Laelia Sky

First night in a big girl bed!

But she looks so little in it!

Lali is beaming at the camera while daddy tucks her in.

My little girl is sleeping in a real bed tonight with a pillow and sheets! *sniff*  Her first real bed! And she is completely dwarfed by it! :) 

We had to take out the box spring to make it low enough to the ground to be safe, but this hilariously meant that every time Charley or I sat on the edge of her bed we created a small sinkhole that Lali would slowly be pulled into.  

We also had to leave off her Dennis-Brown bar (that connects her AFOs) since I didn’t want her to attempt to scoot off the bed in the morning and get stuck.  In my head she sleeps all night tonight like a good girl, and then instead of yelling her usual, “I’m awake! Come get me!” in the morning, she instead decides it would be more fun to scoot off her bed and go to her bookshelf and let her parents sleep in! 

But if at midnight I have to pull that child out of her closet then she’ll be in so much trouble! 

Laelia is a big girl now. *sniff* And she needs a big girl bed. *sniff sniff* The crib would have lasted many more years (in fact I could probably fit a teenager into that thing and don’t temp me!), but I wanted her to feel a sense of independence and growing up. She hit some major accomplishments this last year that has allowed us to even consider a big girl bed: successfully sliding off the couch, scooting around on her bottom and sitting up from a lying down position all by herself.

And it’s not like we had to go out and buy a bed; we had one already–Mama just had to put her in it! 

*sob* My baby! *sob* :)

Part of the reason I put it off for so long was due to my loathing for all things “growing up”: from normal things like potty-training or (the pressure to start) walking to emotionally-crazy things like becoming one year closer to leaving Mommy.   The other part  of the problem was that I wanted to be there when she woke up for the first time in her new bed. With our staggered schedule, I leave for work before the sun rises, let alone the child, while Charley is there for Lali in the mornings yet gets home really late. So the switch had to take place on a weekend.

*Side note: Once school starts at the end of the month, we’ll have more time all together as a family!

Tonight I asked her if she wanted to sleep in a real bed. She responded enthusiastically, but that was probably because she thought this new arrangement would somehow put off her bedtime–as any last minute, evening plan does. But she went down without a fuss and grinned for the camera as I documented the moment.

Now if only I could use this gift of big girl bedtime accouterments in exchange for bribing her into staying two years old forever… hmmm…  

Grady

So a while back I posted a blog about this great little boy who needed a family. He is on my heart a lot. In fact we briefly looked into adopting him. That’s affordable and easy, right?  Um, no.

The other day when I found out that a family was interested in adopting him I cried my eyes out. Part of it was beautiful relief since not being able to bring him home myself left me racked with guilt. But another part of me was sad because he wasn’t mine.

I used to think that people were dumb to fall in love with a picture on a website. But that’s what I did. We had just been given some bad information about our chances of having another child with disabilities. I had signed up on different adoption websites just as a way of coping with the news. I found Grady when I wasn’t looking for more than just information. I stopped and scrolled back up because he looked just like my daughter!  Then seeing he had arthrogryposis was like some sign from above that I would care for him, or at least care about him. I had already picked out all his doctors, therapists (OT and PT) his surgeon and had a game plan for his legs before we requested more information on him. But when it came down to it, all we could do was give a few dollars to his fund. He wasn’t coming home with us.

But reading about his new family is a comfort. His mom is even originally from Southern California! They already have a daughter too. They sound absolutely wonderful!

Here’s their story from Reece’s Rainbow’s website.

Here’s the family’s blog with a new picture of Grady looking adorable.

This family is in their first steps of the process and need support! Please consider donating toward the cost of their adoption by going here. Every little bit helps!

I really hope one day Laelia and Grady meet and become friends. I hope to see this family at the annual AMC convention or connect with them on amcsupport.org.  Laelia already loves Grady and his pictures online so it would be an easy friendship.

It reads: “Hi! My name is Laelia! ‘LAY-Lee-Uh’ I have a disability called arthrogryposis. It means my joints are stuck. I also don’t have the muscle to walk or lift my arms. But I’m smart! So please include me in conversations!”

Having Laelia hand these to people has been so great!  It provides an instant explanation of her disabilities without me having to explain to yet another person about arthrogryposis, but it also opens up an instant, informed dialog. It has helped people who have never dealt with disabilities avoid saying things like, “What happened to your daughter?” or “Why can’t the little girl lift her arms?” that us moms HATE responding to constantly. (The zoo and grocery store hold the biggest offenders!) It also clearly states that I want my daughter included in conversations. A lot of people ask me “harmless” things in front of Laelia about Laelia. But not after they read the card!

Another mom (the one who started the AMC support group) told me that business cards would smooth over first time meetings with people. I thought it was a cute idea, but I never thought I’d go through so many of these things! I had 250 cards made for free online (cost me $5.99 for shipping) and already I have handed them to strangers, gym childcare staff, people who work within special needs communities but have never heard of arthrogryposis, and in November I’m handing them to airline employees! 

Actually the business card suggestion was made after I shared our not-so-great experience with a flight attendant during our first trip to Shriners to get Laelia evaluated for surgery. This head flight attendant with Continental, Cindy, demanded that my daughter stand instead of sit while waiting for the bathroom at the rear of the plane. At first I geared up for a teaching moment (which happens way more often than I would like in the real world), but she got so mean so quickly (telling me that allowing my daughter to sit on the dirty floor was awful, and otherwise demeaning my parenting) that I was choked up with tears before I could blurt out the painful truth of our situation. I tried to tell her that this was how Lali “stands” because she’s different, but before I got the full sentence out I was shot a look that was incredulous and outright mocking, then I was bluntly ordered to pick up my child NOW. And that was when Laelia began to cry. I overheard that awful woman talking about us as we were back in our seats (a mere few rows from the back, row 34 of 37). Her fellow employee had to explain to her why the little girl didn’t stand.  The woman became even more incredulous and said we should have sat in a different seat then.

When I’m emotional (angry, sad, hurting etc.) I can’t educate. When I can’t educate then hard-headed people can take advantage of us, and hurt my daughter’s feelings.

So this card was made with Cindy in mind. But thankfully it’s been used effectively to avoid Cindy-type situations.

So last night Laelia was sitting by her puzzles when she begged, “Mama hold me!” I was busy on the computer so asked her to scoot over closer to me (several feet) so I could reach her. This led to her asking, “Daddy carry me to Mama!” Cute. We assumed she was being really lazy. She just fussed and fussed about moving. Finally she got close enough for me to pick up. Unfortunately she had a garden gnome in her hands (that she calls her “man”) that she randomly plays with sometimes even though it’s heavy. Well she was in my lap and dropped that thing right onto my toe. I jumped around a bit since it hurt, and it made her cry louder. She’s a sensitive little thing so I assumed she was spooked that she’d hurt Mama. But that’s when her leg/hip pain was getting really bad. Picking her up had her arching her back in pain. I took off her pants and looked everywhere for a bruise or cut, but saw nothing. She barely touched dinner and was up until midnight in ouchy pain.

We think it *might* be transient synovitis (irritable hip) since she’s had it once before and it went away a week later.

She had this back in October of 2008.

It happened while I was in Washington DC.

Thankfully my dad and Grandma Christina were there to help Charley take care of Lali. Also we did x-rays and nothing was broken, but doctors couldn’t be sure that some small break hadn’t happened that they couldn’t see in a child that small.

I hate seeing her in pain. I know that surgery will be 100 times worse, but that ouchy face makes me wanna cry. I hope this goes away faster than last time, and she is back to her old self soon.

Poor baby.

Disabled!!! (*point point point*)

Pegged. You got us. Ten points for observation.

But think about this: You had a conversation with a two-year old who speaks in full sentences using mostly correct grammar. She was bright and social and friendly.

Come on, admit it; you wish she was your kid. (I mean, how many times do I have to pull her out of other people’s grocery carts and remind them she’s MINE!)

So I beg you, seriously now, please see my little girl for more than her physical disabilities. Or if you can’t help yourself, don’t bring it up all the time with me! It’s the least you can do! That’s what spouses and friends are for. Talk to them!

I’m not denying she’s disabled; I just don’t utterly and completely define her by that alone.

Yeah about that last sentence: It’s the whole point!

Which reminds me of why Laelia’s IEP was so hard for me. I had to face the fact that Laelia isn’t dressing herself, using the potty, walking to recess… But I was so thankful that her IEP was with people who are wonderful, and saw Laelia the Child, not just Laelia the Liability. I’m not guaranteed to have people as wonderful for Laelia’s entire school career.

In IEP-related news, Laelia will be starting a wonderful preschool on September 20th! She’s super excited and asked to start this Monday. She’ll be a student, NOT a “disabled student,” and I expect her to fit in gloriously well. One of her friends will be attending the same school, and they may be in the same class. She’s been talking about him ever since she found out. God help the boy–Laelia is a veritable (verbally verbose) friend. Just like her… um, *daddy* (cough).

We had our enrollment appointment for preschool yesterday, and everything went very well. I have a feeling that the principal is nervous about having Laelia there, but other than that feeling, everyone was really great. Laelia even walked out the door with a borrowed book about gravity. She has until September to pronounce the word “gravity,” and give it as an answer to the question, “Why don’t things fall up?” Right now if you ask that question she replies by making crashing noises and falling over.

So Laelia starts school next month, turns three-years old the following month, and has major surgery the month after that. And, really, the first two things on that list scare me almost as much as the third–and those are the “normal” things!

Actually I’d love for someone to explain to me why I can talk about doctors sawing into my daughter’s legs with a straight face, but talking about her turning three-years old makes me sob like a crazy lady! Anyone?

So in conclusion, don’t define my daughter’s life by her disability. She’s a bright, charming, willful, beautiful, almost-three-year old (*sniff*) little girl who has a purpose on this earth that has nothing to do with making others feel better about her physical disabilities.

For those of you who don’t know, my daughter is scheduled to have bilateral proximal femoral reorientation osteotomies on November 11th, a little over a month after her third birthday. That is a huge, major, body-altering surgery on both femurs just below the hip. Aka hip surgery. Aka terrifying.

I’m having a hard time getting a hold of the nurse coordinator, except for the occasional email with promises of future phone calls that never happen. I’ve been waiting three weeks for a phone call. Now she’s telling me Monday. I know they’re busy so I try to be patient.

During this phone call I get to ask all my questions, but I’m at a loss of what to ask. Just try Googling that long-winded surgery name to understand my frustration! I need to know everything, and I need it super dumbed down for me!

But as soon as I do get to ask my questions, and subsequently get my answers, then begins the arduous tasks of faxing over paperwork, meeting with her local doctor to keep him in the loop, figuring out flights and planning extended time off work. There’s a California program that may cover some of my leave without pay for the second week in Philly that I have yet to research. Then I have to set up accommodations for the 9+ days we’re there and start saving towards it. I think Ronald McDonald House is going to be our home away from home. I just wish I could schedule staying at the one closest to the hospital ahead of time!

In the meantime, my baby is going to turn three-years old on October 3rd. This is very emotional for me. She’s getting to the age where she’s going to start remembering some of these surgeries. I’ve never before in my life worried so much about one little person! What will she think? How will she feel? Will the medical stuff ever end? How can we make her life normal? Will this surgery allow her to stand without her knees being fixed too?

It does help that the surgery ended up being in November. Originally we were going to try to have it in September, but that’s just around the corner! I need more time than that. The only bad thing with November is that it’s too close to Christmas. I believe (although I have to make sure this is still the case) that we have to stay in Philly about two weeks for the surgery, then fly home, then fly BACK to Philly six weeks later. That puts us in the Christmas flying season. And I still have no idea how we’re flying both trips, all three of us.

I’m doing this wonderful study of Ruth with some girlfriends. I have a workbook to answer questions as I read the history of Ruth. In the workbook it asked what legacy I’d like to leave. Even thinking of the future (legacy or none) stresses me out. I couldn’t even answer the question! But I don’t think anyone asked that of Ruth; it would have stressed her out too. And the answer at one point probably would have been, “Die in poverty as a widowed migrant worker.” I think it’s better to focus on the second/minute/hour that you’re in. Work a hard day’s work and stay focused on it. I can only do this journey if it happens day by day. Because I could look at my list of everything I have to accomplish before November and pass out! So one day at a time. One moment at a time. One weekend at a time. And God is ever present.

At your feet I lay her down.
Humbly before you I bow.
She’s the blessing, you’ve given to me.
Father of Light!

Beautiful by Plankeye

It’s 2:20 AM according to my computer clock, and I can’t sleep. My chest has ached for several days now, and I’m not being poetic. It’s stress-related, and bad enough to wake me up. Just knowing logically that something you worry about is causing a physical pain is not enough to stop the pain. It’s a fascinating physiological reaction, but one I dislike in the middle of the night. So I thought I’d write out my worries.

I was reading about osteoporosis the other day. Something Laelia will have. Something she takes vitamins for now. I read that it’s worse when you don’t use your legs very much for weight bearing. And then later when you do use them, if you can use them, the bones can break from weakness caused by disuse.

I was hearing about arthritis. Lali’s geneticist said this was coming in her 20′s.

I finished reading Jodi Picoult’s book, Handle With Care, a book about the life of a family living with a little girl with a disability (OI). I’m convinced this talented writer hates her readers. I identified with the mother so much for the first 60 pages; I even wondered if this was a true story. Then I watched helplessly as the mother destroys every life around her for the next 340 or so pages until, well I won’t give away the ending, but it sucked. For some reason it stressed me out and now I worry about what Laelia’s life will be like.

I worry about having another baby. We’ve decided to wait indefinitely. There’s just too much to worry about with Laelia, including picking her up since she’s largely immobile. A pregnant woman can’t lift so much weight or bend over quite so easily. So that’s out of the question. I mean there are other financial, emotional and even spiritual factors that may be greater, but either way I worry about Laelia growing up lonely. And after reading Handle With Care and one other somewhat whiny book about the experiences of siblings of disabled kids, I worry about what kind of life we’d be bringing another child into.

Laelia asked for a baby today, which is the only reason I even bring it up. When we said our prayers she thanked God for “buildings and turtles and purple” and said, “please for to give baby… and Panzer!” (Panzer is the name of Grandpa’s dog, but also a name she gives every dog.) She wants what she wants. She seemed just as happy to get her plastic baby when she got home and rock it to sleep.

We had Laelia’s IEP meeting not too long ago. We asked how stretches could be included. Short story: they can’t–they don’t seem to be medical enough or educational enough. Stretching her fingers allows her to continue to grasp a pencil or paint brush, her wrist stretches allow her to type, elbow stretches allow her to continue to reach her mouth to feed herself lunch, supination allows her to position her arms to catch a ball; these are all things they do in school. Stretching is the ONLY real remedy for arthrogryposis. It’s the only thing that a non-medical person can do for her. It’s the only thing that makes me feel like I have any control over this condition. Of course there’s also surgeries, serial casting, and splinting, but stretching creates the gains we’ve made, makes some surgeries unnecessary and does what static splinting cannot. In my horrified thinking, to deny her stretches throughout the day, for eight hours of school a day (beginning when she turns three), is tantamount to neglect. I had a nightmare where after neglecting her stretches for eight hours in the middle of the day, she became so stiff she was unable to hold a pencil in a month’s time. This would have been true of baby Laelia, but little girl Laelia moved around more and the results shouldn’t be as severe. I contacted an advocacy group. I was told by three different people to get a lawyer. I was told how to appeal, go through mediation and then go before a judge. 

The thing is, it’s hard for me to see another side to this. I can understand the school not wanting to do the stretches, I can even understand them viewing it as a liability, but I don’t think we’d lose if we took this to court. IEPs can end up in court; it happens. But I’m trying to find a compromise. And to that end, add to the the list of stressors finding a possible volunteer to drive to her school near National City to do 15 minutes worth of stretches five days a week if her IEP doesn’t work out the way it should.

Chest pain. It’s on my list of worries.

We went to OT and PT today. During PT we met with a wheelchair guy. His name was Chris, but I can’t tell you his official title because I can’t find his card at two in the morning. We tried a power wheelchair with Laelia for the first time earlier today. She did perfectly! She caught on faster than most, says Chris. He watched months of training go by in ten minutes as she learned to stop and turn and navigate. And she wasn’t scared. She finally could do what everyone else took for granted! Her joy was distracting enough for me at first, but now we need to get our insurance on board to get her one. Our insurance wants to drag their feet for at least three months. It’s going to be a battle.

I swear if Laelia did not have so much independence for the first time in her little life I would not even be thinking of a chair! Not because I don’t think she needs one or that it’s not wonderful, but hearing the logistics of owning one stressed me out. We don’t have a van, so we could consider buying a trailer and putting it behind my car. I don’t think I’d fit into regular spaces after that. The thing also weighs a ton (~200 lbs) and can’t be lifted. Great.

We also have to move. It’s because we are in apartment #8. Apartment #1 is at the top of the hill. Then you go down a flight of stairs to get to #2. Another flight of stairs for #3 and #4. Another flights of stairs to #5. Etc. Etc. Our apartment has a long living room and small kitchen downstairs, then up one narrow flight of stairs you have the rest. A ~200 lb power chair cannot be lifted easily. In fact you really need special equipment to lift it. It won’t work here. I knew this place wouldn’t work forever, but it would have been nice to wait a couple years until we could afford better.

Our wonderful next door neighbors moved out last weekend. To Colorado.

I called Shriner’s to make an appointment for Laelia’s surgery. The doctor’s nurse was on vacation and will be back Monday. We’ll probably come up with a date on Monday. Then I’ll finally know when this surgery will be. And I wonder if it will make things easier, or fill me with dread.

We’re flying to Idaho tomorrow and I’m not packed. I also work a full day tomorrow. Our flight takes off two hours after my shift ends.

The toilet clogged.

Laelia’s doctor died. It’s not new news. We saw a new doctor, one from his office, yesterday. Everything is new again. Dr. Schwartz was coordinating Laelia’s care. We also trusted him. Not that we can’t trust a new doctor, but it’s an added stress. Got this email from my husband before our appointment: 

-Update all specialists who need to know of the PCP change–Mubarak/Wallace’s office, OT/PT office……anyone else? Does anyone at the school need to know? How about Shriner’s?
-When you make an appointment, Aetna may have to call you and ask you questions about the change.
-When you make an appointment, make sure you let them know that you want Laelia’s medical records accessible to Edwards–it’s all in the same building, so maybe you don’t have to do this, but better safe than sorry.
-Accept that a good chunk of your appointment is going to be about bringing Dr. Edwards up to speed on all the therapy that Dr. Schwartz had authorized for Laelie.

Yay. :-/

We actually saw Dr. Chen (same office as Edwards and Schwartz) because we needed to be seen right away. Laelia has a chalazion (stye) that we needed medicine for. She also got a TB test and some paperwork filled out for school. We waited two hours to see the doctor. The best thing about seeing doctors in the same office is that you can always see a backup when yours is busy or on vacation or sick. Worst thing about seeing these doctors is that they’re so darn popular the wait time is extra long. Laelia and I used the time to give each other practice TB shots and explain exactly what happens. Laelia even picked the arm she wanted it in. Afterwards we gave Pooh Bear a shot and band aid too. But what I forgot was that you have to come back and get the sight looked at! Acc! I told them we were flying out of town tomorrow! They’ll try to see us Friday morning. It’s just stressful!

Earthquakes. We experienced an earthquake before we left for the doctor’s office that shook us pretty hard. It was over quickly, but I never know when it’s going to be the “big one.” So since I was on the floor with Lali and felt it come a bit slowly at first, I quickly explained to her what was going to happen. Then when I heard the crack and the room started shaking harder I was able to say, “See, Laelia, an earthquake.” I was terrified, but Laelia was thrilled. When it was over she shouted, “Again!” This is the third earthquake that we have had since Easter Sunday. I’ve been having nightmares about earthquakes lately. In my dreams we’re upstairs in our bedrooms when it happens and unable to get to Laelia across the hall.  

I’m tired.

Okay so that’s my outpour of worry. The random things. It’s not all bad. In fact I had a good talk with my OT this afernoon about what to do about Laelia’s IEP. Jill (our OT) is going to measure all of Laelia’s joints then watch them like a hawk next year. We’re trying to figure out ways around traditional stretching through that eight hour period too. Then we’ll incorporate stretching into our Mommy/Baby time (which I hate, but we’ll do what we need to do) and while waiting for the school bus for that ten minutes in the morning at the top of our hill (close to apartment #1). I felt a little better after talking to her. 

I also had a good time doing  a Ruth study with girlfriends. We talked about “weeping forward” and how we see strong women push forward in life despite it all, but half blind with tears in their eyes and arms outstretched to keep from running into something. Hey, whatever works.

Okay. So tired. Bathroom then prayer then bed.

Toilet’s clogged. Ugh.   

We learned today that our dear pediatrician, Dr. Allen Schwartz, passed away. I’d say “rest in peace” but he was Jewish and has told me stories of the partying and feasting that goes on with any special occasion. So I have to bet this will be no exception.

He was a wonderful doctor who we met before Laelia was born in a birthing/new parenting class. He was hilarious, and left us wanting him for our doctor. After Laelia was born I remember trying to explain to him that she had arthrogryposis. But unlike a typical doctor, he already knew what that was and could pronounce it better than I could! What a blessing! Then he went back to his office and showed me a  framed picture of another patient of his with the same condition! We knew he’d be a great doctor to our little girl after that. He even helped us find our first specialists, and let us know about another mom who was in my position. But that’s not all. He has been there for our family since the beginning and every major step in between. He helped us get our disabled parking placard and our flights to Philly too. In fact not too long ago I was on the phone with him working out the paperwork for Mercy Medical Airlift. Any time I needed something done quickly he was there for us, despite having a rather large practice and many other patients. He will be missed. Dearly. There are not many other doctors who would make me cry after hearing this kind of news; he was special to our family.

Before we hired him to be our doctor my husband asked him if he would promise to live long enough to see Laelia through to 18 years of age. He was the kind of doctor you could joke about that with. He promised. For some reason that’s the memory that stands out the most right now.

We’ll miss you Dr. Schwartz!

And as you always said to me:  May the Schwartz be with you! :’-)

We survived! Four hours of sleep. Four planes in two days. Air sickness. CONSTANT Laelia chatter/attention grubbing! Five partial viewings of Finding Nemo. Sore arms that ache. Bruises from carrying the car seat. Ripped our bag open. Got lost three times. Stress. Got lectured by a flight attendant because my daughter was sitting instead of standing. Cried twice. Had to advocate several times. It was hellish. Travel. Ugh.

And there was a point, after getting lost (again!) while driving around Philly, then being two hours late because we went to Temple Hospital instead of Shriners Hospital, when I wished the doctors at Shriners would be mediocre so I’d never have to do this trip again. Never again!!!

Unfortunately for me and fortunately for Laelia, Dr. van Bosse is now our orthopedic doctor!

And we’ll be back to Philly three times in the next 14 months if things play out right. Yes, that means surgery. I didn’t schedule it yet since I need to plan the time off work and to talk it out with Charley, but it most likely will happen as soon as we’re available. ASAP. Probably after this summer. I’ve already met with the anesthesiologist, Dave, and gotten the details. Now it’s a matter of logistics, and processing.

And since we live so far away, they’re going to treat us like an international patient (since people with AMC come here from all over the world), and try to limit our trips back and forth. Maybe we’ll do a few follow up appointments in San Diego then forward the results to Philly. They’ll also be in contact via email and phone.

We’re not doing the derotational osteotomies on her knees we’d heard about in Seattle, not yet anyway.  We’re doing a surgery that makes much more sense for right now (a whole methodology that makes much more sense), that will allow Laelia to put her legs together where the IT band releases (surgeries from September and October) could not.

So far our surgeries have focused on soft tissue issues.  But Dr. van Bosse is going to focus on her overall body shape and do a surgery to cut and reposition the bones in her hips to fit what her contractured body is already doing. And the result will allow her to do more and look more like a typical kid. (Notice how I didn’t say ‘normal’ kid? See, I’m learning. ). It’s called a reorientation. (It’s also called a big, long four-part name that my sleep-deprived brain could not retain.) We’ll get everything in writing first then contact them to set up the appointment. It puts us in Philly about 9 days, then flying home, then flying back six weeks later for the cast removal (and they may give us KAFOs at this point since they’ll be casting her for them before surgery). Then flying home. Then flying back in a year to get pins, clamps, etc, surgically removed and start a new surgery on her foot, etc etc. Our future may be tied to Philly for quiet some time.

Since her hips are in the sockets, but they’re externally rotated and contractured, this would be the best surgery for her. But I didn’t have to just take Dr. van Bosse’s word for it, as so many doctors expect, but instead he pulled up a few other patient files (children with arthrogryposis who had been through this surgery) and he showed me their progress. We had taken Laelia’s x-rays while we were there. (She’s less scared of the machine if she can be a ham. “Smile for your picture, Lali!” did the trick. ) This allowed us to compare her x-rays with other kids with arthrogryposis until the doctor found one with the same shaped hips and legs in their x-rays. Then I could see that child’s x-rays after they had had this surgery and know exactly what to expect Laelia’s surgery to look like. It was exciting.

Dr. van Bosse wasn’t just showing me what he wanted to do, he was showing me what had worked for other kids! An amazing experience! A new experience.

I have met with doctors who didn’t even know what arthrogryposis was, or had trouble pronouncing it, and some of them even gave us advice on surgery or therapy. Even our expert surgeon in San Diego who does have experience with arthrogryposis seemed to pale in comparison with Dr. van Bosse’s experience. It felt like we’d arrived at arthrogryposis mecca!

We also met with Dr. Kozin. It’s fun to get looks of wonder from your doctor instead of horror that your child has so many degrees of passive range in her elbows. Doctors who are familiar with arthrogryposis know Laelia is lucky in this regard. Where other people would bemoan the fact she can’t lift her arms (including me at times), these guys are in awe of the fact that she can reach her mouth and doesn’t need surgery! Oh and Laelia had not known Dr. Kozin more than 30 seconds before falling in love.

I have several more pictures like this. If Dr. Kozin was the cuddly doctor, Dr. van Bosse was the playful doctor. Lali just giggled as he measured every joint, instead of fussing like she usually does.  She seemed to like everybody. Ooh she liked Mimi too!

Mimi too!

Her “airplane hair” afro for the trip. You can’t see it, but on the other side I stuck her comb in her hair and it stayed.

So glad they put these racing cars in every room! Vaaarooooom!

Laelia was such a good little girlie for this trip! I was specifically worried about this. I mean, sure, she was demanding, but mostly in a sweet way. She doesn’t sleep on airplanes so she had to be constantly entertained (constantly) on all four flights. I felt like Super Hero Mommy by the fourth flight. Well she did finally pass out on the last flight home at around 11:00 PM. And she fell asleep for almost 40 minutes in between flights, including sleeping through a shuttle ride.

Another huge blessing was that we got to stay at the Erie Ronald McDonald house!!! I called as soon as our plane landed in Houston (the day of) and got the okay! (They don’t make reservations so you call the day of.) That cut out having to search for a hotel or make other plans last minute. It was an amazing house! One of the roads on my Google directions was closed so it took an extra 45 minutes to find it (d’oh), but once we got in there they were so nice and friendly. I had just been on a plane with a mean person who made us feel terrible that Laelia couldn’t stand or walk. Long story. So when I put Lali on the floor to scoot around and saw a Ronald McDonald volunteer approach her, I inwardly tensed. But they just wanted to play! The volunteers were all amazing! There was always food around even though we never made it to a single meal on time and there were plenty of relaxing areas to unwind. Laelia loved the therapy dog, Boss, and they gave her a free toy doggy that she adores too. We couldn’t enjoy all they had to offer since our schedule was so tight, but I really hope they are available to house us again when we go back for a little over a week.

Only bad thing about Ronald McDonald house is that it had this magical ability to keep Lali up all night. She slept five hours. I got four. We tried her on the floor where she screamed bloody murder for twenty minutes. Then we tried her in my bed with two chairs with large backs against the side of the bed so she wouldn’t fall off. She played, she sang, she screamed. It was enough to drive me crazy. She even removed her splints, DB bar brace and was starting on her AFOs before I stopped her. She started hitting me in the face at one point. And kicking the bed over and over and over. Then she got really upset that Pooh Bear didn’t close his eyes to sleep. She kept trying to close them and telling him to go to sleep already! Haha! Every time Laelia gets in trouble, it’s not long before Pooh Bear is in the SAME trouble! At Tim and Nicole’s wedding last week, Laelia lectured Pooh Bear about keeping quiet during the ceremony. SO STINKIN CUTE!

So when I woke her up at 8:00 AM to leave, she was so out of it. She gave me the same look she had given me the day before when I woke her up for an early flight. That “Are you kidding me?” look.

Exact words, “No Mama. I asleep. Bed pweese.”

I mentioned I got lost… yeah, just about every time I got behind the wheel.  Maybe it was the lack of sleep or the noisy kid in the back seat, but I’m pretty sure Philly is just a ridiculous place to drive in. Not only that, but I got lost in a not-so-great part of town. It’s funny because this great hospital is surrounded by ghetto neighborhoods. And if the jay walking, lack of clothes, yelling, kids drinking of a broken fire hydrant or constant sirens weren’t clue enough, we were warned it was “ghetto” by hospital staff, other people who have been there, the car rental guy and several patients. So getting lost at night down one way streets was not fun.

Okay so I’ve hinted that we had a bad experience with yet another airline person. But after four flights in two days it could have been worse. We got our tickets for Continental flights through Mercy Medical Airlift, and appreciated it so much! That said, there were a few things I would have done differently if I had been booking my own flight. Not having to get up super early or get home super late would have been one thing. Getting window seats for the car seat would have been another thing. Getting wheelchair or special assistance set up before-hand would have been a third thing. But Continental employees were helpful. When we first arrived I had two of them cooing over my kid. Always the quickest way to my heart. Then we got wheelchair assistance, and knowing how to request it now, had it properly set up for our connecting flight in Houston. They even gave us a ride to our connecting gate, which would have been difficult to make otherwise. All in all they were very accommodating and I don’t know how I would have lugged everything I had to lug without them.

My only two complaints have to do with arbitrary rules and one flight attendant’s enforcement of these rules.

Seriously having a personality that HATES breaking rules or getting lectured on breaking rules AND doing four different flights in two days gives me perspective on how arbitrary these rules are. Flight #1 required we put a car seat in a wheel chair and have an employee wheel her down the ramp backwards. I couldn’t touch her until we got to the plane’s door. Flight #2 was similar, but they insisted I check the car seat, which didn’t end up happening, more on that later. Flight #3 I was informed that under no circumstances could she go down in a wheelchair. It was unsafe and against airline policy! Seriously? I’d just been on two flights with them yesterday and the story was different. Flight #4 they made a big deal about it. I was given options. Did I want her to go in a chair? Or be carried? And how could they help? (I felt like they were saying, “Why are you putting us in this situation?”) I just wanted to say, “Just tell me the exact policy and stick to it! I’ll follow whatever the rule is!”

Not just entering and exiting the plane, but on the plane the rules tended to change. It wasn’t until flight #3 that we were told our portable DVD player was against the rules. It had to have head phones. Flight #2 all the flight attendant said was, “What movie is that?” And Laelia said, “NEMO!!!” And that led to a couple minutes of Laelia explaining who every character in the movie was. But one flight later it’s against the rules. Okay…

Oh and placing the car seat was a pain. We had a window seat on Flight #1, but on the rest of the flights we had an aisle seat for the car seat. On Southwest, the week before, we were told putting a car seat in an aisle seat was against FAA rules and that this applied to every airline. But here it was okay I guess. It all depends on the day, and the whim of those enforcing whatever rules.

Okay so back to Flight #2 when the incident happened. They demanded I check the car seat. Since Laelia can’t sit in a regular seat and WILL NOT keep her seat belt on for any length of time, which leads to battles the whole flight, I had to insist that I didn’t lug this thing around for fun’s sake. The flight attendant then wouldn’t let me board for several minutes while I stood at the front of the plane and she inspected my car seat while grumbling loudly. I must have heard, “You need to check this,” several times. Telling her I’d been on five flights with it in the last two weeks, one just a few minutes ago, and it was just fine, only led her to speaking to me in a less friendly way. A few long minutes later they found out the seat was approved (which is what I’d said all along) and let me on. It was at this point that I took the opportunity to explain why Lali needed the car seat, and I informed them that Laelia had disabilities, and without working arms to break her fall, turbulence could knock her around in a big seat. The only reason we have to buy a seat for her is because of airline rules. The only reason I bring a car seat is for her personal safety. I was apparently ignored.

Later on in the flight the seat belt light went off and I was able to get up with my kiddo. I knew I wouldn’t be able to do her daily stretches here, let alone some PT, but I did need to get her joints moving somehow. I went to the back of the plane by the restrooms after I’d seen two other parents of small children take them back there. I put Laelia down on her bottom and she stretched out a bit. This is when the incident happened.

A lady who was not nice to begin with, let’s call her Cindy because that’s her name, lectured me on how dirty the floor was. I’ve heard this from so many “concerned” people that I was tempted to ignore her entirely, but I did respond that I didn’t mind about the dirty floor. It’s funny how people don’t care about the bottoms of kids’ shoes getting dirty, but the bottom of their pants is a different story. But, no, that wasn’t good enough. She insisted that I should immediately get my child off that dirty floor. And that being there was “terrible.” I had seen other children stand just where we were and they were not told about how filthy it was, so I then restated that I knew it was dirty, but it was fine for her to be dirty. She then ordered me (not joking) to get my child off the floor right now! I got my advocate hat on and asked if this was a written policy (since I hate breaking even stupid rules, it’s against my personality) and she said it was! No being disabled on the plane, folks! I asked for her name, intending to introduce her to Laelia and get Laelia involved in the discussion. I’d heard that works really well and is a nice way of informing people without ostracizing Laelia. But I got so much fire back from that lady that it sent me to tears and I found my voice, along with my advocating powers, diminish under her anger. In fact I was so distracted by the way she spoke to me that I didn’t notice a guy behind me who needed by, which sent Cindy into a rant about how my child was blocking the aisle! I moved, Laelia didn’t, and he got by fine. At this point Laelia started to fuss, which led to tears. Cindy ordered me in a nasty tone of voice to pick up that child right now! I pulled her in my arms and she screamed, “NO NO I STRECHING! MAMA NO!” How terrible for a girl with contractured joints! I put her in the bathroom stall to get away from Cindy and sat there stunned until the fasten seat belt sign came on.  Not being able to stay in my shelter after that, I moved back to my seat, but on the way I tearfully explained why we were even back there to the fellow employee who had witnessed the whole thing. He apologized for Cindy, said she was wrong, but he seemed slightly afraid of his lead flight attendant. We took our seats and tears wouldn’t stop, but I hid them well. I heard Cindy complaining about us to the guy we’d just spoken to and he told her about Laelia being disabled and not able to stand up, which sent her into a rant about how right she was despite the circumstances. We were in row 34 of 37 so I could hear her in the back. Not every word, but I heard her. I was trying to gather my thoughts. Were we really just discriminated against for having special needs, because we couldn’t stand like the other children? Or was there actually a rule we broke? That kids who don’t have disabilities don’t break? And if so, is that a good rule to have, Continental? As I thought about it, I could hear her still going off behind me. Her tone of voice was like a knife to my insides, from three rows away.

If she indeed had been working for Continental as long as she says and was a lead flight attendant, what kind of training had she not been receiving for those many years?

Thankfully, and I could have kissed her, Cindy showed back up at my seat to tell me off some more! (Or maybe to apologize? But you can’t apology if you’re “not wrong” so it came across badly.) Yay!!! Now the tears had cleared, my thoughts had cleared, and we were both well aware of her discrimination against my daughter. Mama Bear was back in action! I said things like, “I appreciate being warned about unsanitary conditions, but I do not appreciate being ordered to pick up a child when other children were allowed in the same area under the same conditions!” She tried to tell me that the seat belt sign was on during this, and I interrupted and informed her that that wasn’t the case, and it only came on after we entered the restroom. And, after hearing in the pseudo-sweet voice that I should really ask to be seated in row 7 next time, (grrrrrrrrrr), because they can put down a blanket or something for her, I responded, “Look, I am the expert in my child’s care. And we don’t appreciate being treated this way.” BOOYAH! Thank you thank you thank you so much for coming back and not letting this end with me in tears and my daughter undefended! Finally Cindy and I could not come to an understanding and she left. (In other words, we were both “right” in our own eyes.)

So okay that was hard. I was already so stressed about what we’d learn the next morning, and part of me forgets my kid is disabled until she’s treated differently than other children, like she was on that flight. But nothing could be funnier than when for Flight #3, the very next day, I get on the plane and who do I see? Cindy! Again! She was as surprised as I was, “Wow, you again. That was a fast trip.” She said. I responded, “Yep.” Then Cindy jumps over herself to get my bag, ask if I’d gotten to switch to row seven for this trip (no) and snaps at fellow co-workers to help Laelia and me. Hahahahaha! I texted Charley, “Guess who our flight attendant is again?” And he texted back, “NOOOOOOOOOOOOOOOOOOOOOOO!”

At one point in the flight, Laelia said “hi” to Cindy and Cindy was like, “Does she want something? Water? Can I get her water? Does she need something?” Wow, I think she had a day to dwell on our experience and found herself in the wrong. Or at least very much in trouble if I wrote a letter… which I am *that* person who rights letters, so she’s rightfully freaked. I asked Laelia if she wanted anything and she says, “SOCKLET!” (Chocolate) So Cindy came back with Hersey bars for Laelia who gobbled them all up! Spoiled kid!

I really have to consider my own actions and reactions in these situations. I feel like I’m getting stronger as a mother, but I’m still awkward in these situations. How terrible it would have felt to have ended with me crying in the bathroom? I know I don’t like authority much because I’m a pleaser and authority can take advantage of that, but I do want what I want, and I want to do what I think is best for my child. Of course I don’t want to push or bully, and often have difficulty finding a balance between nice and pushover. But in this case I believe we were 100% in the right. Which is a position I’m most comfortable with. And I’m so oo oo writing a letter.

There were lots of times I felt discouraged on this trip and was almost immediately reminded that people were there for me. At Flight #3 when all the rules for entering the plane changed (overnight, I might add) I got a text from Lauren saying she was praying for us RIGHT NOW. I also got a couple similar texts from Chelsea at just the right times. And my dad even called and left a voice mail message that encouraged me as I was absorbing the news that we’d be back for another major surgery or two.

All in all I felt this strength and peace that isn’t something I naturally carry around with me. I felt God’s presence during these really  hard times. I’d be in a situation I couldn’t handle, praying for help, and nothing around me would change, but I would change. I’d feel the strength to read Laelia yet another story. And for those of you who get motion sickness (or what I call air sickness), you know how awful reading can be during those times. But we did it. And Laelia doesn’t seem worse for wear. I’m exceedingly thankful to God for his provisions when I was all alone and responsible for my daughter’s care.

Okay I blogged about it. And once again informed my spell check that “Laelia” and “Arthrogryposis” are words. Now I’m adding “Kozin” and “van Bosse” to the list. *sigh* Now I’m going back to bed.

Last week we went to Tim (my cousin) and Nicole’s wedding and had a great time! It was beautiful and so much fun! Plus a wonderful chance to catch up with my family. Below is another blog with pictures from that event. But this post is about something else: our flight home. We had a terrible time on our flight home. Well there was one bright moment–it felt like a scene from a movie when at least 60 people (okay, well, two people and their large groups of students and parents) helped Laelia and I get home! In fact, we wouldn’t have been able to go home if not for those strangers! I was so grateful! I’ll copy and paste parts of a letter I sent to Southwest this morning so you know a tiny bit of what happened:

“We arrived 45 minutes before our flight was to leave. [...] I saw the line to check in was very long so I asked an employee in a Southwest uniform near the front of the line what could be done about my late arrival. [...] She informed me that there was nothing to be done and I would miss my flight and end up on stand-by. I then asked for a wheelchair for my daughter who has arthrogryposis affecting her arms and legs. She pointed across the room to the far side where I then, unassisted, dragged my bag, a car seat, my suitcase and my daughter to put her in the chair.   

When I arrived back at the end of the line behind a large school group, one of the parents of that group had noticed our dilemma. She then took my bag for me and gave me her place in line. Another man in the group asked his kids to let me by. I did not initiate this charity, but appreciated it a lot. Getting permission from people in the line, I was cheered on and escorted to the front.  

The aforementioned Southwest employee then became confrontational and rude. She demanded the ticket of the lady helping me and ordered us to the back of the line. She then said that the 9/11 terrorists had cut in line and that this rule was enforced because of terrorist activity! At the mention of terrorist activity, I felt very ostracized and feared repercussions. Other people in the line behind us started to defend us and tried to explain that we had not cut in line. The Southwest employee became agitated and argumentative with them until a supervisor behind the kiosk spoke to her and graciously offered to take us.”

Yeah it was a bad experience. But the drama continued when we got off the plane. Here’s more from the later part of the letter:

“I asked if a wheelchair would be available upon exiting the plane and she said it would be. So upon our exit from the plane we saw that same type of wheelchair waiting for us and I assumed it was ours. I put our car seat in the chair and while I was strapping my daughter into it, I overheard from behind me a female Southwest employee talking to a male Southwest employee (yet directed at me) to put another passenger into “that” wheelchair (referring to mine). Of the four Southwest employees in that crowded space right outside the plane, no one made eye contact with me or asked me to relinquish the wheelchair, but they all spoke loudly in my direction while pointing at me. This was very unprofessional. One Southwest employee, the man who had been ordered to take my chair, stood uncomfortably close to my daughter’s wheelchair while I was strapping her in. I asked him at that point if they needed this wheelchair for another passenger, and if he could then bring us another one. He replied sarcastically, “You mean a stroller? You need a wheelchair or a stroller?”  

My daughter was clearly in braces and could not move her arms or legs, plus I had her disabled parking placard on hand so I was able to “prove” she was disabled and needed the chair. He didn’t respond to me, but spoke to the female Southwest employee who had ordered the wheelchair be removed from me who then got into a bickering match about canceling the other wheelchair with another female employee who responded with, “You don’t have to talk to me that way.” Then the first female employee stormed off! So I asked the remaining Southwest employees if I could please leave now and was given permission.

My past experiences with Southwest staff have been positive. Employees, on the aircraft anyway, have always been courteous and usually humorous too. I would like assurances that my experience on June 13^th will not reoccur. I feel that Southwest violated the anti-discrimination aspect of the Americans with Disabilities Act by assuming my daughter was not deserving of the equipment she needed. Because of this I would like a copy of your policy on dealing with handicapped passengers. And I want to know in writing what training your personnel receive in handling passengers with special needs. I look forward to your reply. ” 

I then signed my name and hope to hear from them. Yeah I really shouldn’t have to prove my daughter is “disabled enough” to deserve a wheelchair. Sheesh. I felt like a rock star for remaining so nice. Gave myself a little reward too. When I got home I had fudge ice cream for dinner while watching Daria on DVD while crying my eyes out while getting my feet rubbed by my husband. Ah the girl life.