Philadelphia Shriners

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!

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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.

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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!

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Mimi too!

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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. :)

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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.

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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. :)

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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. :-D 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. :)

6 Responses to “Philadelphia Shriners”

  1. Kiersten says:

    Alexis – I love reading your writings.

    A. Works cannot express my excitement for Laelia and her NEW orthopedist.

    B. It is shocking the difficulties you have had while flying. It sounds like you handled it with grace. If I were in the same predicament, the plane likely would have been diverted and Ryan and I would have been escorted off the plane.

    C. Thank you for sharing your story and I hope we can see/play soon!

  2. Kiersten says:

    duh….that’s “words” not *works……..see how excited I am…I’ve lost the ability to type!!!!!

  3. Linda Wesley says:

    Yesterday your husband and I were marveling at your incredible tenacity with blogging. And come to think of it, with life. I’m so glad to know you and to know that you are the one who lives with my brother and my niece and makes sure they grow up happy and healthy! =) I’m filled with joy to read about the ways God is making himself known to you. It is so clear he is giving you grace and peace and strength to keep doing what needs to be done. Thank you for continuing to share your journey so honestly and candidly.
    All love.

  4. Lynn says:

    Ditto Linda.

    and

    I’m sorry it took me until now to read this, because it was so encouraging despite the persecution you describe.

    Don’t let anybody make you feel like you’re not an amazing mommy. You are.

    You are.

    You are.

  5. Chie says:

    I’m so encouraged by your Mama Bear attitude (and love that you fight back so diplomatically)!!

    You are SO not a pushover. That you had to courage to stand up to such blatant discrimination to Laelia shows your true colors and personal strength. Cindy has nothing on you!! BOOYAH!

  6. Laelia Sky » Blog Archive » Here’s my card says:

    [...] 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 [...]

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