Archive for April, 2010

PHILLY!!!

Tuesday, April 27th, 2010

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Tired of Quacks?

:)

Well you’re heading to Philly, Baby!!!

Okay so we haven’t seen any quacks, really. But we have been told some interesting things by “knowledgeable” medical professionals.   :)

Just got off the phone with Shriner’s Hospital in Philadelphia and we have a scheduled appointment with Dr. van Bosse and Dr. Kozin on Friday, June 18th!!! We’re praying we qualify for derotational osteotomies despite Lali being severly hypotonic, but we’re trusting in God to show us what’s best.   I know I don’t know what’s best for Laelia, or what I’m doing half the time. :)   I didn’t even know when to make this appointment, but I had good friends who were “in the know” praying about this and it seems to have worked out perfectly!   This date was the only one available any time soon and my boss gave me the time off without blinking an eye. Plus this is before our summer rush here at work so I won’t be stressed out. Plus this is soon enough to not feel like we’re wasting time, but far enough away to work on Lali’s muscle gain in the mean time. I think this was perfect timing!

So our goal for the next two months is to work extra hard on weight bearing and strengthening Lali’s body in preparation for this visit: more push ups and more standing on her knees and more sit-ups! If anyone can think of ideas on how to make that fun let me know.

Thank you Lord!   And thank you Megan and Chelsea and Lauren for all the time and energy you put into Laelia! She’s really come along and I know she is a lot more willing to do stretches and weigh bearing for you guys. :)   And thank you Dawn, if you read this, since you suggested taking Lali to school where she absolutely bloomed into an articulate little person! And she can tell us what weight bearing she can do and we can encourage her and she understands us! I love her teachers! Also thanks to Tracey and other AMC mommies who helped us find these doctors and get an application in!

Okay now I get to start the fun process of getting flights to Philly. I just emailed (because her voice mail was full) the Midwest Airlines Miracle Miles Program coordinator to see if she can help us. We’ll see.   Either way, we’re going forward! Scary and exciting!

:-D

Supine to Sitting Up!

Friday, April 23rd, 2010

In the last few days we’ve said the words, “Go to your wedge,” more times than I can remember. In fact one time while Laelia was reaching for something she fell over and sniffed, “Lali go to ‘er wedge?” :)  The little girl has figured out we won’t help her up! I love it! And  I love those full sentences she says now!

Then today at work I got a text from Chelsea that Lali went to her wedge to sit up, then sat up right by her wedge  without using it! I wondered if Lali had used the wedge to get her hips in position or if she merely went to that spot and forgot to use it entirely.  So later this evening bound and determined to find out,  I asked her to show Grandma and Peepa this trick (the excuse I use to put a camera in her face) and she did! Here’s what I got:

Front view:

Back view:

She didn’t want to give me any more videos apparently. :-D

SHE CAN SIT UP NOW!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
YAY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
I’M SO EXCITED!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
:-D

Independence!

Friday, April 16th, 2010

Just to mark this spectacular occasion with it’s own post: here is Laelia sitting up by herself (or as we say, “by Laelia’s self”) with no assistance from Mom! And I caught it on video!

This is the first time she’s done it all by herself if you don’t include the one time four and a half months ago when she  sat up using a bean bag chair at Deb and Gary’s when I wasn’t around. Since then do you know how many times a day we get a request for, “Up please!” Well not anymore! :) Now when she wants  to sit up,  she can go to her wedge! :) Hopefully she won’t expect candy every time. :-/

And for those of you keeping up with her sitting up progress, we’ve been doing different versions of the video below for months and months with no success.

I’m so excited for my baby girl! Yay independence! Yay 30 degree wedge! Yay Laelia!

Can we go back and add this to her chart?

Friday, April 16th, 2010

[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!

Laelia “stands”

Friday, April 9th, 2010

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!!!

Bath and the future

Wednesday, April 7th, 2010

I wanted to say thanks  to everyone who wrote us emails and letters and facebook messages! Or to those of you just willing to be a listening ear. (Or to my Deaf friends, a patient eye.) I appreciate my friends and family so so much! It’s been extremely encouraging! Thank you especially  for thinking and  praying for us, and then telling us about it so we knew we were loved! I think God’s been listening. So to reward you all, I have some good news.

I couldn’t take any pictures because I was in there with her, but Laelia had a GREAT bath time tonight! We worked on holding our breath and kicking our legs and floating. Although she’s not thrilled with the water, and did freak out for a minute when she fell forward,  this was the least scared I’ve ever seen her! And that’s saying something since I pretty much threw her infant tub in the hall, filled the big tub with water to her  shoulders and plunked her in there. (She’s only had two real baths in her life–the last one in Seattle–and the water was only an inch deep.) In the water I  noticed that Laelia’s legs are just starting to show that abnormal thinness that I know is coming. I was hoping her baby fat would stick around forever, but there’s no helping the fact that she has amyoplastic limbs. It just reminded me how affected with this she is and how much we need to work on therapy. We know pool therapy is something we want to do–it’s  something that most kids with arthrogryposis do–and  this is one HUGE step toward that! So Yay!

Later that night while cooking  I found  I  didn’t have enough cheese for the broccoli so Charley and Laelia started  singing a familiar Beyonce song during dinner, but with the lyrics, “If you like it then you shoulda melted cheese on it.” :)

I love my family so much!

We also taught  Laelia how to spit after brushing her teeth tonight. Lotta firsts for one little girl! She is really terrible at it though. :)

She has one last trick she did for the first time tonight, but I’m saving it until I can take a good video. Just stay in suspense until then! ;-P

As for the immediate future…

I’ve been researching our next step with Laelia’s condition. I think I may have found a doctor willing to do a surgery to help Lali gain mobility. It means flying to Philadelphia, maybe more than once, and possibly having the surgery done there on sight. And this all may be happening in September. (Although NOTHING is set yet…at all.) Please, if you’re a praying person, pray pray pray! This is just about our last option and there’s so many road blocks already in our way. And believe me I don’t want to do surgery and I especially don’t want to fly to another hospital with my girlie pie, but this may be her best option. We’ll also set up another appointment with our local doctors and surgeon to go over our plans in the coming weeks. My very next step is to  establish email communication with the doctor I want in Philly. Wish me luck! I’m attaching pictures so hopefully he doesn’t have a spam filter! :)        

Wow. I just got another email while I was writing this blog about Shriner’s Hospital  in Philadelphia and their  orthopedic doctor. (Thanks Tracey! You’re amazing!)  Arthrogryposis is a specialty there! They actually have a plan of action for cases like Laelia’s.  Wow!  Thank you Seattle for the ideas and diagnosis! Without going there  we wouldn’t be on this crazy path we’re now on! I hope this works out!

Easter

Tuesday, April 6th, 2010

Laelia firsts on Sunday: Laelia’s first earthquake. Laelia’s first time eating an entire chocolate bunny. Laelia’s first puppet show. Great day!

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Falling asleep but still smiling.

We had a great time with family-level friends for Easter. Once again this year they hid Easter eggs that Laelia could find. Then the guys carried her around waiting for her eyes to light up and for her to yell, “I see it! I  find it!” :)

We went to church Easter morning and the sermon on Philippians 3:8-10 started out, “I consider everything a loss compared to the surpassing greatness of knowing Christ Jesus my Lord, for whose sake I have lost all things. I consider them rubbish, that I may gain Christ.”   And  it was just what I needed to hear for me to even pay attention to the rest of the sermon. I needed to hear that we can cheerfully give up all things (like expectations about crawling, walking or running) for something much better. And I was desperate for the reassurance that this isn’t all there is. And everyone knows how I hate to get “church-y,”  but after hearing the Wednesday before that my daughter was too disabled to treat, I was kinda depressed. And I wondered how much hope I really have in God or the Bible. Or how much God really cares for Lali.  And that’s a  weird and uncomfortable line of thinking  for me to work through–being agnostic half the time as I am. But I decided to trust God with this, and  that doesn’t feel as weird as I thought it would. And I want that experience with/knowledge of  Christ that the passage talks about.

Monday Lali counted to 16!!!!!!!!! She didn’t stop at ten like she usually does, and I was so impressed when she (painfully) pronounced eleven and  twelve! Then she kept going all the way to 16!   Next we’re working on the alphabet!

In other cute news, on Saturday Laelia announced, “Laelia legs broken,” after I said one too many times that she needed to go and get her toy by herself since, and this is where I went  wrong,  “…your legs  aren’t broken!” :)

Monday afternoon we met with Head Start in National City to fill out a long application and take a tour of the facilities. Right now Laelia is in Early Head Start, but next year (September) we’re hoping she’ll start  with Head Start! We still need to do Laelia’s IEP (Individual Education Plan) in June or July to complete the application. I’m already getting some good advice about  doing her IEP. We set goals with the IFSP (Individual Family Service Plan) for younger kids that she has now, and I can tell you that  making goals  is not  my strong point. I either come up with something impossible or way  too easy. Like when she was  only a few months old I had her goal  as standing or walking by age one!  As for easy,  this last time we said we wanted her to do her weight bearing without fussing (to show stamina) for 20 minutes, and she accomplished that very thing later that same day! So what do we do with the rest of the six months? :) So I’ll have to do my homework and think through everything I need for her in a school  day as well as goals for the future that are reasonable. We’re so glad that Head Start is considering Lali, and that they’re willing to  give her equal access to learning and playing.

Well I’m off to do some weight bearing with my daughter. This is part of a new routine with longer amounts of  exercise time  to see what she can do. It’s not easy on anyone. But I’m hoping my husband will volunteer to do this round and let me take a shower. I mean, I did let him win at ping pong on Sunday four times in a row. He so owes me. :)

Swedish Study

Tuesday, April 6th, 2010

lali

Laelia trying to put some weight through her knees while looking at the Seattle rain.

People have asked me what exactly a diagnosis of amyoplasia means. In brief (see I’m capable of brief!!!) amyoplasia (a=no, myo=muscle, plasia=growth) means that Lali has weak muscles. In fact a few of her muscles are so weak they are completely unusable. Amyoplasia is a type of arthrogryposis (joint deformities).

90% of amyoplasia cases can still get around with some help, but 10% are not ambulatory. Ambulation is the ability to walk or stand or get around under your own power. 100% of the doctors we’ve seen tell me that Laelia is most likely (or almost certainly) one of those 10%. I was hoping Seattle doctors would give me different news, but they only confirmed what we’re seeing–that she doesn’t have enough muscle.

Amyoplasia also means there is nothing in our gene pool that caused this and therefore I can have more kids and they won’t have amyoplasia. (By the way, that’s called having kids who are “unaffected,”   NOT having kids who are “normal.”) We found out in Seattle that no accident (vascular or otherwise) caused this either. So nothing I did caused this:   not sleeping wrong or forgetting to take vitamins or driving over bumpy roads or any other deed I can think of.

Thankfully we already were diagnosed with amyoplasia the day after Lali was born, and this recent diagnosis was just for clarification. The only thing we didn’t know when she was diagnosed the first time was how severe this was.

Kiersten shared this study with me which summed up nicely what I’ve been learning about my Laelia’s condition and future with her severe, non-ambulatory amyoplasia.   This is all directly copied and pasted so I hope I don’t get in trouble. :)

(Words in parenthesis are my own thoughts/additions.)

~~~

1. Community ambulators walk with aids in the community and do not need a wheelchair;
2. Household ambulators walk with aids in the household and use a wheel chair in the community;
3. Non-functional ambulators use parallel bars or walkers with support; (what I hoped we’d be able to do, but she is missing arm strength)
4. Non-ambulators do not walk. (what we’re looking at)

In amyoplasia, community ambulators had the best muscle strength, household ambulators had severe contractures in legs but good muscle strength in arms, and non-ambulators had the most severe contractures and muscle weakness (we found out Lali was in the group  at the clinic).

Patients who turned out to be non-ambulators or household ambulators had a larger number of joints involved at birth compared to community ambulators . (Yep.) The combination of lower limb joint contractures and severe muscle weakness is negative for ambulation development.

In non-ambulators, the typical joint positions at birth in lower extremities were flexion, abduction, and external rotation in the hips with knee flexion contractures. (That’s EXACTLY what Lali had/has. You can kinda notice in the picture above.) The most important finding in our study was that muscle strength is more important than joint contractures in the development of motor function.

Early intensive treatment–stretching and splinting–has been found to be especially important in amyoplasia. (Yay! We did something right!) Casting, especially during the first three or four months, should be minimized. (Didn’t know that.) In planning surgery, it is essential to carefully assess muscle bulk and muscle function to make sure the planned intervention does not impair future motor abilities. (Which is why they don’t want to do surgery.)

We conclude that more attention should be paid to development of muscle strength with early stimulation of active movements. (I wish we had been told this very clearly when she was little, and helped with exercises!!! Accc!)

~~~

We’re changing up Laelia’s routines and putting greater emphasis on weight bearing and exercise. No more helping her do things we know she can do, and no more getting things for her even if they’re across the room. I’m hoping this helps. Now it’s a matter of waiting for technology to catch up to us. She has function in her hands, so she needs something to lift her arms up for her. Maybe something attached to her back like a back pack with arm supports? And if you push a button it raises your arms? Is there an engineer in the building? :)

I think having a weekend to absorb the Seattle information helped. We’re dealing. I’m so used to fighting this arthrogryposis beast that I don’t like doing nothing.   No casting, it could atrophy her muscles.   No surgery, it could weaken her muscles.   No muscles, it could let her do stuff. :-/

I’m really sad about her lack of ambulation and her apparent dire prognosis for the future. I don’t know if I should accept this or hold out hope. The later is depressing me more. Maybe if I just accept that things won’t get much better then if something does change I’ll be pleasantly surprised. But at the same time, not having any hope is distressing. So what’s left is just going forward and living life… living life in the scary “we don’t have a plan” way that I dislike so much. :)

I also feel like I’m failing the strong mommy test this week. Mostly I do great at accepting what life brings and celebrating my adorable kiddo. It’s just hard when hope is raised and then taken away.   There’s always next week. Plus Lali doesn’t seem to notice at all. :)

Seattle Children’s For Realsies

Saturday, April 3rd, 2010

(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.

~

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.

~

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.

~

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?!”

~

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.

~

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.

~

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. :)

~

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! :)

Seattle Children’s

Thursday, April 1st, 2010

So we made it through most of our doctor appointments here in Seattle, and five of our six doctors agree that based on genetic testing and physical exams Laelia has a new kind of arthrogryposis that we did not expect. It’s called Rumbustious Type I. This doesn’t mean much since it carries all the same symptoms of amyoplasia (which she also has), but comes with a few minor uncontrollable side effects. Most will be seen later in life–around her teen years, but a lot of the side effects are clearly seen in her currently; I just didn’t know what to look for before.

One  doctor, Dr. Witticism,  asked if Lali  was ever  noisy for no reason or lacking in restraint. I just figured that was every two-year old, but he just shook his head. Exuberantoisterous tendencies (I made him spell that out  for me)  appear first, followed by full blown Rumbustious (type I not type II which is worse). Kids with this condition are more likely to greet strangers in a supermarket and demand attention from them. They’re more likely to throw fits when having to leave fun places (like Lauren’s house). And they’re more likely to imitate every noise their mommy makes–from chewing to yawning to sighing. But if you ever try to get them to repeat this behavior for people’s amusement, they shy up like a mouse in a snake shop.

It was hard to hear everything he said while Lali rocked back and forth singing loudly. This prompted him to ask me if Lali had trouble letting me use the bathroom without  demanding attention, or if she’d eaten one meal without making a mess of some kind.  Apparently my silence was answer enough. “Uh oh,” he said ominously,  “it’s starting.”

Therapy for Rumbustious Type I, also known as “rambunctiousness,” is three fold: 1). Take lots of pictures of the behavior, 2). Give lots of affection and 3). Let the child laugh her head off as you chance her around the room threatening her with the tickling of a lifetime.

It’s okay. Stay strong everyone. I think we’ll beat this thing. :)

Happy April Fools!