Archive for May, 2012

The history of Laelia’s knees

Wednesday, May 23rd, 2012

The history of Laelia’s knees.

Once upon a time Laelia had bent knees. (Bent = flexion.)

We tried serial casting, daily stretches and finally KAFOs (knee ankle foot orthotics)  to try and straighten them out.

When we got down to 45 degrees flexion she was able to stand with KAFOs!

Even as we stretched her nightly and the KAFOs pushed her legs straight, those  stubborn  knees were still stuck in 40 degree flexion.

Then Dr. van Bosse did Laelia’s knee surgery to make her knees straighter. (Straight = extension.)

The surgical releases allowed her to gain about 15 degrees of extension overnight!

Still I was a little disappointed that her stubborn knees were still a bit bent.

But with the eight plates inserted we watched her very slowly gain a few degrees of extension every month. This picture is just two months after surgery!

Then last night at dinner I watched Laelia push her knee down to 0 degrees.

That’s perfectly straight.


Now I don’t have a  goniometer, but that looks like 0 degrees to me!

When she let go it was still within 5 degrees of perfectly straight!

They still bend a little when standing, but we are very happy that in three months we’ve gained almost ten additional degrees of  extension  with the eight plates! That’s amazing!!!

Praise God!

Thank you Doctor van Bosse!!!

I love it!

(Click on this picture to make it bigger and more readable. You don’t want to miss this!)



Our family minus one

Tuesday, May 22nd, 2012

Our family.

We are traveling to meet our son in  about 7 weeks! Can’t wait to have two little cake faces! Charley’s lap looks awful empty. ;)

AMC friends

Monday, May 21st, 2012

This week we got to hang out with some awesome AMCers… and one bunny. :)

Laelia and Luke.

We got to go to Luke’s grandma’s house and hang out and play! I’ve got to say I love this family! We had some great conversations and a very nice time! (And Sarah can babysit anytime she wants!) Luke is adorable and has made me completely baby crazy. :)

Then yesterday we drove up north for a party!

And here’s Easton, the Birthday Boy!

Here’s us and Elliot’s family hanging out on the grass.

He wouldn’t let her hold his hand, so she grabbed his sleeve and yelled, “I got him, Mama!”

Cool presents!

Buddies Teresa and Laelia share secrets. :)

A plane went over! Look how cute they are!

Elliot, Easton, Laelia and Mikaela  all have AMC!

Their favorite thing was when Angie stepped over them. :)

Laelia LOVED the bouncy house!

My daughter is a lizard with a deadly tongue. ;)

She did this the entire way back. :)

We so enjoy hanging out with our AMC family!

Mama’s story

Monday, May 14th, 2012

I just have to share something totally amazing that happened today. It wasn’t Laelia gaining a new ability, even though that’s been happening a lot lately. But I’m talking about something personally cool. For me the Mama. (My name is Laelia’s Mom… I mean Alexis. Hi.) Okay this amazing thing  needs a bit of back story. Hang with me, it will be worth it! (Or at least it was really cool for me.)

Eleven years ago I traveled to Egypt and Jordan. I saw the pyramids and Petra and the Dead Sea. It was amazing. But maybe I’m going too far back. Let me start over.

This last week my dad and Christina came down to help us fix up the house. You saw the pictures of Laelia and Roland’s new room in the last post? Well my dad built that bed and the night stand and made a 36 inch crib fit in a 34 inch space by taking it apart and putting it back together again. And he fixed our shower (that my darling husband cracked) and built anything from Ikea that confused me and put up a giant mirror in the dinning room. Oh and they bought us a grill. Here’s a picture of Laelia helping Grandpa set it up. She’s reading the directions upside-down because she’s that good.

So where am I going with this? Well one project I got done while Christina did Laelia’s walking therapy and dad fought with my shower is that I got to set up a bookcase (*cough* okay dad set it up) and decorate it.

Decorating one bookshelf sounds simple enough, but I went through boxes and boxes of pictures and other goodies to fill it up just right. It took me all day and I left a big mess that my scavenger cats pawed through all night.

Ta da!

The top shelf is my husband and me… and our embarrassing prom pictures. WE WERE BABIES! The second shelf is our family picture (soon to include Roland). The bottom shelf is all our photo albums. One up from that is a shelf of Laelia stuff–a photo album, splints, hospital  bracelets, baby footprint (once they were corrected enough), baby handprint (once we could spread her fingers), orthopedic shoes, etc.

Then there’s that middle shelf. I decided to put some bits and pieces of my world travels there. A long time ago this Mama had some wild times.

Eleven years ago I went to Jordan. Even though I lived there for a few weeks, the only real souvenir I have from Jordan (besides pictures) is that awesome stamp collection on the right.

This is something I got ELEVEN years ago. That was well before I was married and well before I had a child with arthrogryposis and another on the way with arthrogryposis.

I got this souvenir during a young and interesting time in my life.

Let me back up one more time. :)  Just the other day I was thinking about how things in my life seemed directed towards me having these awesome kids with arthrogryposis. I mean, I’d NEVER heard of arthrogryposis before my daughter was born. Even after I’d heard of it I couldn’t pronounce it for weeks. But lots of things prepared me for my children. Like the fact that I worked in respite care for a child with DS and then later in life used respite for my daughter. Or the fact that I was a special needs aide in a public school and now my daughter has one of those. There are just a ton of things in my life that have led me, silly ignorant me, to be a well-equipped mother for my daughter and son. It’s amazing. It’s as if my life has been directed all this time without my knowing it.

You see I truly believe in the eternality and omniscience  of God. He knew I’d have a daughter with arthrogryposis. He knew that was coming. He knows the end of things before the beginning takes place.

“Only I can tell you the future before it even happens. Everything I plan will come to pass, for I do whatever I wish.” –God (Isaiah 46:10 in the New Living Translation)

“It is beautiful how God has done everything at the right time. He has put a sense of eternity in people’s minds. Yet, mortals still can’t grasp what God is doing from the beginning to the end.” –King Solomon (Ecclesiastes 3:11 in God’s Word Translation)

Now let’s go back to my Jordanian stamp collection. Check out that stamp in the upper right hand corner.

Notice anything? Club hands maybe? Club feet?

That my friends, is a boy with arthrogryposis.

My eyes lingered there because that’s how my daughter stands.

Then I recognized it from the back cover of my  arthrogryposis textbook  and gasped.

I was in the middle of an  important  conversation with my husband, mid sentence, and I gasped.

The Italian painter, Jusepe de Ribera, painted this in 1642. Jordan put it on a stamp. I bought it.

I bought it the year my mother was killed. The same year I ran away to the Middle East to try and distract myself from the pain. I ended up with people (American people) who were emotionally, verbally and physically abusive. Oh and I got back from the Middle East right in time to watch the World Trade Center go down. 2001 was a hard year. Even then in the darkest year of my life, God saw me. He saw me and he knew life wasn’t over like I thought it was. New life was coming. And she would look just like the picture in the stamp I  flippantly  bought.

Then just when I needed to see it, to prove that arthrogryposis existed outside my small world, there it was.

Cool, right?!


Laelia and Roland’s new room!

Monday, May 14th, 2012

Grandma and Grandpa stayed with us this last week to help get things all nice and pretty for Laelia’s baby brother who is coming this summer. We talked about where to put him and decided to put him in Laelia’s room since he’s coming from an orphanage where he’s used to (and comforted by) sleeping with other kids. Once he’s ready we’ll move him to his own room. In the meantime Laelia has been super excited about having her baby brother in her room.

If you saw the last blog post you saw the state of Laelia’s room. We’ll call that the before picture. What you can’t see in that picture is that  buried  under all the stuff is a cute little girlie room with pink items everywhere. Laelia’s favorite color is red, which conveniently doubles as a “boy color.” So over the course of two days I got out a small can of red paint (a very unforgiving color when spilled) and went nuts. Slowly we went from pink to red. (Hoping to switch the maroon curtains with something either true red or neon green down the road.) And here are the results!

The crib is off to the far right. I painted all the dresser drawer knobs red. :)

Switched out the pink  baskets with red ones. I also painted the mirror edge and the top of the plastic bin. Red red red!

Roland’s crib. My first attempt at painting letters from stencils.

My dad installed a ceiling fan because this place gets REALLY hot. I made it red. :)

Here’s a video of her red room:

And here’s Laelia enjoying her new room! Awwww!

Laelia loves her new red room!

Grandma Joy

Sunday, May 13th, 2012

Hi Grandma!

My name is Laelia. We’ve never met but I’m your grandkid!

 My name is pronounced LAY-Lee-Uh.  When mommy thought it up she showed it to her family to make sure it was  pronounceable. They all pronounced it fine. Little did we know that a litany of medical professionals would have trouble with it. Blame Grandpa, a.k.a. Mr. Can Pronounce Things.

Oh right, and I have arthrogryposis multiplex congenita. It’s the amyoplasia type. It doesn’t affect my vision. The glasses in my photo are daddy’s. But it does affect my ability to put them on. This was a triumph for me.

This is my daddy!

Yeah it’s the guy you picked out for mommy’s sister to marry. The guy you picked out for my mommy was never going to happen. Sorry Grandma. But your other daughter did marry that guy’s best friend. So you weren’t far off. My mommy threatens to be as embarrassing about boys as you were. I’m afraid.

But anyway, I wanted to wish you a Happy Mother’s Day!

I’ve been wishing all women a Happy Mother’s Day all weekend, including teenagers. So far no one at the mall has corrected me.

I went to Cubbies this year. I know you would have liked that since you were an AWANA leader for years and years. I may do Sparks next year, but next year they do racing games and I don’t know if that will be up my alley. But I enjoyed Cubbies very much so we’ll see!

Oh and my mommy wants you to know that all your Sparkies sang the song you taught them, hand-motions and all, a week after you went to Heaven at their AWANA awards ceremony.

I ask a million questions all the time, so eventually I figured out that you went to Heaven right after Mother’s Day on May 15th.

I found this out after I learned to walk.

I started really walking at four. One of the first things I did was walk right into the road. My mommy got really upset. That’s when I learned cars can hit people and then they go to Heaven, just like you did.

We talk about car and road safety a lot. This is my new car seat because I’m such a big girl. I take a lot of trips to a place called Philadelphia and this is easy to ride in and easy to carry!

Um… These are my balloons. It was very important that I show you my balloons. Very important. Here they are.

This is how I like my room. Mommy said it would look familiar to you. I do believe you told mommy to have a child just like her and this room is a result of that. ;) I pulled out all the books and puzzles and blankets myself! The very first time I did this my parents were so happy that I was so mobile! Now they are less thrilled.

This is my grandma Christina! You would have liked her a lot. Mommy told me how before you went to Heaven you told Grandpa to marry someone good. She makes birthday cake. So obviously Grandpa followed your instructions.

She’s holding Levi. He’s my only cousin. But you have more than two grandkids… you are going to have THREE!

This is my baby brother. We get to meet him in eight weeks. He’s not little like this anymore, but we don’t have another picture of him! He’ll be two in October. And I’ll be five in October! I’ve been promised a giant double birthday party. With cake.

Roland has two moms! One gave him life and the other will give him love and a home. It’s just like I have both you and Christina as grandmas! One to make me possible and the other to give me love and a family.

I’m a very happy kid. You’d like me.

Happy Mother’s Day, Grandma!