New Legs!

Today at the grocery store I went to remove my daughter from the shopping cart and, before I even touched her,  she grimaced. She grimaces every time. Not because she hates grocery shopping as much as I do, but because her wide legs  always catch the cart, and her knees, that  stick out past her hips on either side,  bang against the metal frame. It takes two people to successfully remove my child from a shopping cart: one to hold her legs together and the other to lift her out of the seat. But  there was no one else around so Laelia grimaced. Like she always does.  

But what a shock when her legs slid right out!   For the first time in her life, my daughter  has legs that are positioned correctly to fit in the shopping cart seat!   Thank you Father God!  Thank you Dr. van Bosse! Thank you Shriners Hospital for Children in Philadelphia!

Laelia’s legs, a history:

10-10-07 – Laelia’s splayed, externally rotated legs at birth.

10-29-07 – Laelia’s first casts to correct her feet at three weeks old.

2/23/09 – One of our attempts to keep Laelia’s legs together. :)

2-14-10 – Laelia’s corrected feet (that finally fit into shoes) look great, but  her  legs  are still  so splayed and outwardly rotated  that  her toes point away from each other and her knees go off  in different directions.

(Her shirt says, “Dr. van Bosse Fan Club.”   Thanks Jessi!)  

1/11/11 – After seeing Dr. van Bosse and getting her osteotomies, Laelia’s legs are now straight! Her  knees now  crown her legs instead of jutting out to either side, and her toes point up instead of  away from  each other! She’s in the position most people have naturally when sitting or standing! And boy did she work for it!

The trip back to Philly was exhausting.

And required a lot of travel. Her friend, Justice,  gave her a push, but he didn’t go all the way to Philly so we had to get on a couple airplanes too. :)

When we got there it was so cold! Too cold for this little California girl!    Lali had  never seen snow before and asked me why it was  wet and cold.  She thought it would feel like pillows.  :)

At the Ronald McDonald House we spent time with Sophie, Ben and  their Mommy, Tammy! (The next day  the five of us would all get in a big rental car and drive to Shriners!)

Mama got practically NO sleep that night… or the next night… or on four of  the five airplanes we took. The reason for that was one little girl who would not let me sleep. The only sleeping she did do at the RMDH was when she was faking it for this picture. Mommy about strangled her. :-/

The next morning  we waited for our appointment with our friends. Here’s  baby Lexi!

Before cast removal.

After cast removal.

Lali’s new legs are so straight that I often find her staring at them like this. :) My favorite Laelia quote in her sweet little voice, “I’m very beautiful and straight now after my surgery.” Precious!

Her legs go together!

 

Her legs go apart! (She’s sporting the Wicked Witch of the East socks. :))

Oh and here’s a video of her waiting for Dr. van Bosse.

Laelia took FOUR baths while in Philly; I just emptied the tub when it got cold and filled it back up again.  Each time a new layer of dead skin got  gently massaged  off. She LOVED getting bath time back!

Laelia’s feet (especially the right foot) swelled up pretty bad  after our three (in one day)  airplane rides back home. It was because of the new, aggressive  AFOs and all the pressure they caused. Now she gets foot massages everyday until the swelling goes down.

But no matter how bad the travel, surgery, recovery, swollen feet or negative comments from strangers got, look at this end result! Look how straight she is!    Compare the above  picture of her lying on her side  to this!   Amazing, right?!

So now that I’ve gone through the eye candy (aka  pictures), I guess I’ll sit down to actually chronicle our journey. It was long and hard. Wait, that’s summarizing our journey. I guess it’s going to be hard to write about. Half of my brain no longer exists because of this trip; it was that exhausting.

I just want to say we had zero problems with flight attendants. Every one we met was courteous or helpful or nice. This is a major improvement from last time! And this is the first trip  where I prayed about this specifically.  It just made the whole trip seem surreal. Where were the fights? :) People I handed Lali’s card to were just really interested in her. It was great!

I also want to say that our needs kept getting mysteriously met. For instance, I got a rental car, but it was going to be too small to fit all my passengers. But before I even realized this I was getting help out to my rental car by a nice lady (just another traveler) when I heard her whistle and remark, “Wow, that’s a nice one! That must have set you back.” I was totally confused as my tiny rental car was unexpected, unasked for,  upgraded for free  to a larger vehicle! It fit all of us including three casted kids in the back, all our stuff,  a wheelchair and a double stroller.  

But not only that, our little needs got met too. I ran out of arms to carry things on the plane and several strangers at several different times helped me. Lali and I  were hungry but we  had no cash for the cash-only cafeteria so  they gave us  food  at no charge. We got lost,  but ran  into a security  guard we recognized who gave us directions. Getting lost meant I didn’t have time to stop for  gas for the rental car, but  Thrifty Rental decided to waive the fee and cover the gas.  It snowed, but we stayed on the road.  The Ronald McDonald House doesn’t take reservations, but we were able to stay  at the house  we wanted that was closest to the hospital.  Laelia was an excellent flyer and was well behaved through five airplanes! That in itself is a miracle! (And when we got back and I praised her in front of her father, Laelia beamed with pride.) I had a vertigo episode so bad that I fell over during Lali’s PT appointment, but that was the only bad one the whole trip and it was in a safe place!   Laelia would not sleep at all, so we ended up leaving at 3:00am our last night there because we were up anyway. We would have missed our flight if we hadn’t since we got lost, the elevators at the airport were broken and the flight was at 6:05am!

Pretty much lots of things just worked out. If I had written them all down, I could write a whole book of blessings! Our needs were met again and again. Our comforts not always, but our basic needs were covered.

I had  a sore throat, vertigo, stomach cramps (diarrhea and vomiting), a headache that only got worse when I got home, and stress and dizziness caused by lack of sleep while on this trip. I  didn’t sleep more than about three hours in four days. So this was a hard trip.  In fact, I got so sick the night before our appointment that I stopped up the toilet in  our room to the point that we had to switch rooms!

And the whole while  one special little girl refused to  let me sleep; she was too jet lagged and excited.  (She would not sleep the next night because  of pain and discomfort.)  I yelled at her once. I said–and I remember it exactly since it’s the second time I’ve ever yelled at her–I said, “I’m SICK and TIRED of YOU!”   Since then if I’m down or frustrated Laelia will  ask me, “Mama? Are you sick and tired?” It breaks my heart.

I  tried Lali in the bed with me, Lali in the other bed, Lali on the floor and even Lali in the closet! Nothing worked. She would not sleep. Finally in the middle of the night (around 3:30am) Lali asks me, “Mama, will I go to Heaven like Grandma if I die?” Okay now I was wide awake. I told her she wasn’t going to die, she was just  too sleepy and needed to get lots of sleep. (I was very desperate for sleep.) But she asked again, “Will I be with God if I die?” Sure honey, just sleep now. But it seemed to bother her so I cuddled her close under my chin, her fuzzy hair going up my nose, and said that she was God’s most loved kid. Then when it was clear she would not sleep I told her her favorite story of Adam and Eve. I told her how God created  Adam and Eve  and how good they were and how he loved to hang out with them and how Mama is sure they always went to bed on time and slept through the night. :)  Laelia loves to chime in that they ate the fruit when they weren’t suppose to and that’s called sin. And sin is “anything we think, say or do that makes God unhappy.” (Insert Laelia’s sad face here.)  And how sin pushes God away (insert Laelia pushing me here)  because God is holy. Then I resume my story once I get it back and add that God caught them in the garden of Eden all naked and ashamed so he sacrificed an animal, using its skin/fur  to cover their shame. And how the punishment for sin is death so people used to sacrifice animals to cover their sins temporarily. But how Jesus was called  “the Lamb of God who takes away the sin of the world.” And how he died in our place, to take our sin away in the same way. Then he rose from the dead. So Laelia said, “Jesus died for my sin like a lamb! Now I can be with Holy God!” And she accepted Jesus as her savior with all the passion of a three-year old trying to get out of bed time.

Before we realized it, it  was morning and we’d gotten zero sleep. Time to drag ourselves into the snow for cast removal, AFO fittings and a very special, life-altering (although we didn’t know it at the time)  doctor’s visit.

Our insurance change slowed the whole process down a bit. Cast removal was a dramatic event. Laelia screamed louder than I have ever heard her scream before. It was unnerving. And the screaming lasted as long as the cast removal, a whole 20 solid minutes since they had to saw around the bars. Then we were on to x-rays.  These were  the first x-rays she ever took in her whole life that she didn’t cry/scream through. (Small victory!) Then off to  her AFO fittings. That took forever. It was at this point that we realized no one had a small child’s potty for her to go number two in. And she was afraid of the adult toilet because she could fall in. So she had to go number two in  a diaper while waiting for the AFO guy, which embarrassed her a bit. When we finally got to our doctor’s appointment, AFOs in hand (well, on feet) it  was after lunch.

We briefly met Zak and his daughters, one of which is Grace who has AMC, and the Nalle family whose blog I follow. The Nalles adopted Aaron and this was their second trip to Philly–their first casting. Poor Aaron.

Then we finally got to see Dr. van Bosse. Even though he was pleasant as always, we were hit with a life changer. Laelia needed a lot more than what she was getting. She needed two PT appointments a week with a professional. She needed stretches and exercises several more times a day. She needed weight bearing. She needed her feet stretched. And if we couldn’t get these things then we needed to start contacting our local government. We could no longer just do PT and OT once a month because it cost $80 a visit. If she is going to walk, we needed to step it up.

Well I work full time so that creates an issue. Her school won’t do a darn thing, not even simple stretches. It’s a mess. Dr. vB also mentioned that if worst comes to worst I could have her bused up to Los Angeles to get free PT at the Shriners there. That would literally be  six hours away from home twice a week.

And on top of it all, it was going to be a painful time for Lali. Especially the first two weeks.

My husband and I aren’t always graceful in how we handle all this stress. Charley once asked me once I got home  to stop doing Laelia’s stretches in front of him because he couldn’t take it anymore. Laelia’s pain makes us crazy. And I get so upset with how everything has to be so much harder for her. She can’t do simple things seemingly everyone else on the planet was born doing naturally without huge effort, surgery and pain! It sucks! Laelia says, “Pain is good because it means I’m getting better.” At least one of us has a good attitude… when she’s not screaming.

And I’ve been dealing with her preschool as well. They are a government-run facility, meaning they can’t “quit me.” But the head admin there  can be the least amount of understanding as humanly possible to make our already miserable lives even more hard. It’s willful ignorance.

So life has changed, and life is hard, but we continue on. Our beautiful daughter looks at herself in the mirror often and stares at her straight new legs while smoothing them with her hands. I don’t think she gave it much thought before, but she now thinks of herself as very pretty.  And she  is.  

We weren’t given bad news in Philly, but we were handed change. And that’s always hard. I hate change. It makes me feel out of control. I like things to stay the same. But I know if they did then  my daughter would not  have her lovely straight legs. I just need to focus on the positive.

Maybe I’ll go  buy a shopping cart and then just spend hours putting my daughter in and out of it. Just for the fun of it. :)

4 Responses to “New Legs!”

  1. Laura says:

    Wow! I just read this blog entry and the one chronologically after it!! so…. ~HUGS!~ I commiserate with you! Change is terrifying!!

    One change that I can think of that was super hard for me and my mom to go through was me moving away to college. Normal people take a couple days to move out at most. It took me a week. My apartment complex strung us along for a week. We had told them I needed to move in early to have time to set up caregivers before school started (something I was very new at – interviewing, hiring and firing) but they hadn’t even finished modifying my apartment by the day I was supposed to move in. So we had to move into a different apartment. Even though we had people set to help us move in. Which meant we’d be moving all my heavy furniture to my real apartment without help. Then my door lock malfunctioned (they are like hotel door locks here) so we couldn’t go anywhere because it would automatically lock and then we couldn’t get back in. And then I found out that any new caregivers I hired would have to pay nearly $50 just to get fingerprinted. By the end of that week, my mom was at her breaking point and crying on the maintenance guy’s shoulder (she was staying with me while I hired caregivers). And the list goes on, but I have forgotten most of it now. I was terrified and I had no idea of how anything would, or even could, work out.

    So I feel for you. I haven’t experienced the exact same changes. But I definitely know how it feels, when one minute everything is going great and the next it all comes crashing down, and demands to be put back together.

    I have kept the 3 of you guys, and especially Laelia, in my prayers, so hang in there. A song that might cheer you up is Hold Fast by MercyMe. My heart really goes out to you guys! <3

  2. Megan Lee says:

    Thinking about you, Alexis. I’m praying that this rough patch will pass quickly. The new legs are beautiful.

  3. Cheryl Schalk says:

    Alexis, I am so happy for you and at the same time sad. It is very unfair that everything is so difficult. I think God was with you on all the little things that happened to get you there. He’s great that way. I am wondering if Lali is on an I.E.P. and does California have a state program for kids with medical handicaps? Ohio does it is called Bureau for Children with Medical Handicaps and is not medicaid. Just curious as to whether you have this resource. I love your family.

  4. Colsons Mom says:

    Oh my gosh! Just read the 1st paragraph and had to comment – Colson’s legs get stuck in the shopping cart too! It requires 2 people to get him out. I’m catching up on the aftermath of Laelia’s surgery so I know what to expect with Colson. It looks like she did FANTASTIC, and your blog is so encouraging! Thank you for it :)

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