Archive for the 'big girl' 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

~

“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*

 

Laelia’s Song

Wednesday, December 26th, 2012

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Did I ever mention that a mere handful of days before I had to fly back to Ukraine that my friend Chelsea agreed to go with me (and pay her own way) so I wouldn’t have to go alone? Yep. And her band (Adams and Eves) had to move up their show to accommodate me stealing her. :)

So Charley and I went to the (rescheduled) show at the Riviera Supper Club. This was the last date we would have for a while.

While listening to one of their new songs Charley and I started looking at each other. Was Adam singing, “Laelie?” (Laelia’s nick name.) No he wasn’t. He was singing “lately.” But the rest of the song just sounded like it was about our daughter.

After the show we had to ask. Was that song about Laelia?

Yes it was!

{Fun fact: the elongated syllables during the chorus (ie. la-tely, s-lee-ping, a-bout) sound out Lae-li-a.}

For Christmas Adam got me the homemade single of Laelia’s Song. I got permission to put it on the blog.

Lyrics:

It takes the tallest type of person
to crawl about my feet
and show me wonder
In the smallness around me

Freaking out so hard on the living room floor
and laughing afterwards
just crying out for more

Those days are over
but to me, you’ll always be
a twisted little heater
nuzzled up to my heartbeat… and my heart beats

It’s like taking your first two steps
at the ripe old age of three
It’s falling in love with everyone you meet
and seeing something in them they’ll never see

Lately I’ve been having trouble
Sleeping without waking woeful
About you and the pain that you’re in

With legs like little ladders you’re just bound to scale the walls
Of “No”s and “Nevers” that the experts built so tall
It’ll take a little time for me to figure which is bigger
your mouth, your mind or your heart
It makes the things I think are special 
about you feel a little trivial
when every single move you make 
is a miracle

Lately I’ve been having trouble
sleeping without waking joyful
About you and the shape that you’re in!

Roland took his first steps! HE IS WALKING!!!

Monday, November 26th, 2012

On November 15th, 2012 Roland took his first steps! I had the worst cold of my life and had lost my voice so all the cheering him on just came out air. :) Click here to see his very first ever steps!!!

And here’s a video of his longest walking stretch that day. He falls at the end, but after the initial fussing he was begging to get up and “wok” again. :) I just wanted to take more medicine and go to bed, but Rolly pleaded for me to do more walking with him. He couldn’t turn since his little make-shift walker lacked caster wheels so after he ran into something he’d whine for me to turn him around.

So proud of himself!

Love his little monkey tushy. :)

For weight we put a bag of quinoa in the seat that we drew a face on and called “Keenwah baby.”

Although he was falling a lot, Roland was taking more and more steps! But then two days before Thanksgiving he got a cast change which left him hurting and miserable. He couldn’t weight-bear, stand or even crawl. Poor guy has to have a new transition every two weeks as his body changes slightly through casting and he has to relearn how to do everything all over again.

Before

After

But check out the progress we’re making! Less than a month left of upper body casts! Look how bendy those arms are!

*Someone* was happier about the trip to the hospital than the other one. She was great and helped Rolly all through the casting process.

Oh and speaking of Laelia, she walked the entire day. I forgot her wheelchair and her walking sticks, but instead of going back for them she begged to walk. She walked from the parking garage to the elevator to the hospital to the casting area to McDonalds and back to the parking garage. (Those who have been to Rady’s know what a huge distance that is!) And she did it all without walking sticks! Just held my hand for some of the rougher terrain. Incredible!

She wanted her hair done up before we left with the bows we won at the auction to bring Igor home from the orphanage. People would compliment her hair and she would say, “And my walking is great too!” :)

Two days after his casting change Roland was feeling much better and started to grab his “walker” and fuss at me to stand him up. Quinoa baby had broken through the material in the toy stroller so we had to make due with a ten pound weight attached to the bars. Eventually he was walking EVEN BETTER than before! Know what helped the most? We got him a walking coach. She works for cookies.

Click here for the video of him learning to walk with Laelia.

Click here for the video of him “racing” Laelia. I no longer hovered as he was no longer falling!

My babies both walk!!!

Take THAT arthrogryposis!

Happy birthday Roland!

Sunday, October 14th, 2012

My son’s first birthday is today! He turned two. (Confusing? Well that’s adoption for you.) He’s been our son for eight weeks now and boy is he thriving! For one thing he can talk now! He says “hello” to everyone we meet! Plus he can say Mama which I LOVE!!!!!!!!!!!!!! (He sometimes even refers to me as Mama. Mostly I’m “Dadoo.”  What the heck does dadoo even mean?!!) (And I swear he has the cutest little accent, but maybe that’s in my head. :)) Click here for a video of him saying all his cool new words! Wow, how far he’s come!

We wanted to do something grand for his first birthday in our family, but ended up downplaying the whole thing a bit. We didn’t want to have a crowd or even a small group in our home since we have to maintain this as a safe place for a few more months. We also didn’t want to let him blow out candles, because knowing my son, introducing him to fire would only lead to burning down our entire block. :) So instead we tried to teach him the happy birthday song and gave him all his favorite baby foods. He also played in the church nursery today, so take that orphanage attachment mess!

It’s days like these where I am floored at the thought of anyone giving up this child.

Raca. Fools!

Yes I know that was an impossibly hard decision and I can’t possibly know what they were going through, but that doesn’t change the fact that their decision was the wrong one. This kid is so amazing that thousands of mommies would line the streets waiting to fight over him. And I’m starting to really believe that better  physical  functioning like the kind an American family can provide with better doctors is not worth the sacrifice of a loving home from birth. (It’s not like he needed a heart surgery, he just has a physical limitation!) Almost two years of neglect can’t be rectified by better orthopedic treatment. He needed his parents. He deserved better.

But now what I’m going to write will seem to negate what I just wrote, because orthopedic stuff (like shoes and sitting in a gait trainer) is just what Roland got as his birthday present and he loved it. But I guess I just wanted to say that the fact that he gets to experience better functioning through modern medicine now in no way makes up for what he went through. Only God can redeem the mess that special needs kids go through over in Eastern Europe. Ugh. Part of me just feels a bit guilty that the trauma of losing his parents the day he was born directly led to me (with my orthopedic connections) getting a most precious son.

So sorry, back to the shoes.

The best gift we gave him (besides a home and family and to a lesser degree, kitties) was shoes. Happy birthday baby! Last Thursday I noticed that after this last set of casts his feet are really starting to be “feet shaped.” So as a lark I tried putting some shoes over them. I used Laelia’s old shoes that happened to be boy shoes. They are nothing special and in fact they are in no way functional as they get in his way. But wow was this boy happy! He just stared at his feet and looked so proud of himself. It hit me that these were the first shoes he had ever been able to wear in his entire life. And he just couldn’t stop staring at them and grinning!

The next day I took it a step further. I dusted off the ol’ KidWalk (a gait trainer with a seat) and gave him the feeling of standing in those shoes. I swear, I could have given him ten birthday cakes and a million dollars and not made him nearly as happy as he was just standing in his big boy shoes. Here’s his first “step” kind of.

Mostly he would try to lift his foot (while not weight bearing at all) and get super excited. I would push the KidWalk a bit forward and he would  squeal  with delight. It was pretty precious. Then I’d push him a little ways and when we’d stop he’d say, “Ta da!” Like, “Look at me, Mom!”

After that hard work he fed himself a snack using his new bendy arms! What a big boy he is!

We also tried reading him some books. *sigh* Roland is really not the sit-and-listen kind of child so he mostly just competes for attention with the book. (Video here.) And sometimes he’s so annoying while I’m trying to read to Laelia (required for school) that he must be chased and caught and head-patted into submission. (Video here.)

Haha, Roland just grabbed a wet wipe off the table and made the “blow nose” noise with his mouth. That never gets old. Have I shared that video? Here it is.

Okay I’m off to play with my kids. Laelia would like to point out that she just had a birthday too so they are both birthday kids. :) I said that was good to know because I was just about to go chase down, catch and tickle mercilessly any birthday kids I found! (She has since run off screaming. Gotta go!)

Happy birthday Roland!

We love you.

Happy birthday Little Laelia!

Wednesday, October 3rd, 2012

Little Laelia turns FIVE

We had told her back in December that she’d get a brother for her birthday.

The process went a bit faster than expected.

Laelia found out that she loves to mommy him.

And pick on him. :)

And play with him.

Who wants to color?!!

Best birthday present ever… even if he is a stinker sometimes. ;)

The next day we had birthday cookies!

Laelia went to school, then PT, then OT, then she picked out pumpkins with her brother, then we had a mini birthday party (just the three of us since daddy was working) and she fell asleep one bite into her cookie. :)

I’m so proud of my daughter and all she’s accomplished in five years. A lifetime has gone by in that time. I’m so thrilled with the person she grew up to be and I’m in love with our family and her role in it. I couldn’t be happier. Well I’m crying, but that’s only because I forbid my daughter to ever grow up and she didn’t listen. ;)

There’s a project called Hope for AMC where different parents, siblings and grandparents submit pictures of what they would tell themselves when their AMCer came to live with them or other messages of hope. These are the two pictures we submitted (click to enlarge):

Thanks for being my kid, Laelia Sky. Happy birthday.

First month home!

Tuesday, September 25th, 2012

This is that first month home  blog post I promised. It’s over a week late. Sue me I’m busy. :)

Let’s get to it! Here’s everything: the good, the bad, and the ugly.

Roland the Adjusted

Roland has been adjusting nicely. There’s no official measure of this of course, but if there were, he’d be rocking it. There’s also no official timeline of this, but if there were he’d be on the faster end of things I think. (I’ve learned that kids with physical limitations bond faster because they have to rely on their caregiver. That is definitely true in our case.) The classes we took during our home study process (the first step in adoption) are finally coming in handy. We also have a support group online. Those two things have put a lot of light on Roland’s behaviors. Understanding him has helped us parent him. For one thing diaper changes were somehow traumatic. Before my mind went to dark places, I got the advice that he probably just doesn’t like the vunerable position he’s in since we were placing him on his back. We made diaper changes more fun, added toys and eventually he felt safe in that  vulnerable  position. Now it’s fine. He occasionally throws a stink (pun totally intended) if we change him, but only because he’d rather be playing, not because he’s scared.

Food was another part of adjustment. If he saw food anywhere around the house that was not in his mouth right that very second it would cause a melt down. Not getting it into his mouth fast enough while he was at the table also caused a melt down. If it was food he hated BUT it was taunting him with the mere fact that it could never be touched by mortal taste buds… melt down. He was always afraid of not getting fed or not getting enough. We had to have Laelia eat her food in another room so he wouldn’t freak out and try to grab it out of her mouth anymore.  (He once threw himself on her red tray table to get to her food. He did it so hard that it collapsed the whole thing. Food flew everywhere and he just put his little body on top of the food to guard it because he had no way of getting it into his mouth with his unbending arms. Then he made loud Ukrainian noises at us when we tried to remove him from the pile of food. It was totally like this.) Things are much better now. I can make a cup of tea while in the middle of feeding him breakfast and he waits for me. I just ate something in front of him without thinking and he happily played with toys because he had just eaten. Obviously he trusts us to feed him consistently now.

He can also now eat our foods with their different smells and textures and that helps. Cheerios and graham crackers were yucky to him several weeks ago and now they are ambrosia. He came to us not being able to chew and that caused any chew-required foods to be avoided. Now he chews and swallows and even drinks from a straw! We’re so proud of him!

Of course on Saturday someone handed him some fruit snacks and he swallowed them whole. When we made chewing motions and pointed to his teeth he enthusiastically made those chewing faces right back to us and then swallowed another fruit snack whole. *sigh* It’s progress. ;)

As far as other adjustments…

It didn’t take long for Roland to realize that Daddy comes home around the same time everyday and it’s fun to block the door.

Or that if he grabs Mommy’s hand and puts it on his little head that Mommy (aka the sucker-for-baby parent) will coo over him and love him all over.

Or that everyone wants to take his picture.

And every picture looks like this, “Oh boy a camera! Must point at it!”

And if we ever see mommy go into the big box in the bathroom it means she’s being eaten by a giant monster and we must bang on the glass door and scream the ENTIRE time to keep the monster away.

As soon as mommy turns the water off we get super excited and tell her all about how we helped.

(I used to leave the shower door open enough for him to stick his head and one arm inside and happily play in the water. Not since getting his can’t-get-wet casts though.)

Let’s see, what else?

Roland has two stimming behaviors that have followed us through this first month. To stim is to self stimulate. You see this in kids with autism or kids who were institutionalized. It’s a way of creating stimulus  when there is none, but this coping mechanism sometimes becomes ingrained and follows children home from institutions. Usually stimming includes rocking or moaning or rubbing or licking and it is always repetitive. Roland used to rub his eyes over and over, but that is largely gone except for when he’s really tired. Only two behaviors have really lasted the month. The first is a movement he makes with his head. He shakes his head “no” in a slow motion moving all the way to the left and then all the way back to the right. This is his way of avoiding eye contact. He will do this if he’s overwhelmed. And once his head is all the way to one side he’ll look at you by straining his eyes and using his peripheral  vision. It removes him a step away from full-on eye contact. I don’t have a video of this as it happens so rarely now, but the day (a week and a half ago) he had to go with Daddy to get x-rays (I was throwing up at the time and couldn’t go) he did it to me when he got back. It was like he was saying, “Mommy wasn’t there. I feel abandoned. I have to regress to this behavior to look at her.” But really I don’t see this lasting the second month.

The other stimming thing he still does is a humming noise he makes. We call it his “thinking noise.” This, I’m pretty sure, will last SEVERAL months/years. It happens when he’s bored or working out something in his head. He used to do it 100% of the time whenever we handed him a book. We used to joke, “What bad things did the books do you to baby?” Here’s a video of him making his noise. It doesn’t mean he’s unhappy and never turns into crying.

One adjustment Roland has made is to bond with a primary caregiver. In this case that’s me! (Bonded for life! Woohoo! Watch our future Mrs. Rolly! I’m gonna be *that* mother-in-law. :)) Bonding is super important and helps when visitors are introduced into our lives. He needs to know that these are friends, but they won’t take him away to live with them. They go home and we stay here. We have been working on this so that he’ll be ready to have his grandparents come visit. We’re making progress. As you can see last week we went to Philly and he played with other children. He even got held by others, but  preferred  me. It was awesome. And a good sign. But before that we had a play date and he had a great time, but as soon as they left he was a mess.

This was his first ever play date. He had a lot of fun.

Click here for a video of his dance party.

That night he was up from 11:00pm to 7:00am crying and getting reassured. It didn’t make sense to me, but when I got on the support group and said, “My son is pulling an all-nighter!” Someone wrote, “Did he gave a great day or a birthday party?” Really?!!! Yeah he had his first play date. Poor thing is either  sabotaging  himself or wondering if the fun people will be his new parents. Grrrr orphanages suck!!!

Adjustment is hard, but it’s going really really well!  We have a little ways left to go, but not a long way. Mostly we have been blessed with a well-adjusting, happy kid. A kid so happy he wakes up with smiles in the morning and even when he’s throwing a tantrum over a toy he’s not getting (scissors, sharpie markers, etc.) he is always brought out of it by being picked up and loved a bit. Very spoiled child over here.

Roland the Trouble Maker (abridged… very abridged… very very very abridged)

Roland has an engineer’s brain. It’s kinda awesome to watch him work things out in his head, kind of like our friend Abu does. So I’m resigned to the fact that Rolly will be taking our thermostat apart or “fixing” the microwave some day. In the mean time his engineering mind mostly causes messes or trouble. Like the time he got my cell phone out to play with. I had locked the keypad so I let him play with it. He not only unlocked it, but texted “I’m in a meeting” to my husband using the saved text thingy already in the phone. That led to some funny back and forth between me and my husband when he called to ask if my meeting was over because he had been sitting on some important information about Laelia’s school. I was mad because I’d been waiting for that info all morning and could not figure out what he meant. Roland also set an alarm clock to go off at noon everyday on my phone. *sigh*

What other things has he done recently? Oh my word you would not believe me.

He turned on my work printer, pressed “print” which printed out my time card, then danced to the “music” while it printed, then repeated that 14 times before I realized what he was doing.

After two weeks home I just resigned myself to wasting one bag of Cheerios and one cup of water per day. He just loved to open the bag (hard to do since he can’t supinate well), get the lid off the cup and just start dumping it all over himself.

My son loves to pull the siding off the walls. It exposed the nails so we put some duct tape there so he couldn’t do it. Why Mommy why?! That was like my favorite thing to destroy!

Five minutes alone in a room. Enough said. (Those red things used to be the sides of a box of toys.)

Look at those two stinkers! After I took this the phone rang. When I came back a minute later they had flooded the bathroom. No joke. Roland had also put the toddler toilet seat in the bathtub and the plunger in the toilet.

One day I had put over an hour of work into a project for my job. Roland happily entered the room, saw a button (ooooh button) and turned off my computer. All work was lost. When I said “nyet!” he ignored me and happily turned off my husband’s computer too. Now we have a baby gate thanks to Craigslist. He just stares at the buttons with longing in his eyes on the other side of the gate. Must. Press. Buttons!!!

He chases and actually catches the kitties who then become his little furry pillows. (Video here.)

Here’s him dumping all the shampoo into the bath water along with anything else he can reach. Baths and destruction are like his right and left arms.

Even at the famous train table at Shriners he’s the one destroying the track.

Oh I could go on and on and on. There’s the time he pulled the window slates off, then he unplugged the Internet router, then there’s the fact that he’s always pulling all the books out of the bookcase, and all the DVDs out of the cabinets, and soup cans out of the pantry which I find in the garage because he gets them through the kitty door. We now have to put the cats’ food and water dishes up high after Rolly had a little party with them one day and move all plugs behind the couches. He has pulled two pictures off the walls, set off my car alarm using my keys, got all the pots and pans out, stole and lost the clean and dirty magnets that go on the dishwasher, found my box of letters from when my husband and I were dating and tore them up, oh and he got into the bathroom.

Steve came over and had to baby proof our cabinets after this.

I swear I have too many stories of this trouble maker happily making trouble!

Usually they end with him falling sound asleep in the middle of his destruction.

Moving on…

Roland the Skilled

Holding his own cup!

Playing the piano. (Video here.)

After a month of daily stretches we finally got enough bend in his elbow to hold his food!

Side view of his new bendy arm!

And that’s just holding the food. He also fed himself a graham cracker for the very first time! Click here for that video.

Roland loves the wheelchair. Click here for a video of him using it!

And I know I’ve already shared it, but the video of him knee walking with a walker is just so great. Click here to see it. (I also love his happy noises in this video.)

Roland the Patient

Pretty much Roland’s medical treatments are very easy. They would have been bad if we hadn’t already been through the entire thing already (only harder) with Laelia. Pretty much when the doctor is breaking news to me like, “Well…….. it looks like he may need surgery on his hips.” I’m all like, “Oh a release? For the hips? Yeah we don’t call that ‘surgery’ in my family. We call that ‘day at the hospital followed by ice cream.’ Unless you’re talking about cutting my child’s legs off and then screwing them back into a different position then just call it an ‘outpatient procedure.’” :)

But seriously, his AMC is more mild than Laelia’s and while still requiring hard medical intervention, it just feels like we’re on a vacation.

You know what? The best part?! There’s no “mommy guilt!” You know, like the kind I felt after my daughter was born thinking I had caused her condition. It didn’t matter that amyoplasia has no known cause, is not genetic and they’ve ruled out accidents and diet for possible causes. It didn’t matter because she grew inside me and my womb crushed her. That’s hard to forgive myself for. With Roland I have only ever had the good feelings like I’m doing good in the world by helping my son thrive. That has made things easier. Much easier. Most of us special needs bio moms gave birth and were dealt a blow and grieved a diagnosis. But with my son it was so different. Choosing this path has been empowering in a way. It’s hard to  describe, but add it to the amazing realization that I did not have to go through pregnancy or labor or breastfeeding again and just call me insanely happy.

(Well, some people may enjoy those things. For me it was “get it out,” “cut it out” and “pump it out.” Did I like that? Figure it out.)

Of course there are set backs when you don’t have a baby from birth. I can’t tell you how many medical  questionnaires  I’ve filled out with question marks or “who knows!” next to the question. Was he premature? Was he breach? Was he small at birth? When did he cut teeth? When did you first notice____?

The other down side of not having him since birth is that he has missed some windows for things. For one thing he doesn’t qualify for a cranial band (those helmets) because he’s too old and his head has firmed up. He’ll just have that flat spot on that back left for life, and it may or may not cause headaches or jaw issues later and may require surgery.

He also has some lead in his blood from living in the orphanage in a third world country. Actually there are a lot of little things when you bring home a little one and a lot of initial doctors appointments where you wonder what will be discovered and where that discovery will take you.  And they always want a sample or three of your child’s poop. Welcome to tiny shovels and vials. Welcome to blood work. Welcome to range of motion measurements.  And welcome to shots since you have to retake some important  vaccinations  because they are notorious for being junk or expiring in his birth country.

As far as orthopedic treatment right now we’re doing serial casting. Roland got casted recently (as you can read in the previous post) and hated life for about a day. But after almost two days he’s back to the old happy Rolly. Oh look there he is tearing up my carpet. :-/

Here’s a video of Rolly re-learning to crawl with large plaster casts on. Next week we’re adding at least one arm cast to the mix too. Poor dude.

Roland the Little Brother

Riding on the wheelchair with Big Sissy

Cuddling on the couch. He won’t let her hold him like a baby and she is resisting the urge right now.

I have to say I’m impressed with my daughter. She was an only child, a spoiled child, but she took on the big sister role even before he came home. She prayed for the orphans in Ukraine and Russia and Bulgaria every night. She mentioned things she was going to help her brother learn or do when he got home. After her last surgery she woke up and the first thing she said was, “When baby brother has surgery, I’m going to hold his hand.”

Laelia calls Roland “baby brother.” We’ve all started doing it. They fight like siblings and cannot share a toy without someone screaming (Roland). But it’s so very normal. Laelia loves to dominate and mother Roland. Roland had to learn to have a sister who is bigger than him and wants to pat his head and hold his hand. At first a larger child wanting to touch him just scared him to death. In his orphanage he only ever played with a small “groupa” of children his age. He never experienced love, or watched someone else be loved. Watching Laelia fall down and get comforted led to him crying out to be comforted. (Which was a break through at the time.) Watching Laelia say words to him, led to him making similar sounds.

I’m starting to think that larger families are just so perfect for these adopted kids. I wish we had more siblings to give him.

My favorite part of parenting is watching my children grow and mature. Roland went from an orphan to a member of a family. And Laelia went from only thinking of herself to thinking of her brother. I love to hear my precious daughter’s voice on the baby monitor in the middle of the night singing to her brother who woke up crying. Or even her world-weary voice saying, “You’re okay baby brother. That’s enough. Go back to sleep.” Haha!

But of course my daughter will also pick on her brother. She likes to set all his toys to Spanish and then laugh and laugh while saying, “Bwahahaha!!! Now you’ll never learn English! Hahahahaha!!” (It’s kinda hilarious.)

Roland the Talker

Roland says kitty and Laelia. That is all. :) “Why you no speak English?!”

Oh and “da” which means “yes” in Russian.

Okay well he’s also just started to parrot some sounds back. When I say, “up” he sometimes says, “ahhhb.” Or at the post office today I said “people” and he said “peeool.” Last night I was tickling him and said, “You want more?” And at the word “more” he opened his mouth wide for food. (“More” is a word we often use at the table.) So he’s getting it.

He only says “mama” when fussing or crying. For example when I’m in the shower, “MA MA MA MA MA MA MA MA MA!!!!!!!!!!”

Mostly, and I mean almost always, communication is simply raised eyebrows, a pointing finger and the sound, “Mmm.”

(Update: Week five and he now says “no.” Often.)

Roland the… Roland

Pretty much the weirdest thing about bringing Roland home was that he was not the baby I had prepared for. I think during the waiting period you fall in love with a picture and then you fall in love with an idea of a child who is not real. That’s not necessarily a bad thing, in fact I held onto that one picture like a  talisman  through the pain and travel and paperwork. When the real boy entered the scene he was wonderfully better in some ways, and woefully hard in other ways. But he was real. We were expecting a baby who didn’t move. We got a tiny tornado. We were expecting crying and we got total happiness  punctuated  with bouts of screaming. We were expecting gratitude and we got honesty. Oh and we expected him to chew. And we got schooled in the heimlich.

He has a personality. Part of it was shaped by having to look out for himself–hitting and screaming and fighting for what’s his. Part of it was shaped by being always around other small children so he is loud and screams for attention. Part of it is due to his arthrogryposis limiting his mobility. Part of it is foreign, from a culture I don’t fully understand. And part of it is biological from a gene pool I don’t share.

But largely, little by little, day by day, a major part of his personality is being shaped by me. It’s incredible to watch. He gives kisses like I do. He gets excited and shakes a bit like I do. He makes faces like I do. When I’m telling him, “Can you say BA NA NA?” He says back to me, “Da na da, DO DO DO?” in (I swear) my tone of voice. We even joked he was teaching us his language, the language of do do. :) Okay none of those things are relaying my point, but just trust me, this boy is assimilating into a family for the first time ever. It’s amazing to witness.

Hardest: The easiest parts were kind of covered already in the adjustment section so I’ll tackle the hardest. I think the hardest part of adoption so far has been during the first several weeks anytime Roland threw an angry fit. The first three days were different. Then we were in the fire and we knew it, and it was so bad that we couldn’t  concentrate on ourselves at all. I think caring for extreme needs like that was easier on us, maybe because our brains shut down and our instincts took over.  Then there was the get-to-kn0w-you period of time after the initial shocks were over that I didn’t expect for whatever reason. He would cry and we would play the figure-out-why game. Now after a month I know why he’s crying 95% of the time. That has helped.

But I’m talking about the angry, I-want-my-way, typical toddler fits. (Typical fits, but unusual triggers.) I didn’t expect to be so insanely angry when he’d scream, and I didn’t expect to remain bitter towards him even after he was happy again. I didn’t expect to feel violent thoughts when I’d had enough. There have been two days in a row, and then another day a little later, where I simply faked being a loving mother. I did all the steps without any of the feelings behind them. And I know my husband had more days like that than I did. It surprised me that this anger would be a side effect of bonding, of things getting better. It humbled me. I felt like a terrible person. When Laelia was this age and did the exact same thing I would get angry, but when she was good or cute again the anger would vanish. Yes she threw this or hit that or screamed, but, you know, she has her daddy’s eyes and my stubborn chin. How can you stay mad at that? But with Roland, this adorable little stranger who was hurting my ear drums and causing my heart to race, there was a bitterness that lingered. It required a lot more monitoring of my own reactions and thoughts. When he would be over his fit and happy again I would see it as manipulative and just want to leave the room (which I couldn’t). Thankfully these situations didn’t happen very often and everything seemed to reset in the morning. The Bible says God’s mercies are new every morning. It’s true. It’s a natural reboot. Roland wakes up with a smile on his face and he  beams  with joy when I make eye contact with him for the first time. And I fall for this baby all over again.

Hmmm, another hard thing is that there is a constant-ness to parenting an adopted child. It’s been five weeks. Whatever heartwarming story or fiery speech that geared me up to tackle bonding has well worn off by now. Now it’s just the constant being with him. The constant co-sleeping. The constant not being left alone. The constant carrying around the house or wearing him. The constant bother of being someone’s emotional well-being. It’s worth it, most definitely, but hard. Not enough to make me want to claw my way out of my house and run down the street screaming, but let’s just say that when Roland is sleeping soundly enough for me to escape, I do. And often.

And during those times can I get someone to please remind me that I should really be showering, doing dishes, brushing my teeth and folding laundry? Because I don’t know how this happens but I always end up either playing Plants vs. Zombies or watching reruns of Xena Warrior Princess on NetFlix. ;)

Most satisfying: I love being covered in children. (I can’t tell you how large my heart got in my chest just thinking about this.)  I love saying, “My kids.” It was so surreal the first time I said, “kids.” I love the plural. I love kissing two little heads in my lap. I love cuddles. I love love love my kids.

I was told that the first three months are a time of constant holding, never leaving him alone and sleeping together. And that’s what I’ve done. But tonight he was doing so well that his daddy took him to run some errands and I took Laelia to Home Depot to get her a cactus and let her run around in the plant area. It was the first outing with just us girls since Roland’s been home. We loved it so much. Laelia talked the ENTIRE time. But what amazed me was how much I missed little Mr. Clingypants. When we walked in the house after less than an hour away, Roland saw me and started laughing and grinning and holding his little arms out while half crawling/half stumbling his way towards me. I ran to him and scooped him up in my arms where he squealed in delight! I love him so much! This boy is pure joy!!!

First trip to Philly with Rolly

Sunday, September 23rd, 2012

I haven’t had a ton of time to blog, but thankfully my friend Julia already did for me. Click here to read her blog and see pictures of all our kiddos.  We hadn’t seen Julia in person since Aaron’s first trip to Philly right before he got his first casts. Now Roland was getting his first casts and we run into them again. Every time either of us adopts a child who needs serial casting we’re sure to run into each other. ;) Julia and Rob and their boys are part of our AMC family. And Aaron and Laelia were flirting something obvious.

Aaron: “Laelia wants her water, but I have to get it.”

Laelia: “Push me on the swing!”

Aaron: “Gotta go.”

(Video here.)

At one point she spilled her water and Aaron ran to get the towel. Amy was already carrying it over but Aaron convinced her to give it to him. He triumphantly brought it to me to clean up the water. :) He even helped Laelia stand up using the step in the living room. He got down and showed her over and over how to do it and then cheered her on. I think Aaron enjoyed being the more mobile one for once and Laelia enjoyed being the center of attention (For once? Ha!) so their relationship works well. ;)

We were invited over for dinner at Amy and Adam’s house. (Here’s Amy’s blog.) Amy and I have been chatting lately since we learned we have both adopted out of the same orphanage. I was so glad for the Facebook correspondence, but it was even better to sit down with her at her kitchen table for some one on one. All I can say is that if you’re feeling something about adoption you can bet another mom is too. And it doesn’t take super human beings to adopt, just us.

We also got to meet Susanna and several of her children. (Here’s Susanna’s blog.) They are the family that adopted little Katie, who at ten years old was only ten pounds when they adopted her.  My husband and Susanna’s son, Daniel, had a long conversation about math. I think my husband would be up for adopting again if we could adopt Daniel. :)  I’d have to put my foot down since theoretical math conversations all day long would not be good for my brain. ;)

Roland and Katie

Ball fun!

AMC reunion

Backing up a bit. So I had to work late into the night before our trip since it was my last day of work and there was a lot to do. I packed our bags two hours before we flew out. Oh and of course my dumb cat with the feeding tube decided to claw the tube out of his neck the day before. He was going to spend the next few days at the vet while we were gone. And now he has a big hole in his neck. That cat… Just what we needed. More stress.

Dumbest cat alive won’t feed itself.

Roland did better on these flights than the long flights home from Ukraine. It is amazing what a month of love and bonding can do. He was still cranky and tired, but clung to mommy instead of wiggling out of my arms and throwing huge fits on the floor of the aircraft. Our first flight was uneventful, but the next flight was majorly delayed. An air conditioning unit had blown a hole in the side of our plane and finding us a new plane took several hours. And  Roland had a major melt down during what turned into a five hour layover. He cleared two rows of seats in the waiting area. Seriously. Some people just quietly got up and found other seats. Others grumbled under their breath. My boy has lungs! (I need to take him to the DMV so he can clear the line for me.) At one point all he wanted to do was run (crawl) away and go get into other people’s bags. I made a make-shift leash and attached it to his shirt. He thought it was great until he realized he could no longer reach the other people in the waiting area and smack them. (Hitting is his new way of saying, “Hi! My name’s Roland!”) This led to melt down city, with the added effect of looking like he was freaking out over being chained up. Thankfully another passenger brought his one year old over to play. (Parents get it.) Actually it was really good for me to see that this one year old acted a LOT like my son. I realized that even though Roland turns two in 21 days he has a mental delay and I need to treat him like he’s still a baby. Watching the other little boy smack the stuffing out of our toys put Roland’s hitting in perspective and caused me great relief. I’m sorry but I have only ever parented one mild, gentle creature before; I know nothing about this boy business. My default is to over-react every time with, “Oh no, you think this is orphanage behavior? Is he violent? Will he need therapy?!!!”

We have since made high-fives okay and if he hits we say, “Oh not there, here!” and put out an open hand. He happily smacks away.

Okay so back to the miserable trip. We arrived at our hotel around 4:30am and still had to eat dinner. McDonalds is open 24 hours, but it turns out that neither of my smart children will touch McDonalds so we made the oatmeal I brought. At some point I realize it’s past 5:00am and we need sleep.

The next thing we know we wake up and it’s noon and we realize we have not checked out of our hotel room! So we call the front desk and the lady says, “Oh no, you checked in this morning, you have until tomorrow to check out at noon.” Yay! That’s like two nights for the price of one! It turns out she was new (and wrong), but they honored what she told us and gave us the next night for free. (Even though the next morning two room service people were startled to see us and tried to kick us out.)

So we didn’t check out (yay!) and instead went over to DuPont hospital in Delaware to meet Dr. Rahman and the WREX team. They watched Laelia play, took some little measurements of her arms and then strapped her up to a WREX. They are making one for her that will be ready in a few months. Laelia is excited!

Click here for the video.

I was impressed at how knowledgeable they were, and how willing to help Laelia they were. Her triceps are tight (she does everything with them) and they were adjusting the WREX to help loosen them up. I felt like I was on Team Laelia and we were working together for her. (I wish IEPs still felt like this.) I went into the appointment feeling like I needed to show we qualified for this, but they were just happy to help her. One of the guys held her upper arm firmly and asked her to bend her elbow. I was just about to explain that she didn’t have any biceps (required to do that) when she moved that little elbow a slight bit. Turns out she has a different tiny muscle (he explained which one) that did that for her and he noticed it right away. Wow. I’m used to knowing more about my kids than the doctors. Not this time.

The next morning (okay afternoon, but our schedules are totally wacky at this point) we headed over to Philadelphia Shriners. Laelia and Roland were really good for their appointments. Roland did not like to be measured with the “go-knee-o-meter”, but he calmed down right away. Laelia loves Dr. van Bosse and was ready to show off her walking skills. (Of course he was ready to sing her praises to all the other doctors.) She gave him a little bear we had picked up for his little son. It came all the way from Ukraine.

Laelia was also happy to avoid casting. She’s walking so well that they want to let her be mobile, continue to let the plates in her knees do their job and we’ll adjust the braces to  accommodate  her re-clubbing foot. So an easy appointment for my little girl. Turns out that when standing her knees are 15 degrees from straight instead of the 5 degrees when she’s sitting. To fix this they add a strap to her KAFOs. They didn’t have time to fix them while we were there so they’re mailing them to us on Tuesday. (It’s a long wait for this mobile little girl!)

She also got her x-rays like a pro. She told the technicians all about how she used to cry (very true) and how her mom used to cry (not true) and how everyone was sad (just her), but now she’s in kindergarten so she’s practically an adult and can handle silly x-rays. :)

While waiting for Laelia’s wheelchair to be fixed (they fixed it despite the fact that it’s not from them) we ran into the arm doctor: Dr. Z. (The Z stands for Zlotolow… but I know him by “Dr. Z.”) Dr. Z recommended we cast Roland’s elbows and do them one at a time so he’ll only be in three casts instead of four at a time. If he were a lot less mobile it wouldn’t matter, but to bind all his limbs would be mean to this active guy. We’ll begin casting the elbow in a week and a half here in San Diego. But the funny part was when Dr. Z walked in the room and my husband whispered to me, “Mark Ruffalo.” Totally! Am I right?

Also while we were in PT we let Roland run loose with a walker. He was knee walking for the first time ever and he loved it! Click here for the video.

Roland had had x-rays done before we came to minimize the poking and  prodding. We found out he needs his clubfeet casted (duh), possibly two tendonotomies  on them (two?!), his hips need a surgery (but NOT the awful osteotomies that Laelia had, just a release) and when he’s four he’ll get his knee surgeries. We’ll either get him in fixators (one at a time) or do releases and 8 plates like Laelia had done. It totally depends on the contracture severity. (Please please please no fixators.) First things first is clubfoot casting. That’s the Ponseti method for you AMC pros.  Roland was pretty good for the right leg and mesmerized by the wrapping. Then the left leg he started to panic since that one was getting a good stretch.

Then he cried for the next couple hours straight.

We had planned to visit the other few AMC families while we were there, but Roland was really not doing well. So since he is so new to our family and to medical treatment I felt I had to go someplace safe and just hold him. There was “no room at the inn” so to speak as our sweet deal with the hotel had run out and the Philly Ronald McDonald houses were full. So we drove back to Delaware to stay at that Ronald McDonald house there. (About an hour’s drive.) It was really nice.

Roland screamed all night long. No one slept.

He would jerk and then scream. Since we were all sleep-deprived zombies we didn’t really notice (care?) that the jerk always came first followed by the screaming. Lucky me got stuck with him in my bed so every time he screamed I would rub his back and comfort him. It wasn’t until we were on the plane and he was still doing the jerking thing that I started to worry. He would be sound asleep and then jerk or spasm (or convulse? or seize?) and then cry until I comforted him. Then go right back to sleep. Repeat and repeat. Now it’s scary because he was diagnosed (we had believed incorrectly) with convulsive disorder while in the orphanage. They also gave him something to get him to sleep in the orphanage, and for the first time we had given him something to help him sleep (and reduce pain)! Could it be? Is there a drug connection here? We discontinued the Tylenol with Codine immediately just in case. To my surprise the screaming stopped and the jerking stopped. Oh my goodness, was it the pain meds? Or just the shock of his first casts? Or did I happen to stop meds at the same time he happened to get over it? Was it really convulsing??? I have no idea, but not being able to give him pain meds is a bit of a scary thought as he has surgeries in his future.

I took this video on the plane. At the 52 second mark his body jolts and that was not me or the plane  turbulence doing it. He jolts. Wakes up. Cries. Then goes back to sleep. Anyone have any idea what that was? It happened a LOT. Just like that. Seizures?

When we finally got home it was near midnight. While on our lay over the vet had called and told us that we needed to put a feeding tube back into our cat since force-feeding was not getting him enough calories to survive. That surgery would cost $900. There’s no way we could afford that (as we’ve already sunk money into this cat already and now I have no job) so we called back and tearfully said, “Just make him comfortable. We can pick him up on Sunday.”

Since then we’ve gotten the cat to eat a little and been able to keep his medicines down him. We’re not telling the kids how bad he is just yet.

I have never been so happy to see my own bed. We put a sleeping Laelia in her bed and a sleepy Roland in his crib. I just slithered into bed like a snake and Charley even rubbed my back for a while. It was heaven, until Roland started to cry and Charley’s place in bed got  usurped  by someone younger and cuter. What can I say. ;) *sigh* I was passed exhausted, but thankfully he was doing better even without the pain meds. Charley got a full night’s sleep in the next room and was able to take over a lot of the parenting the next day because of that. So I’m happily blogging while Charley does all the heavy lifting.  Life is good! :)

Laelia is a walking, kindergartening super girl!

Monday, September 17th, 2012

I have to brag on my daughter for a bit. My big girl just started kindergarten and became a big sister all within the last few weeks. There have been a lot of transitions and changes going on around her, and she has been so mature about it all (most of the time). She’s been doing lots of big girl things, like helping her brother through his issues. And thankfully our friends have been there to make her feel loved. Here she is all dressed up for a party at Lauren and Ryan’s house. Chelsea came to pick her up and take her. She was so excited to go all by herself (as we couldn’t go out with Rolly yet) and  had me do her hair and dress her up. Then she made Roland pretend to be a prince and hold her hand. So cute!

She also is doing well in kindergarten despite the rough start. The school bus took her to the wrong school on her first day. She ended up in the nurse’s office for falling asleep in class so deeply that they thought she had passed out. She dealt with a little boy who hit her. She finished her first homework assignment. (Homework in kindergarten?! Boo.) She even convinced her aide that she was on the school lunch program and that she was a  vegetarian who had to eat cheese sticks. All this in the first few days of school!

Somewhere in there she’s learning letters and stuff. :) Except for Friday. Friday went like this:

Me: “Laelia what did you do at school today?
Laelia: “Watched Lion King and ate cupcakes. Oh I didn’t eat my sandwich because of the cupcakes.”
Me: “Did you learn anything today?”
Laelia: “Meh.”

Haha. Fortunately I’m *that* mom who calls school everyday to figure out how things really are. (Wonderful team, wonderful teacher, wonderful aide, wonderful school. And rest assured that they made her eat some of her sandwich. :))

She wrote, “I <3 Dad”

First day of kindergarten picture!

And here’s Laelia ten minutes before her school’s Open House. :-/

As far as the hard work Laelia has been doing in physical therapy, she has exciting new accomplishments to share! It all started in Ukraine when Laelia learned to walk without her crutches. She then brought that skill home to San Diego and was walking around the house for the first time ever. (Video here.) While I was back in Ukraine getting her brother Laelia learned to walk down a large step by herself. (Video by Linda  here.) And recently she mastered walking up and down the wheelchair ramp without her crutches! (Video here.)

Laelia’s boyfriend, Ryan, started to walk without his KAFOs (leg braces) and Laelia was super impressed. So we started standing every day for a few seconds in the mornings. She was up to 30 seconds, then a minute, then two! Finally she got up to three minutes! (Video here.) After that I had her start lifting one foot up slightly at a time, back and forth, like walking in place.

Then on Sunday, September 16th, she was “walking” in place so well that I handed her her crutches and dared her to take a few steps. She didn’t hesitate. She walked for the first time in her life in nothing but socks and shoes! No KAFOs (knee braces), no AFOs (feet braces) and no… pants. Well sue me. These things happen when they happen, and sometimes you’re not wearing pants. ;) (Video here.)

The next day she was walking quite a bit further, maybe five yards. And she asked me if someday she could walk without any braces or crutches or anything. (Video here.) In this video she specifically mentions wanting to walk up the ramp.

Off camera I said I’d give her some chocolate if she ever made it up the ramp and then she started to head towards the ramp! I  cautioned  her that she had only been walking for two days and the ramp was hard. She got a few steps up and started feeling the pain on those atrophied legs. I asked if she wanted to sit down. She said, “No, I’m going up the ramp. Take a video.” So I turned the video back on and watched as she bravely took one painful step after another. She cried the whole time, but wouldn’t give up even though she knew she could at any time. (Video here. And it’s hard to watch.)

I gave her a long leg massage after that and she felt better. Then she went to AWANA a couple hours later and even participated in game time!

I’m just so proud of my little daughter. (Although if she heard me call her “little” she’d correct me and say, “I’m a kindergartener,” with all the pomp of someone who just got their doctorate.)

And I love how independent and mobile she is. If I tell her to go to her room, she can walk there no matter where she is. If she’s sitting in the living room, she can scoot over to the step near the wheelchair ramp and use it to stand up and then walk without crutches to her room. That’s simply amazing. She puts on her KAFOs (full leg braces) and tennis shoes over them herself and then walks around the house opening doors and getting into things. I love this! And these abilities are new; just in time for her brother’s arrival and me needing more help from her.

Okay I have to wrap this up since I’m out of time and it’s late. Someday I’ll have more time and sleep and just happily blog away about my amazing children. :) In the meantime I’ll just be in awe of my little baby who is all grow’d up. Boohoo. Love her.

Videos

Friday, August 24th, 2012

Sorry I have been super busy and distracted with two kids at home and readjustments. I will update later, but thought I would post some videos in the meantime. Sorry this is all I have time for!

Click here to see the video of Roland leaving the orphanage for the VERY LAST TIME. Orphan no more!

Click here to see Laelia walking around the house WITHOUT HER CRUTCHES! (The noise Roland is making in the background is his “thinking” noise whenever he’s working something out in his head.)

Exciting times!

Family of Four

Saturday, July 28th, 2012

Blog changes! It’s now not all about Laelia anymore, but about her brother too!

It’s official! We are now (legally) a family of four! Introducing Laelia’s new little brother and our new son, Roland!

We now have a Lalibug and a Rollypoly. ;)

Laelia is thrilled with her little brother when he’s not trying to grab her face with his “grabby hands” (her words). He also has arthrogryposis and, we’re guessing here, but we think it’s the exact same amyoplasia type as Laelia. Both of them look so much alike it’s going to be hard convincing people that amyoplasia is not genetic! :)

Laelia will be five on October 3rd and Roland will be two on October 14th.

There’s so much to say, but I’ve been pretty quiet in the blogging world to protect the privacy of this process. Just know that I’ll be catching you all up on our foreign summer travels, adoption and everything Laelia very soon. (She can now walk short distances on flat surfaces without her walking sticks! And she learned to climb up on the couch! She learned to do both those things while in a foreign country!)

We love our kids so much!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!