Seattle Children’s For Realsies

(Since this got long,  I went ahead and put all the pertinent information in bold so you less-hardcore Lali fans  could skim through this much easier.)

I don’t really know where to begin. We got back last night from our Washington  trip with Kiersten and Ryan to Seattle Children’s Hospital. We haven’t seen Ryan since he was itty bitty, so it was really neat to see him and Lali be bad influences on each other. :) You know those seagulls from Finding Nemo who say, “Mine mine mine!” Well these two do that way better… constantly! :)

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From the very first, they were being little monkeys in the back seat. It’s so neat to see them play little copy cat games together. Usually little kids leave Lali behind with copy cat games since she can’t lift her arms, but Ryan and Lali can do the same things. And they are so goofy! :) And this is another picture of them playing together throwing blocks off the bed while saying “Hi-ya!”.

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And here’s another picture of dinner that first night after long plane rides.

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Hehe. :) Aren’t they precious? Seattle has some GREAT restaurants and I admit it’s been hard to going back to eating like a real person again. :) And on that happy note, I guess I’ll start with the good stuff.

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Dr. Hall

We met with Dr. Hall and (drum roll)  Laelia clearly has amyoplasia.  I even got to brown nose a bit and mentioned all the side effects of amyoplasia that I’d read about in Dr. Hall’s book that Laelia clearly has (her hair whorl and underdeveloped labia). Then she showed me some things I’d missed from Laelia’s newborn pictures (a bone protrusion in her forehead  hidden under her  bright stork bite, and her face  was asymmetrical for a while after birth). So even though getting that diagnosis should be devastating, in our case it was just confirming what we already knew.   The whole exam took around 40 minutes. Dr. Hall studied pictures of Laelia, then looked her over and also got  her genetic history–it was funny when I was giving her my family history because  she  got every family connection, she even corrected me once when I got confused in my notes. She had practically summed up  by whole large, crazy  family tree using a single sheet of white paper. Hmmm, I think someone should be a geneticist when she grows up. :)

As far as myself or ANYONE in my gene pool (hello family!) having another kid with this condition, the odds are 10,000 to 1!!! This means  that in the future I’m  as guaranteed to have a normal, healthy pregnancy as the next normal, healthy person.  The odds of me having two kids with this would be like winning the lottery twice with the same numbers. In fact Dr. Hall (who was  completely personable)  seemed to be encouraging it:”These kids do well with siblings!” “I’ve overseen over 2000 families with amyoplasia have other unaffected kids!” “You are clear to get pregnant.”  So okay then. Um, not so fast now. Hey!  :)

Then she said seriously, “You need to tell your family that this wasn’t your fault. This has no known cause. You didn’t do anything wrong.  And you can tell them  that the expert said so.”   So since I said I’d put that out there,  there it is. But don’t  worry, family, I defended your awesomeness. :)  I guess lots of her patients have had families or friends  who were too embarrassed to ask the mom if she did something. And really I have felt guilty and wondered if something I did caused this. I got to run several things by Dr. Hall that I thought were awful and could have caused it: I didn’t always take my vitamins because I was sick, I never exercised,  I had  three drinks before I knew I was pregnant although it was on three different days and I was never drunk… oh and I drove over bad, bumpy  roads to get home! Surely one of those things caused this? Nope.   All my parts work and should have produced a typical baby girl, but  instead I got an extraordinary baby girl.  

A  small percentage  of amyoplasia cases show evidence of a vascular accident (something that was mentioned the day after Lali was born), but Laelia doesn’t show any evidence of that. (That would be like the tip of a finger being dead.) It can’t be a virus because they’ve seen it in one twin and not the other. The only other thing they think causes it is somehow  the anterior horn cells (for muscle)  never develop. No reason why. When the researcher,  who was  sitting quietly in the background, mentioned that they were still trying to figure out what caused this, Dr. Hall said, “And you won’t find it!”   Then they grinned at each other. (A bet maybe?) But there you have it. Totally random!

The only bad thing from Dr. Hall’s visit was that she let me know that Laelia would get arthritis in her 20s. I knew arthritis was in her future, but was not aware it was this early. I know people with arthritis, and I’m sad she’ll have to suffer with it for so long.

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Children’s Hospital

It’s an amazing place. It’s set up like a giant aquarium. There are fish everywhere and Laelia LOVES fish! And since Kiersten brought Finding Nemo for the kids, Lali could point out all the “Nemos” in the tanks the next day.

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I decided to buy Laelia an Elmo balloon after she grabbed a tiny  Elmo doll from a low table display in the  gift shop  and it  turned out to be  $16.95. (No, it was not made of gold. Nice guess.) So $3 Elmo balloon it was! She carried that thing to all appointments and it was a general bother. Both her and Ryan yelled “Elmo Elmo Elmo!” whenever it was near. :)

Our experience in this amazing place  was really great, but it’s about to get not so great.

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PT

After a get-together with a few other parents there, I got an escort to our next appointment by a person who turned out to be an OT! And since we had not been able to afford seeing an OT, and I mentioned we didn’t have an appointment with one, she agreed to do a little impromptu visit with Lali right then and there. She mostly just praised the OT I have now and did a little exam. But she was very positive and I appreciated that. Then came time for our meeting with the PT. That wasn’t as positive. Our PT was very nice, but kinda negative. Instead of saying, “Good job Lali!” when she tried to kick using a muscle she didn’t have, the PT instead said, “So she can’t really do that.” And one time she was holding a ball out for Lali and trying to get her to do something with her leg, so of course Lali reaches out for the ball instead of kicking with her leg and the PT seemed frustrated and grabbed the ball away. She also seemed tired. Oh and I brought with me a list of questions to ask her that my PT back home had written out for this very reason, but she only wrote down the questions into her notebook and she never answered any of those questions! Is she going to write out her answers? And when? And who will she send the answers to? She said she needed a consult first.  So… Anyway, this is all looking back on things, because she was perfectly nice, but I have one more gripe. At one point she noticed how Lali said, “help please” when she couldn’t do something and I mentioned that she says that a lot when she wants help. She then said that Lali was giving up too easily  and that “personality determines ability”. What’s that suppose to mean?!

We did get some good ideas after PT. We’re going to get Lali used to the scary water (aka real baths) to prepare her for some possible pool therapy. We’re also going to get a 30 degree wedge to help her sit up herself. And we’re also going to try to get knee immobilizers. So that’s good.

Kiersten and Ryan had an appointment with the same PT the next day, but instead  they got another one last minute. When  Kiersten mentioned how Ryan  had done well on  his knees (and Lali too after hearing about Ryan’s progress), the PT asked where she’d learned to start knee weight bearing. Kiersten mentioned the AMC  Atlas (arthrogryposis book that Dr. Hall edited) and that PT said, “Oh I wrote that article!” Kiersten took a video of all this so I could reap the benefit of her PT appointment. I kept thinking, “Why couldn’t we have gotten  that PT?!”

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Dr. Song

Dr. Song is a bone doctor/surgeon. After looking Lali over he was very optimistic and mentioned doing surgery to her knees to release them and internally rotate them and leave the hips externally rotated to help her stand. I was getting hopeful that there was something else to try, and scared that we were looking for a completely new surgery coming up very soon. He also mentioned knee casting to try to straighten them first. I was ready to do something since stretching hasn’t been gaining range of motion in her lower extremities. In my mind if the casting worked and the surgery moved her in the right position  so she could stand (since she can’t physically stand now), then maybe with leg braces and a walker she may be able to get around the house and achieve independence! Actually looking back I was getting a lot of hopes up. Dr. Song then decided to take a break from our appointment to  confer with  the PT that Laelia had just seen.

He went out to talk with her. When he came back his countenance had changed. His optimism seemed more guarded, his words more politically correct. He said she wasn’t a great candidate for this surgery, and to wait six months to a year to see if we should do anything with her. He then brought up that kids with her personality (asking for help, or giving up easily as the PT had mentioned) didn’t do as well as other kids with go-get-’em attitudes. 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.

When he left the room I asked the blond who stayed behind, “It’s not just me, right?  He did  start out very optimistic about all this surgery stuff and then came back from a meeting with a PT we had seen one time and is now  pessimistic.” She responded in between niceties, “He wasn’t that optimistic in the beginning.”   Okay that was  NOT my impression. She then printed me out a Return to Clinic paper to schedule a follow up (in that six months to a year we’re ignoring her), and I instead used the paper to write out my feelings. I was emotional and in tears, and these feeling are few and far  between nowadays, but I have learned that it’s important to work through them.  And even though my rational self disregards these feelings now, they were nevertheless honest (if a little disjointed), and I think a lot of parents in my position might feel the same way so I’m sharing them here.  So these are my  notes scribbled on the back of a paper minutes after leaving my appointment:

“10% of amyoplasia cases aren’t ambulatory at all and Laelia is one of those cases? I’m feeling depressed.  I look over and Laelia is happily looking at some fish. If only she knew what he said in there about her future.

Sometimes when she’s bratty I worry that she shouldn’t be  because she has to be “pretty on the inside” to make up for this.

I’m having wrong feelings about somehow having more kids to make up for this. I’m having feelings of failure–maybe because I’ve put more energy, patience and work into this one project (raising, caring for Laelia) than anything in my entire life. In fact I get how parents would not feel worth living if their child died. It’s not all about how much you love them–it’s also about how much of your own life you put into them.

I see kids who are worse off than Lali–I think there’s another clinic going on because I’ve seen lots of kids with breathing and feeding tubes–and that makes me feel better. Wow. That’s sick. And I wonder what it is about me that has to compare my child’s (and my own) worth to other people. But this lets me down when I leave the clinic area since out in the real world away from Children’s Hospital most kids are better off than mine. Most. And it’s taken for granted.

This sucks that my faith isn’t stronger. Right now I’d love the reassurance that God has a plan for my daughter and she’ll have a new body one day in Heaven. Something is keeping me from doing that. It feels like false hope.

Her lack of trying… does she get that from me? I didn’t really try at anything long term until I was in college.

I saw the PT’s back as she  walked through the hall after my appointment with Dr. Song. And I felt the urge to run after her and ask “Really?” Or  ask why. Like my kid was applying for a job and didn’t do well on the interview. I wanted to fix it. “

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That’s all I wrote before I started to feel better and didn’t need to journal it anymore. I wiped my tears away and took my daughter on a well-deserved trip around the fish tanks that she’d been begging for. Seattle Children’s even let me borrow a bright yellow taxi car for her to “drive” around while I pushed.

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Sleep

My Laelia is allergic to sleep sometimes and I didn’t get more than a few hours of sleep  that first night.   She cried for a while before going to sleep. Then she woke up in the middle of the night screaming. I tried moving her entire hotel-borrowed crib into the small bathroom at one point just to let other people in the room sleep. It didn’t fit.  At one point someone started banging on the wall. It was probably directed at us. Then finally Lali was so wide awake  that we  both  played quiet games in my bed. I tried really hard for those not to be singing games, but she does those best of all so unfortunately she would belt out a tune and I would cringe and see if she’d woken up the other baby. Then she would look AT ME and say, “Shhh Mama. Baby sleeping!” !!! She fell asleep at 5:33 AM. The hotel alarm clock that no one set  went off about an hour later. At first since it was playing music  I thought it was Kiersten’s cell phone and wondered why she wasn’t turning it off. Then I realized that it was the alarm clock on my side of  the bed, and it was too complicated to turn off. Even though I found my glasses in the darkness and hit every button on that thing I didn’t  do it right  apparently because it went off again nine minutes later! I couldn’t unplug it because the cord was behind the big immovable bed. So I was a bit tired for all our first appointments. Thankfully Kiersten woke us up an hour before our Dr. Hall appointment (because among other things that stupid alarm had the wrong stinkin’ time!) and we only ended up being 15 minutes late after check in.

But the second and third nights were absolutely wonderful.   We had a plan, Lali and I, for her to try to sleep in her crib, but if she woke up in the middle of the night then I would put her in bed with me. So she would go to bed around 10:30 PM and then wake up at 3:30 AM crying. I would grab her and put her in bed with me and instead of playing games she would cuddle up and go right back to sleep! She had not slept with me since she was  six months old! If I had known that would work I would have done it in the first place!  I used to get her when she’d wake up at night and she NEVER could sleep with me around. I tried not to take it personally. But this time Lali snuggled up under my chin, pushing all that crazy hair in my face, and slept like an angel. I fell in love all over again! She’s so precious when she’s asleep. She even does that high pitched sigh in her sleep like I did when I was younger. Besides being a total bed hog, she’s just a dream! And we got a bit more sleep that way.

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Dr. Hanel

The next day (Thursday)  we had an appointment with Dr. Hanel, the upper extremity doctor. It reminded me of my visit with Dr. Hall–it was a joy! Dr. Hanel took to Lali right away. He checked out her arms and shoulders and then said, “Can I tell you something, Laelia?” She looked in his eyes and  nodded her head. And he said, “Don’t you let them ever operate on you pretty girl!” And she said, “Yeah!”   Then he looked at me and told me not to do any surgeries on her upper body. No releases and no muscle transfers; she doesn’t need the release because of her elbow range,  and she’s not a good candidate for the transfer. Muscle transfers were one hope of getting her to maybe lift her own arms one day, but after hearing the down sides, I’m almost convinced it’s not worth the gamble. Especially not with her weak muscles, and the fact that we’re borrowing from Peter to pay Paul (in this case her back or peck muscle that she needs). But we’ll do more research and come back to discuss it in five years or so.  Then Dr. Hanel gave me advice on parenting and teaching Lali words because she was going to be the smartest and prettiest baby in the world. Yep, this was much better than some of my other appointments. :)

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Fun

We went to the Space Needle  Thursday night for  dinner. Lali passed me her french fries by putting them on my plate and then  I’d share my pasta and we’d wink at each other. The view was amazing! And  I think the waitress would have taken Ryan home with her.  It was a fun trip. The next day  we went to the Children’s Museum for ages 0-3 and played until it was time to fly  home.  It was a great trip and I had lots of fun with Kiersten (aka “Gigi”) and Ryan. I have some great memories of little kids chasing each other around, great food (sometimes too spicy for  wimpy me)  and one very funny run-in with Kiersten at 3:00 AM. :)

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Oh and we  ended our trip just like we  started it: being harassed by the TSA over Laelia’s orthotics. We got a sticker out of it. It says, “I was detained for questioning by the TSA for looking suspicious!” No, it doesn’t say that. I asked. They don’t have a sticker like that. :) But, no, really they were very nice to the baby girl because she demands it with her sweet nature. She held out her shoes for them to wipe. They also needed her to turn her palms up, and after I explained that she couldn’t do that (she’s missing the muscles) she announced cheerfully, “I do it!” and held her hands up as far as they’d go which worked just as well to wipe the undersides.  Nothing this little girl can’t do!  

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Honorary TSA

And a special thanks to my husband who posted my April Fools joke while we were away. Love you! :)

6 Responses to “Seattle Children’s For Realsies”

  1. Lynn says:

    You’re the bestest storyteller, and though there are a few details I would change about that one if I could, it sounds like in general you got good information and will continue to rear a beautiful girl–and maybe another someday….? :)

    Here’s looking forward and hoping to see you and her again before years go by!

  2. Tam says:

    well obviously yu dont know that sheer willpower will regrow those muscles! yu are just letting her be all lazy asking for help! snicker. I think that pt was whacked. maybe they all are..(pts) The ones we had at shriners took one look at sophies legs(in contracture) and said no amount of ROM will fix that so dont bother. yeah before any doctor had seen her. We were not thrilled witht he doctor either. But I found a doctor closer to home who is willing to give her a chance and do some noninvasive things like casting or dynamic splinting before sending her to surgery. at least its a start. Im glad you went to Seattle and thanks for sharing all the results. I think its encouraging that 90% of kids with amyoplasia can stand and transfer. and dont count baby girl out yet!(I know you havent) she might surprise you!(yknow, after you stop helping her when she says please because she has no drive…snicker) thanks for sharing. it was helpful for me!

  3. Robin Clark says:

    The trip to Seattle was well worth it, despite the definitely whacked PT. The doctor sounded quite good and besides, you had some great times in the “Emerald City”. I think I’ve heard it called that. We were just there last week to visit Brenton, Linda’s friend from HS days. Great town for food as you said!

  4. lauren B says:

    I agree, you are a great story teller! I really think its a rare and beautiful quality that you can so eloquently express your raw feelings about things. People need transparency like this because it makes them feel sane and I know it helps you to talk (or blog) about them as well. I feel like you could make this blog into a book! I WOULD BUY IT!!! Ha, and not to be pushy…;) but with how amazing Lae is I would do back flips if you were ever going to have another baby! haha. But I will wait *whistling/twiddling thumbs*.

  5. Melissa Rowe says:

    My eyes burn after reading all that, but I’m glad I did. :)

    I’m glad you got some questions answered & had some encouraging meetings. Very awesome. And just keep in mind, the opinions of even some of the doctors that were negative/discouraging are only their opinions – and based on what men only know anyway. Laelia already has broken through barriers on her own! I don’t think asking for help makes her any less strong. God gave her a beautiful heart (already you can see it) and a great personality. :]

  6. Joann S says:

    I loved the pictures and you sharing your heart about what happened-the good, the bad and the ugly (PT–what does she know?). I admire that very much and agree with Lauren: People need to be transparent and that’s the way you are. I thought that was crazy for the PT to make some kind of diagnose based on your very polite and pleasing daughter who says “please help me”. I have read every story that you have written and I think you and Charles do so much for Laelia, you are wonderful parents and she is wonderful too. Later you wrote “They also needed her to turn her palms up, and after I explained that she couldn’t do that (she’s missing the muscles) she announced cheerfully, “I do it!” and held her hands up as far as they’d go which worked just as well to wipe the undersides. Nothing this little girl can’t do! See, she doesn’t give up or give in! neither do her parents! PS: now I know who to blame for that April fools’ joke! yes, you need to write a book —in between everything else you do! Love & hugs, joann

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