Archive for the 'transition' Category

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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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.