This is Laurel. Her birthday is in August.

When they asked “Laurel” to pose for this picture, I’m sure that smile she gave betrayed her hope. Why else would they take my picture? They must be looking for my family! I know for a fact that hope starts to run thin near the finish line. There’s no family in sight. Not yet. And that’s a problem. Because Laurel is 15, and that’s the worst age to be with no family in site.

When I turned 16 I got my driver’s license, my first boyfriend and my first surprise party from my friends. It was the best year of my life. I looked forward to it with delight. Laurel thinks ahead to her 16th birthday with dread.

In her country upon her 16th birthday two things happen: 1.) Laurel becomes no longer available for international adoption and 2.) she is placed in an adult mental institution where she might be confined to a bed all day, everyday for the rest of her life OR she will be out on the streets, forced to beg or her body to be used.

If you read this blog at all you don’t have to guess that Laurel has huge potential. You don’t have to wonder, “Will she be independent? Will she be mobile? Will she talk back to me like she knows everything?” Yes, of course. She has my daughter’s body, and my daughter’s mind… if it had been drug through years of living without a family to stimulate her. She’ll need encouragement and family love. She’ll need to feel safe. She’ll need maybe a little more time with Mom than other kids before leaving to start her own life. But her life could be wonderful. Or it could end. In August.

I almost want to say Laurel has six months to live. And even though she’s not dying, it’s a true statement. Her life will end and hope will be gone in six months.

I learned today that a new $1,000 grant is available on top of anything raised through Reece’s Rainbow. My family is throwing in our fundraising efforts as well. If you are hesitating because you cannot afford an international adoption, then come up with another reason. We will help you. You’ve got us in your corner. Our son is in that part of the world for crying out loud! Laurel has us choked around the heart! In fact, there’s a group we’re apart of called Bring Hope to 12 in 2012 who have promised to throw huge fundraising efforts towards this child. She’s one of their 12, and will be the focus of interest for the entire month of February. Don’t worry about the money. We’ll get it. I know it.

Worry about the child. Is she yours? Right now only a family can save her. Just because she ages out of being eligible for adoption in, what, late July? does not mean she becomes an adult with any rights. We cannot send her a plane ticket and have her move in with us. (That was my hair-brain plan upon learning about her.) No, her fate is sealed. She needs rescue. Because of a terrible situation, a ridiculous system and some downright unintelligent rules she’ll be lost in a matter of months!

This is an emergency. Please share her link (http://reecesrainbow.org/26309/laurel) all over Facebook, Twitter and blogs. Share her story with the world. Help us find her family. I would consider this a personal favor to me. Thank you.

Time is running out.

Future Doctor

We are back from Philadelphia with a princess in full leg casts. For those of you following the story, our daughter had surgery on both knees to try and straighten them. (Because of her arthrogryposis her knees are stuck in a bent position.) They did some releases in the back of her knees to straighten them as much as the contractures would allow, then they inserted eight plates into the fronts of her knees to stop them from growing. That way when the back of her knees grow, but the front of her knees don’t, it will straighten the knees over time.

As most of you already know we almost didn’t have surgery last Wednesday. In fact we were ready to go home every day we were there. And people were praying. Lots of people. And everything worked out. But it worked out in this miraculous way.

When I was a little girl I read this boring biography of Hudson Taylor. (Note: NOT boring if you’re NOT ten years old and it’s NOT required reading.) He’s the guy who prayed a lot and God provided, often last second or in a way that would make a good movie. Our last week seemed like that.

For reasons we cannot share yet, we needed this surgey to happen now. We had no idea what God was doing by delaying it. From all we knew it couldn’t be delayed or a lot of things would go wrong. So all we could do was pray this was happening for some great reason half the time and beg the surgery would just please work out the other half of the time. You see our daughter had a cough.

Thursday night I was lifting Laelia by her stomach and she coughed. But it wasn’t just one cough. It was a coughing trip. I thought I had squeezed the wind out of her or something. Then she finally said, “I just coughed like So-and-so at school!” Needless to say I yanked Laelia out of school the next day, cancelled the bus and mailed the form I was suppose to send with her that day. She had a very slight, occasional yet persistent cough all day.

Our good friends have a son who has the same condition as our daughter and who also fly the same 3,000 miles to the same doctor in Philadelphia. He had a cough once before surgery. He was fine and then the night before coughed just a couple times before surgery. That was all it took and his family was sent home to California. One slight cough and surgery was cancelled. Now Laelia had one slight cough. This was bad.

Saturday morning I called up Shriners to break the coughing news. Turns out I needed to run this by the anesthesiologist but they weren’t in on the weekends. I talked to a few people, was transferred six times, and finally the on call/charge nurse said to come on over. 3,000 miles and three airplanes over. So we did. And we prayed.

Sunday morning rolled around and we boarded three planes with the coughing monster. The weather had changed and we had hoped it was just allergies. She never had a runny nose or watery eyes or upset stomach or fever or sore throat or anything else. And she would be happy and hyper and fine and then once an hour double over and cough her head off. And it was a cough with a little something going on. Not a dry one. But still I’d forget about it until she’d do it!

Monday our appointment was at 2:00, but everything at the clinic ran late and we didn’t end up seeing anyone for three hours. Three hours! Finally we saw the doctor, his fellow and the nurses and told them in person about the cough. I guess no one I had spoken with on Saturday had passed the word along. At first the surgery was cancelled, and we started making alternative plans (that sucked). The nurse coordinator outright told us Laelia would not be getting surgery. It looked like Laelia and I would have to live in Philly for several weeks at one point. But they had to get the anesthesiologist involved for the final determination. Being after hours (now almost 6:00 pm), we had to come back the next day when he’d be around. So in other words, because of our late appointment we had one more night for the cough to get better.

And it didn’t.

So Tuesday morning she woke up coughing this horrible cough. She saw the anesthesiologist with the cough and he had her cough several times while listening to her chest. She was borderline with no other symptoms and even though we could hear something in the cough, they couldn’t hear it when listening to her chest. He had to pass us along to the head anesthesiologist who would make the determination on whether or not we’d be having surgery. Right before we met with him she coughed this wet, awful cough. We planned to pack our bags home that afternoon and try to get flights back that evening.

Then we met with the head honcho anesthesiologist. He asked her to cough. She didn’t want to. He asked her again. She coughed for him. And it was this beautiful dry cough. Then another beautiful, dry cough at his request. Then another! She didn’t cough again through our entire appointment with him, including a trip to the PICU for surgery instructions. I thought she was cured! It was a miracle!

As soon as we left the hospital she started back up coughing again. It was like everything she’d experienced for days was just put on hold until she could pick it back up again when we left. The same ugly cough was back! Surgery was scheduled for the next morning at 6:30 a.m. She had one more night to stop coughing or it would be cancelled. But at least we were no longer going home that night. We held out hope it would just go away. Maybe she would stop coughing!

Of course she kept coughing. She coughed all night. I couldn’t give her allergy meds since we may have surgery the next morning. I just waited it out with her and held her hand. I didn’t even know if I should prep her for surgery and scare her needlessly.

I had a very small panic attack that night which defied logic because I was ready to go home and at peace with surgery being cancelled. My panic was obviously not listening to how rational and peaceful I was. Charley noticed I wasn’t breathing and his reaction to that was to hug/smother me. I’m lucky to be alive.

(Note: I’ve never had a panic attack in my entire life. I think this was brought on by being woken up in the middle of a nightmare about not breathing and then my heart was already racing so fast it was just downhill from there.)

We arrived at the hospital at 6:30 sharp (3:30 a.m. California time) and she coughed in the waiting room. Once again I mentally packed my bags thinking we were going home.

Then she coughed up the elevator and through her dress change and during her vital checks. In fact she coughed up until the anesthesiologist entered the room. Then she was fine, as if she’d never had a cough in her life. And it was his decision to proceed with surgery after checking her chest for the tenth time.

It was like something out of a movie. If I had reached the right person who told me to stay home when I called Saturday night there would be no surgery. If our appointment had not been three hours late and I’d met with someone who listened to that awful cough on Monday there would have been no surgery. If she had coughed during our Tuesday appointment with the head anesthesiologist there would have been no surgery. If she had coughed during OR prep for the anesthesiologist’s final check then no surgery. When it really mattered, she became a perfectly healthy kid. But the rest of the time she was coughing!

Surgery went well. She opted not to have the knock-out meds and waved goodbye with such bravery as they wheeled her into the OR. She admitted she got scared and cried when they put the mask on her face, but overall she was very good.

Back in the waiting room I let out a breath I’d been holding for six days. I was relieved for a brief moment before it hit me that my daughter was in surgery. But five hours later and she was out. Her epidural had worked, her cough had cleared and they had gotten a few degrees of range in her knees! In the coming two years the plates in her knees will hopefully get her even straighter!

No cough!

Epidural working!

One of the first things Laelia said after waking up from surgery was, “The next one to have surgery will be my brother. I’m gonna hold his hand and make sure he’s alright. I’m going to give him his medicine too!” (She seemed a little thrilled with that thought so I gave her a look. She quickly amended,) “Because I love him.” Someone is happy that this is her last big surgery for a while.

The first day after surgery everything went right that could go right. Everything. Then the day after that things went wrong. Laelia’s epidural had slipped a bit. The doctor recommended they pull it out and see how she did. We’ve made some stupid decisions before, but this one had two hard days of consequences to it. She was in constant pain. And they threw every medicine they could think of at her. She had IVs in both hands and was on morphine, Valium, Tylenol, Codeine, something for the itching, something new for the panicking and something strong to help her sleep. As the first hard day progressed and they could not get on top of the pain they finally started doubling all doses. She went 35 hours without sleep because of pain. She made the nurse cry. She made us cry. She was darn pitiful. Finally, since she was eating, drinking and pooping, I asked them to discharge her and we would be right down the road and come back if there were any problems. We took her back to the Ronald McDonald House. Just being outside the hospital worked wonders. She got her first real sleep and so did we. Four solid hours. She woke up a new girl!

For as hard as her recovery has been, it is not as hard as the surgery she had a year and a half ago when her epidural failed. That was much harder.

Sunday night we took two long plane rides home. We’d only been home about twenty minutes before she threw up all the contents of her stomach, including her pain meds. She had a painful, sleepless night last night and a painful morning all morning. I finally snuck enough pain meds into her food to get her resting again this afternoon. She is refusing pain meds and it’s hard to get them into her! It’s my four year old verses my sanity! She cries and cries that her legs hurt, but when I offer her pain meds she won’t take them and spits them out. Also they have me doing physical therapy with her already (if you can imagine this please say a prayer for me and for her) so just add that to the torture. All and all it’s been a hard week.

But we knew it would be bad going into it. What we didn’t expect was any of the good times. It was downright thrilling to have to make the pediatric crutches Laelia uses longer because she had gained a couple of inches overnight! Laelia was also praised for being the sweetest little thing in the PICU. And she was so diabolical even through her pain. She had a speech about what hurt and what she wanted done about it that she threw at anyone entering the room–even the janitor! She directed her menu like a queen. When she was transferred out of the PICU she had me first take her to every floor of the hospital on her way to her recovery room so she could tell them all that she had just had surgery in an attempt to get presents out of the Shriners staff who seem to always walk around carrying goodies. (If it weren’t for all the medical stuff this place would be Kid Heaven!) She walked out with a monkey from the OR, a bear from PICU, a doll from the therapy floor and a doggie from somewhere. It is a privilege to be this little girl’s mommy. She is a joy!

Today Laelia stood up tall by herself with the help of crutches and her casts. She looked at me and asked through gritted teeth, “Mama? Am I tall enough for the big rides at Disneyland?”

That little player is determined to get a trip to Disneyland out of this thing too.

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.

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. )

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.

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! )

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.)

-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.)

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.

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.

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!