Decision, Decision

Thursday I got a call form the neurologist's office. Geri's EEG results are back, and they show "mild epileptiform activity" during sleep. Translation - she has some mild form of epilepsy. That was, in fact, a seizure. She will, in all likelihood, have another in the future.
Of course, this put us into a discussion of treatment. Although the MRI has not been taken yet, the docs thought the results of this test warranted treatment at this time. The nurse informed me that they want to put her on a drug called Keppra. "It's what we're using for most kids now, "she informed me. "It's very well tolerated, and it's most common side effects are aggression, irritability, and anxiety."
This is the part where my heart just about stopped in my chest.
Aggression? You mean the only damned problem we DON'T have?? Irritability? The defining characteristic of our daughter at this time? Anxiety??? Her constant view of the world around her right now? You want to make these things WORSE???
"I'm not going to survive this," I remember thinking.
She started telling me that the risk of any of these side effects occurring is really quite low. "Although it is higher in children under 5," she says. "And in kids who already have behavioral problems."
Oh for crying out loud.
I pointed our that this basically describes my daughter and she sort of ignored what I said. She told me that we can give 50mg of vitamin B12 daily to counteract the effects of the drug. She was sure it would all be fine, and if not then we can just take her off it! Simple! Prescription is going out today, titration schedule is in the mail. Have fun!
I should have asked more questions right then, but I was too overwhelmed to even begin. For some reason, this upset me a bunch. Maybe it's because we seem to get a new diagnosis for our daughter every other week, and it gets overwhelming because I manage it all. Maybe it's because she also informed me that geri has "diffuse slowing" of her brain waves that could indicate permanent delays and retardation. Maybe I just need more sleep. I hung up the phone and cried the whole time I was trying to put Geri down for her nap.
Nick and I talked about the diagnosis and the planned drug, and he shared my apprehension. I was google searching like a madman, and finding no real information about the prevalence of what some forums called "Keppra rage." I was researching the B12, researching seizures... and feeling overwhelmed and confused. I put a call into Geri's pediatrician for advice and help. Could I have called the neurologist? Sure, but the problem, as I saw it, was that she doesn't know my daughter. She pooh-poohed my concerns that Geri carries all the risk factors for the side effects because she only ever met my daughter for less than an hour in her office. Dr. Kim knows my daughter better, and I wanted his insight.
While I was waiting to talk to him, I did as much research as I could. I found some interesting stuff about the use of vitamins B6 and B12 for treating anxiety. I saw some interesting info about magnesium deficiency being a possible underlying cause of seizures. There was a bit about B12 and magnesium for autism. Some friends recommended a ketogenic diet. My head was swimming. I felt almost certain that we would not be using the Keppra. I was way too scared, and not sure that her seizures were bad enough to use it.
In the end, when I talked to Dr. Kim, he answered my questions far better than the neurologist's nurse had. He reassured me that Keppra is very safe, and that he has patients with autism and Down's syndrome and other conditions that take it and are perfectly fine. He let me know that any side effects would leave with the drug, no permanent damage. He agreed that Geri's condition is mild, so mild that it's reasonable to question the validity of using any medication at this point. We could just wait and see.
But at the same time, he wanted me to be very clear that seizures are damaging to the brain. Untreated epilepsy often gets worse over time, and can turn into status epilepticus - a constant seizure that can be deadly. There's also the possibility of SUDEP, or SUdden Death in EPilepsy. It's very rare, but it happens primarily in the case of untreated epileptics. There is a risk of injury during the seizures, and no telling how severe the next one would be. He pointed out that, although her EEG was mildly abnormal, she will definitely have another seizure in the future. It's not a question of "if" so much as "when" and "how bad." He also mentioned that there could be additional low-level abnormal impulses going on for her more frequently. They may present as staring spells or tics, perhaps so brief and benign as to be totally unnoticed. This low-level behavior could cause damage over time, and could interfere with mood and cognition.
It was a good talk, even if the phone did die towards the end of it!
He stated that he agrees that it's a tough call, that it's good we're trying to make it knowledgeably, and that it wouldn't be unreasonable to wait a while before starting the meds.
We decided to start them, but we want to slow-roll her titration schedule so we have more time to watch for side effects as we increase the dose. Instead of increasing weekly, we'd rather go every two weeks. I still need to notify the neurologist. We also started the accompanying B12 dose.
This was a really hard decision for us, one I've been agonizing over for the past few days and am still a bit worried over now. I don't think there's any way I could make this decision and feel totally happy with my choice. If we medicate, she could have those side effects. If we don't, she could worsen and maybe even have a fatal episode. I'd rather she be cranky than dead, those being the worst-case scenario for each decision. It's more likely she gets cranky, but we can just take her off the Keppra and try something else if that is the case. There's no exit strategy for dead.
So there you have it, the thought process of a mom trying to decide the best medical care for her kid. My biggest lesson learned? Don't believe everything you read on the internet, and don't feel rushed in your decision making (unless there's a good reason.) It's okay that we took a few days to make up our minds. Also, use your whole team. Contact the pediatrician if a specialist tells you something you aren't sure of. Talk to other docs if you don't feel comfortable with the answers you're getting.
And cut yourself some slack if you don't have the presence of mind to ask all the right questions immediately after getting the bad news. You have every right to take some time to process, mentally and emotionally, before asking the right questions.
Sigh... I'm just hoping this gets better instead of worse. I really am. My stress level is very high right now. If her behavior worsens, I think I might go off the deep end. I already snapped a bit tonight. I don't need any of the kids to get worse!
I think I'm going to self-medicate... with chocolate.

Cue the Random

I'm tired and not sure what to write about, so I'm just going to throw out some random crap...

1. Wanna have a weird evening? Watch Disney WWII propaganda films on youtube. Seriously, WTF Walt?

2. Geri's newest, adorable habit is making me and Nick hold hands. During grace she grabs his hand and puts it in mine. If he takes it back for any reason she does it again. I love that she loves for us to love each other. :)

3. Mera has a beautiful future as an actress. I wonder if they give out Academy Awards for the gut wrenching portrayal of a sad Bidoof. (It's a Pokemon)

4. My hubby is awesome. Valentine's day was just another reminder. Did he do anything special? Well, he bought me a CD I was wanting and that was cool, but really it was just a date on a calendar that reminded me that he's awesome EVERY day.

5. There are easier ways to spend time with your kid than taking karate together. But now that we're taking it, I can't quit because it would teach him to give up! Sooooo.... I'll let you know when I get my black belt because I couldn't let my 5-year-old see me quit at something.

6. Need to keep a 4-year-old awake in the car on your way to a sleep-deprived EEG? Open their window and blast them with cold air at 80 mph every time they nod off. I felt sort of evil doing this, but it was necessary and part of me was proud of myself that it worked. On a related note, Nick felt a kind of sinister glee in keeping her awake that night. It was payback, and he's just petty enough to enjoy it.

7. Is the desire to be shirtless a developmental stage for boys? Seriously, TJ wants to take his shirt off as soon as he gets in the door. Then, when Nick comes home, TJ tries to convince him to join in the topless fun. It cracks me up.

And now, some cute.

Geri looks like a cyborg pirate with that patch...

"I dunno, whadda you wanna do?"

The shitless stage. It's gotta be a guy thing. 

So pretty!!!

Why was Mera riding the dog? The world may never know....

Creationism!

I have an airtight argument against evolution, and it's this - children are not built to survive. Any human under the age of 6 is designed to self-destruct without massive amounts of intervention from the older members of the species, so how did the first prehistoric toddlers ever reach maturity?

Seriously, they won't sleep if they get "too tired" and they won't eat if they get "too hungry." If a toddler is left to their own devices, they self destruct due to a combination of self-induced hunger and sleep deprivation. This is, in fact, how nuclear weapons are made. Tired and hungry toddlers are delivered to the enemy and, BOOM, it's all over.

When they're not making noise, they're fidgeting. When they're not moving, they're noisy. They might as well have a steak tied to their necks and a neon sign that says "Hey Saber-toothed tiger, I'm over HERE!" on their back.

They have huge, fragile heads and itty-bitty feet. And this disproportion peaks at about the age they start walking. In fact, that's how you know when they're going to start walking. Their heads swell and their feet shrink. Now I'm no archeologist, but I don't think we've found any cave drawings of helmets yet, so there was no way they had any protection.

And there's no way any human tribes with small children ever migrated over long distances. Have you ever tried to take a 4 year old hiking? They're too heavy to carry, and too slow to walk. And when they turn 5 it gets worse, because now they stop every five minutes to investigate something shiny. I don't know how you say "Are we there yet?" in grunting, but I bet a mass migration would result in two-thirds of the children being thrown into a saber-toothed tiger den.

Too little to throw a spear. Too oblivious to gather nuts and berries. Kids weren't designed for the hunter-gatherer lifestyle. We must have been created as adults in a nice, cozy garden because otherwise the kids wouldn't have made it and the species would have died off! This logic is airtight.

P.S. I'm being facetious on many levels. Please don't start having conniptions over this. :)

Coming Together

Attachment is one of those weird concepts in adoption. It's treated as a BIG DEAL, and for good reason. Failing to attach, to some degree, with a reference adult can cause all sorts of problems for kids, ranging from failure to thrive all the way to destructive and antisocial behaviors. As an adoptive parent, you quickly figure out that failing to attach will cause your child to become an axe-wielding maniac or, worse, a guest on Jerry Springer.

Yet, for all the importance assigned to it, measuring it is fuzzy at best. There are certain markers to look for, certain behaviors to encourage, but there's no cut-and-dried measurement to figure out if you're on track. It falls into the "every child is different" category, and that means you can't expect any clear answers from anyone who hasn't directly observed your child... after observing about 50,000 other kids in their professional capacity. It ends up being something of a gut call.

My gut is telling me that we are making great strides with our little Geri-beri.

Eye contact is a huge indicator of attachment in children. Making contact is a sign of connection, and making eye contact happen can actually increase a sense of connection, so it's a win-win any way you slice it. Eye contact is good, end of story. For that reason, I started on a campaign of creating and encouraging eye contact. Geri's visual impairment made it hard to tell at first whether that contact was actually happening, but I quickly learned that if she seems uncomfortable and turns her head then I probably made eye contact. Since figuring that out, I have gotten into the habit of practicing eye contact at each diaper change and working it in wherever else I could. God must be on my side, because Geri decided that she loves peekaboo. As a result, we get to practice this skill all day. I've definitely been seeing more sustained looks during our practice, and more eye contact during the games of peekaboo. But last night, she totally blew me away. I was kneeling on the floor, facing her while she was standing so that we were at the same level. We were doing something else, but she stopped and made eye contact with me on her own. She actually got closer to me so she could look me in the eye, held it for about 5 seconds, then reached up and started touching my face with her hand. It was probably about 10 seconds, total, of happy, spontaneous, warm eye contact. The jackpot of eye contact. I was in heaven and I am still surprised that I didn't cry.

Another attachment marker is physical contact, particularly affection. You don't just climb into the lap of a stranger and cuddle, unless there's a screw loose in the brain pan. For many kids who have lived in institutional care, the concept of a hug is foreign. Lately our little Geri has started climbing up into my lap to just be held by me. She sits in my lap for about 5 minutes, then she wants to get down and play for a while, then she wants back into my lap again. This is a GREAT cycle of feeling more brave after being held and then needing to be held in order to feel centered again. It's a version of "checking in", and that's a big deal. A well attached child will naturally check in with their parent in order to gain confidence and comfort while exploring their world. A child with no sense of attachment feels alone in the world and, as a result, would never even think to look for their parent. Checking in is a great thing, indeed. You know what else is great? Real hugs. With an arm around your neck and a squeeze. I got one today. The fact that I had to show her how doesn't detract at all, because she picked up on the concept and started dishing them out. And she is getting used to me kissing her. She giggles when I kiss her lips now.

Interactive soothing and interactive play are also a big deal. Both show that the child is taking an interest in the parent, trusts the parent for appropriate and loving responses, and is able to respond to the parent. They also indicate a brain that is capable of calming and learning! Geri is responding to my soothing more quickly now. Sometimes, all I have to do is pick her up and coo over her and she stops crying. This is a welcome improvement from the days that I could hold and rock her for 45 minutes and see no effect. Or the days when she used to arch her back when I tried to comfort her, trying to be put down, but if I did put her down she'd cry to be picked up. And the interactive play is just plain neat. We spent 20 minutes putting things into a bucket and taking them back out. She would hand me items, I'd hand some to her, and the whole time she repeated the word 'bucket' whenever I said it. Pure magic.

Then there's the mixed blessing of preferential clinging. A kid from an orphanage will go to any adult at all because all adults are the same. "You're big. Take care of me." Any parent knows that it's not a healthy, or safe, situation if your kid will just wander off with any stranger over 5'2" who is willing to hold her. When your child starts to whine and cry for you, that's a good thing. When they start crying every time you leave the room, it's a good thing. When they refuse to let anyone else feed them, it's a good thing. All of these are good things for attachment. Of course, when your back is sore and your arms are numb from holding a 35 pound child for hours and you can't go to the bathroom without someone crying about it and you are unable to eat a meal without someone on your lap, it doesn't FEEL like a good thing, but it really is. Geri's newest tricks? She won't eat if I'm not home. She has to sit in my lap to eat, but she will sometimes jump ship to Nick's lap for a spot of cuddling and a bit of food before wanting mommy again. If I leave the room, she freaks out. She's still a little short on the stranger danger response, but she's no longer trying to jump into the arms of anyone who gets within range. In fact, she seems to now view me as important and Nick as cool and anyone else as furniture.

Oddly enough, I find myself being very grateful for her disability. Her visual impairment builds vulnerability into her. She has to rely on us, there's no other way to survive, and that makes her more emotionally available in a sense. The diaper changes and the feedings all reinforce our role as caregivers. If she had her sight, she would probably not need us to do these things and would not be willing to allow us to. It's an interesting dynamic, really. Many people would shy away from adopting a child with a medical condition because they think it would be too hard. Yet a healthy child has more resources at their disposal for rejecting you emotionally, and that's about the hardest thing there is. Geri's pediatrician actually mentioned this to me before - that he sees the best overall outcome in the special needs adoptions because the child's disabilities serve to facilitate bonding. The disabilities also force parents to have realistic expectations for their child, and that relieves a lot of familial pressure.

Of course, this is just one view of attachment and it's a narrow one, at best. There's no ideal timeline for bonding, and there's no measurement of completion or fullness that can really be applied to all cases. Which really ought to be liberating! Since there isn't a timeline, there's no hurry. Since there's no test, you can't fail! It's a relationship, and like all relationships, it must grow into it's fullness with time. That said, I still relish any evidence of progress because it makes me feel like we might just be doing ok. And when I think about it, I have to admit that we are. We are actually doing okay. Improving all the time, slogging through the setbacks when they come, and generally seeing things get better with time and patience and love. Sometimes it feels like it's falling apart, like it's not getting better, like it's going to blow up in my face, but then something happens to remind me that we're doing great.

And that's the wisest thing I know - don't judge your life by this moment. It's so little compared to the past, and you have no idea what the future holds. Cling to the promises and keep going, because this moment has already gone.

Update and Reflection, I guess

So, a word about our Geri and the surgery-that-wasn't. Because it wasn't. We went up to Denver, got her settled in at the hospital, then brought her to the OR for the gas and headed down to the cafe for lunch together. I've been joking for weeks that the anesthesiologist is our babysitter and we were finally getting a date. Well, the date was about 30 minutes long. We had just eaten some lunch (it was yummy) and we were discussing seconds when my cell phone rang. It was the surgeon. I have to be honest, my first thought was "What the heck are you doing? Get back in the OR!! You are supposed to be BUSY!!"

He told me that he was done. When he performed the exam under anesthesia (EUA) on her eyes, the pressure in her left eye was normal! He can't justify operating on an eye with normal pressures, so he completed the exam and called it good.

"Ummmm... what? Seriously?" Yes, seriously.

When Geri had the surgery on her right eye, you might remember that she also had a laser procedure on her left. In that procedure, they basically killed off half of the gland that produces fluid in the eye. That, coupled with her drops, reduced the production to basically zero. But here's the crazy part... fluid has been escaping the eye! I mean, that's the only way the pressure could possibly go down. I keep thinking of blowing up a balloon. If you stop, the ballon stays the same. If you want the pressure in the balloon to go down, you have to open up a hole and let the air out. Well, somewhere in Geri's left eye there's a bit of drainage because the fluid has gotten out. But this is the eye that has had higher pressures all along. The eye that is more distorted. The eye that was "worse." How on Earth can the "bad"eye suddenly start draining after 4 years??? One word... God.

During the exam he also found that her right eye has decreased in circumference by 1mm. We thought it looked smaller, but here's proof. Wow. God is good.

So now the plan is another EUA in 6 weeks, at which point he'll check the pressure in the left eye again and proceed with surgery if it's gone back up. It will go back up at some point, since the laser procedure is only effective for about 6 months and then that section of gland will be in production again. Surgery is going to happen, but not right now.

I'm grateful, in a way, but also too stunned and confused to fully process my gratefulness. It's nice that she gets a longer break between surgeries. It's more time to become attached to us. More time to adapt to her surroundings. More time to gain weight and figure out what caused that seizure and such. More time for us to accumulate money for medical expenses. Yet, the knowledge that we're only on a temporary reprieve makes that reprieve feel almost pointless. I know God is up to something, but what? I have to wait and see.

In the meantime, she's stopped taking naps again and her night-time wakings ramped back up. Which is why I'm sharing the below from a blog I just saw today for the first time, bogueandweejer. Enjoy!

"And I know the exhaustion is just a phase and soon, they'll be in elementary school and I'll miss them terribly during the day. And then they'll be in middle school and too cool to hug me in front of their friends. And then high school when we're fighting all the time and I'm grounding them from their holographic games and hover craft. And then they'll head to college and we'll be like WOO HOOOO!!!! Except we'll really really miss them and look through baby pictures and not even think once about or even remember the "hard" days."

Winning!

If there is an unofficial contest for dumbest/worst adoption question, it's been won. Drumroll please.

And the winner is... The ER nurse when Geri had her seizure!! For her remarkable question, and I quote, "How long were you planning on adopting for?"

Oh, I know what she really meant, but asked that way I had to say, "Uhhh... forever?" Nick, who's also a bit of a smartass, threw in "At least until she turns 18!" She looked embarrassed so I said "Were you wondering how long the process was? It was about 14 months, start to homecoming." I wasn't trying to be mean, but it was so funny the way she asked that we had to run with it.

Folks, watch you choice of words. Phrasing is everything!

Other adoptive parents - what's the silliest question you've been asked? 

Roundup

Sorry, dear reader, for the lack of updating this week but it's been kinda nuts. Geri's seizure set her back in terms of adjustment and behavior, so I've been busy and it's been taking a long time to get her to bed at night. Once she's out, and the dishes are done and the house is clean, I've got nothing left for typing.

Local pediatric neurologists had no openings for our little one until March/April. Uhhh... unacceptable. One office never even bothered to call me back! Unprofessional much? I finally just searched the database for our insurance and found out that there is a neurology department at Children's Hospital in Denver so I called up and got an appointment... this Thursday. It went very well, with a lot still to be done. The doctor did say that she doesn't think Geri has cerebral palsy. That was nice to hear. She does, however, have unusual facial feature that hint at a possible genetic abnormality. The test for that will be very far in the future, though. Her EEG is in the second week of February, and the MRI folks will call next week to schedule that test. So the ball is rolling, and that's a good thing. She's cleared for her surgery on the 1st, and that's a relief.

I'm moving TJ to a different school next year. His teacher this year is talking about holding him back because he is too easily distracted in class by the classroom computers. He tends to stop and stare if someone else is on them and he is nearby. She says that she shouldn't have to watch him so closely anymore and that he is not "adjusting to the classroom environment." OK, valid, he's a raccoon and he's very easily distracted by television or computers. Here's my beef... he's excelling in his work. He is reading and writing proficiently. He completes his four assigned works each day. She has to remind him to stay on task, but he's still completing his tasks. To me, that means something right there. She talked about holding him back, but I'm not sure about that because he's doing so well on the material. If he goes back into the same class next year it will be the same material and he will be bored and then he'll get up to even MORE trouble. So it doesn't seem like a good solution to me. I asked about the possibility of us bringing in those films you stick on the computer screen for privacy. If he can't really see the screen, he can't get as distracted by it. It wouldn't prevent kids from using the computer, it would just help him not be as distracted. I wanted to do this to help the situation in the immediate future, until we can help him develop the ability to stay on task regardless of distractions. She refused, saying that he needs to "acclimate to the environment" instead. I agree he needs to develop in this area, but it's not going to happen overnight. And in the meantime, he gets in trouble for something that he truly can't help.

She started saying how she doesn't get it, he was doing so well before the Christmas break and now he's fallen back. I tried to explain to her that he's had a lot of upheavals at home. Christmas break was when we brought his new sister home, and it's been a tough adjustment for everyone and continues to be. She told me that she was willing to believe that for the first month, but now she doesn't want to make excuses for his behavior. I wanted to deck her. Do you really believe that a month is enough for us to completely adjust and just be back to normal??? The implication that he's had his time and now he should be over it pissed me off so much... See, it's not about how he adjusts to Geri. He can't adjust to Geri because she is constantly shifting on him. She improves, she regresses, she needs less of our time and then, suddenly, she demands much more of it. She cycles all over and, just when we hit our groove, there's a surgery or a seizure and we get set back. All of us, together, get set back. We still haven't found a truly reliable bedtime routine for all three kids. For a while we were keeping TJ up while we put the girls down so we could have some dedicated time for him, but he wasn't going to bed until 9 and it was impacting him. So then we started putting him to bed first and now he goes to bed at 7:30 and he doesn't get all the attention and time we were giving him at bedtime before. So for her to call it an "excuse" when I tell her that he's still in a very difficult adjustment period, that made me very upset. I don't know how I'll look her in the face and be civil at the next parent teacher conference. Previously, I looked at us as a team. Parents and teachers working together for the best possible outcome for the student. That's the way it should be. Her ignorant and insensitive comment just severed it for me. She can, frankly, go to hell. I'd take him out now if I could.

Sigh, that was a lot of ranting and anger. If I'm being overly sensitive, please tell me. Overall, I think this school is a poor match for him. He needs more structure, I think, to stay focused. I'm looking at other schools now, so hopefully we can get this ironed out for next year.

In the meantime, Geri is giving us a tough one tonight. sigh.