Archive for the 'thank you' Category

Walking down the aisle… the proudest mommy moment

Sunday, January 6th, 2013

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“The doctor leaned across my bed to break the news. He spelled things out and wrote them down. Every time he asked if we had questions, we didn’t know what to ask. We asked if she would be able to walk. He said he didn’t know. I cried some more.” ~October 4th, 2007

“I have a physically disabled daughter. It still hurts to say that.” ~October 7th, 2007

“We went into Children’s hospital and our physical therapist looked like a teenager. [...] They only had two other children come through with Arthrogryposis and only one could walk. His (the walking kid’s) physical therapist said it was nothing she did either, he just could. It turns out that babies with Arthrogryposis that have the leg joints stiff in a straight, outward way are more able to walk. Of course our baby girl has the wide open legs and hope seems dim.” ~October 10th, 2007

“We had our first orthopedics appointment! We called ahead of time to see if they were closed for the fires. Then we covered the baby, held our breaths, brushed the ash from our car and drove through what looked like Armageddon. What felt like little drops of rain turned out to be tiny bits of ash from unusually dark skies. [...] We were getting casts that day. :) We decided to try and fix the club feet with the casts and stretch out the legs (knees).” ~October 25th, 2007

Charles: “We got Laelia’s casts changed again today. My wife asked the doctor how far the knees could get straightened out. We hadn’t seen a ton of progress, and we were wondering if her legs would be straight enough for her to walk. “Oh,” the doctor replied, “we haven’t been trying to straighten out her knees. Right now I’m thinking that she’ll be wheelchair-bound, so her knees are at about the perfect bend to accommodate that.” ~November 19th, 2007

“There’s no cure for what she has. There’s no way to grow the muscle that she lacks. I can’t even get all her parts looking the way they should let alone moving the way they should. And she’s working toward goals that fall short of even the basic normal functioning of typical kids. Right now we’re focusing on getting her to be “less special.” ~December 20th, 2007

“Okay tonight is when we find out how Laelia’s surgeries went. We will discuss braces or more casting and it will be decided split second without a sit down.. as usual. As for more casting, our physical therapist told us that she will not be able to straighten out Laelia’s legs with stretches or therapy, so we are going to request more casting to hopefully achieve that. Unless our orthopedics doctor has major objections or doesn’t think that will work.” ~January 7th, 2008

“They didn’t cast the legs straight. We were told she wouldn’t walk. Ever.” ~January 10th, 2008

“We switched orthopedic doctors today (Friday). This new one also does not believe Laelia will walk either, but actually explained the physicality behind that belief. So even if she were able to be straightened out, she doesn’t have the muscle to walk. Even if we did a muscle transplant, the muscle wouldn’t work. Even if we could get her to stand, she would not be able to do so once she got to be around 60lbs since she won’t be able to hold up her own weight and her muscles will not grow with her.” ~February 15th, 2008

“I was curious as to how a doctor’s note could be three pages long. But what I was reading was the doctor’s impressions and findings in detail. I read over, “…significant deformity…significant upper extremity involvement…certainly require surgery…not significant leg power…goals need to be reasonable…I suspect she will come to utilize an electric wheelchair…the need for good upper body strength to control walker was stressed [to parents] (as in she won’t be able to)…toes will require flexor tenotomies at time of posteromedial releases…all of this was discussed in quite frank detail with the family, trying to paint a realistic picture, though not be overly pessimistic.” ~March 16th, 2008

“The EMG showed extremely poor muscle tone. What we had suspected was now proved on a test. The muscles in her arms and legs are in extremely poor shape. I start to wonder once again how her life will be.” ~July 25th, 2008

“Sometimes I forget what normal movement looks like and am amazed at what my friend’s newborns can do that Laelie will never be able to do. She will move, but she will use technology to help. Of course by the same token, there are a lot of things that Laelie will do that none of her new friends will be able to do. Like move a wheelchair with her head.” ~August 18th, 2008

“Everyday during PT (physical therapy) I get discouraged by Lali’s lack of movement. Stupid arthrogryposis! Stupid amyoplasia! If I try to do her exercises she throws a fit and refuses to do much. I try to encourage her to move her arms and legs, but she will just lie there and cry. And I really start to think, Will my baby ever move?” ~September 14th, 2008

“Laelia may never walk. I was sitting on the couch today playing with my baby and it dawned on me that my baby is not looking like she will be able to stand or walk or lift her arms. Her legs never got straight, her muscles never fired up or grew. Her therapists mentioned that she was one of the worst cases as far as muscle atrophy that they had seen.” ~September 21st, 2008

“Even with all the muscle loss, she is able to roll! That makes all the difference in the world! Now I’m hopeful she’ll be able to get around her home as an adult by rolling or scooting.” ~November 21st, 2008

“I saw two callus doctors today, and my experience was not that great. One largely ignored me while smiling. The other thought I was in denial of the severity of my daughter’s condition and took the opportunity to tell me that Lali “has severe joint contractions and muscle loss that will NEVER go away,” and I needed to “deal with that fact instead of searching for new splints or braces.” Do not treat a child like their worth is the sum of their workable body parts. And that their worth of your time is the sum of their fixable body parts (of which you’ve determined my daughter has little).” ~January 30th, 2009

“When checking out at Target the lady at the counter asked me if Lali could walk yet. I just said, “Not yet.”  The lady looked so confused. “Well why not? Have you tried?” ~May 11th, 2009

“We found out at our last trip to the PT that Laelia’s body is still not in the position for standing. That’s what the two major surgeries were for so we’re bummed as you can imagine.” ~November 21st, 2009

“At PT the other day they strapped Lali up to a giant suspension machine and moved her hovering self across the room while she kicked out her little feet to keep them from dragging. She eventually got a rhythm going: right left right left. She looked in the mirror as she went by and exclaimed with so much pride, “Laelia walking!” ~January 28th, 2010

“Laelia can now stand on her knees for ten seconds! This is her biggest accomplishment to date! Doctors said she wouldn’t be able to do this!” ~February 26th, 2010

“[Flew to Seattle to see another orthopedic doctor.] He said she wasn’t a great candidate for this (osteotomy) surgery, and to wait six months to a year to see if we should do anything with her. He said that 90% of kids with amyoplasia were ambulatory (able to transfer and stand), but it wasn’t looking like Laelia was going to be one of those kids.” ~April 3rd, 2010

“Tomorrow we’ll be in Philly and the next morning we’ll have our appointment with Dr. van Bosse at Shriners. [...] I’m also not sure if I’m ready to hear the straight truth from the arthrogryposis expert on my daughter’s care.” ~June 16th, 2010

“Dr. van Bosse is now our orthopedic doctor!” He said my baby will walk! ~June 19th, 2010

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“Tonight my baby took her first steps. My baby can walk! My baby can walk! My baby can walk!” ~August 31st, 2011

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Then it just snow-balled…

In September of 2011 Laelia knee walked for the first time. On November 1st, 2011 Laelia used a walker by herself for the first time. On December 3rd, 2011  Laelia stood independently without holding anything for the first time. The very next day she took her first independent steps and crashed into a couch.

 

Linda and Phong became engaged 21 days later and asked Laelia to be their flower girl. The kid was walking with crutches but we had no idea how she would throw the flower petals. It wasn’t until August 2012 that Laelia started to walk independently for long distances without her crutches and was hands-free. We practiced holding a basket while walking. She fell. A lot. We kept practicing. She fell. Rarely.

Last weekend Laelia the flower girl walked down the white runner towards the waiting bridesmaids and groomsmen. She walked with confidence. No walker. No wheelchair. No crutches. No falling or stumbling. She held her basket of petals with one hand and tossed them down the runner with the other. Her movements were like a synchronized dance as each action swayed her balance.

 

 

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Laelia was suppose to walk to a specific place near her grandma, but instead she walked straight to me. (I was matron of honor and standing up front.) She grinned up at me with such pride in her eyes, beaming like the sun! I walked her to where she was suppose to be while whispering my own joy and pride into her ears.

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They said she never would.

She did.

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Thank you God.

*tears*

 

WE DID IT!!!!!!!

Monday, December 17th, 2012

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We did it!

A week early!

We reached and surpassed our original $3,500 goal!

We reached our $4,000 goal!

And we used up both our matching grants!!!

Thank you so much!

So so so much!

Of course they still need a few thousand more.

Go here to donate towards the adoption of Laelia and Roland’s cousin!

And to reward you here is a picture of my kids cuddling in front of the Christmas tree while watching Curious George.

Awwwwwwwwwwwwwww.

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Raise your Glass foundation

Monday, November 26th, 2012

A.J.’s parents are launching the Raise Your Glass foundation to honor Dr. van Bosse and the work he did to get their son walking. You can read about it here. The following is my contribution.

I get air sick. I just wanted to start with that in case anyone is under any delusion that I enjoy flying 3,000 miles one-way from California to Philadelphia to see one specific doctor. My family lives five minutes away from the hospital that U.S. News ranked #2 in the nation for orthopedics. My daughter, Laelia (LAY-Lee-Uh), was not only correctly diagnosed with arthrogryposis the morning after she was born, but also with the correct type of arthrogryposis, out of more than 400 types. Our pediatrician could not only pronounce arthrogryposis, but upon our first visit he produced a photo of himself and another patient with AMC–a photo affectionately on his desk. After hearing from so many other families I realize our story is rare for how easy we had it. If anyone was blessed with a working knowledge of one of the rarest conditions in the world right from the start, it was us. If we could have had our daughter anywhere in the world, San Diego would have been hand-picked.

Yet doctors gave up hope.

I can’t explain it. Well, it’s true that my daughter did not really move her arms or legs for the first year of her life. She also has extremely low muscle tone that one local doctor described as the lowest muscle tone that he’d ever seen in kids with AMC. Despite hearing that I continued to make appointments and try to get more help for my daughter. I must have been annoying because the head surgeon actually took my shoulders in his hands and told me to accept that my daughter was disabled. Then he left the room without signing the prescription for splints in my hand. It was for knee splints and the doctors were convinced that straightening Laelia’s knees would not allow her to be comfortable in a wheelchair where they predicted she would spend her life. Every doctor’s visit came with a wave of depression as we grieved the loss of hope. The last glimmer of hope to die was when we learned about an arthrogryposis clinic in Seattle from a friend who was willing to pay for us to go there. It was the final nail in the coffin when that orthopedic big wig gave up on our daughter after one visit. He would make the fifth pediatric orthopedic doctor to say, “Nothing to be done. See me in six months.”

We found out about Dr. van Bosse after we had already given up. I hate to admit it. Even when success stories were pouring out of Shriners in Philly, I was still skeptical. It wasn’t until our friend Cheryl and her daughter, Tracey, spoke up about their personal experience with Dr. van Bosse that we agreed to see him.

At this point I felt like an AMC expert. I was familiar with my surgery options, or what little there were. I knew all about splints, walkers, weight-bearing, wheelchairs, casting and stretching. I owned the AMC Atlas textbook. And my daughter had already been through two major surgeries and some tendonotomies before local doctors had told us she was “done.” I felt so certain she had more potential than doctors could see. So we went to Philly.

The trip to Philly was rough. So rough that I was praying the great and powerful doctor was merely just the man behind the curtain.

Instead I got to meet my very first expert in the AMC orthopedic field. I was impressed with a doctor who listens, examines and waits. But I’m not here to write about bedside manner, although I remain super impressed with a doctor who will email me back within 24 hours with answers to my medical questions. Dr. van Bosse introduced us to an entirely different  methodology   So far Laelia had only had soft tissue surgeries. We kept hacking at precious resources my daughter needed to move. Instead Dr. van Bosse introduced us to derotational osteotomies. And unlike the doctor in Seattle who first mentioned them but would only perform that surgery on patients who “deserved” it (his PT said Laelia’s muscles were too weak), Dr. van Bosse left his crystal ball of future predictions at home and focused on the issues at hand. The most important thing was to give her a chance and see what she did with it. And unlike others we’d seen, all surgical suggestions he made were backed up by evidence. I was shown my daughter’s x-rays and then x-rays of the same exact lower body contractures of other anonymous patients before and after the surgeries he was proposing. It wasn’t a “take my word for it” pitch at all. It was a course of treatment over the next few years with known results. Instead of, “Will my daughter walk?” my questions became, “When will my daughter walk?”

Hips before.

Right after surgery.

Hips after.

Knees before.

Knees right after surgery.

Knees now. Perfectly straight and aligned.

My daughter walks. (Now I’m crying as I write this.) Everywhere. Up and down inclines, around the grocery store, all over the house. Without a gait trainer. Without a walker. Without pediatric crutches. And recently she took a few steps without even her leg braces on. Having correct alignment allowed her to exercise and grow muscles in her legs we didn’t even know she had. I can’t begin to describe how her life has improved dramatically since she gained the ability to stand and walk, something she never would have done without Dr. van Bosse. My daughter was almost five when I had my first conversation with her about walking in the street, opening the bathroom door when I’m in there and running with scissors–conversations I was told we would never have. If not for Dr. van Bosse Laelia would be sitting on wide, abducted legs right now.

Doctors should never give up on children. Children are the very definition of potential. Dr. van Bosse is the very definition of excellence in care. And all my parent friends will tell you, he never gives up.

And I joyfully get air sick to see him.

Best link on the Internets

Saturday, September 1st, 2012

Click this! It’s the best link on the planet!

LINK!!!!!!!!!!!!!!!!!

Orphan no more! Home forever!

(Last night Chelsea took Laelia to a party and my hubby had to work until midnight so it was just Rolly and me.  I was just so emotional as I sat there and thought about all the people who helped us raise funds for our adoption. “Our adoption” was sitting in my living room, eating rice and grinning at me. Thank you all so much! Boohoohoo.)

The story of Roland

Sunday, August 26th, 2012

I titled this blog post, “The Story of Roland,” but this isn’t really his story. There are parts of his story I will never know. Parts he’ll never be able to communicate to me. His story started in a hospital. He was born to parents who were married and waiting for their first child. He was wanted, probably planned. But the contractures on AMC kiddos are the worst at birth. I remember the first time I saw my daughter’s twist of limbs that would not move and I was pretty scared. But there was a social worker, several doctors and nurses, a geneticist and lovely prescription medication at the ready. I vaguely remember the social worker listing all the resources we would have available. I was grieving heavily at the time so don’t remember much, but we were left with many brochures for when we were ready. I doubt any of that happened for Roland’s parents. They named their son Yegor. They gave him their last name. Then they signed him over to the government and left him at the hospital. He was moved into the orphanage to be fed and warehoused.

He was never visited.

Until two weeks before we showed up. That’s where his adoption story begins.

A family came into the country. They were looking at babies to maybe adopt one. They didn’t want special needs, but were willing to look at children with something “fixable.” They visited Roland because he was still pretty little, but because of his special needs they just couldn’t commit to him. They decided to put off committing to him for two weeks. Their appointment at the Department of Adoptions was set for a Monday. We showed up for our Department of Adoptions appointment the same day, a mere couple of hours BEFORE they did. We committed right away. By the time they showed up the little guy was taken.

This ordeal gave our facilitation team grey hairs. They knew we were coming and that we knew about arthrogryposis and we were a better match for Yegor, but they could say nothing. If the other family had committed to him before we showed up then we would have had to turn around and go home! I knew about the other family as we waited for our appointment that Monday and stressed and worried about it until we were safely done with the process that day.

We met our little guy for the first time that Wednesday at 9:37am. For the video click here.

When they brought him out it took my brain a full ten seconds to recognize him. His strawberry mark was gone and there was a thin scar in its place. His head had a huge flat spot from being left in a crib which changed his features slightly. His hair had grown out, his eyes had settled on brown and he had grown. I actually saw his legs before I realized I was starring at my baby. Roland (or Yegor as that was still his name) was shy. He was scared. His little heart was racing. His little lip was sucked in. He couldn’t make eye contact. He’d already been handed to strangers a couple of weeks ago who never came back. He didn’t know what to think.

I started to sing the Disney song, “I know you, I walked with you once upon a dream…” which was fitting since I had been dreaming about him like crazy. Slowly slowly he came out of his shell. He started to ask for things. He pointed at a toy and said, “Do.” (We would later call this the “language of do.”) So I took the toy off the window ledge and we started to play with it. Click here for the video of Roland learning to relax around us and start to play.

By the end our little guy’s personality was coming out. This video here is more like he is today.

One nanny asked if we clearly saw his arms and legs. Then she carefully asked us if we still wanted to adopt him. Still? We were so busy in our own little world we had forgotten that we had papers to sign. Still? Oh right because his legs and feet are bent? Or his arms are straight as rods? Why in the world would that keep us from wanting him?!! We replied, ” Still? Yes! Absolutely!” And then we listened to make sure the interpreter put enough  emphasis  into the words.

We got the chance to speak to the doctor on staff about Roland too. She knew that Yegor was severe, but after meeting Laelia she got some hope. She asked us all sorts of questions like how many surgeries we think Roland would need and if he would walk. I answered that he would absolutely walk one day. She looked at Laelia and agreed with me. Then she asked us very hesitantly if we wanted to adopt him. (Remember the last family to visit him were just “looking” and not serious about him.) When I enthusiastically said, “Da! Da! ABSOLUTELY!” she got all emotional and grabbed my hand to warmly rub it and shake it. She started saying, “Good good. You are good. You are very good. Thank you. Thank you.”

Do I want my gorgeous, talented child? Still? Yes and please. Am I in silly backwards world?

As far as arthrogryposis goes, Roland has joint contractures in all four limbs, but he also has strong muscles. (I’ve been in email contact with Dr. Judith Hall about this and we’re trying to figure out if he has amyoplasia or not.)  His fingers and wrists are affected, but barely. His elbows and knees are the most severe. His feet are clubbed (bilateral). He has AMC in his jaw and it’s hard to open his mouth wide or keep 100% of any liquid in his mouth, but he’s getting better at it.

As far as other needs, he’s an orphan who has spent his whole life in an institution. So yeah. He was given a mental age of 9 months old. (He is 22 months old.) He is not attached to a caregiver. He gets scared of things outside the four walls he grew up in. But he’s a tough little guy and nothing keeps him down for long. Within two weeks of visiting him he was up to a 12 month old level and could maintain eye contact. Booyah.

We spent every day with him for about an hour in the mornings. We drove two hours a day in crazy Ukrainian traffic. I got car sick every. single. day. Laelia usually fell asleep so that helped. :)

Going crazy!!!

Konk.

Nausea remedy.

Everyday we saw more and more of our handsome little man come out. And he started to recognize us and put out his arms for me when he saw me. We loved on him a ton for the hour to an hour and a half we saw him in the mornings. Cue the montage!

Is that enough cuteness to crash your computers? Good. It wasn’t all playing with Roland though. We also had to notarize stuff and drive to appointments. But our Reece’s Rainbow team held our hands the whole time. They really are an amazing team of people who are good at this!

At one point in our trip I started to get upset at myself for knowing about this little boy for a year before we committed to him. I raised funds for him and shared his picture on Facebook and wrote blog posts (on this blog), but was unwilling to leave our life of comfort and follow God’s heart for the orphan. How stupid and short-sighted was I?! I cried over it. I cried over my son’s life. Then we picked up the pieces as a family and moved forward to right those wrongs.

We got word that we had a court date, but these things aren’t set in stone so we didn’t count on it until a final phone call from our facilitator. The next morning we got to see Roland for 30 minutes before we had to drive to court. It would be the last time we would see him until after the appeal time ran out. I promised him I’d be back for him. I promised him I’d love him and get him out of there. I promised I’d fight for him. Then they took him (always a sad end to every visit) and I left to go change into something proper for court.

Nothing screams “courthouse” like bubblegum pink.

We passed court!

They always ask why you want a “disabled child.” They don’t get it. We were ready. The judge and jury deliberated for only a couple minutes before they called us back in and rattled off that we were Roland’s parents. His name would be changed to Roland Quest Wesley and his birth certificate changed to reflect us as parents. We just stood there trying to listen to the interpreter and absorb what had happened and what would happen next. We walked out of the room and Laelia asked what happened. (She had been sitting semi quietly in the corner playing with the orphanage director’s purse.) I told her we had passed court. She started cheering, “Yay we get baby brother!!!!” while hugging us. :)

Then we packed all our things quickly since our ride was coming to pick us up and take us to the airport at 3:00 a.m.

Laelia did really well for the next 28 hours it took us to get home with three lay overs.

Then we settled in at home, empty-handed and waiting. It would be ten days before my friend Chelsea and I would head back for two weeks to finish this process.

To be continued…

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.

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!)

 

 

We did it!

Wednesday, February 29th, 2012

Laurel’s account now has $7,000!!! We did it! Thanks for helping  us milk both those wonderful donors for all they had! :)

THANK YOU!

I’m sure we’ll keep seeing Laurel’s numbers rise even though our matching grants are spent and her “month of awareness” is over. She’s worth every cent, every drop of sweat and every share on social media.

We will not forget her.

And we’ll not stop fighting to bring her a family.

Thanks!

$6,500!!!

Tuesday, February 28th, 2012

Donate to Laurel’s rescue fund!

We did it!!! We made it to $6,500! And a whole day early! Thanks to everyone who gave! (I so love pretty round numbers.)

But that’s not all folks! Because we achieved our goal a day early Anonymous Donor #2 has stepped forward!

So for the last day of February, and therefore the last day of Laurel’s month of awareness with Bring Hope to 12 in 2012, we have another anonymous donor to get her all the way to $7,000!

So donations are STILL matched dollar for dollar! Even though we reached our goal! We have a new goal! $7,000!!!

$1 becomes $2

$10 becomes $20

$50 becomes $100

Until midnight on February 29th OR until we reach $7,000!

To donate go here!

Side note: There’s another grant for people who commit to Laurel. It adds $2,000 above and beyond  the funds we raise for her.  It will be given to the first family who commits to her.  So if we do reach $7,000 we’ll have a cold hard $9,000 to offer that family.

If another donor wants to step forward and offer another $500 in matching funds we could make it a cold hard $10,000! Just email me at recordsky (at) gmail (dot) com!

Thank you!

 

End of matching grant day one!

Tuesday, February 28th, 2012

At the end of day one Laurel  received $255 in her adoption fund! The matching check was for $283! (That includes the 10% donation to Voice of Hope.)

We have two more days to really make this donor pay up! Let’s do it! Click here to donate. All funds are still matched dollar for dollar! (See post below.)

And thank you so much for those who have donated! Much appreciated!