WE HAVE FLIGHTS TO PHILLY!!!!!!!! THANK YOU MERCY MEDICAL AIRLIFT!!!

We’ll be taking off for the airport at 4:30 in the morning on the 17th and arriving home from our trip close to midnight on the 18th.  Now I just have to figure out how to entertain a bad, cranky flyer for two straight days of flying across country.  And maybe entertain Laelia too.

Today I’m working out a place to stay–a much easier task now that we’re certain we’re going.  And I have to figure out how little me is going to lug around a baby who doesn’t walk (or stand so you can’t always put her down), our giant book of medical records, our personal stuff and a car seat! We’ll probably need a rental car.  And we (and by “we” I mean YOU CHARLEY ) still need to fill out all that paperwork that Shriners mailed us.  And we’ll maybe borrow a portable DVD player and Elmo DVDs. And pack. And write out questions. And and and…  And I hope you’re reading the excitement in my voice/words at the prospect of these tasks. It’s an exciting time!

Well, exciting and scary. Now we see what the expert says. This is our last hope in a lot of ways. Our Obi Wan. I’m nervous about it, and burying myself in the planning stages lets me avoid thinking about it.  I start to wonder if those other doctors are right–that Laelia is the worst of the worst when it comes to her muscle weakness and won’t be able to move around much on her own.  :-/

I don’t *need* an ambulatory daughter (despite what Disneyland rides that limits her to), but I do *need* hope that maybe one day she’ll be ambulatory. If that makes any sense. I think I’m okay now with Laelia’s disabilities because she’s still young, and I’m nowhere near done fighting for her. I guess I just pray that I don’t come away from this exhausting two days a depressed mess.

And it’s funny to actually be hoping for giant, major surgeries across the country. Ones that don’t come with a 100% guarantee.  If it was me I’d want to be made straight and take that chance, however slim, at walking. But it’s not me; it’s someone much more precious. And there’s a risk that, because of the  severity of the joint contractures in her hips and knees, we end up surgically getting her in a position to stand (because she physically can’t do it now) then find out she won’t be walking or standing because of muscle loss. (And surgeries also diminish her muscle strength!) So you can imagine how heartbreaking it would be to go forward in hope, then end up with a straight, scarred, non-ambulatory baby girl who now has the added disadvantage of being stuck in a “bad” position for comfortable wheelchair sitting.   Because with arthrogryposis you are stuck in one position with limited range of motion, like a flimsy cloth doll with joints made of metal. So you pick: standing or sitting, legs bent or legs straight. Then you cut and solder back together as necessary and hope it stands up under it’s own weight.

So what to pick?  Dear God, help!

I think we’ll mostly rely on Dr. van Bosse’s extensive experience with arthrogryposis cases.  We only get something like 45 minutes with him, so I pray he sees what he needs to see and has the wisdom to know what to do. And if we get an answer that depresses me, I’ll trust that to be our best advice for now and determine to have peace about it.

Or forget Obi Wan, I’ll go find Luke.

Can’t canoe to Philly…

Can’t push my (nom nom) caster cart to Philly…

Can’t scoot down the street to Philly…

Wish I could just ride Daddy’s shoulders to Philly…

Guess I gotsta fly there!

Our journey to work out a flight to Shriners Hospital for Children in Philadelphia got pretty complicated.  We still don’t have one, but we’re closer every day.  (And I repeat that every day.)  I kept thinking June 18th was so far away and now I’m worried it’s too soon and we don’t have flights set up! (I’m a worrier and a planner, so waiting doesn’t suite me… a fact I have semi-patiently explained to God multiple times. )  We can afford to fly out ourselves. Thankfully. Our wallets would say “ouch,” but we could do it. The only problem is that we can’t keep doing it.  If it was just one flight that would be different, but since it’s looking like a back and forth, multiple trip experience (hopefully if we qualify for surgeries),  it would break our bank long term.  That’s why we’re trying to work out transport through an organization who works with people like us.  Thankfully we live in a day and age where having a disabled child who needs care across the country doesn’t automatically mean you’ll go broke.  I found out that we qualify for a LOT of programs (that will cover Lali and sometimes one parent), but getting one set up has become difficult.

Midwest Airlines Miracle Miles Program was looking like our best bet, but they don’t have anything in San Diego yet.  My contact there is really nice and explained that they were in the midst of integrating both Midwest and Frontier Airlines and the process will take them probably toward the end of summer to complete.  So she said she’d keep my information for the future, but there wasn’t really anything they could do.

Southwest stopped doing medical flights and instead starting donating tickets directly to hospitals. Shriners is one of those hospitals, but I can’t get a single person who knows about it.  Apparently (and maybe this only applies to the Shriners in Philly), they used to have a transportation department, but because of budget cuts it’s gone.

My local Shriners in San Diego called me and explained that they pay out $11,000 a month to take kids back and forth to L.A. and Sacramento, but they don’t fly out to hospitals.  Of course after understanding my daughter has arthrogryposis (and Philly has the arthrogryposis specialty), he said he would be willing to try and stretch their budget to do a once-in-a-lifetime flight if we couldn’t possibly work it out any other way, but it would be hard on them.  (They’re already doing so much I’d hate to take him up on it. He mailed me his card and I’ll hang onto it for now.)

American Airlines never got back to me at all. Had friends try too. Nothing. They’re suppose to have twice-in-a-lifetime flights. Left a couple messages.

Northwest seems to require poverty for charity. Understandable.

Then I registered online with National Patient Travel Center. A representative called me back after a short processing time to get all my information and my daughter’s medical information.  (So far NO ONE has ever heard of her condition so it takes a while to explain.)  Then they sent me to Mercy Medical Airlift who required my employer and Laelia’s doctor to fill out forms and fax them back. That’s now done and I got a call from my contact there to wait “a while” to see if we get a flight. I asked if it would be a few weeks or a few days, and she couldn’t tell me anything, but implied a couple weeks was not abnormal.

Now we wait.

And wait.

In the meantime Continental CAREFORCE got back to me. They require faxing copies of the appointments that we didn’t have at the time, so I put them off.  But now we obviously have them. (I thought this would be taken care of a lot sooner.) My contact there (who is really nice) said that since I was working this out with another organization, to keep her direct number on hand in case MMA couldn’t help us.  Only problem is that we’re not medically sensitive (requiring a flight for a heart transplant) nor do we want to take a flight that should go to a medically sensitive patient. So we wait.

And wait.

But worst case senario is that we pay for a flight last second out of our “Laelia fund” and it’s really expensive.  We’ve been blessed and provided for over and over again and this will be no exception.

What I think about more than any of the logistics is how lucky we are to have wonderful supporting friends (and strangers) that have led us to this hospital and this doctor who may help our daughter with this severe diagnosis.  (Please please please.)  Even if I have to hitch-hike to Philly, as long as this doctor can help us (please please), then it will have been worth it.

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!

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!

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

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.

(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!

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!”.

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

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.

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. “

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.

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! 

Honorary TSA

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

For those of you who joined me in praying that Laelia would sit up (unassisted) before the New Year, you’ve probably already read my New Years Eve Eve (Dec. 30th) post and accompanying videos of how far away that goal is. What you missed were the hours of practice, the weights we bought to strap to her leg to give her leverage, and the tears as I had to give up the idea that Lali was going to do it by my time limit, if at all. New Years Eve we went camping and left Lali with Grandma Deb to get spoiled rotten. Unfortunately I got a stomach bug and we had to cut camping short and come back New Years Day. After Charley dropped me off at home, he went to retrieve Lali from Escondido. About an hour and a half later he was back and Lali was back in my arms. (Her hair looking so much better than how we sent her, thank you Kathy. )

Charley sat at the foot of the couch where I was sprawled out clutching my stomach. He had tears in his eyes and I started to think, Uh oh, what happened? But I could tell he was processing it as he said, “God answered your prayer.”

Apparently (and if they had known this was a big deal at the time they would have taken a video or something) she sat up using the help of a block-shaped bean bag chair. And when Charley (who didn’t at first realize what they were saying) started to ask a few more questions about it, it turns out it happened New Years Eve–before New Years Day like I had specifically been praying about!

So, you know, cool!

I often don’t have a lot of faith. And I lose the faith I do have if it’s not on my time schedule. But my resolution this year is to have more faith. And let God do what he wants to do in my angel’s life on his own time schedule. It’s hard because that seems SO slow to me. She can’t crawl or stand or kneel or walk, etc. and she’s two years and three months old already. Her physical disabilities seem worse than they are in other kids with her condition too. (Not the arthrogryposis, but the muscle loss.)  But I trust that God will continue to make himself look good by answering our prayers on Lali’s behalf. Thanks for throwing me a bone here, God.

Oh yes, you shaped me first inside, then out;
      you formed me in my mother’s womb.
   I thank you, High God—you’re breathtaking!
      Body and soul, I am marvelously made!
      I worship in adoration—what a creation!
   You know me inside and out,
      you know every bone in my body;
   You know exactly how I was made, bit by bit,
      how I was sculpted from nothing into something.
   Like an open book, you watched me grow from conception to birth;
      all the stages of my life were spread out before you,
   The days of my life all prepared
      before I’d even lived one day.

Day two.

This is something a stranger told me this morning while talking about the movie Juno. They probably didn’t get  my reaction to it since I started to tear up. Oops.

I Googled it and it’s a Davidic poem from Psalm 139:13-16, or at least an interpretation of the Hebrew poem by The Message. I knew it by a different interpretation, but I like this one better. I don’t think it’s suppose to be sad, but it seems sad right now. Still beautiful. And hopeful in some ways, but heartbreaking in others. Heartbreaking when applied to my daughter, since every bone formed in her body didn’t form the way I wanted. And now she’s in pain. But she is still most definitely, without a doubt, marvelously made! I love her so much!

Laelia and the Heater

Bleckidy bleck week. That’s all I have to say. Here’s the breakdown: 

Sunday: Found out my Uncle Ray had passed away.

Monday: Baby’s accident. And the sell of the Union Tribune (Charley’s job) goes through.

Tuesday: Late to work because had to make sure baby was not concussed. Hard day for baby at OT.

Wednesday: Crazy lady at Target. Laelia’s splint doesn’t work right. OT on vacation.

Thursday: We fear for Charley’s job. Massive lay offs at the UT.

Friday: Charley’s job (and subsequently Laelia’s insurance) are safe for now. We decide we can’t fly up for the funeral.

Saturday: Family emergency pops up here in San Diego. Family comes to us.

Sunday: Mother’s Day. Remembered Mom. Hard day.

Today Monday: My work gave me a bereavement day. Family comes over.  I finally get to blog. (So sorry it’s gonna be long.)  

It’s been a hard week. I have really been missing my mom a lot recently. Of course I keep telling myself that she’s having a better Mother’s Day than everyone else, but still, I wish she were here. She died two days after Mother’s Day back on May 15, 2001. Mother’s Day is always hard for me. Mom’s brother, Ray, died Sunday. That was hard on my family. Charlotte, Linda and Bud are the three surviving family members of my mom’s nuclear family (parents and siblings). So no wonder this time of year would have me thinking of family. And I hate thinking of how my family is getting whittled down to nothing. So by the time Laelia is my age, how many of the people who really made an impact in my life will be in her’s?  

Then there was baby’s accident. It involved my genius idea to put a ceramic bowl filled with drying flower petals on top of the heater so the cats couldn’t get to them. Then Laelia with her new mobility shows up and kicks the heater (which makes a cool reverberating noise), and that bowl drops down and shatters on her face.

As you can see from the picture above, it fell a long ways. It happened before Charley left for work, but this was the same day that the UT was sold. Not that coming in late would make a bad impression on the new owners, but we just didn’t know. So I left work and rushed home to take her to the doctor. She was bleeding out her mouth and facial bruising was starting. I didn’t know exactly where she was hit or how bad it was so I was relived when the doctor told me it was fine. How scary! It was only the inside of her lip that was cut which caused the bleeding (that didn’t require stitches), and even though it hit her face pretty hard, it missed her eye! (Came REALLY close though!) And it looks like it didn’t hit her head, although we still had to watch her for signs of a concussion. (Which kept us all up all night.) The rim of the bowl left a mark that went from under her eye, to right down her lips all the way to her chin.

Now she is doing a lot better and the bruises are almost totally gone. It’s only when I feed her something salty or try to brush her teeth that I remember she’s hurt. And she let’s me hear about it too!

Then the next day we have to go to OT (occupational therapy) and I have to hear, “What happened?” from everyone we meet. :-/ Not fun. What else was not fun was that it was a crazy appointment because our OT was leaving on vacation, and since she’s the best, all us parents freaked and got last minute appointments. So it was very stressful. We only got one splint made, but it doesn’t work to wear at night (because it cuts off too much circulation) so we have to wait until Jill gets back from vacation to start using it (and of course she still has to make one for the right hand.) We learned that Laelia’s hands are tending to drift (little finger leads her hand to the side) so we added a new stretch that pretty much just holds her hand straight while we move the thumb to the side to straighten out the hand. Turns out it’s doing this on both hands because she’s missing the little muscles in her forearms that would keep them straight. More muscle loss?! How much muscle can this kid be missing?!

Then the next day is my funny Target story. When checking out, 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? Try right now and see if she’ll do it!” Of course I have this internal discussion on the merits of explaining arthrogryposis to a stranger verses dropping my kid to the floor. But the next thing I know, to the floor she goes! I let her down feet first so she of course slides to her tush and starts exploring the dirty floor. “See, she’s not ready yet.” I say and then pack my bags. The lady was mumbling something about me never letting her try because I hold her all the time, or some such lecture, but then let it drop.

Thursday began the most stressful part of our week. We thought Charley had lost his job, but thankfully that’s not the way it turned out. Still, for half a morning we were sure Laelia would not be able to go to therapy anymore and we would have no place to live. Or at least that’s what I was thinking in a panic. 

Then we had an entirely different issue down here that my family has had to deal with. Two of my family members came down which was nice since we couldn’t go up to the funeral, but the circumstances surrounding their visit are of course not good. I just learned a little more about it today, and am keeping them in my prayers.    

Well now that I’ve vented about my no good, very bad week, I remember how my mom would always make me “count my blessings” if ever I complained too much. So here goes:

-We signed up for a CF walk to support the Cystic Fibrosis foundation. It’s happening May 16th. We’re taking Lali in the stroller. To donate to my team click here. We’re on the team Emma’s Angels. Emma’s mom was very supportive and comforting to me when Laelia was first diagnosed. Even though Emma’s condition is very different from Laelia’s condition (we even go to different floors of Children’s Hospital), it’s amazing how similar our struggles are!

-Got to be with friends and family this week.

-Laelia is more mobile than ever before.

-Charley still has a job!!!!!!!!!!!!

-My job has been flexible.

-Charley gave me an hour massage when I was feeling down. Just because! Then I used the gift certificate that the president of my company gave me for another hour massage, only a professional one this time. But I still liked Charley’s better. :)

-And best of all (because I’m weird like that) my cousin Charilyn and Charley and I got everything done on my housework to-do list!  Hey, that stuff makes me happy.

~~~

There, happy Mom?!

How to make: Cut a plastic hanger to correct length then duct tape a Velcro strap (or modified thumb splint as seen above) to hanger at a slight angle. Tie to screaming child’s wrist until she calms down enough to learn to use it. Enjoy!

I took a couple quick videos while Chelsea was over. This is the first time Laelia had ever worn these and look how good she does!

Laelia is able to play with toys at eye level!

Laelia can pick up a toy and then bring it to eye level! 

Ideally I am hoping she can use her shoulders to plant the sticks in the carpet then lean back a little to bring her hands up! (It doesn’t really work on hardwood floors since it slides around… but maybe if I add puddy to the ends…)  She definitely shows the potential to plant and lift in the second video. Although she had only been wearing them for a couple of minutes, she still figured it out pretty quick. She could even maybe feed herself using these!

I got this idea at the Fellowship of San Diego on Sunday. Charley and I were on nursery duty hanging out with the toys and toddlers. We left Laelia playing by herself with a long plastic toy filled with beads while we wrestled the other kids.. I mean, “lovingly cared for them.”  And since Laelia is not generally one of our adorable troublemakers, we ignored her for the most part. So it was a suprise to glance over a little while later and see her holding her toy upright! With her hand at eye level! Then just when I was about to beat myself up over not bringing my camera, David Powell pulled out his cell phone and took this.  

Let’s just mention that before stretch therapy she was not able to lift her arm that high in the first place! And without biceps, this is not something I imagined she could do! But it all makes sense. She used her leg to anchor the bottom and then just reached out and used her body to bring the toy upright. Then she watched in awe as all the little beads swirled around to the bottom. My child the genius!

So I ran around the house when we got home looking for other long toys. Then I thought of the Muppets and how Kermit’s arms were held up by stiff wires. Then I thought, What if I can get some sticks or something so she can use the same motion with the toy to get her arms up in the air anytime she wants, but use something as thin as wire so it doesn’t get in the way! I thought of using drum sticks, but they were too heavy. We planned to go to Michael’s (you know the craft store) but they were closed early on Sunday. I actually got kinda panicked about it, like if I didn’t make this thing in my head RIGHT NOW it would disappear forever. Then I actually prayed that God would help me. The very next cabinet I opened a hanger fell out! It was the perfect weight and length and everything! I don’t know when I had shoved a hanger in that cabinet, but it fell into my hands right after I asked for it!

So even if she doesn’t master these contraptions, it was still a cool idea. And it’s nice to feel like God cares about the little things. And it’s exciting to see her hands up in front of her eyes!

So now what to call them. Arthrogryposis Helpers? Amyoplasia Applications? Biceps Shmiceps? Um, Kermit Arms? Laelia Limb Lifters? I could go on, but I’ll spare you all.