Archive for the 'baby boy' Category

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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June 30th is arthrogryposis awareness day!

Saturday, June 29th, 2013

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It’s Arthrogryposis Awareness Day!

I wanna play! I wanna play! What do I do?

I’m glad you asked! There are four things you can do to participate!

1. Wear blue today!

2. Share pictures of you wearing blue on Facebook and tag me so I can show the kids!

3. Practice pronouncing ar.thro.gry.po.sis!

4. Learn three new things about arthrogryposis!

To help you with #4, Tracey shared one fact a day about AMC every day in June leading up to AMC Awareness day. I have copied and pasted them below.

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Day 1: Arthrogryposis is defined as multiple congenital (from birth) joint contractures or multiple joints that are stuck in 1 position and have very little flexibility. (A comprehensive fact sheet (6 Pages) can be downloaded here: www.tiny.cc/amc30days and a short (1 page) fact sheet can be downloaded here: www.tiny.cc/amc13)

Day 2: a newborn has to have 3 contracted joints in two different body areas to have a diagnosis of Arthrogryposis. ARTHROGRYPOSIS AWARENESS DAY 2013.

Day 3: Arthrogryposis in an umbrella diagnosis, which means that it is part of other many conditions and syndromes. These conditions and syndromes are usually referred to as the type of arthrogryposis. Currently, there are 400 identified types of AMC. Amyoplasia, Distal and Escobar Syndrome are the more common types (but they’re still rare within the general population). Some individuals never have their type of AMC identified. ARTHROGRYPOSIS AWARENESS DAY 2013.

Day 4: All types of Arthrogryposis occur 1 in 3,000 live births. Each type is than more rare from there. Amyoplasia occurs approximately 1 in 10,000 births. Sadly, about 20-30% of infants born with AMC won’t make it to their 1st birthday because they have severe central nervous system dysfunction or have a genetic type that is lethal and some baby’s don’t make it for unknown reasons ARTHROGRYPOSIS AWARENESS DAY 2013

Day 5: Arthrogryposis is caused by an unborn baby not moving properly during fetal development. A baby has to move its limbs for proper joint development to happen. When a joint doesn’t move for a long period of time, it gets stuck and contracted. Why a baby fails to move its joints depends on the type of AMC. For example, In Amyoplasia (a non-genetic type), it happens the muscles fail to develop. In Escobar Syndrome (a genetic type) the messages that impact a person’s muscle movement is affected, the message isn’t able to get through very well making it more difficult for them to move ARTHROGRYPOSIS AWARENESS DAY 2013

Day 6: Common joints contractures in arthrogryposis include: Clubbed feet or vertical talus, extended (straight) or flexed knees, dislocated and/or externally rotated hips, internally rotated shoulders, extended or flexed elbows, flexed wrists, adducted thumbs (stuck-in- palm), fingers fisted or extended ARTHROGRYPOSIS AWARENESS DAY 2013

Day 7: arthrogryposis is not curable but it is very treatable! Usually the goal of treatment is to make a person as independent as possible in activities of daily living (ADL’s). ADL’s are those things you do every day to take care of yourself (eating, dressing, ect) ARTHROGRYPOSIS AWARENESS DAY 2013

Day 8: Treatment for arthrogryposis usually involves: stretching (to increase joint range of motion), physical therapy to work on overall strength and gross motor skills (walking, standing), occupational therapy to work on fine motor skills and self-help skills (grasping, feeding), speech therapy to work on speech and oral motor skills, serial casting (including the Ponseti Method for clubfeet), splinting, bracing (AFO’s, KAFO’s) and orthopedic surgery (osteotomies (bone cuts) to change angle or rotation of a bone, soft tissue releases (releasing and lengthening tight muscles and tendons), muscle/tendon transfers (changes what body part a muscle/ tendon moves) and external fixators (metal frames that are applied over a deformity that is exceptionally rigid/tight and needs to be corrected slowly or to length short bones). And there are other therapies as well: hippo therapy (using horses for therapy), aqua therapy (therapy in a warm water pool) and massage therapy to name a few.

Day 9: Arthrogryposis is considered an orphan condition by the National Organization for Rare Disorders, Inc. (NORD) because it affects less than 200,000 people in the United States. Statistically speaking, The US has 313 million people so about 104,000 people would have arthrogryposis but this doesn’t account for the babies who don’t survive infancy. Rare disorders and conditions are significantly less like to be researched. ARTHROGRYPOSIS AWARENESS DAY 2013

Day 10: 1/3rd of all cases of arthrogryposis are amyoplasia type. Amyoplasia means a lack of muscle development, this means muscles can be completely absent (they just failed to developed during fetal development) and the ones that did develop can be weak or are not of normal size. Amyoplasia is not considered genetic because it doesn’t repeat in families however there is still no known definitive cause to explain why amyoplasia occurs.

Day 11: arthrogryposis can affect just the arms/hands (sometimes referred to as upper extremity only) or just the legs/feet (sometimes referred to as lower extremity only) or it affects all the limbs (sometimes referred to as all extremity). Having all 4 limbs affected is the most common.

Day 12: Many people with arthrogryposis have other co-existing conditions. These other co-existing conditions may be part of their type of AMC. Some of these other co-existing conditions include: cleft lip and/or palate, an airway that is narrow, weak suck/swallow, gastroschisis (intestines on the outside), tethered spinal cord, facial birthmarks (also called stork bites, angel kiss), micrognathia (small or recessed jaw), vision and hearing impairments, plagiocephaly (abnormal head shape) and severe scoliosis (curvature of the spine) can cause lung problems. These other conditions can lead to needing trachs (a tube in the airway that helps with breathing), g-tubes (a feeding tube), hearing aides and cranial remolding orthosis (helmet). ARTHROGRYPOSIS AWARENESS DAY 2013

Day 13: The distal arthrogryposis types are characterized by the joint contractures being isolated or more severe in the distal joints, basically the hands and the feet. Distal means furthest from the core of the body), but other joints can be affected. Hands being clenched and fingers stuck in a fist and clubfeet are very common. Most distal types are genetic but some are not. There are approximately 10 types of Distal arthrogryposis. ARTHROGRYPOSIS AWARENESS DAY 2013

Day 14: lack of movement during fetal development is called Fetal akinesia. The fetal akinesia leads to the arthrogryposis (joint contractures) but there are other signs in a newborn that they didn’t move properly while in the womb. Extra hair or long dark hair can be present in areas that lacked movement. There can also be dimples over joints that didn’t move correctly. ARTHROGRYPOSIS AWARENESS DAY 2013

Day 15: Babies born with arthrogryposis can have a very rough start in life. Many babies with AMC accidentally have their bones broken during delivery or during the neonatal period. The lack of movement can make their bones more brittle (this is not the same as brittle bone disease) and if the position of the contractures are not favorable for delivery (for example if a baby’s hips are externally rotated and knees stuck in flexion) a lot of force may be needed to deliver them, resulting in fractured bones. The thighbones (femurs) and the upper arm bones (humerus) are common bones to be broken. Some babies have their limbs fractured immediately after birth because their medical team doesn’t know how to move them yet. If AMC is detected before birth a c-section may be needed to try to avoid broken bones but even with a c-section it can still happen. Some kids continue to have fractures throughout childhood from accidental falls. ARTHROGRYPOSIS AWARENESS DAY 2013

Day 16: if a baby is diagnosed with arthrogryposis before birth it’s now recommended that the mother take steps to get the baby moving, because the more movement there is, the less rigid the contractures will be. At the 2009 AMC Conference, Dr. Hall (the top geneticist in the study of arthrogryposis) said that mothers should drink caffeine, exercise and take deep breaths often. All of those things will keep the baby moving as much as possible. She also recommended delivering at around 37 weeks if the baby’s lungs are mature so that physical therapy can be started sooner. ARTHROGRYPOSIS AWARENESS DAY 2013

Day 17: With treatment many people with arthrogryposis will walk, while some will need a wheelchair. Regardless of whether they walk or use wheels, it’s all about effective mobility. Those who walk may need braces (AFO’s, KAFO’s or HKAFO’s) or walking aides (walkers or crutches). There are two types of wheelchairs people with AMC may use depending on how they’re affected, manual chairs (which are propelled with the arms) or power chairs (which are propelled by a motor).

Day 18: There is no cure and even fabulous treatment can’t regain normal range of motion and strength in every joint BUT Its AMAZING what people with Arthrogryposis figure out how to do despite “crooked” limbs! People with AMC kind of make range of motion and normal muscle mass look over rated. Think about this….could you make a fruit salad *without* using your hands!? http://www.youtube.com/watch?v=lhrXCt_WoLU ARTHROGRYPOSIS AWARENESS DAY 2013

Day 19: Arthrogryposis can cause height and weight deficits in childhood and subsequently in adulthood. Children with AMC tend to be on the low end of the growth charts for weight (or not on the chart at all). As adults they tend to be 4-8 inches shorter than familial height and weigh 10-20 lbs less than their peers. Obesity should be avoided because it makes it harder to move limbs that are already weaker (taken from page 24 of the AMC Text Atlas) ARTHROGRYPOSIS AWARENESS DAY 2013

Day 20: Lack of movement during fetal life causes the joint contractures in arthrogryposis but another sign that there was lack of movement is lack of creases over the joints. Look at the skin over your joints when they’re straight, there are creases visible, a lot of babies with AMC lack these in the joints their affected in.ARTHROGRYPOSIS AWARENESS DAY 2013

Day 21: Despite the fact that Arthrogryposis is not curable, kids with arthrogryposis grow up to be success and independent adults. Some people will be able to care for themselves unaided, while Some people will need aides to come in and help with some daily tasks. Some professions adults with AMC have chosen include, doctors, lawyers, dentists, engineers, teachers, artists, business owners, professors, chemists, personal trainers, social workers, authors, musicians, journalists and more! ARTHROGRYPOSIS AWARENESS DAY 2013

Day 22: Adults with arthrogryposis are prone to developing osteoarthritis, some earlier in life than their typical peers. It’s not known exactly why arthritis develops in adults with AMC, it’s either because of abnormal joint surfaces (due to the contractures) or its because of the vigorous PT early in life that’s necessary to increase joint mobility. Some adults will need joint replacements to relieve the pain of the arthritis. (adapted from the AMC Text Atlas). ARTHROGRYPOSIS AWARENESS DAY 2013

Day 23: arthrogryposis is not considered progressive; it’s as severe as it’s going to get at birth, and the contractures won’t worsen with time. It is however regressive in nature. This means that even after any type of treatment (even highly effective treatment whether it be surgical or non-surgical) the contractures/ deformity can re-occur. So a foot can go back into a clubbed position, a knee can get stuck in a flexed position again, a wrist can stop going to neutral again ect, this is also called relapse. Post-treatment bracing (like after casting or surgery) is very important to try to prevent relapse but even strict brace wear doesn’t stop all relapses. Once a person stops growing the contractures are less likely to re- occur. ARTHROGRYPOSIS AWARENESS DAY 2013

Day 24: Most kids and adults who have a diagnosis of arthrogryposis are cognitively typical, meaning their IQ scores are normal or above normal. Some people with AMC will have some level of cognitive impairment that does affects their IQ score.ARTHROGRYPOSIS AWARENESS DAY 2013

Day 25: amyoplasia, one of the most common types of Arthrogryposis, can occur in identical twins but only 1 baby is affected and one is typical. This is one of the reasons that amyoplasia is not considered genetic. AMC can happen in just 1 twin of a fraternal set and AMC can happen in both twins if the AMC is genetic in nature.ARTHROGRYPOSIS AWARENESS DAY 2013

Day 26: arthrogryposis is not a newly identified condition. Adolph Otto officially described it in 1841. There is also evidence of it in literature as early as the 12th century (perhaps earlier) and it’s likely that the beggar in the 1642 painting, “the clubfoot”, (which hangs in the Louvre) has some form of AMC (the text atlas says amyoplasia, another article says distal). ARTHROGRYPOSIS AWARENESS DAY 2013

Day 27: arthrogryposis is not a widely studied condition but Dr. Judith Hall, a clinical geneticist, has been studying AMC for 40 years and has advanced the medical community’s understanding of joint contractures in a newborn. In her talk at the 2012 AMC conference she reiterated that arthrogryposis is a symptom of an underlying condition/ syndrome. Her dedication to the AMC community is astonishing. She stayed at conference for 2.5 days and met with families all day long, giving them answers no one else could. As a community we are forever indebted to her for the advancements in understanding the causes of AMC.http://en.wikipedia.org/wiki/Judith_Goslin_Hall ARTHROGRYPOSIS AWARENESS DAY 2013

Day 28: Dr. Hall said at conference that it used to be believed that all cases of lower extremity only arthrogryposis were amyoplasia type but that now its known that a whole list (she showed the list) of conditions and syndromes can cause contractures in the legs only ARTHROGRYPOSIS AWARENESS DAY 2013

Day 29: According to Dr. Fisher from OrthoIndy (who spoke at conference) there is very, very little information in the medical literature on joint replacements in adults with AMC and degenerative arthritis. Dr. Fishers experiences in replacing joints affected by AMC in 2 of his patients have been positive and he is publishing an article soon about one of his patients! Like with all things AMC related, there needs to be more research on aging with joint contractures! ARTHROGRYPOSIS AWARENESS DAY 2013

Our system sucks

Monday, April 1st, 2013

First the good news: Roland has his casts off! Roland can now play his recorder again! It’s his favorite toy and he skillfully manages to conjure the most high-pitched squeaks from its bowls. Did I mention he walks now? So if you ever leave a room because his musical gift has just about shattered the cochlea of your inner ear, you’re in luck! He will follow you around subjecting you to more! (Video.)

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Yes he actually fell asleep with it in his mouth.

Okay the bad news is not that he loves his recorder. :) The bad news is that Thursday (cast removal day) sucked. It was so horrible that I’m just now posting pictures. Many of you know some of the story because you either got a frantic call from my husband that morning or you were one of the people who helped watch Laelia since Thursday was a half day at school before Spring break and mommy was indisposed.

Since Roland is in Early Head Start now and has three hours of preschool twice a week (which he loves) I had a break from both kids Thursday morning. I have been cleaning bathrooms and doing other odd jobs during my kid-free mornings for Raymond, putting a few dollars in his adoption account, but this morning I had some blood work I needed to get done. So I instead spent my morning at the clinic being waited on by vampires. (I’d rather clean a bathroom!) There was also a glucose test I was suppose to do so I had been fasting. They ended up not doing it because I was not feeling well.

Roland’s appointment was after that. I showed up white as a sheet and a little out of it. I had packed a banana, freeze-dried sweet peas and some almonds in my purse so I wouldn’t be light-headed, but I wanted to get us all checked-in first before getting into them. The check in line was longer than usual and Roland was fussier than usual. He gets a little upset when I get him from preschool (he’s having fun) so Mondays and Thursdays he has a little more of a behavior problem, but nothing major. Well nothing major until you add the fact that he recognizes the casting clinic waiting area and knows what’s coming! He was just either fussy, whiny or in full on meltdown mode the whole time.

When we checked in there was a small problem with our insurance, as they said we didn’t have any, which took about 25 minutes to rectify. I paid the co-pay and headed to the other room. Right as I was able to open my snacks we got called into a room. Our regular doctor was out sick so another doctor was waiting for us. He looked 13 years old. Seriously he was a baby. After asking the normal questions (if anyone smoked around the kiddo and if we kept the casts dry) he said he had to get all the x-rays out before he could remove the casts or take more x-rays. He asked me which arm was broken. I informed him the right arm at which point he said, “You didn’t seem to know two weeks ago.”

Teenage doctor and I were about to have words. For one thing I felt like I was old enough to be his mother so I gave him the “mommy tone” you use with small children. For another thing he obviously did not have kids of his own or he would have qualified for a Lifetime special (13 year old dad). He brought up the right arm x-ray from two weeks ago and showed me the small lines in the bone that showed it had been broken. I told him that I already knew about that and I asked for an x-ray before they remove these casts to make sure everything was okay. He seemed to ignore me! So my mother tone got a little stronger. “I. need. you. to. x-ray. my. child.” He nodded and left the room and came back with a social worker lady. Because demanding basic care for my child sent red flags? Baby doctor’s thinking is beyond me. At least there was another woman in the room old enough to be the doctor’s mom to help me order him to give the best care to my son. (I just wanted to get done and eat something!) The social worker was nice, she just kept smiling and introducing herself and asking how I felt. I told her I was fine and just needed to eat something. They didn’t allow eating in the room, but they wanted me to take my son back out into the main waiting area and eat there. (Roland is just crying this whole time and it’s hard to hear much of anything.) I’m sorry but a good mother doesn’t let her son be terrified of casting longer than necessary so I forgot the food entirely and just asked to go to x-ray. They finally said yes and when I stood up to leave I totally lost my vision for a second and had to use the wall to balance myself out.

It’s called blood loss. I also had a vasovagal response to having my blood drawn that morning. The pre-pubescent doctor kept trying to interrupt the social worker (who was nice and asking if I was okay) to show her the x-ray of my son’s broken arm. When he said, “The minor handicapped child suffers from arthrogryposis and also a broken arm…” I finally lost all my patience and yelled that he was an idiot. I think I hurt his ego. Seriously it was like he was Doogie Howser and just trying to prove he was a real doctor.

He called security. Seriously?!!

Now I know the security guy. He sits at the desk before you enter the orthopedic area. Sometimes he buzzes me in without being called so we can play with the toys in there. He even has held the narrow door open while I navigate my double stroller through it. He’s this older, over weight guy. When he walked in I think he recognized me. I said hi and he said hi back awkwardly. The social worker said, “It’s fine, we’re just going out to get a snack.” The doctor then piped up like a wounded toddler, “You need to help her walk out, she’s under some sort of influence.” For one thing, what an infantile thing to say! He knew very well it was because I wasn’t feeling well. I hadn’t mentioned the blood work because it was none of his $%&# business, but I never once did anything to show otherwise. I turned to stare him down because I was not leaving without giving him the worst look imaginable. I told him I would report him. When the security guy put his hand on my arm it scared me because I didn’t really think he’d grab my arm and I hadn’t seen him coming. I jerked my arm out of his grasp.

It was like you would jerk your arm away if you felt something tickle you. It was not wild. I did not swing it. I did not step towards him in any way. I simply jerked my arm away. I was tired, hungry and I had just had blood work done and now it was looking like Roland would be in casts forever. I was going to be late getting Laelia from school too. I swear people are so bent on following the rules and keeping to the letter of the law that they don’t consider the circumstances at all. I walked back out to the larger waiting area and two more security guards were waiting there, a skinny guy and a woman. I recognized the woman because Laelia had said her braids were pretty once and asked me to do her hair that way. These people kindof knew us. They said they wanted to clear up what happened and asked me if I’d been drinking. I explained the blood work (even though I don’t think they can legally asked me about that since it’s medical) and explained that I needed to call my husband. They said I should wait but I realized they were just security people and not real police so I called Charley up and he got Chelsea to get Laelia and drive her to Lauren’s house. I then told Charley about doctor Doogie and asked him to look up ways to make serious complaints about a doctor.

Charley showed up at the hospital to get Roland into the clinic and get his casts finally taken off. I wish there was a way for Doogie to have to pay for the lost wages. While they were in there two police officers showed up to get statements. They said the security guy had said I took a swing at him. Even the social worker said it was a “knee-jerk reaction” because I just hadn’t seen him coming. I got arrested for disorderly conduct. At least I think so since I don’t remember (several days later) them even reading me my rights or anything! Charley was in the casting room so I asked the social worker to get him. I followed them to their car feeling like I weighed 800 pounds. I didn’t get hand-cuffed or anything either. They drove me down the road and I mostly just sat in their office a long time. But then I finally ate something and everything was better! Too bad I had to go to a darn police station to get food!!!

I got my fingerprints taken and at one brief point I sat in an area where I could still see the police office but it was technically behind bars. That’s about as bad a story as I have for being a hardened criminal. Ten minutes behind bars. Charley came to get me and that took forever. At one point an officer offered him a coffee and Charley had a knee-jerk reaction too and punched him in the face.

And that is why we’re both sitting in jail right now.

Happy April Fools.

See, isn’t that story so much more exciting than what really happened? Which was me having a vasovagal reaction, passing out, waking up in an ambulance and being too nauseated and weak to even attend Roland’s cast removal. I thought so.

Grief and pain and brokenness–confessions of a mom

Monday, March 25th, 2013

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If you see the title of this blog post you’ve already guessed something is not right. In fact this has been so hard to talk about that I’ve deleted the whole thing more than once out of fear and shame and then had to re-write it.

So let me start out by showing you happy pictures.

This is my little girl winning three medals for running track at school.

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This is my son and I playing and cuddling.

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And here’s Laelia who now reads sentences!

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All I could do in kindergarten was finger paint rainbows. Only rainbows. She is learning tenses and memorizing lines of plays. Wow.

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And here’s Roland eating his breakfast while running around the house. I sneak fish oil in those fruit and veggie packets he loves. Then we have a vitamin D gummy that he loves and some oatmeal with flax seed that he doesn’t love. His diet is healthier than mine will ever be. Still making up for some nutritional gaps from the almost two years he was an orphan.

I really get a lot of personal satisfaction from being their mom.

Can you tell?

(Yesterday at church our pastor introduced us to a man with ten adopted grandchildren. My husband said, “Oh we couldn’t fit them all in our home!” I piped up with, “YES WE COULD!” and got a hug from the pastor for that comment. ;))

I want more AMCers. It’s no secret. I love having AMCers and one weird reason is that they fit into my “leveling up” video game mentality. Just like you would level up characters in a game, I level up my kids by giving them their stretches, vitamins, doing physical therapy, taking measurable steps towards walking, self-feeding, potty training, etc.  My son started walking after only being home six months! Walking everywhere! I don’t even know how I would parent a typical kid without AMC. It would be boring. After all, I’ve leveled all my video game characters as far as they’ll go, even when it’s not necessary to beat the game. Typical kids wouldn’t even need physical therapy. What would I do with myself?

It’s weird. I know.

But I’m trying to explain why I continued to do my son’s stretches for two+ weeks despite how much he protested. I’m trying to explain what kind of person would be so bent on gaining range of motion daily that she would have no inner voice telling her something was wrong.

I had no idea.

I had no idea Roland had a broken arm.

For weeks.

And I was stretching it daily.

If you’re an AMC mom then that last sentence put an ache in your stomach. We have to stretch our kids. We know they don’t like it. We know it’s best. But we always wonder what this discomfort is doing to their little psyches.

Since the day we adopted him, Roland was both an incredibly strong and an incredibly sensitive child. He was the one who timidly asked for cuddles and also screamed for them. He is the kid who is “always happy” and “so mad” all in the same situation. He is also hard to read. He learned “no” and “ow” pretty early on and has used them both appropriately (“no” he doesn’t want that) and inappropriately (“no” he DOES want that). And he says “ow” when he sees a shadow, someone claps their hands, we go over a speed bump, he hears a cat meow or if he legitimately gets a booboo. Not only does he say “ow” in all those situations, but he also becomes whiny and sniffle-y. Thunk goes the neighbor’s front door. “Ow mama,” sniff sniffly sniff sniff goes the Roland.

Lately it had become a bit worse. To quote myself from a blog post twelve days ago, “Some days I’m only one more ‘No!’ or ‘Ow!’ away from grinding my teeth to nubs.”  But I had no idea when I wrote that how Rolly had been privately dealing with a great deal of physical pain. And how much worse had those “ow”s and “no”s and grimaces gotten in the last weeks? I had attributed it to becoming a typical little boy complete with melt-downs and tantrums. But in lots of ways he wasn’t typical. He wasn’t tough. He was loved, but still breakable–physically and emotionally.

Lately I have had to say “squeeeeeeeze” before hugging him or that big squeezey hug would cause him to yelp. But when he knows it’s coming he enjoys it immensely. I had been frustrated at how gentle he was and how pouty he reacted to me loving him. Man… and I know this isn’t the first time he’s dealt with pain, with adults who don’t know him and don’t get it. The clues to him being in real pain were there, but they were hidden.

And I keep thinking if I just knew him better, if he hadn’t just plopped into my life six months ago, then I would have caught it.

I should have caught it.

Oh God and I stretched that arm.

Worse.

It gets worse.

I started doing feeding practice once his right arm magically started bending enough to reach his mouth.  (Ugh, how long have I been an AMC mom?! Contractures don’t do that magically!) I sat him down with a child-sized red table in front of him and his favorite fish cracker snack on the table. He happily put crackers in his left hand and I corrected him. “No, use your right hand. Lefty doesn’t reach.” And I put them in his right hand. He immediately dropped them and screamed at me. A discouraging start.

“Sorry, Rolly, but you have to learn to feed yourself.” I said patiently even though I was frustrated because before recently he seemed to be right-handed. Now he seemed to be left-handed. Was this kid playing us?

He responded by dropping his head and eating the crackers off the plate like our cat eats from a bowl, hands-free.

“No no no. Use your right hand,” and I put the cracker back in his right hand.

He then handed that cracker to his left hand and tried desperately to get that hand to reach his mouth. His joint contractures in his elbow kept the cracker dangled in front of him like a carrot in front of a horse.

I put it back in his right hand and slowly stretched the hand back to his mouth.

He screamed.

I was used to his screaming. He screamed earlier when I wouldn’t give him something off the store shelf. He screamed when his sister had a toy he wanted. He screamed that morning when I told him we had to change his diaper before breakfast. We joke that Roland only has two volumes: ear-shattering, high-pitched screaming and regular voice. No in between.

He screams. It’s what he does. So I ignored him.

When I brought his right hand to his mouth he would not hold the cracker so it fell. And fell. And fell.

“I know you can hold a cracker. I don’t know why you’re being so stubborn!”

Again and again. Stretching and stretching. Screaming and screaming.

Again and again until I was losing my patience.

“Roland I know you can do this! You can hold this cracker. You can use your right arm. Why won’t you try?!”

“No!” he screamed and spit.

After a while I got so upset that I yelled, “FINE!” and stormed off, slamming a door.

I came back a few minutes later after I’d calmed down to find him face-planted in those crackers, stuffing his face.

That did it.

I picked him up and put him in his crib.

“Time out!” I said to his screams and protests. “And no more crackers!” I dumped them all in the trash, fuming.

When he calmed down from the injustice of it all I asked him, “Are you going to be good now?”

He responded weakly, “Da. Goo ba.” (Yes. Good boy.)

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Oh my heart hurts just remembering this. And I’m so embarrassed and so ashamed to share it. At first I was just terrified anyone would find out. Like child protective services would come take my kids away. I would become the cliched adoptive mom done in by the pressure. How did I miss a broken arm? The telltale bruise on his elbow? His grimacing face and heart-breaking tears every time we started doing his stretches. Which, by the way, was five minutes a day, every day… every damn day!

After the doctor told me it was broken I went into shock. I live four minutes from the hospital so did manage to get us home before I threw up and balled my eyes out. The next day I didn’t want to get out of bed. Roland turned on his music box in his crib (the only clue he’s awake) and part of me didn’t want to get him knowing I would see that cast and be punched in the face with that guilt and grief.

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The arrow on the right shows the fracture. The arrow in the middle shows a possible second one. And the circled area and beyond is where the bone was growing out funny because of continued trauma (aka stretching).

The whole reason we even got x-rays of his arms is because I thought his LEFT arm was bothering him. I had even discontinued stretching his LEFT arm because it seemed to cause him trouble. The doctor must have thought I was nuts when I was there for his left arm and his right was broken.

The AMC in his arm (the joint contratures in his elbow) had protected him since it left his arm stiff like someone in a splint. It also hid the break as he happily went through life the same as always. His “orphan training” taught him not to cry. So yes we missed it. But everyone did.

Ugggggggggh.

But I was suppose to be his safe place.

I was suppose to save him from pain.

Oh sweet buddy, you were hurting. How did mommy not notice?

They ended up casting both his arms because, as one family member put it, only I could freak out enough to get the other arm in a preventative cast. There was no way I was ever doing another stretch ever again at that point, and the poor doctor wanted to go home, so Roland got two casts–one for the broken arm and one to stretch the other arm.

It’s broken. Broken. Every time someone has commented on Roland’s casts I’ve always been able to say, “Nothing’s broken. He’s fine. We do this for his joint condition. It’s like braces on your teeth.” I’ve repeated that line so many times it’s part of going out in public. But the first time someone asked me this after the break discovery I about cried. She quickly said, “It happens to everyone. Don’t worry, Mom!”

Before this I would roll my eyes that someone would assume my kids were broken, that I neglected them enough for them to get hurt. Both my kids even have t-shirts that say “Sky diving accident” on them because so many people ask us how “it” happened and serial casting is just not in the public consciousness.

But now I’m the mom who has a kid with the broken arm. And I’ll never judge anyone else again.

So what caused the break in the first place? They guessed bad nutrition–the same explanation they gave me for his day of hypoglycemia in the hospital which has not been a problem since–caused by two years of poverty coupled with stretching him too aggressively. I do around 80% of the stretching. What if I broke his arm? The thought has paralyzed me. It’s paralyzed my parenting. It’s made me feel like an abuser. A failure. How many years have I been stretching AMC limbs? How many times had I given a tutorial to new parents worried they were doing it wrong? The doctor asked if I was holding his arm down low at the elbow or up at the wrist? I instantly knew what he was going to say. I knew better. You see Roland struggles against stretching as any two year old would. And he has enough muscle in his arms to yank them out of a good stretch. So I was holding his arm too high in order to get him still enough to stretch him and a little thing called leverage is why you don’t do that. My daughter is missing a lot more muscle in her arms and never fought against the stretches like Roland does so I never held her too high. I always had the perfect position with her. But with my son I held it too high. It was too much pressure. I hurt him. And I’m so sorry.

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“Do you feel if you can’t do something to perfection, you ought not bother? Do you frequently feel pressure to perform tasks that will result in applause? When you blow it, do you wait a long time before trying again?”

That’s what Beth Moore asked me last week. Or at least it’s what she wrote to her readers in a book anyway. I’m reading her book about an orphaned girl named Hadassah who rescued thousands of people from death and was the hero of Persia around 480 B.C. She didn’t do it perfectly. In fact she seemed to hesitate more than once. And she was afraid. We know her by her Persian name, Esther. When I lived in Israel we celebrated her story during Purim. And it didn’t matter how she did it, she saved lots of people. She did what she needed to do. Even saying, “If I perish, I perish.”

Yes I feel like I need to do parenting perfectly or it doesn’t count and God isn’t honored. Or if not “perfectly” at least almost perfectly with tiny little mistakes where I don’t cause great pain and suffering to my children. (My children should all suffer from the horrible haircuts I give them! Nothing else!) But my track record includes having two unnecessary surgeries on my daughter before we found her doctor in Philadelphia and breaking my son’s arm. And it’s darn scary to keep trying when I’m constantly reminded about my failure.

I never liked the story of Esther because it was so “human.” Other Bible stories are so supernatural. God takes the reigns and saves the day. Moses parts a sea and it’s a powerful sight! Joshua fights a battle and wins. Deborah defeats an army and songs are sung about her leadership. These people are larger than life! But Esther was a glorified orphaned hooker, shaking and trembling and hesitating, yet she did was she needed to do.

And although it doesn’t say this, I bet she had small children too. She had been married for five years in a culture that valued offspring. And no pill. I wonder how that affected her decisions and made her hesitate. For a character I never liked, I now respect her, the mess she was.

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Roland seems fine, but I have just cried and cried over him, holding him close and rocking him gently. Now when I hear “ow” (like just now when his stuffed animal fell off his walker) I just lean down and say, “Oh sweet boy are you okay? Did your stuffie get an owie? Poor stuffie. Have some cuddles.”

Roland is still bonded to me. I didn’t scar him for life. He still looks to me for comfort despite my failings. He still takes my hand and puts it on his tummy when he wants “ticky ticky” (tickles). He still enjoys peek-a-boo with mom. He still demands “up” and gets held and kissed. I’m not perfect and nothing about adoption is pretty or perfect. I’m not overly good or overly bad. If every orphan waited for perfection in order to be rescued then no one would be rescued. If every mom waited for perfection before adopting then every orphan would remain an orphan.

It’s okay to just do your best. I’m an okay mom doing an okay job. Some days I rock this job. Other days I don’t. Behind every great kid is a mom who thinks she’s doing everything wrong… or so I read on Pinterest.

And I want to thank the many, many people who wrote me during this time and told me about their whiny kids who days or weeks later turned out to have a broken bone! I appreciated it greatly! (I’m sorry it happened to your loved one, but I’m so glad I’m not alone!) And thank you especially to the AMC mom (you know who you are) who told me about breaking her son’s arm during stretching! Maybe this is more common than we think! It’s a club we never wanted to be in, but I’m glad to have company who understands.

So I am getting back up, picking up my kids and holding them close. I’m rejecting the lie that my son was better off where he was. I’m rejecting the lie that I’ve ruined my kids for life by making mistakes. And I stand by my claim that having AMCers is the best. They are bright, able, loving and precious. They make the game of life worth living. They deserve a mom who is trying, and one who doesn’t give up and doesn’t stop learning and changing to be what they need. I’m going to shed this shame and the fear of people knowing I’m not a great mom and just do better.

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.

 

 

 

 

Firsts

Saturday, December 15th, 2012

Roland Firsts

One of the most fun things about having a new baby is going through their firsts: first steps, first smile, first solid food. With an adopted kid, especially one adopted from a baby house in Eastern Europe where they’ve had very little stimulation, they can be so much more excited about firsts. While I’m typing this the kids are watching a cheesy movie about orphans at Christmas finding a family (Santa Paws… gag) and all the over-reactions in the movie to things like seeing a toy store for the first time are not too far off from Roland seeing a car for the first time, or a hippo. It’s fun!

So here is a short list of Roland’s firsts these last three weeks. In no particular order.

First trip to the beach

There’s his face!

He loved it so much he refused to go in his car seat so we could take him home.

“Sorry Mom, I don’t bend in the middle!”

First trip to Balboa Nights… yeah.

Leaving early.

The second we got into the car to leave.

First time at the Ukrainian cultural house

First time at the botanical gardens

First time seeing Grandma

First time seeing Grandpa

First (early because he’s spoiled) Christmas present

Here’s the video.

First time with giant bear

First time getting stepped on :)

First swing ride

First application to college

First walker! (Seriously, Grandpa just built this out of a toy stroller.)

First time walking on the tile.

First outside Christmas lights (for any of us)

First picnic (nap) at the bay

First time in a double stroller

An hour later

First time they ran out of cast colors we hadn’t done already so he got one of each.

And last but not least.

First time at a sit down restaurant. Aka the first time he met a lobster.

:)

Transitions are hard, but worth it.

Tuesday, November 13th, 2012

I am constantly amazed by how normal our lives are.

What? Stop laughing!

I  concede  that sometimes everything that can go wrong does go wrong. Insurance for one thing has gone wrong lately. We were suppose to be covered, but it had not been activated after my husband’s career change. Then we got the fun of getting denied for a trip to the casting clinic, a trip to the pediatrician, a trip to the ER, a trip to the pharmacy, a wheelchair order that had been in the works for over a month (which is now semi-permanently  stalled), Roland’s walker (we now have to borrow one instead), and a trip to the orthotist for the lift in Laelia’s shoe that allows her to walk. All in the same week. I admit. Those times suck the life out of us. But I think every family has *something* that sucks the life out of them if they let it.

But day to day my kids are active, happy and sweet. Normal. They will squabble like siblings–”don’t touch my crutches! I want that! Noooooo!”–but they also love each other. Last night Laelia was falling asleep before I got her in bed. Roland crawled up to her while I was removing her KAFOs and very gently reached down and gave her a kiss on the cheek. He said “ah uv oo,” which is what he says after he hears, “I love you.” Precious!!! Right after that he grinned and went to pick her nose, but I grabbed him in time. Stinker. ;)

Often if Roland is having a hard time sleeping in his crib Laelia will walk up to the bars and stick her face between them to make faces at him. I hear him giggling and I pretend I don’t know anyone’s up. ;)  Laelia has also taken it upon herself to be Roland’s personal English tutor. So far she has taught him “up,” “good boy,” “good girl,” “thank you” and “you’re welcome.” She encourages him a lot while he parrots the noises back to her. I love seeing him grin when she praises him.

So I guess I want to say that life is good and we are happy.

It’s been three months since Roland has been home. The transition has not always been easy, as adding a child to a family is often a difficult transition no matter who you are. There was a time when I was so worried about Roland’s transition from orphan to son, especially when I would see behaviors that made no sense to me. One of the first weeks he was home Laelia won an award at school for citizenship. (Oh I shutter to remember this story.) I had to go to the school to see her accept it in the morning. I had to bring Roland. The little guy had a hard time in an environment of children. I’m sure his institutional spidey senses were going crazy. I don’t know what orphanage connections he was making, but I do know he threw the biggest screaming fit through the first two children receiving their awards. He was bright red and screamed so much that he threw up a bit on his shirt. I had to leave the room as the other parents had brought video cameras and I was ruining their moment. Laelia was the third and final child and the teacher came to get us from outside and told me that we could just let Roland scream and she would talk loudly, but it was important I be there. Laelia had just been through a lot of transitions herself and was not reacting well to Roland’s screeches. She refused to go to the circle. (Did I mention she was getting this award for following the rules?) She simply said no and then planted her stubborn little feet. With Roland arching his back and swinging his arms and legs wildly I knelt down by my daughter and in my sternest voice told Laelia she would go to the circle (then lowering my voice to a dangerous level added) right. this. minute. She complied. Roland swung an arm around and clocked me in the face, my glasses went flying. Thankfully at this point he was only in two casts and not all four, so his arms were not the plaster punchers they are now. I had to hold his arms down which caused him to scream like someone was killing him. My ears were ringing. I didn’t know this little one well enough to know what soothed him yet and nothing was working. I got lots of nasty looks from other parents which was the real kicker. I realized that it looked like I had broken my son’s legs (which I got accused of by strangers that week) and now he was throwing a fit because I was a mean mommy. No one would believe the unlikely story that he had a joint condition and had *just* been adopted. I was dying for this dumb award to just be thrown at my child so I could retreat. A parent was still filming (why? shoo!) and Laelia got her award. But she had an attitude and pretended not to hear the adults. So I took her award and told her she could have it back when she’d earned it. One parent blocked my escape and asked if her son and my daughter could take a picture with their awards. Uggggggh. My son was now upside-down in my arms from squirming around and I had my neck craned back to avoid his kicking feet. “Quickly,” I snapped and then waited an eternity for them to finish while my daughter refused to smile. I was red in the face when I finally marched out of that classroom, crumbled award in one hand, screaming boy in the other. But a few steps outside was enough to get Roland to calm down and cling to me. I was so unhappy with him I didn’t even speak when he asked, “Dadoo?” (His way of saying, “Mommy?”) A guy walked past us and stared. I just thought,  What?! Ever see a tantrum before!   Then another dad walked by near the school gate and looked straight at his shoes. What?! Am I embarrassing you?!!  Then, I swear, a THIRD guy walked by and this one grinned and chuckled at us. What?! Okay that was a weird reaction. Roland is not even throwing the fit anymore, I mean he’s just sitting in my arms grabbing my shirt…. *gasp*

Yep my son had grabbed the front of my shirt and dragged it down to expose my entire (colorful) bra. I had just flashed every man I had walked past. When I realized this and grabbed my shirt up, Roland began to laugh. Yes laugh. He is lucky he’s cute.

See this memory was floating through my head last Thursday during my parent teacher meeting. Laelia and Roland played happily while the teacher went on and on about how wonderful Laelia was and how good she was doing. Roland didn’t scream once and when his toy would fall out of his hands he would say, “Uh oh,” to his sister who happily got it for him and lectured him to thank her each time. (“Day do!”) Roland seemed so happy and adjusted compared to our first classroom appearance. Now he was with his family and content. Instead of a stranger, I was a comfort to him. And my shirt stayed up to my chin the whole time. :)

I found out last week that my sister and her husband have decided to adopt from the Republic of the Congo. Their son will be an abandoned (most likely starved) little guy. She was on the other end of the phone while I cried that my son wouldn’t stop crying when he got home. She was there when I told her that I had to go out one morning to a doctor’s appointment and my son was now stimming like crazy and wouldn’t make eye contact. And if I was going to scare her away with how hard a transition can be, then maybe getting my son in four casts (plaster punchers) may have done it. :)

But transition is an easy price to pay for a little human person being added to the family. And realistically our eight week transition was not that long. Right now both my kids are enjoying Thanksgiving break and playing together. Roland can pick up his own toys after they are done. They both cleaned their room the other day by themselves! Laelia has been doing more physical feats with Roland around to encourage her (read: chase her around). I’ve seen Laelia “fast walk” (run) without crutches to avoid a rolling Roland bulldozer. Roland has done more physically too, but it’s not like he had much of a chance in an orphanage to begin with. It’s fun to see your son become a well-adjusted typical two year old in the space of a few months. It’s fun because you know it wouldn’t happen if you hadn’t adopted them, so it gives you this proud feeling of accomplishment even though you just provided the environment and your kid did all the work. :)

I can’t describe how happy I am that we adopted. (I literally can’t get computer time enough to talk about all our joy.) I can’t tell you how happy I am that my kids get a cousin from the Congo. Life is full. It is good. Adoption is worth it. Transition is worth it.

 

Casts

Friday, October 5th, 2012

So we flew to Philadelphia a bit over two weeks ago, got a game plan for our little man from Dr. van Bosse, and flew home in two plaster casts. For the 36 hours after casts went on and the Tylenol with Codine was taken our little man screamed his head off. He was up all night screaming and since we were all in the same room in the Ronald McDonald House, we were all miserable and upset. Then he was doing this  weird jerking thing that scared me. (Thanks for all your emails about it! Turns out since it only happened during deep sleep that it was most likely a combination of medication, sleep  deprivation  and stress. We’ve since added this medication to Rolly’s chart as an allergy, even though it probably wasn’t an allergic reaction, but we’re trying to avoid it for the future.) We ended the medication while on the airplane home and everything was much better. We think maybe the drugged feeling reminded him of his drugged life and caused more stress. Who knows. Anyway about a day and a half later he was doing great. He had even learned to crawl again in that time.

For the rest of his serial casting we’re doing it locally, and as an added bonus he is getting his elbows worked on as well. So last Tuesday he got the old casts taken off and the new ones put on plus one on his left arm. Of course they used the Saw of Death. I’ve been asked if I mean a cast removal saw, but no, I mean the Saw of Death. The one that eats children.

He did really well at first but then broke down into  hysterics  for the rest of it. (It didn’t help that the eight year old boy next door also screamed… louder.) Then he cried on the 5 minute car ride home and then fell asleep from exhaustion.

These casts were a lot lighter than the last ones. I was expecting another day of screaming, especially since we had not given him any medicine this time, but actually it was great! He only screamed a bit when we first got home. Mostly that was because it was abnormally hot for Autumn (go away Summer!), and he could no longer knee-stand or knee-walk or crawl like with the last set of casts. As  his feet get better (straighter) they pitch him forward making knee-standing (and walking) a lot harder. When he woke up from his nap he was so mad. He did that high-pitched screaming while throwing a huge fit thing no one likes, but I was completely able to bring him out of it easily. I just stood him up and helped him get around. Once he learned he was not helpless then he got better. We even got out Laelia’s old caster cart  that her grandpa made for her and used that as a walker. He started to feel better.

*pout*

For crawling (his primary mode of transportation) he was a one-stooge show for a while. He could get onto all fours, but then his tricep would fire up and his uncasted arm would go straight (like what he’s used to doing to start crawling) and he would fall towards the bent arm like a slow-motion, messed-up somersault. If I kept his uncasted arm bent (as much as it would bend) he could crawl fine. I can’t tell you how many times I would say, “Keep your arm bent, baby,” only to watch him once again do the slow roll onto his back. He looked like a turtle stuck on its back. (I did my best not to laugh.) Eventually he got the hang of it. Ugh, I just hate that it’s all going to change again on Tuesday.

Besides not being able to straighten it to crawl, he now uses the casted arm MORE in a cast! It helps that the cast is light and a bent arm is more functional.  Also he still has full use of his fingers.  We casted his non-dominate side and he seems to love  moving it around (read: “thunking it over and over on the furniture”). He’ll even do things he used to do with his right arm instead with his left. Like…

Pulling all the wiring out of the wall, or…

Pulling out the Internet cords. *sigh*

For all the  hassles   he really is handling casts really well. And now that the weather has mercifully cooled down, he’s a happy little man again. Until next Tuesday…

And I’m happy overall too. Except that I’ve been accused of breaking his arm, oh, about a hundred times. >:-/  Once by the parking guy at Children’s hospital, once by the receptionist at the counseling office, once by the grocery store lady, once at Target by like a whole slew of people, once at Baby’s R Us, etc etc. Boo. (I have two responses in my back pocket: one’s informative and the other is completely snarky.)

But casts really are a blessing and not a bad thing. And even though he had to learn to get around differently, rest assured he can  maneuver  his way into mischief just fine with them on.

This is how we let Mommy do Wii Fit. (We don’t.)