Once again Laelia does something she’s never done before! Something we didn’t know if she’d be able to do! Something doctors said wasn’t likely or guaranteed to happen! She’s standing on her knees all by herself!!!
Celebrate with us!
And here’s the video of how she got there all by herself!
She did it!!!
Laelia wanted more candy (aka those gummy vitamins), but Mommy said no. So Lali, being the nice little girl she is, said she wouldn’t ask for them anymore. So *she* didn’t. 
She also blames her invisible, imaginary animals and babies for almost anything that would usually get her in trouble. Me: “Who is that yelling?” Lali: “Mama, it’s my giraffe.” Me: ”Where is he?” Lali: ”He’s… um, over there!” (pointing wildly out the window)
Gotta love her.
Click on this one for the video.
Penny Party!
Pudding Practice
Playin’ Prayin’
Flour Power!
Trouble Double!
Laelia’s knee immobilizers in action!
I get thrilled every time she uses her knee immobilizers! Seeing her “up” makes me feel good. I wonder if a psychologist could explain away all these endorphins that kick in when she moves like a typical kid. I remember crying when I first saw her touch her legs together after her major surgeries. I guess I work hard to accept her the way she is, but my heart still leaps at the thought of her being able to do more with her body.
[Want to see some videos of my daughter doing amazing new things? Scroll down to the bottom of this post! But if you want to build up the suspense, which is way more fun, please continue reading!]
For a quick update on our Philly plans, we submitted our application to Shriners yesterday morning. Now we wait a month to see if we’re accepted. Her doctor will be Dr. van Bosse. He’s emailed me a couple times and seems optimistic. In fact, to quote him, “I’m certainly interested. Am in Peru at the moment [...]. One important point that experience has taught me, even at 4 years old, it can be difficult to figure out who can walk. These kids keep surprising me! Don’t give up hope easily.”
Then after I gave him links to her website with pictures he wrote, “I’m very encouraged by what is see in the pictures [...]. I certainly see every reason for working towards maximizing her potential.”
!!!
He continues, “[...] Unfortunately, Laelia’s treatment will need some planning of the stages, therefore I would have to see her first, independent of any surgery dates, but we will try to limit your back and forth travels as much as possible.”
So now I’m saving up for yet another long trip with my kiddo, and hoping for a side order of derotational osteotomies. We’re thinking that Laelia and I will just take a couple days off work/school for a long weekend. We’re trying to decide if we should do it now or wait the six months other doctors are recommending. Lots to think about. I guess it will mostly depend on when we’re accepted and what we can afford. I’m just hoping Dr. van Bosse is as encouraging and optimistic in person as he is over email! And from all accounts and testimonials, he is!
We had an appointment with Laelia’s pediatric orthopedic surgeon this morning to go over what the Seattle doctor talked to us about. In the waiting room Laelia said, “Look a baby!” The only other kid in the room looked to be four so we asked where the baby was. She responded, “The baby’s over there in the picture.” Whoa. Full sentence, clearly stated and masterfully communicated! Sure enough, behind us was a blown up and framed picture of the doctor we were about to see holding and examining a baby. We hadn’t really noticed it. My kid is SO FREAKIN SMART!!!
At the time of the appointment we had to admit that Laelia couldn’t sit up by herself, even with assistance, or do a lot of other things. This was also written in the Seattle doctor’s letter to me. So I had no idea what what coming later this same day!! (Oh but getting ahead of myself.)
Once again it seemed the doctor had one foot out the door from the moment he entered our room. After the initial greeting and exam, I turned to grab my list of questions off the table and when I turned back I noticed that most of the doctor’s back was to me and he was inching towards the door. That automatically stressed me out and would usually lead to me skipping questions or lumping them together. But this time I just calmly and defiantly wasted his time. We walked out with FOUR prescriptions: wheelchair, knee immobilizers, pool therapy and hippo therapy. Then my husband added, “See if you can get a prescription for a pony!” So when the wonderful surgeon’s fellow returned with more prescription paper I added, “Also Laelia would like a pony.” He responded, “So do I!” Haha! Now where can I find a pharmacy willing to fulfill that order?
I don’t know why these appointments get me so down. The surgeon is always cracking some joke and then lightly scolding me for having no sense of humor. In fact it’s kind of formulaic: he cracks the joke, I put on a small smile, he puts his hand on my shoulder then looks around the room as if to say, “Everybody else thought that was funny, right?” then the other doctors/fellows smile and nod, then I get some small lecture on how I need to relax.
He doesn’t get it.
But at least he’s skilled at what he does get. I mean her feet look great after he got to them. Not perfect, but excellently fixed. (Plantigrade is the word.) I think part of the reason I feel so down after these appointments is that I’m being faced with the harsh realities of her disabilities. Day-to-day life doesn’t bring that up. In fact both her father and I forget she’s disabled most of the time until certain events bring it up. In lots of ways she’s the typical happy-go-lucky kid. Then we go to this kind of doctor’s appointment and realize she’s not so lucky. And often we’re given a rough pessimistic guess of how she’ll be in the future from a doctor who probably couldn’t recognize her face in a picture line up the next day. (Well that probably isn’t true. They do know who she is. In fact one of the doctor’s fellows rode with us in the elevator and out of nowhere she said, “Oh this is Laelia!” I didn’t really recognize her right away (we’ve seen this doctor only a few times), but she was one of the doctors who observes Lali’s appointments. So because she’s such a rare case, maybe Lali is popular after all. :))
I felt pretty down afterwards. I found myself praying she would prove them all wrong in the six months they’ve given her to magically build enough muscle so they can operate. Dear Lord please!
But I haven’t gotten to the amazing part yet!
An orthopedic wedge costs around $250 depending on what you get. I found a 30 degree orthopedic bed wedge for adults (different use, same idea) for $60 so I ordered it. The Seattle PT recommended a 45 degree wedge, but I just couldn’t find one that was cheaper than $200 so I went with the 30 degrees which is much more difficult to use. The Seattle PT expressed some doubt that she could sit up with just 30 degrees, but Lali doesn’t need to do a straight sit up; she can use her arms.
Laelia sat up by herself (using her wedge) for the first time I’ve ever seen! And the best part: I got it on camera!!!
Laelia also can now do a push up and lift her pelvis so that her weight is more on one knee!!!
So needless to say I’m no longer feeling down from my morning appointment. I’m blessed! I’m thrilled! I’m drowning in answered prayer! I’m singing songs and dancing! I realize I’ve been trying to ”fix things” and I’ve had to let go and realize I can’t fix this. I can do exercises that help her, sure, but I can’t make her not hypotonic anymore. But my God is so big, so strong and so mighty, there’s nothing my God cannot do!
Tomorrow is my birthday, but I got my present early!!!!!!!!!!!!
Laelia can now knee stand in my lap without assistance for three to five seconds!!! Best. Present. Ever.
Thank you!!!
I wrote this last week for a mom who has a six-month old with the same condition as Laelia. She was worried that because her child barely moved her arms, that this would mean a future of having to do everything for her daughter–brushing her teeth, helping her go potty, everything. After writing this I decided to share an edited version (the Laelia section) of it with everyone. So if your child has arthrogryposis or amyoplasia and you’re worried they’ll never do anything with their arms, then be encouraged! These kids are rock stars!
~~~
My daughter was born with barely any arm muscle too. We did (and still do) daily stretches and weight bearing and activities to get her to move her arms, but it just didn’t seem to help her move. We found out later that she was born without biceps too. And I was so worried when she was six months old that I’d be doing everything for her. I mean, she barely EVER moved. If we saw a flinch we got excited. Well here I’ll show you; just copy and past the following links to see.
Laelia 3 months-6 months
http://www.youtube.com/watch?v=5qNMkk4iQ6c&NR=1 <– Laelia couldn’t move her arms either
http://www.youtube.com/watch?v=i50exmwoxCI <–first time she ever significantly lifted her right arm
http://www.youtube.com/watch?v=X-Xtw2EjcbE <–her left
http://www.youtube.com/watch?v=-wRlZmYWIdI <–first time she ever moved her right arm at all
http://www.youtube.com/watch?v=LFSJiR5oZs8 <–first time she ever moved her right shoulder to reach
http://www.youtube.com/watch?v=vRjE5EAvXHA <–her left
http://www.youtube.com/watch?v=ulXMBpGcmSQ <–reaching across her chest with her right arm
Okay these videos look downright depressing, right? Look familiar at all? And you can see just how little she moved. But these kids adapt.
1 year later
http://www.youtube.com/watch?v=rGAJPO6QMcA <–Lali lifts both arms her own way
http://www.youtube.com/watch?v=ZYNwHp2q … re=related <–first time she ever feeds herself
http://www.youtube.com/watch?v=KuMxDjz5 … re=related <–turning pages of her toy
http://www.youtube.com/watch?v=HqkzCTPxdA0&NR=1 <–yeah, my kid can play ball 
http://www.youtube.com/watch?v=OEHhlUTbSqA <–I invented this and now she can reach things at eye level
http://www.youtube.com/watch?v=Cn0zSvoTr_U <–this video doesn’t show that she got her own arm up on the table too
Laelia at 2 years old
http://www.youtube.com/watch?v=ykztWbAlpfw <–working a caster cart (the poor man’s wheelchair)
http://www.youtube.com/watch?v=C2iuECF2 … re=related <–driving a car!!!
Laelia can now stand on her knees!!!
This is her biggest accomplishment to date! Doctors said she wouldn’t be able to do this! (Some said it straight out and others had it in a list of things she likely wouldn’t do.) We only recently started weight bearing on her knees, and now she can do it! For about ten second straight! She’s our miracle! But that’s not all she can do.
Laelia “standing” and saying to the mirror, “I do it!”
Even though she’s not weight bearing as she goes, she knows instinctively to lift one leg and then the other!
And lastly, Lali feeding herself!!! Yay? Um… :-/
