Archive for the 'big boy' Category

First day of school!

Friday, September 6th, 2013

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First day of 1st grade and first day of preschool WITH bus service!!!

(How dare this girl be in 1st grade!!! She was in newborn diapers yesterday! And didn’t we just bring home Roland from the orphanage ten minutes ago??? Not right!!!)

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After so many weeks of wanting to ride the bus, little Rolly was doubtful this would happen.

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When the first bus arrived they started cheering!

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It was for Laelia. This marks the very first time our bus service has worked out correctly on the first day of school. For preschool the bus never came and we ended up fighting them for a while until they realized we were NOT backing down and gave us a bus. For kindergarten the bus took Laelia to the wrong school while both Charley and I drove to the correct school and then went crazy looking for her.

But today with the same bus service nothing went wrong! Well except for Roland cried when Laelia left. I should have known that would happen. He wanted to ride the bus with her. “No bus! Ba back! (Come back) No! Waywe-a! (Laelia) Ba back Waywe-a! Bus! Boo (school) bus! Boo bus!! No mama no!”

Yeah after 15 minutes of that, his own bus showed up.

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Roland’s bus driver strapped his car seat in. (Yes still pink. By the time he’s in college we’ll get him a blue one.)

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Actually I was really worried. Roland went blank. I asked if he liked his school bus that he’d been begging for all summer and he didn’t say anything or give eye contact. He did not understand when I got off the bus without him and I watched his blank expression as he drove away. I was getting flashbacks of his trauma coming out of the orphanage.

But his daddy was waiting for him when the bus pulled into his school. Charley called me right away and reported that Roland saw him and was all smiles and happy to be back in his classroom. Then he chittered endlessly about his school bus adventure in Rolly language. He gets bus service two days a week and he has school for only three hours in the morning so it’s not too much for him.

After I put Roland on the bus I shot over to Laelia’s school for orientation. I met her teacher and aide and gave them all the usual warnings. ;) Laelia clung to me doing her “fake shy” thing. But two seconds later she was in the swing of things. We even decided not to bring her walking sticks this year and see how it goes!

The only sad part was when Roland came back home on his bus all smiles and then went through the whole house looking for his sister who has three or so more hours of school a day. He asked maybe three thousand times, “Waywe-a where?”

When Laelia finally got home she was sound asleep on the bus (as usual) and Roland screamed his hellows so forcefully and so jubilantly that she woke up. Then they hugged a lot and two minutes later they were fighting over something. 0_O

Love these kids.

And these kids love school.

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Summer 2013!

Friday, September 6th, 2013

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Let’s see what the sweet, precious and totally not insane children have been up to all summer shall we?

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In July Laelia lost her first tooth. I took a picture with the Tooth Fairy app while Laelia was asleep. The next morning she was so onto me. “You said faeries were pretend. So you made that fairy in the picture. So I want to make a fairy!” And that led to the second picture where she pretended the fairy was stealing all her teeth as she screamed, “NOoooo Fairy! Not my TEEF!!!!”

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All summer we tired these kids out! Sometimes they even made it to their beds!

Thanks to Lauren and Ryan the kids had access to a swimming pool this summer!

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And of course we live next to the beach so lots of beach time!

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Then we met up with family from Tennessee and Utah at Newport Beach!

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And that night had dinner in Downtown Disney!

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Let’s see what else…

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Roland waited for school to start again. He wore a backpack and asked for a school bus.

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All the time.

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Every day.

School had not started yet!

Then I have some pictures of these masked children, whoever they are.

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Laelie bug

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Rolly bug

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Reading.

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Mom got slightly better at sugar-free dessert. This is a chocolate “cake” with Greek yogurt “frosting.”

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Party time :)

Oh and Grandpa and Grandma came down and took the kids to the zoo!

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Watching the monkeys.

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Roland actually climbed up that little step all by himself!

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Baby flamingo!

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Feeding the goat. (Roland called them all “doggie”)

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My bugs

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She’s nose to nose with this guy.

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Balboa park train ride.

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Balboa park walk.

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Children at fancy restaurant… fail (yes that’s Laelia’s foot.. stinker)

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Faaaaaaaaaaaaaaaail

Staying quiet or sitting up is beyond them!

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Laelia started making maps this summer. She loved to draw the map and then make a compass for it. Her maps led through forests and tunnels and passed monsters until you reached the X.

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“I did this all by myself.” Danielle, Charles’ former coworker, tutored Laelia in reading all summer. Now she loves to write sentences. And the compass has North, South, East and West, mostly backwards but in the right spots. Adorable!

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We also collected shoes for Angel Bins.

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We collected 530 pairs and all proceeds went to a Southern CA family adopting a special needs little boy in Ukraine.

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All in all a good summer. :)

PT newness

Friday, April 12th, 2013

Two new tricks!

1. If Laelia puts on her KAFOs (leg braces) in bed then she can just scoot off her bed and walk around. But if she is on the floor when she puts them on then she has to scoot or roll all the way to the living room step in order to stand up. (Here’s a video of her standing up using the living room step. It’s one of the first times she ever did it so it’s slow. Now it’s second nature to her and goes quickly.) The other week at physical therapy we discovered she could stand up all by herself using only a small sturdy table! I kept saying how I wanted one of those special tables for her room so she doesn’t have to go all the way to the living room to stand. Well those PT tables cost $300. Yeah… no. But we found something that works just as well!

(Ignore Roland’s whines. Whenever Laelia does anything under the sun he is right in line waiting and begging and whimpering to do it too.)

2. Now Roland is working on standing up too! The little guy walks all over the place, but standing up is something he’s still learning. And boy does this kid love standing practice! Anytime Laelia uses the step to stand up, Roland will try it too. He begs to go “down” and then rolls to the step, gets into position and then I help him stand. He grins so huge every time and then walks up the ramp and begs to go “down” again to the floor to do the whole process over. Repeat and repeat infinity times. I get sick of it way before he does. :) What energy!

Aren’t they the best kids ever?!!!

:)

Roland is walking!!!!!!!!!!!!!!!!!!!!

Saturday, February 23rd, 2013

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Laelia has been a rock star standing queen for a while. Here she is with her new KAFOs!

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Roland just learned to stand! Here he is with his new KAFOs.

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Now they stand together!

(And the new KAFOs happened during an insurance hiccup and we are now $10,000 in medical debt because of them. *bangs head on wall* Yay… :-/)

But wait, there’s more!

On Thursday Roland and I spent the morning at Early Head Start, a preschool (only three hours, two days a week) that will help Roland catch up on his language delays. Right before lunch I asked him to sit in his chair at the table and he didn’t want to. He shook his head, said “no” and started to walk (using his little cart) the opposite way. So I took his cart away and led him by the hand to the chair. My little willful guy decided that right then and there he was going to walk independently for the first time ever AWAY FROM THAT CHAIR! Hahaha! So his teacher was cheering and I was half cheering half chiding as Roland took his very first independent steps since being out of casts. And the very first to be initiated by him. He took several steps, got redirected and then walked straight to the table. Once at the table I put him in the chair where he proceeded to scream his little head off in protest. Oh boy is this class in for it. :) A few minutes later he was happily playing with his food at the table. Gosh that independence streak will help you later in life, little man of mine, but what a stinker you are! :)

The next day (yesterday) he got a tummy bug and was a little puke factory.

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“I swear it was having to sit at that table. It gave me the plague.”

But today he is totally back to normal and wanted to walk some more!

And he did!

He walked independently several more times!

It took a while for me to get him to do it again, but finally he did it!

Then just now I was sitting in the chair and taking random videos of the kids when he decided to walk again! Well more specifically he decided to yelp for Laelia to get him going and then he walked to me! I didn’t even have a bribe that time!

This just happened, people!

Oh he’s so close to just taking off and walking EVERYWHERE! I can’t wait!

Roland’s knees and legs

Saturday, February 16th, 2013

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I’ve already done a blog on my daughter’s knees and their progression from bendy to straight so you all already know how amazing this little girl’s story is. We went from doctors absolutely flatly refusing to cast her knees five years ago (and denying us for stretching knee splints because Laelia was too “disabled” to utilize straight legs) to commuting to Philadelphia so Dr. van Bosse could get this little lady’s legs super straight and walking everywhere. She’s even begun to climb small steps!

Five years later and one of the original doctors who didn’t want to cast Laelia’s legs straight was all too willing to cast Roland’s legs straight. (Saving us weekly flights to Philadelphia.) Medical practice evolves, thankfully, and I want to believe my daughter was a pioneer in that regard, at least in a small way. I do know her pictures were used in many occupational therapy presentations across the country, and I have met people who have seen this blog and changed their expectations for their AMCers based on it. Her story was made stronger by the dim predictions of some of the best doctors in orthopedics early on. And I’d like to think there was a reason we did not have instant access to the best advice and therapy techniques. Maybe it was so people could learn from our mistakes. Maybe it was so we could travel to Seattle and Philly and Kansas City and meet many people. Maybe so others who had also missed the boat could get hope that if Laelia could start walking at age 4 and independently at age 5 then their kids could too.

Well, I know one AMCer who has had his life changed by Laelia’s experiences: her brother. Someone who was not believed to ever walk himself and started doing that very thing after six months* of Ponseti casting, bracing and stretching.

(*Now Laelia’s experiences seem to be at one end of the spectrum  and Roland’s at the other. Roland responded really well to casting. He avoided tibial subluxation (a complication of casting knees) and he had enough of the right kinds of leg muscles to walk without needing years of PT intervention first. What has taken Laelia years has taken Roland months. We know we got off easy with him. So I guess I’m not saying, “Roland achieved ambulation in six months and so can you!” The same exact therapies would not have worked as quickly on Laelia’s body. Every AMCer is different. But I am saying even the most severe cases of amyoplasia can be ambulatory. I know two adults around my age who have decided to start the process of ambulation or easier ambulation later in life. And Dr. van Bosse has seen many many adopted older kids with AMC and increased their functionality greatly!)

Okay now on to the Roland pictures. Here’s what’s been going on for the last several months.

Roland’s knees

Roland's knees

(Click on any picture to enlarge it.)

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Those knees were stuck around 100 degrees for one leg and 90 degrees for the other.

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Stretching and gravity didn’t straighten them much.

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Roland’s little legs during tummy time.

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Combined with his little curved feet we knew Ponseti casting was in his future.

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After a month home we had stretched his arms to around 15 degrees of bend, but his knees only gained a few degrees of range from the stretches.

Time for casting!

Casting montage!

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Dinosaurs from Philly. Dr. van Bosse started us off with the first set of casts. The following were all done locally.

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Red

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Green

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Black

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Purple

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Blue

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Right after blue were removed. Look at those straighter feet too!

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From the side

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Red, green, blue and purple

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Orange was our favorite!

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Blue again. This is Roland playing at the Polar Bear exhibit at the zoo.

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Right after second set of blue casts were removed.

They gave him little stockinette gloves to keep him from scratching at that poor skin.

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Look how straight those knees are getting!

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PINK!!!!!!!!!!!!!!!!!!!! Just for kicks.

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Standing practice! (Hiding the pink casts under yellow socks. ;))

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Some skin breakdown meant we needed to take a break from casting. But his feet were very close to perfect!

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This is how far we got his knees. It’s easier to tell in x-rays.

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FIRST REAL BATH IN MONTHS!!!!!!!!!!!!!!!!!!!!

(The casts smelled so bad.)

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The casts were bivalved (cut in two) and became removable.

We kept them on with ace bandages while his leg braces were being made.

Those ace bandages had to be burned afterwards. STINK!

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Finally new KAFOs! (Knee Ankle Foot Orthotics) The left leg needed more time to heal at this point.

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In Payless getting his VERY FIRST PAIR OF SHOES! He’s really thrilled.

Once they healed enough (and we put a ton of liquid skin on the sore areas) someone could wear his KAFOs again!

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And he’s standing independently for the first time!!!!!!!!!!!!!!!!!!!!!!!

(And he’s thrilled about it.) :)

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You’ve come a long way little guy.

:)

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

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

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!

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!

Zoo

Tuesday, October 16th, 2012

From the Roland Diaries: “Today I met a hippo. Yep. Welcome to America. This is my normal now.”

My husband and I joined the PTA at Laelia’s school and we won a free zoo pass for signing up! So Rolly and I took advantage of our only day without a medical or adoption-related appointment this week and headed over to zoo it up!

Rolly vacillated between underwhelmed and overwhelmed, but he only had one age-appropriate fit (not orphanage-related melt down) after we’d been there for three hours. (I had to take him away when he started banging on the glass to get a snake’s attention. For one thing, you can’t do that. For  another  thing, hello! bad idea.) Overall he did pretty good in my opinion. I’m definitely trying to be able to take him out more.

The only downer about our day (besides the heat) was that we got a couple negative comments from other zoo-goers. One couple by the flamingos actually said under their breath, “That’s horrible, that kid’s actually in casts!” To which his partner responded, “Shut up she can hear you!” Blarg. And two girls stared at Rolly instead of the monkeys. They even followed us to stare. WHERE ARE YOUR PARENTS?! No where? Cool then it’s my job. “Um… girls? Shoo.” They gasped and giggled and ran back to their school group. :)

Then one woman asked what happened to Roland’s arms. I said, “Nothing’s broken, it’s for a joint condition.” She said, “Oh yeah when I adopted my daughter from Russia we went through clubfeet casting.”  ***gasp*** That led to a whole wonderful discussion on international and domestic adoption. She even said a few words in Russian to Roland that he seemed to recognize! And I met her youngest daughter (with a heart condition) who she adopted domestically even though she was in her late 50′s! So cool! It all happened right there in front of the fox cage.

Roland also tried to say different animal names which was fun. Of course the polar bear became “teddy bear” and the lion and goats were “kitties,”  the elephants were doggies (“woofs”) and everything on four hoofed feet was a “deer.” Oh and anything with wings was a “birdie” except for the secretary bird which Rolly just barked at. :)

Okay enough talk, here are some pictures. :)

Flamingos

This bird must be related to Roland! (Screams even though not threatened. *snicker*)

Giraffe

Butterfly

Roland to Condor: “Birdie!”

Condor to Rolly: “Lunch?”

Elephants!

Roland started making barking noises at this guy. (Something his sister taught him. *sigh*)

Secretary bird came right up to us!

DRINK THIEF!!! (He wouldn’t let go or give it back.)

“kitty!”

“teddy bear”

Sticking his tongue out like the snake.

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Happy boy!

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.