial of the severity of my daughter’s condition and took the opportunity to tell me that Lali “has severe joint contractions and muscle loss that will NEVER go away,” and I needed to “deal with that fact instead of searching for new splints or braces.” Do not treat a child like their worth is the sum of their workable body parts. And that their worth of your time is the sum of their fixable body parts (of which you’ve determined my daughter has little).” ~January 30th, 2009

“When checking out at Target the lady at the counter asked me if Lali could walk yet. I just said, “Not yet.”  The lady looked so confused. “Well why not? Have you tried?” ~May 11th, 2009

“We found out at our last trip to the PT that Laelia’s body is still not in the position for standing. That’s what the two major surgeries were for so we’re bummed as you can imagine.” ~November 21st, 2009

“At PT the other day they strapped Lali up to a giant suspension machine and moved her hovering self across the room while she kicked out her little feet to keep them from dragging. She eventually got a rhythm going: right left right left. She looked in the mirror as she went by and exclaimed with so much pride, “Laelia walking!” ~January 28th, 2010

“Laelia can now stand on her knees for ten seconds! This is her biggest accomplishment to date! Doctors said she wouldn’t be able to do this!” ~February 26th, 2010

“[Flew to Seattle to see another orthopedic doctor.] He said she wasn’t a great candidate for this (osteotomy) surgery, and to wait six months to a year to see if we should do anything with her. He said that 90% of kids with amyoplasia were ambulatory (able to transfer and stand), but it wasn’t looking like Laelia was going to be one of those kids.” ~April 3rd, 2010

“Tomorrow we’ll be in Philly and the next morning we’ll have our appointment with Dr. van Bosse at Shriners. [...] I’m also not sure if I’m ready to hear the straight truth from the arthrogryposis expert on my daughter’s care.” ~June 16th, 2010

“Dr. van Bosse is now our orthopedic doctor!” He said my baby will walk! ~June 19th, 2010

~

“Tonight my baby took her first steps. My baby can walk! My baby can walk! My baby can walk!” ~August 31st, 2011

~

Then it just snow-balled…

In September of 2011 Laelia knee walked for the first time. On November 1st, 2011 Laelia used a walker by herself for the first time. On December 3rd, 2011  Laelia stood independently without holding anything for the first time. The very next day she took her first independent steps and crashed into a couch.

 

Linda and Phong became engaged 21 days later and asked Laelia to be their flower girl. The kid was walking with crutches but we had no idea how she would throw the flower petals. It wasn’t until August 2012 that Laelia started to walk independently for long distances without her crutches and was hands-free. We practiced holding a basket while walking. She fell. A lot. We kept practicing. She fell. Rarely.

Last weekend Laelia the flower girl walked down the white runner towards the waiting bridesmaids and groomsmen. She walked with confidence. No walker. No wheelchair. No crutches. No falling or stumbling. She held her basket of petals with one hand and tossed them down the runner with the other. Her movements were like a synchronized dance as each action swayed her balance.

 

 

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Laelia was suppose to walk to a specific place near her grandma, but instead she walked straight to me. (I was matron of honor and standing up front.) She grinned up at me with such pride in her eyes, beaming like the sun! I walked her to where she was suppose to be while whispering my own joy and pride into her ears.

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They said she never would.

She did.

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Thank you God.

*tears*

 

Roland took his first steps! HE IS WALKING!!!

Monday, November 26th, 2012

On November 15th, 2012 Roland took his first steps! I had the worst cold of my life and had lost my voice so all the cheering him on just came out air. :) Click here to see his very first ever steps!!!

And here’s a video of his longest walking stretch that day. He falls at the end, but after the initial fussing he was begging to get up and “wok” again. :) I just wanted to take more medicine and go to bed, but Rolly pleaded for me to do more walking with him. He couldn’t turn since his little make-shift walker lacked caster wheels so after he ran into something he’d whine for me to turn him around.

So proud of himself!

Love his little monkey tushy. :)

For weight we put a bag of quinoa in the seat that we drew a face on and called “Keenwah baby.”

Although he was falling a lot, Roland was taking more and more steps! But then two days before Thanksgiving he got a cast change which left him hurting and miserable. He couldn’t weight-bear, stand or even crawl. Poor guy has to have a new transition every two weeks as his body changes slightly through casting and he has to relearn how to do everything all over again.

Before

After

But check out the progress we’re making! Less than a month left of upper body casts! Look how bendy those arms are!

*Someone* was happier about the trip to the hospital than the other one. She was great and helped Rolly all through the casting process.

Oh and speaking of Laelia, she walked the entire day. I forgot her wheelchair and her walking sticks, but instead of going back for them she begged to walk. She walked from the parking garage to the elevator to the hospital to the casting area to McDonalds and back to the parking garage. (Those who have been to Rady’s know what a huge distance that is!) And she did it all without walking sticks! Just held my hand for some of the rougher terrain. Incredible!

She wanted her hair done up before we left with the bows we won at the auction to bring Igor home from the orphanage. People would compliment her hair and she would say, “And my walking is great too!” :)

Two days after his casting change Roland was feeling much better and started to grab his “walker” and fuss at me to stand him up. Quinoa baby had broken through the material in the toy stroller so we had to make due with a ten pound weight attached to the bars. Eventually he was walking EVEN BETTER than before! Know what helped the most? We got him a walking coach. She works for cookies.

Click here for the video of him learning to walk with Laelia.

Click here for the video of him “racing” Laelia. I no longer hovered as he was no longer falling!

My babies both walk!!!

Take THAT arthrogryposis!