Archive for January, 2013

Remembering the heels

Thursday, January 24th, 2013

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There was a physical therapy convention in San Diego this week. Hundreds of PTs from all over swarmed the convention center. As we walked by several cheered on Laelia as she manuvered through the Hyatt hotel lobby. Yep we were in PT world. Laelia was the star. Haha! A few helped her through the front doors (there was a lip) and one said, “Oh! Arthrogryposis!”

But we weren’t there to attend the conference (I’m not a physical therapist), just to slip in the hotel lobby and see Reenee Donohoe, a PT out at Dupont Hospital in DE. (The one holding Roland in the above picture.) We had met up with her briefly in Kansas City during the 2010 AMC conference, but only briefly. I mostly know her from Facebook.

Remember when Laelia first tried some crutches?

 

Well Reenee saw this video and wrote me on Facebook:

“Hi,
I saw your video. I think Ms.L would do better standing with a wedge under her heel. Try duct taping ~ 1 cm piece of foam, cardboard, or cork under her heel and she’ll stand and balance straighter. She might need a little more than that but it is a good start.
Reenee”

Two weeks later while Laelia was playing with wooden blocks I got a wild hair and duct taped them to the heel of her shoe. I said, “Hey Laelia do you want to wear some fancy high heels?” She said no. Ha! Too bad!

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Immediately she was standing without assistance for the first time in her life! A mere few hours later she was walking with full confidence and no falls!


 

Eventually Laelia got good at walking and we switched to three dominoes duct taped together which made for a lower heel. Then once knee surgery straightened her out, little Laelia no longer needed heels.

So yeah we like Reenee. :) Her wedges (heels) idea wasn’t bad either. ;) And it was fun for Laelia to show off her (now expert) walking skills in person just over a year later. (Part of me still can’t believe she walks.) And it was also nice that Roland got his PT consult in person instead of over YouTube and Facebook. :) We even met some new friends: baby Tyler and his parents! All in all a great visit!

Laelia is a super walker now, but I have to admit that sometimes I miss that little princess in her high heels. :)

Disneyland

Wednesday, January 23rd, 2013

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

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Seriously this picture is the best Disneyland advertisement ever.

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This one too. ;)

We had a great time!

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

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

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Our family enjoying Disneyland.

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

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

Excerpt from my diary last weekend:

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

New Feats for Rolly Man!

Monday, January 14th, 2013

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

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Roland before any medical intervention.

 

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

WITHOUT A WALKER!

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

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

Take THAT arthrogryposis!!!

Oh…

You may all commence screaming now.

YAY YAY YAY YAY YAY YAY YAY YAY YAY YAY YAY

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

Perfect!

Monday, January 14th, 2013

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

Life is pretty perfect.

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

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The pampered princess

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The pantsless prince

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

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This one discovered a duck.

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This one discovered a bear.

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Here they are exploring the frozen tundra.

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Are you seriously this cute?!!!

Yes!! All the time!

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

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

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Here’s one playing cards.

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Here’s one playing with a toy.

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Acccccccccccc! CUTE FRIEND!!!

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

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

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Learning to play the (broken) piano.

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

I love my kids so much!!!

I love my husband so much!!!

HAPPINESS!!!!!

 

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

Tuesday, January 8th, 2013

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

Click here for the video!

Walking down the aisle… the proudest mommy moment

Sunday, January 6th, 2013

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

~

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

~

Then it just snow-balled…

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

 

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

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

 

 

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

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They said she never would.

She did.

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Thank you God.

*tears*

 

Roland singing Jingle Bells

Wednesday, January 2nd, 2013

Click here for a video of Roland singing “Dee do balls” while playing guitar. It’s cute. (He’d been out of the hospital for 10 hours or so when this was taken.) Yep he’s completely back to normal now.

Roland don’t ever scare me like that again, you hear me!

Tuesday, January 1st, 2013

It went like this.

Super happy crazy boy one minute…

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(Click here for video.)

And seizures and vomiting the next minute.

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We had a super fun time with pizza and friends. Everything went great. I put two hyper, pizza-covered kids into bed around 9:30pm. The next morning around 8:00 Roland woke up covered in vomit.

After that he stayed in my arms for the next three and a half hours. I admit I enjoyed it. Baby in one arm and Facebook in the other. We took naps together and he snuggled under my chin. Then he would make a noise, I would get out the bucket and he would puke and then go right back to sleep in my arms. I just purred over him. He is usually so crazy rambunctious so this was nice. We even took a picture to remember this.

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But the poor guy kept throwing up which worried me. He threw up small amounts eleven times in those three or so hours. I had a cup of apple juice ready for him but he wouldn’t stop puking or sleeping long enough to get any fluids. Then right before noon he started his first seizure. I ran him out to the living room to show my husband. It was the tail end, but Charley took a video. When he started another one we ran out the door. I jumped in the driver’s seat while Charley loaded him into his car seat. He didn’t look good. The emergency room is only about four or five minutes using back roads so I took off instead of calling 911. Roland had five (maybe more) seizures after that. He was seizing in my arms as I ran him into the ER, and he continued seizing as the RN took him from me. The RN’s name was Steve and he was a big guy. My little guy looked *so* little in Steve’s arms as they quickly made their way through the double doors. Whereas I was a panicky mess, Steve calmly described the seizure as it was happening and that made me feel like maybe this wasn’t so bad. Maybe everything was fine and they see this every day and it turns out okay. So I calmed down a lot.

Then I answered about 800 questions about arthrogryposis and adoption, none of which were helpful for a seizure, but the doctors needed his history. One doctor asked if I was his mother and then demanded to know why I left him in an orphanage for almost two years. I explained I adopted him and he’s been home four months. She replied incredulous, “Wait, but you said you were his mother!”

The truth is shocking. He has no medical history. I don’t know what he weighed at birth or if he came early. I don’t know how healthy his mom was or what surprises are in his genes. I don’t really know what they gave him at the orphanage. I don’t know what drugs he’s been exposed to. I know he has a lead count of 2 (at 3 they do medical intervention) and he has had to catch up on vaccinations, but other than that I’m no help at all. I kept being asked, “Has he ever done this before?” And kept having to answer, “Not in the last four months!”

And in the back of my mind was the knowledge that he had been misdiagnosed with convulsive disorder in Ukraine. That diagnosis turned out to be false. (The “doctor” had mistook a jerking arm for a convulsion because she didn’t realize AMC came with muscle loss and he would need to swing his body or bounce his arm to move it. After meeting Laelia and seeing how she moved the doctor said Yegorka [Rolly] did not have convulsion disorder after all.) But what if it was true? It was scary to think about.

I was worried Roland would be scared of the hospital or strangers, but at this point Roland was completely unresponsive–no eye contact, couldn’t close his mouth, non verbal, limp, eyes rolled back. The nurse was checking out his head and shoulder for veins, but finally it was decided that he needed an emergency cast removal in order to place the IV. I was glad Laura (from Dr. W’s clinic) was there to do it since we know her and she is super fast. Roland had a startled response during the sawing part, but he was not “there.” His eyes were crossed and downward, the right side of his mouth did not move while the other side twisted in pain and he looked like he was in a coma. I kept crying, “That’s not normal. He never does that.”

Roland was given ativan and glucose. He was hypoglycemic with a blood sugar count of 19! Normal for his age is 70s to 80s! Eventually Roland made a noise. I asked him to say hello but he couldn’t. (I ask him to say hello about a hundred times a day and he happily complies about a hundred times a day.) He was rolling his eyes looking around the room, but unfocused. It was creepy. Eventually he looked right at me and seemed to recognize me (he had not up until this point) and he lifted his arms for me. The nurse said, “That’s the glucose working!” I asked him again to say hello and he tried so hard to speak but couldn’t. A tiny squeak came out, but you could tell he was trying. It took him a while to come out of the seizure. Eventually Roland looked at me, right at me, and said “da.” Then he looked down at his arm which now had no cast and an IV and wires and he just looked baffled.

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Roland’s right arm without a cast and with an IV.

Every finger had to be poked more than once so eventually he was just covered in bandaids.

Charley and Laelia then came through the doors at this point. We were transferred from the ER to the critical care unit as a family. Because they had to move fast and Laelia cannot walk that quickly Steve put her on the bed. She comforted her brother and enjoyed the ride. Roland was still completely out of it and barely noticed his sister.

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We left the ER and arrived at the critical care unit. Roland was connected to more monitors and the doctors came up with a game plan. They wanted to get Roland’s numbers up, keep them up long enough to make sure he was out of danger, and then purposely lower them again in order to run tests. So he went from 19, up to 120, then artificially crashed back to 40 to run the tests. Poor guy was so scared every time someone took his blood pressure or poked his finger or anything. Then when they introduced glucose again after the blood draws his numbers shot up to 250! His poor body just couldn’t regulate.

The hospital had Christmas presents for patients left over so they gave him a dog pillow. Roland hugged and kissed it (he’s really attached to stuffed animals) and then fell asleep with his wittle face pressed against the bars. That was his favorite way to sleep.

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After the tests were run we had to wait overnight to get answers. In the afternoon Roland was sick of the hospital and tried to take a nose dive off the crib and pull his wires out. I ran home with Laelia and we grabbed Roland’s pillow, blankie and teddy bear for comfort. (Also a toothbrush for Daddy.) Roland settled at that point and fell asleep… only to be woken up several times with blood pressure tests and blood draws and finger pokes and monitors beeping.

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Okay here’s what we know. We know the seizures were absolutely caused by low blood sugar. Not an injury (that boy is always bumping his head), not a brain condition (so no MRI needed) or anything like that. Here’s what we don’t know: why vomiting caused his blood sugar counts to crash that much. It shouldn’t have. Also we don’t know if the low blood sugar caused the vomiting or if the vomiting cased the low blood sugar.

Here’s the doctor’s guess after two days in the critical care unit: Roland had very small reserves for glucose from his life in the orphanage, exposure to lead, lack of medical care and poor nutrition. The doctors say that all his medical issues from being deprived early in life will be completely reversed with time and not to worry, but we will keep an eye on his blood sugar from now on. We have been educated about hypoglycemia and what to do in an emergency. (Of course our insurance denied us for the emergency medicine that would have saved our son five seizures if we had had it. Thanks insurance!) We got a chemistry quiz and biology lecture from the endocrinologist who should really be teaching in a classroom somewhere he’s that good. When we got home we had training on this new condition, a glucose monitor that even blood-phobic me can use and an emergency plan in place. After one night’s sleep at home Roland was happy and bouncy again.

 

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Just kidding guys! I’m fine now!

:-/

 When we got home we were informed that we had end of the year adoption reports to do. They ask what Roland’s diet, daily routine and health is like at home with us. It took everything in me not to write, “Like hell you care! F you!” and send it back just like that. But if Russ*a can punish thousands of dying orphans for the mistakes of 19 American families (out of 60,000 over 20 years) then I had better do what’s asked of me and what I’ve promised to do and continue to play nice. Still I’ve been pretty mad at Roland’s birth country, orphanage and birth family as well as those in my church and community who do. not. care.

*deep breath*

But now we’re doing well and everything is slowly getting back to normal. Roland says hello.