Archive for January, 2012

I walked outta there.

Wednesday, January 25th, 2012

It’s been fun watching this go viral among our AMC family on Facebook. :)

Picture by Chelsea Powell

Words by Tracey Schalk

Edited by me

<3

My pretty girl

Tuesday, January 24th, 2012

My pretty girl.

Doctors told us ugly things.

Then we met this guy.

And started doing lots more PT.

And OT!

And proved them wrong.

 

Now we’re leaving this Sunday to fly to Philadelphia for knee surgery on February 1st.

Which means no more knee standing for a  while.

And pretty girl goes back into casts.

And we’ll see lots of this face.

But in several months when all is said and done she’ll be able to do this:

(Photo credit.)

And *maybe* this:

(Photo credit.)

And why the heck not:

(Photo credit.)

Well, okay she’ll be able to walk better and have straighter legs. :)

Did I mention we leave this Sunday?!?!!

We need this:

(Photo credit.)

(But I’m tempted to make that last picture someone sleeping with chocolate in one hand and heavy medication in the other. :))

Scared

Wednesday, January 11th, 2012

Hey everyone. I just cuddled my daughter and put her in bed. She’s happy and healthy right now. I miss her already and wish she wasn’t sleeping. I’m tempted to sneak into her room (it’s midnight) and wrap her up in my arms.

In three weeks she’s having surgery. And from everything I’m hearing it will be hard surgery. I just spoke with two moms tonight that regret having put their children through  the surgery, not because it didn’t help, but because of the pain issues. It left me feeling awful.

Please pray for us. Pray the pain issues are under control for the next year. Pray that these pain issues don’t make my husband into a shell of a person. His little girl has him wrapped around her finger, and I’m strong enough until my husband crumples. Pray for the three days after our February 1st surgery. Those are the hardest. Then pray that the months afterwards will be okay as the plates and screws in her knees do their job. Pray for healing and that the whole thing is worth it. We can’t leave her like this–she needs those knees straight. But I’m scared.

Thank you.

Our fundraiser!

Friday, January 6th, 2012

<<<UPDATE>>>   Our fundraiser was a success! We raised the entire amount! Thanks everyone!!!

 

Okay for those of you who don’t already know: We’re adopting a little boy!  Laelia is going to have a little brother!

If you’ll turn your attention to the right side of my blog you will see a big grant fund. Please consider donating! Or you can click here to donate.  (All donations are tax deductible.) We just found out we could be flying out to see our son as early as this spring! That’s wonderful because he needs medical attention! But that’s also stressful since we’re not fully funded. We need another $13,000.  Please  consider  sharing our fundraiser with people.

 

Below is copied and pasted from our son’s  blog:

 

Every $5 donation you make to Roland’s (“Joel’s”) grant fund gets you one entry to win! All donations are tax deductible!

Also! If you share our story/fundraiser on Facebook you get another chance to win!

Also! If you have a blog post from your blog devoted to Roland’s story you get two additional chances to win!

The winners will be chosen by random.com on January 25th, 2012 at 9:00 p.m. PST.

You MUST comment on this blog OR shoot me an email at rolandquest@gmail.com and let me know how many  entries you get! I don’t want you to rely on me being observant and stuff. Just  a quick, “Hey I gave $10 and shared on Facebook!” or “Hey, I put you on my awesome hardcore guinea pig racing blog!” would be perfect!

Our first prize is already unlocked!
Our second prize is now unlocked!
For our biggest prize to be unlocked we need $2,000 more generated from this giveaway!

Our first prize is a $50 gift card! The winner will choose one card from the following: Starbucks, Benihana’s, Olive Garden, Red Lobster, P.F. Changs, 24 Hour Fitness, Michael’s, Target or Amazon.

(This prize is already unlocked and up for grabs!)

 

Our second prize is a 16GB iPod Nano Special Edition RED, product MC074LL/A. Worth about $330 on Amazon. This is a new, still-in-the-box product that sat on my donor’s shelf unopened for over a year. Now it can be yours!

(This item is now unlocked!)

 

The BIG prize is…

EITHER

A blog banner with custom characters for your personal or business blog by Lauren Burke of Burke Vector! (Yes THAT Lauren. She’s pretty famous apparently! :))

Example blog banner used with permission.
($2,000 from being unlocked!)

OR you can choose:

A Family Caricature Portrait to hang in your home (or put on your blog or Facebook profile or whatnot) done by Lauren Burke of Burke Vector! See the one she made for us back in 2009 in our About page! Or check out the sample family below!

Used with permission. Available on iStock.

($2,000 from being unlocked.)

A message from Lauren: “I am really looking forward to such a fun project for an exceptionally worthy cause! I can’t wait to meet the winner and get started. Let’s bring Joel (Roland) home!”
Click here for samples of Lauren’s work.

 

rules:

-maximum of 5 family members together in banner (photos are necessary for reference).
-The caricatures are designed to be together in one image (characters are not designed to be separated).
-from waist up
-maximum of 2 small revisions after the final design
-must take advantage of the giveaway prize within two weeks of winning.
-simple background elements (solid colors, simple flowers, polkadots, etc)
-simple text

Winner will receive a high-resolution file for printing OR a web-resolution file for their blog banner. (Standard/common blog banner sizes OR 8×10 family portrait size file for portrait in standard-sized frame.)

Good luck!

Laelia is independent.

Thursday, January 5th, 2012

Someone asked me to show pictures of Laelia brushing her teeth. She’s had to brush her teeth by herself for preschool since she was two. She would sit on the ground and use a big bean-bag chair to rest her arm on while brushing.  Recently we put a chair in the bathroom so she can stand on it in her KAFOs or kneel on it in her AFOs to reach the sink. She can reach to turn the water on and off too when on the chair, and uses the chair’s back to prop her arm.  Us parental super-geniuses just figured this out. We’d been holding her up to the sink for years. Ugh!! Instead of cupping our hand under the water we finally decided to give her a paper cup. She spits, grabs it with her mouth to put water in her mouth, swishes it around, and spits again.  She’s totally self sufficient!  I realize I’ve been too busy  and have just done it for her. No more! Super teeth brushing kid does it herself now!

Laelia’s newest responsibility includes watering her flowers. She has two flowers, one she got for free as a present from Home Depot on her birthday. She loves them. It got cold so we moved them close to the air  vent for our  clothes dryer. Now they are still blooming despite the  cold!  The school bus drops  Laelia off on the street every weekday afternoon, and she walks up our long driveway by herself (with her walking sticks)  to water her flowers before heading inside. (All supervised by me obviously.)  I know she over-waters them, but I can’t seem to tell her no. :) I love this mobile, standing kid!  A Mama  could get used to this. :)

Funny story: Laelia snuck up behind me the other day and shouted, “SURPRISE!”  It genuinely startled me! I jumped in my seat! Haha! I  had left her doing weight bearing (standing) at the table with a snack. To surprise me she had to walk to the other table, grab her walking sticks off of that table, put them on by  herself and walk with them across the living room to the den where she found me to surprise me! Wow! My kid is mobile AND sneaky-stealthy!

I don’t get work done in the den anymore when she’s home. :) Life with my daughter just got a lot more interesting these past few weeks. :)

Laelia stands up by herself!

Tuesday, January 3rd, 2012

Booyah!

 

January to January

Tuesday, January 3rd, 2012

As a New Year’s exercise I decided to see how far we’d come  in a year. Last January we had just had Laelia’s casts removed after the biggest surgery of her life. And her legs were in the correct position for the first time in her life. This was the surgery I’d heard about from two doctors (one in San Diego and one in Seattle) but they refused to do it for my daughter because to quote them both, “Let’s get  her in the best position for sitting in her wheelchair.” (From now on I’m going to respond to that with, “Let’s get your face in the best position for smacking.”) So we flew to Philadelphia to the “AMC doctor” (Harold van Bosse)  after many people referred us there. We got the surgery done, and it was successful in turning her legs the right direction. But  going for our follow up appointment in January was a life-changer.

There were  eight crazy things going on in our lives last year.

1. It was vital for Laelia to get  more therapy to maximize the  surgery results. Every time we went to Children’s hospital it was an  $80  visit. Our insurance had changed  so I lost my patient advocate/case manager. I started the months-long process of setting up California Children’s Services for free  OT and PT through their medical therapy unit. This meant I had to cut  ties to our expert OT and PT to do it as they would not allow her to see them  at all if we got into the  program.  It took  some paperwork and lots of hassle to prove Laelia had arthrogryposis even though one  glance will tell you she does.  I was told I did not qualify. Then another person said I did and to try again. I needed a doctor’s referral, but  the nurse   said I was stealing therapy from other poor children who this program was set up for. I miserably asked for it anyway.

2. Laelia’s feet were swelling and it was so hard to deal with the painful shoes. We thought Laelia’s foot was broken. She didn’t sleep through the night. Eventually the shoes cut a hole in her foot and it got infected. She was on antibiotics and the ulcer was hideous.

3. I was suffering from debilitating dizzy spells. I went to  several doctors, got an MRI and got my ears checked. Nothing. One vertigo attack (I’d call it a “spell” but that seems too mild)  was so  bad it sent me to the emergency room.

4. It became clear that I needed to stay home and do Laelia’s therapy full time if I wanted to get her walking. It was clear I would have to quit  my job but we couldn’t afford to.

5. We were carrying Laelia up several flights of stairs to get to  the front door of our apartment. (There were four sets of stairs from the parking lot down below, eight sets to reach the street above and our mailbox, and one long set of stairs to reach the bathroom once inside our apartment. This was not wheelchair friendly to say the least.)  Between our parking lot and our  front door  was a gate. I would go prop it open with a rock, go back to the car to get my daughter, and carrying her with  both my arms in a full lower body cast I would reach the gate to discover the manager had closed it and thrown the rock over the fence. He said he didn’t care why I was propping the gate open, propping it was against the rules. If I quit my job to stay home and do my daughter’s therapy we would not be able to afford to move outta here.

6. We were having major problems with discrimination at  Head Start on Home Ave in San Diego where my daughter did preschool. Even though it was government funded and had services for special needs children,  it was hard to work with the director.  The teachers were wonderful, but the director was not. They kicked  my daughter  out of school after she had surgery. The director said it was too much on her staff and complained that Laelia came back in a wheelchair and was sore. She complained my daughter  could not walk and was hard on them.  She finally put her hand on her hip, cocked her head and  said to  me, “Just tell me what you expect from us? What do you want us to do for you?” I had not asked for anything at this  point. It was an attack. I hated entering that building and was stressed out every time I picked my daughter up from school.

7. My daughter couldn’t  walk.

8. We found a little boy on an adoption website who looked just like our daughter. We started advocating for him. We were far from being able to care for another child, but I hurt for his situation. For all the hardships that were  going on  (our lives felt like they were falling apart), they paled in comparison to what he was  going through and what he faced.

~

Step into the New Year!

~

1. After a couple months we got CCS services set up. We have seen them twice a week for the last year. It’s free. We qualified for their MTU (medical therapy unit) based solely on Laelia’s diagnosis. (Which is why it had to be officially verified which took forever.) CCS also has  other programs and services for low  income children which we were not asking for. This explains why I was told we did not qualify and was harassed about stealing services from poor children.  Despite the hardships to get into the  MTU, it’s been a great experience and  Laelia has THRIVED!

2. Laelia got used to her shoes. Her feet are beautiful and straight. You can still see the faint red  circle of where her ulcer was, but it’s pain free. She started wearing KAFOs too and tolerates them. Every now and again she’ll have foot pain issues, but they’re nothing major.

3. I had one vertigo spell during  Laelia’s November pin removal  surgery and it surprised me because I had not had one in months! I haven’t felt one since.

4. My company gave me a work from home position. I have a routine where I do all of Laelia’s therapies at home and go to all her school/community meetings around my work schedule.

5. A lot of miracles worked out and we moved into our new home last April. A missionary team helped scrub it out. Volunteers from a local church put in a wheelchair ramp. My dad built a shower and installed a light switch and door mechanism that Laelia can use herself. We furnished the entire place for under $800 with used stuff and hand-me-downs. It’s huge and it’s beautiful. It’s home.

6. Laelia was the last special needs student that darn  school ever saw. The special needs program pulled out of there because, well, we all know why. We moved Laelia to the Head Start program off Balboa Ave. It’s been WONDERFUL.

7. My daughter now walks without a walker or crutches. She walks. Our jaws just dropped when she took her first tiny shuffle steps in August. Then a couple months later she had a walking party to celebrate. Then a couple months after that she turned away from me and walked off without a walker or crutches. My child walks.

8. He was our son. We’re adopting him. But without the top seven miracles working out we would not be in a position to rescue him.

Wow, what God has done for us in one year is amazing. It’s incredible. And it’s a ton. And it’s exciting because I get to see a bit of what had to work out, all the things that had to get better, for us to bring another child with arthrogryposis home. The pokes were painful, but the  needlework is beautiful.

Happy Holidays!

Sunday, January 1st, 2012

We had a great Christmas and New Years! Here are the random pictures. Most of these pictures  were taken by other people  after our camera broke. We have bad luck with cameras!

Playing the piano.

Jumping rope. (Even though Laelia can’t jump yet.)

Making shapes.

Playing with Grandpa!

Getting ready to open presents!

After our 8 hour drive up to San Jose.

Showing off walking for Grandma and Grandpa.

Laelia’s cousin Levi steals her parents for  a bit!

Laelia’s cousin Abby!

Food!

Cousins Abby and Gracie!

Playing spoons. Laelia’s mommy being super competitive. ;)

Daddy cuddles.

Look at these goofy two!

Grandparents holding  two  of  their three  grandkids.

Family!

Grandpa cuddles.

Snake cuddles!