Archive for August, 2013

Happy Gotcha Day!

Thursday, August 15th, 2013

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We take “Gotcha” day literally around here. Good catch, Laelia!

My baby boy’s Gotcha Day is TODAY! Happy one year home little Amerikrainian!

Last year on this day (August 15th) Roland left the orphanage and was promised that he would never EVER go back there. Welcome to family; family is permanent.

“Are you sure you want him? Would you rather have a ‘healthy’ child?”

Our son (the diamond in the rough, a pearl of great price, the treasure in the field) is forever wanted! Desperately wanted. Incredibly loved!

What they couldn’t see, we saw so clearly.

So did all of you.

“Didn’t you pick him up two days ago?” a nanny asked on this day last year. No, we hadn’t. Was he just a number? Another mouth to feed? He’s so much more than that.

I carried him out the formidable green gates, down the stairs with no handicap access, across the streets with no crosswalks and into the car with no car seat.

He literally left without a thing to his name. Well he would have. They striped him of clothing, and then when they realized we had left his extra clothes at our apartment in Kiev, an hour away, they suggested we leave him in the orphanage another day. (Um, no.) Finally they allowed us to take home different clothes (comically too big, mismatched and pink-laced) only because I asked really really nicely. Aaaaaaaaaaaaaaand it also may have had something to do with the fact I had just gifted them 100% of the money the Ukrainian government had in a savings account to feed Roland that would have gone to me. My back. Your back. Scratchy scratchy.

He had no toys.

He had no ability to chew the first foods we gave him. And he choked on his first snack. (Great job, mom!)

He was so scared during our walk around busy Kiev (on our aimless hunt for diapers) that he started shaking and then threw up down the front of my shirt. Cars and buildings and people and noise… this was all completely foreign to him.

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With no language and no way to get away he braved the terrifying umbrella creature over his head. What torturous moments in the rain.

And, even though I imagined this magical instant bond, he was also wary of this strange woman he was strapped to.

But then that woman put him in a bathtub.

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Or glorious day! He LOVED his first ever real bath! So much!

He discovered the microwave that was kept near the floor because “Let’s put microwaves on the floor!” said the dumbest apartment designer ever.

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And the best toy in the world was the door in the apartment between the bathroom and kitchen that he loved to close, then wait excitedly for it to open again, then close it again.

He didn’t make great eye contact.

He didn’t know how to hug or rest against me or cuddle.

But he was willing to learn. Slowly. Cautiously.

He fell asleep for the first time in his life that night with a Mommy right next to him, hand on his tummy–no bars, no distance.

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With those little stiff arms that would NOT bend.

Several days later Roland would get his passport and fly home.

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…and scream most of the 26+ hours of travel. And throw up on the plane. And hate us for doing that to him for a while. :)

Then he was home. And he was ours. And it was so surreal. That first night home I fed him a bottle of donated breast milk and rocked him gently. It would be three long, hard days of detoxing whatever drug was in his system before I got a moment like that again. Well worth the wait.

He is not the same boy I took out of the orphanage that day. He’s a maniac! Haha!

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(Click to enlarge.)

Happy one year home little man!

Roland

We love you.

To celebrate Gotcha Day he got chocolate! (Haha, not as great as it sounds thanks to his new metabolic issue.)

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We made sugar-free chocolate cake and sugar-free chocolate cookies to celebrate since Rolly now has sugar limitations.

Cookies: 3 mashed bananas

1/4 cup of unsweetened apple sauce

2 cups oats

1/4 cup of unsweetened almond milk

1 tsp vanilla

1 tsp cinnamon

1/4 cup of sugar-free cocoa powder

350 degrees for 20 minutes

Cakes: 1/2 cup ground walnuts (or crushed)

1/2 cup carob or cocoa powder (sugar-free)

1 tablespoon apple cider vinegar

4 egg whites

2 tsp vanilla

1 teaspoon cinnamon

350 degrees for 20 minutes

(The cakes tasted like sawdust so I suggest adding some almond milk or unsweetened apple sauce.)

New diagnosis

Friday, August 2nd, 2013

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my hubby and my baby

I haven’t wanted to sit down and open up on the blog lately. I have my fingers in too many pies, and a lot of my work is done online so when I have a minute to myself I don’t exactly want to bang out more copy at a computer. I’ll just make this brief, or as brief as I’m capable of. Last Friday Roland had a great day. He went to preschool. He wrestled with his sister. He got into the tickle fight to end all tickle fights that ended with all of us on the ground gasping for air. He threw some blocks and crashed his walker into everything. He grinned and laughed and spun in circles. Then it was dinner time. And he didn’t want any. Then he threw up. He’s thrown up before without incidence so we waited it out with a cup of apple juice. But he threw up everything that touched his lips until he cried. I put some glucose gel into his mouth and rubbed it into his gums when he wouldn’t swallow it, but it was too late. An hour after the first gag he was seizing. And we ran out the door to the ER.

We were in the hospital from Friday night until Sunday night. It’s thrown off our whole week. (Sorry for the 200 emails I’m ignoring and the two orphan care blogs for Aug 1st that posted on Aug 2nd.) The ER is only three and a half minutes down the road and he was rushed in and given some glucose after they recorded his blood sugar at a 14. (The lowest it should have been was in the high 70s!) The doctor said this level was low enough to cause brain damage and wondered aloud why the hell our insurance had not covered the life-saving glucagon gun the last time he did this?!

[For our new readers, about 8 months ago at the tail end of December Rolly had a similar seizure fit and a ridiculous blood sugar score of 19. I blogged about it here. The doctors guessed since it was an isolated incident and probably wouldn’t repeat after he was getting good nutrition. We chalked it up to a lack of “reserves” from poor nutrition and orphanage life in general. Our insurance even refused to cover the glucagon gun making it almost $500 out of pocket and outside our budget. So we watched him like a hawk for three months and then shrugged it off.]

Now that he’s had his second episode, despite excellent nutrition for almost a year, it’s clear our son has an unknown metabolic disorder and a temporary (until we can figure out more) diagnosis of “seizures due to low blood sugar.” It’s like he’s hypoglycemic, but just sometimes. And both times his crashing has had a clear progression of lack of appetite, fasting, lethargy, vomiting and then, after lots of vomiting, seizures. And even though this process takes a couple hours, that’s still really fast! Thankfully after this second life-threatening episode our insurance finally covered (in full) the glucogon gun. Two of them actually. And a new monitor.

Rady Children’s hospital is excellent when it comes to parent training. We were re-trained on our glucose monitor that has been doing nothing but collecting dust for eight months. And I used the glucogon gun on my son to test if it worked while he was still in the hospital. It worked great, but dang. The needle is the size of the inkwell in a pen… just really big. Roland was pretty mad at me after that.

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yeah I hadn’t given him the shot yet

Then I took his blood every 15 minutes after that for an hour. Yeah. *Me.* The girl who passes out watching other people give blood and has passed out twice from giving blood herself was taught to take blood and test the sugar content. And I can do needles now. I didn’t even pass out a little bit!

I even practiced shooting Mr. Bear full of insulin. Roland looked so protective of Mr. Bear after that.

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(check out the countries represented)

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Laelia cried the whole first night, refused to sleep without Roland there (they share a room) and said in a pathetic voice, “He’s gotta be okay. He’s my best brother in the world.”

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Best brother got an IV in each arm. One to take blood and one to give sugar.

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Then best brother tried to pull out both IVs like a million times until they were forced to put arm immobilizers on him.

So we’re home now. We’re doing okay. Roland is his old self again. We’re just all in a daze figuring out our new normal.

And we have appreciated all your prayers so much. And those of you who just wrote to ask how we were doing and say you were thinking of us, and those who offered meals or help, or those who visited… it just meant the world. It was very sustaining and I know I never thank people enough in the moment. I just suck every last drop of love or energy or help they’re offering and then a week later when our heads are above water I stop and think, “Wow that was amazing and they meant so much to us. I hope they know that!” So thank you! You’re appreciated. I hope you know that.

Alright I’m tired and the kids need a bedtime story so I’ll wrap this up.

Right now our three biggest issues are:

1). Getting an appointment with the metabolic doctor. I’ve called and finally I was told a WEEK after our hospitalization that the doctors would “talk about it” and give me a call “in a week.” I verified they actually meant I had to just wait around for 7 days and couldn’t make an appointment in the meantime. Yes that’s exactly what they meant. But, hey, maybe they can get us in next month! Yay? :-/

2). We’re new to this and right now we’re constantly worrying about what he’s eating, how much he’s eating and how often he’s eating. It’s stressful. Like right now he won’t eat dinner and that won’t fly these days! And peanut butter on whole grain bread is served for like every meal. So eventually we’ll figure this out, but right now it’s stressful.

And 3). Roland’s new diagnosis disqualifies him for Head Start. (Where he would go next year for preschool after aging out of Early Head Start.) We were counting on that. And I doubt anyone else will take him either.

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