Archive for the 'joy' Category

Video of Laelia

Monday, September 16th, 2013

I created this video of Laelia learning to walk as a present for her 6th birthday. I used all of the videos I had of her where she is moving her lower limbs. And let me just say that there were not many videos of her even moving her lower half for the whole first year there, despite daily physical therapy and stretching. Wow, it’s amazing how far she’s come and how hard she worked. Laelia’s birthday party isn’t for a couple of weeks yet, but tonight she caught me editing, saw it was videos of her and then squealed and demanded to see it. (By the way this is my first video editing job EVER and it was really hard and I cussed a lot and now I hate technology.) So the cat’s out of the bag and I’m just going to make it public.

Enjoy.

Disneyland

Wednesday, January 23rd, 2013

Because what post-institutionalized child wouldn’t love a day at Disneyland to celebrate five months out of an orphanage?

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Seriously this picture is the best Disneyland advertisement ever.

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This one too. ;)

We had a great time!

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Balloons for all three kids (the third kid is in Meg’s tummy :))

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Someone loves daddy! …And is about to smack him with a balloon in the face. :)

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Our family enjoying Disneyland.

And just for fun here’s an excerpt from my diary last August:

“We got back to the apartment in Kiev and realized we had no diapers for this guy. So Chelsea and I walked to the pharmacy since they sell diapers there and not in a regular store like you’d expect. Roland was strapped to me, facing me like I’d been told to do, and so cute. I never could imagine how someone so foreign to me could be so loved by me. But I know we have a long way to go in bonding, but the fact that he clings to me around unfamiliar things is nice. It was still raining when we stepped outside so I got out an umbrella to share with him. It’s a cute little purple thing with kitties on it we picked up in the underground mall. You’d have thought it was the scariest thing imaginable by the way Roland reacted! He started shaking and buried his face in my chest. The pharmacy didn’t have diapers so we had to walk down to another one farther away. That was hard. While walking the traffic scared him, the parked cars scared him, the city noises scared him and the people (oh so many people!) scared him. He was shaking so hard. He had his face buried in my chest the whole time so he wouldn’t have to see. He was so nervous he puked down my shirt and stomach. We finally found our diapers and walked back to our apartment. Being in four close walls again helped calm him down. This guy is so timid and the world is so big and scary. Oh I hope we bond quickly so he’ll be able to leave the house someday!”

Excerpt from my diary last weekend:

“Woke the kids up a bit early and they were all grins and giggles and squawking. I said we were going to Disneyland and Laelia did her happy scream which Roland echoed. Roland loves the car so he was good until about an hour and a half of driving when he got bored. Then he started making noises, being annoying and getting everyone’s attention. Why did I leave his piano toy at home?! When we unloaded in the huge parking lot both kids looked a little bored. Haha, cars and traffic and all these people are boring to my little spoiled boy! That was not always the case! When we entered the park and made our way out of the crowd both kids were sitting up in the double stroller (love this stroller!) each with a park map in hand and looking around excited. We were meeting Meg and Davie near the canoes but we had a little time since they got stuck in traffic so we headed to the carousel. I put Roland on the horse and I have never seen him so happy and excited! He was thrilled. This was the best ride ever! And he had no idea it hadn’t even started yet!! Then it actually started and he squealed in delight! He kept saying, “Weeeeeeeee!” I wanted to tell the people smiling in our direction that this boy had never seen a carousel before, or a horse, or anything besides four walls most of his life, but I didn’t. When the ride stopped he was pretty sad and kept reaching for the horsey and saying, “hosey!” But we had more rides to go on! [...] During It’s a Small World (a 15 minute ride) Rolly said, “Hello” and “Bye-bye” to about a million animatronic singing children. When I bought him a Micky balloon I had never seen a more happy child in my entire life. He got ice cream for dinner and glow sticks to poke his sister with. What a happy boy! [...] That night we placed him in his bed and he slept through the night. I remember when this much stimulation would leave him scared or up all night or nervous or clinging. Not our adjusted little guy! I’m starting to think his life started five months ago. His real life. And he’s doing amazing!”

New Feats for Rolly Man!

Monday, January 14th, 2013

I’ll keep this brief. Roland started out with super straight arms and super bent knees. And they were stuck that way. And I mean STUCK.

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Roland before any medical intervention.

 

After therapy, stretching and casting  for the last five months, Roland’s arms can bend enough to suck his thumb (!!!) and his legs are straight enough to walk across the living room without a walker.

WITHOUT A WALKER!

(Those were links up there. That’s right. Videos. Clicky clicky!)

Oh yeah and the doctors in his birth country didn’t think he could do either one.

Take THAT arthrogryposis!!!

Oh…

You may all commence screaming now.

YAY YAY YAY YAY YAY YAY YAY YAY YAY YAY YAY

!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Perfect!

Monday, January 14th, 2013

Here’s the good, the great and the perfect! (No good, bad and ugly here.)

Life is pretty perfect.

Pretty much my kids are stinkin’ adorable all the freakin’ time. They play me. I know it. They know it.

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The pampered princess

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The pantsless prince

There’s no denying they are the cutest, bestest kids in the whole entire world.

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This one discovered a duck.

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This one discovered a bear.

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Here they are exploring the frozen tundra.

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Are you seriously this cute?!!!

Yes!! All the time!

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This one demands he get to kiss the bear and then YOU have to kiss the bear.

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This one demands she get to ride the hippo and then YOU have to ride the hippo.

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Here’s one playing cards.

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Here’s one playing with a toy.

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Acccccccccccc! CUTE FRIEND!!!

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During her haircut her cute brother begged for cute attention (see background).

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During his haircut his cute sister begged for cute attention (see background).

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Learning to play the (broken) piano.

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Then they were all playing! I literally had to jump in there, ruin everything and hug them all!

I love my kids so much!!!

I love my husband so much!!!

HAPPINESS!!!!!

 

Roland took his first steps without a walker today!!!!!!!!!

Tuesday, January 8th, 2013

Roland took his first independent steps today!!!!!!!!!!!!!

Click here for the video!

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

~

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

~

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*