IOU... Pics

Until I figure out how to get the darned photos off my Google + and into this blog, you'll have to be patient and bear with  me. :)

In the meantime, here's some new developments.

Geri's transplanted cornea recently started to reject. We could see a haze developing over it and tell that her vision was getting worse. Of course, we immediately called the cornea specilist to get an appointment. Then I got sick (see below) and we had to push the appointment but we finally saw him. He agrees that there is a haze forming. She is being given steroid eye drops to try to reduce the haze and stop the rejection. If that doesn't do enough, she will be given a shot of steriods in her eye, under anesthesia of course. If THAT doesn't work, we can opt for another transplant. We'll make that decision if and when we get there. Please pray that God works his wonders through the steroids. Surgery is just not fun.

I don't know if I mentioned my medical garbage previously... but I have a condition called POTS. Short version... my nervous system flubs it's lines and my pulse and blood pressure go wonky, leading to fatigue and nearly passing out. I also have a gluten intolerance. Fun stuff. Anyway, I'm on a drug for the POTS that works great, but affects gut motility and digestion. A recent gluten exposure combined with the new medicine to land me in the hospital for a partial bowel obstruction. I nearly ended up going to surgery and losing part of my small intestine, but it resolved on its own. God is good. I'm doing better now, but being super careful about gluten exposures. I'm not giving up my medication, at least not at this time.

Geri's verbal development continues to be awesome. She amazes me daily with the stuff she says. The other day, when I dropped her off at school, I stopped to let her teacher know I'd be picking her up from school early for a doctor appointment. She said "Oh, that's today? Geri told me about it." I don't remember ever telling Geri directly that she had an appointment coming up, but I know we discussed it in front of her. She heard me talking about it and then went to school and told her teacher "I go to the eye doctor in Denver." I nearly cried when I heard that one. On a related note, I guess I now need to be careful what I say in front of her...

Words, Words, Words

Geri has made huge advances in speech lately. Here's some of my favorites:
"No, Papa, turn on the BIG light!" (Dad turned on a table lamp instead of the overhead light)
"I'm a super hippo!"
"Fashionista!" (Yelled with joy when saying goodbye at school)
"You had an accident at school?" "Yeah" "What happened?" "I was bouncing on the ball." "You didn't want to stop to go potty?" "Yeah. I wanted to bounce." (My part is in italics.)
"Look at me!! Hey Mom, look at me!!!"
"I want flute loops!" (Flute Loops... the breakfast of champions!)
"I did it!!!" 

There's about a million of these little gems. It's so cool that she can tell me what she wants. The other night I asked her if she wanted egg and cheese on her gyuvech and she requested cheese, no egg. She'll finish a small bowl of cereal and say "Can I have some more?" or she'll finish a bowl and say "I'm full!" When she stubs a toe she can tell us, between tears, what happened. If her belly hurts, she can say so. When she has to go potty, she can let us know!!!

But the best part is seeing her personality more clearly. Seeing her intelligence more starkly. Having her tell me what happened at school, what she wants to do, who she wants to see... She's more grown up when she's using her words.

And the most bestest part of all is hearing "I love you" or "Obecham te" in her little voice. Last night Daddy wasn't home at bedtime and she was crying and she said "I miss Papa!" and I just was blown away. Sometimes, she'll sit near me and just say "Mom! Mom! Mom!" over and over. It's magical.

Verbal Progress

Geri's speech therapist has had us working a lot on "what?" questions. What does a dog say? What does a cow give us? What do we do with a toothbrush?

She's getting really good at them. In fact, we had a great conversation tonight. We were cuddling at bed time and i asked her a couple of questions we have practiced.

"Geri, " I said, "What does a bird build?"
"A bird builds a nest," she answered.
"What comes after 3?"
"After 3 comes 4, " she replied. I decided to try a brand new question to see what she would say.
"Geri," I asked, "What comes after 4?"
"5 then 6," she told me.

Wow. Just wow. We've never practiced that question. We had to practice the "what comes after 3?" question several times before she could answer it reliably. But, without coaching, she extrapolated the answer to the first question out, not just one step but two steps forward!

It's been fun watching how her mind works. When we started on the questions about birds, it was a hoot. There was an answer her therapist wanted (a bird builds a nest) but at first we got something pretty cute. The first time I asked her what a bird builds, she immediately said "A house." Well sure, I thought. We build houses, I guess she would assume birds do too. And she's not entirely wrong. A human habitat is a house, a bird habitat is a nest. I just smiled and said "A bird builds a nest." The next time I asked her what a bird builds, she answered "A bird house."  Again, it hurt my heart to correct her. In a way, she was right. And in a way, her answer was far more clever than the stock answer.

How's THAT Work?

When we started the adoption process, we often wondered how this would look from day to day. What is breakfast gonna be like? (Noisy.) Will we still take vacations? (Yes!!) What happens if someone gets sick?

Man, we are experts in illness. Especially lately.

I'm a believer that there is NOTHING worse than both parents getting sick. When the kids are all feeling just fine and both of the adults are dragging, it's a miserable time to be in our home. Lots of movies are watched, that's for sure.

Recently, I went and got sick. Well, I've been sick for a good long while really. For about 3 years now, I've been having recurring fatigue and muscle weakness episodes that are nothing short of debilitating. Then, in June, I started having awful stomach pains that quickly progressed to the point of me being bedridden. In early June I was hospitalized for 6 days. 6. Whole. Days.

So what did that look like? Well, when I was in the hospital, Hubby became something of a single dad. Another family from church stepped up HUGE and took the girls every day (big brother was on visitation with his bio-dad's family) so Papa could go to work. When someone's in the hospital, you suddenly feel like you need money. When Papa came home from work he would grab up the girls and some dinner prepared for us by some of the other ladies from our church, then come to the hospital and eat with me. Well, when they were letting me eat. They kept putting me on "Nothing By Mouth" orders. It was, truly, feast or famine!

The gulag in which I spent 6 days, days I can't get back.

After dinner together, Papa would take the girls home and put them to bed, then put in a bit of overtime to make up hours and we would talk on the phone for a while. Rinse, repeat.

When I was released from the hospital, I had a brief period of feeling better and then it all tanked again. At that point, my fantastic mother-in-law made an 8-hour drive to stay with us for over 2 weeks. Which was good, because about a week into her visit, my gall bladder had to be removed.

The bottom line is, we made it. Lots of wonderful people rallied around us and carried us through. Lots of adoption experts talk about setting up your support network. They are righter than right. At some point, you'll need help. At some point, you'll be able to be a help to someone else. But if there's one thing I can promise you, you'll hit a point where you need more hands than you have. Let people bless you with their help and just tell yourself "Today you, tomorrow me."

It's been one week...

...Since Geri started Kindergarten!! Wow, I am still not able to process that information.

I remember a time, about one year ago, that I would have been pleased as punch to have her starting preschool about now. When she first came home, she struggled with so many things. She was so far behind. She couldn't chew or eat solid foods. She couldn't walk or talk. She was so volatile, emotionally unstable. There was this laundry list of difficulties.

We weren't willing to separate her from us for school or daycare or anything of the sort, a decision I'm glad now that we made. She needed that time with us, that attachment building. (I don't say this as a slam on other adoptive parents who made a different decision or took a different approach, btw. This is what she needed, what worked for us, so I'm just glad we trusted our instincts and did it.) When it came time to broach the issue of separation, it was hard for her at first. But the winding road of resources, support, situation, etc that God led us through made it so that each step built a foundation for the next. It all came out ok because of the way it happened. I can't imagine it having worked any other way. Looking back, though, I can understand why I didn't see this way ahead at the time.

It's amazing to look back at where we have been, where we set our expectations at the time, and where we are now. Kindergarten. She's in kindergarten, at a relatively appropriate chronological age. Her developmental age continues to catch up. The miracle continues to unfold, and we are so blessed to be front and center for it.

BLARGLE BLARG BLURG - I'm sick

K, so I've been super not well lately. I didn't go into it as things were happening, but it's been two months of pain and on Monday I get my gallbladder out. Oddly enough, I've never had a surgery and not been totally stoked. This is the third surgical procedure of my life. First was laser vision correction. I was excited. Second was a boob job (Yeah they're mine, I paid for them) and I was pretty excited about that too. Now I'm getting my gallbladder out and two months of unending abdominal pain have me acting like I'm winning the lottery. Seriously, you'd think I was going on some crazy cool vacay or something but I'm really just going to get part of my digestive system removed.

It's funny how normal certain things can start to look. I'm not sure what it's like in other families, but our family has seen too many trips under the knife to be shaken up anymore. I'm all like "Kids, mom's having surgery on Monday," and they're all like "Yeah, sure, whatever... can I watch a movie?" We've watched a lot of movies lately, because it's about the only activity I can handle.

But they sure did love riding on my lap when I had to use a power scooter at Walmart because walking is too painful.

Anyway, If you are so inclined I would greatly appreciate your prayers. I am never maxed out in that department, more is certainly merrier.

In the meantime, thanks for sharing life with us. It's weird to be the patient instead of the nurse for once, but this is how life goes, even when you add other factors (adoption, disability, blended family, etc) to the mix. Stuff still happens, things fall down, things break, life gets taken apart and put back together again, and you learn to be resilient as a family unit. And somehow, it all becomes more tolerable when you add to the craziness because everyone is able to pour their love into the situation and love is what makes this life survivable.

Gleaning

Wow. I just recently read this article and I'm blown away...

http://newyork.cbslocal.com/2012/03/19/bloomberg-strikes-again-nyc-bans-food-donations-to-the-homeless/

Mayor Bloomberg has outlawed food donations to homeless shelters because their fat, salt, sugar, etc. content can't be monitored.

I'm involved in trying to combat food insufficiency here in Colorado Springs. I don't think I've mentioned it on my blog before, but I run a food pantry at our church and have been doing so for about 8 months now. Every week, we distribute to about 100 people. We're on a shoestring budget, and shopping for our shelves has sure put low-income diets in a different light.

There is no question, no doubt, in my mind that food quality has become a divide in our nation, and there are some serious "haves" and "have nots." A person living on minimum wage in Colorado Springs has about $41 per week to spend on groceries, per working adult. Imagine a single mom with three kids, trying to feed everyone on $41 each week. She can apply for SNAP (food stamps) and that's a pretty decent supplement, to be sure. For a family of 4 the max amount of monthly benefits is about $670. Sounds do-able... but in El Paso county 48% of the people who are food insufficient are not eligible for SNAP.

And that's not even remotely considering the effects of generational poverty or food availability. Many people in urban areas live in what have been called "food deserts", where there is no actual grocery store and the only close sources for food are convenience stores, which sell extremely limited amounts of produce, meats, and other raw materials for healthy diets. The only options are massively overpriced cans of ravioli, soup, tuna, etc. Markups are outrageous, food quality is poor, and unhealthy eating becomes a way of life. Fast forward a generation or two, and you have kids who have never developed a taste for fresh foods because all they know is mac and cheese and ramen.

Trust me, I am all for changing these diets. We're blessed to be receiving a weekly donation of fresh produce from Sprouts Marketplace, and our customers are loving it. I want them to have access to healthy foods, things that will benefit their bodies. I am torn, at times, between needing to stretch our meager budget and wishing for something better for our customers and their families. I truly am. But I know that you can sacrifice a lot on the alter of perfection. I sometimes have to settle for full bellies and empty calories in the battle against hunger. It's a trade-off I accept when I must, trying to buck it every chance I get.

However, this is a different population of the food insufficient. The homeless are a whole separate ball of wax.

People who are homeless are unable to cook for themselves. Making a fire calls unwanted police attention. They have nowhere to store food safely, and must carry everything with them. Canned foods are far too heavy. Soft fruits and vegetables are out in the heat all day, banged around in a backpack and damaged. Things get stolen while you are sleeping, or someone might jump you for your stuff at any time. They rely largely on public feedings for their diet because nothing else works for them. When we started the food pantry, I actually tried to bring the homeless in. We put up fliers in the soup kitchens and the parks. No one came. Finally, I got some feedback through a friend who works with the folks on the street. They were not going to come. Food pantries were "not for us."

So public feedings have a large responsibility, one that doesn't exist for food pantries on the same level. We are not a person's sole source of nutrition.

Public feedings have a duty to provide the best food they can, that's for sure. But their main duty is to provide AS MUCH food as they can. There has to be a balance between the two. Now, if the public feedings in New York City are throwing away food at the end of the day because, gosh and golly, everyone is just too stuffed to eat another bite, then this policy perhaps begins to make some modicum of sense. But if even one person was turned away, or didn't get seconds, or could have walked out with a bagel stuffed in their pocket and had something to munch on the next morning or later that night and they didn't because of this law, then that's shameful.

I Don't Need Money

Okay, I hate to bitch and complain but I have to put this out there...

I've said it before, I'll say it again - if you tell me what a saint I am for taking care of my disabled child, you are implying that she is not worth caring for. By making me out to be some martyr, you make her out to be a massive burden.

Which she is NOT.

We went to the Renaissance Festival this weekend. It was tons of fun, we had a blast, the girls got to see princesses and fairies and a real, live elephant! And me, I got to see a douchebag with delusions of grandeur.

Me and the girls were waiting for someone and playing together when a guy came up to me with his two teen daughters in tow. He knelt in front of me and said "I noticed you with your kids and you are just doing such a great job with them. I wanted to give you this." He held out a $20.

"Thanks, I appreciate it," I said, "but I really don't need your money."

"No, please, take it!" he said. "You are an angel! You take such good care of your kids!"

I took his money to shut him up and thanked him. Then I promptly gave it to two teens who had no spending money.

I'm not an angel. I'm a mom. I do for my child exactly what most other moms gladly do for their kids- whatever they need me to do. My child's needs are a bit different from others, but the job description is the same. Take care of them. Love them. Encourage them.  Adding a long white cane into the mix doesn't make me any more a hero than any mom who sat up all night with a feverish toddler.

But hey, I'm used to this misplaced hero worship crap... adding money into the mix makes it more insulting. Is your $20 supposed to lift me out of the apparent misery of my life? Is it supposed to be the consolation prize for having a defective kid? Do you think I need a consolation prize??

I do not need or want a pity tip for caring for a child that I adore. I love my daughter. That's right, love her. She's blind, she's delayed, she's clumsy, she's hard to manage at times... but she's also funny as all get-out, spunky, bright, friendly. She's a fighter, the bravest damned kid I've ever met, and I adore her. Oh, and she's better at this whole potty training thing than her normal kid sister. So maybe there's something going on upstairs after all, huh?

Please, don't treat someone's child like a burden. And above all else, if you have to make a big deal out of things you don't truly understand from the two minutes of interaction you just saw, please don't insult me by acting like your money is going to make me feel better.

A New Record...

... For longest time a blog has gone without an update. Did I get it?? Can I call the folks at Guinness?

Ok... seriously... here's a run-down on why I haven't been writing.

* I became Geri's CNA. That meant 6 weeks of intense training and then studying and then testing. It was really hectic and insane, but totally worth it because Medicaid pays me to provide CNA contact hours. These are hours she qualifies for based on personal needs, which would otherwise be delivered by a stranger, but instead she gets them from the person who knows her best and understands her. Me! And I get paid for it! So I have more money to spend on... errr... medical bills. Sigh.

* Big Brother is on visitation with his father's family. It's great, they're great, he's having a blast, blah blah blah... I still miss him like crazy and fight off bouts of faux-pression (when you're super sad so you want to call it depression because "sad" sounds too light a term, but you know that you aren't clinically depressed and you don't want to freak out your friends and family by throwing that word around) and being sad makes me blow off writing. But seriously, he's having fun. He had a great T-ball season and is taking swim lessons and had fun at VBS. I just wish he was doing all that here, with me. Yes, it's a tad whiny and selfish. No, I'm not sorry I feel that way.

* Geri's seizures are not quite under control these days. She still isn't having them super-frequently, but her neurologist and I believe we can do better so we upped her Keppra dosage, which was really low. I wanted her at the bottom of therapeutic range to minimize side effects, so it's not like we were just being lazy, but she's tolerating it well so increasing is ok by me. We'll have to keep tweaking it until it works, which some of you know is the fun part of epilepsy. Which means that if this is the fun part, the rest of it blows. Just saying...

* Listening therapy has been FANTASTIC. It's made a huge difference. Her expressive language exploded after we started it, and that's been fun to experience. She's hilarious! She says to me "I'm stinkin' cute!" all the time, as well as "I'm gorgeous." I'm trying to get her saying "I'm so modest" but she'd rather yell "I work out!!!"

* I had a crazy illness recently, was ill at home for two weeks then hospitalized for six days then ill for another week at home, and found out I have some form of gluten intolerance. Apparently I caught a stomach bug that threw my delicate balance out the door and all hades broke loose in my belly. So now I'm on a gluten free diet. May I just say that this has always been my idea of hell? I'm of French descent, raised in an Italian community... My food groups are "bread", "pasta" and "other." It's nice how there's a lot of great GF baked goods out there, yeah I know, but they are most definitely not the same. Even really good GF pasta is a bit rubbery, and great GF bread is a bit dry and not as soft and spongy and... I should stop. At any rate, it sounds like torment until you factor in the physical discomfort of eating glutens, and then it doesn't seem so bad. I seriously feel about a thousand times better... and this may even be the source of my weird "migraines." So yeah, I'll take it and I'll like it. Just gotta pull on my big girl panties and deal with it.

*We own chickens now! Three of them... Hamlet, Rozencrantz and Gildenstern. We had four, but Ophelia died in a heat wave, which I think is consistent with the play. Isn't Ophelia the first of these characters to die? They are pretty good layers and the kids get a kick out of them. Little Sister enjoys checking for eggs and chasing the chickens back into their run after free-range time. Geri loves it when I catch one for her to pet. She giggles her head off the whole time, which is really calming for the bird... not! But it's cute as can be and I love seeing her have such fun. And the kids are great about the "we will eat them some day" aspect, since we have made it an up-front term. If you ask Little Sister what the chickens are for, she says "Food!"

I can't think of anything else right now, so I'll go to bed. I'm sure there's more that I'm missing, but I'll get to it another time. Thanks, and stay frosty everypony!

I Love Therapy (when it works)

Sometimes, we try something in therapy and I feel like "wow, that was a fantastic failure! Never again." Other times I think, "That seems like it might work, let's keep at it." Today, I was somewhere along the lines of "This is a miracle and I want to run out and buy all of the equipment NOW."

Today, we tried Geri on something called Listening Therapy. It's not nearly as simple as it sounds. It's an adjunct to sensory integration (SI) therapies that takes advantage of the fuzzy line between the vestibular and auditory systems. A lot of the modulation that is corrected in SI therapy happens through manipulation of the vestibular system. But the vestibular and auditory fun and games all take place in the same small area - the labarynth of the inner ear. And they operate in basically the same way - fluid in the small canals shifts to stimulate tiny hairs that feed into the nerve bundle from the ear to the brain. Oh, and did I mention they share a single nerve bundle, and nerves in that bundle interact with each other en route to processing in the brain?

See that wall in the middle? Yeah, me neither.

So it makes sense, really, that you could stimulate the inner ear through auditory input and get an SI response.

How it works is using specially modulated music played through super-sensitive, acoustically sealed earphones with an expanded range from the norm. Even those awesome noise-cancelling Bose headphones don't have this range. And it's essential - because the music itself is modulated in frequency, pitch and clarity to include a larger than normal range of frequencies in a specific pattern designed to stimulate the brain in precise ways. The patient listens to the music through the special earphones while completing fine motor or gross motor tasks and the modulated music increases focus, promotes normal interaction, reduces anxiety, and basically helps the child to attend better and connect better.

This morning was the first time we tried this therapy. When we were in the waiting room, she was already throwing a fit. It was not looking good. I was already resigned to a very bad morning of therapy. Of course, she hated the crap out of the headphones. She's not a fan of new things on her body, as the failed experiment with the spandex vest demonstrated. But it was interesting... we put the headphones on her and she immediately cried, then stopped and leaned against me with all her weight and stayed there, still, for a minute. Then she cried again. She cycled between crying and leaning against me, totally relaxed, for about five minutes. Then her OT suggested we sit on the swing, as the vestibular input is normally paired with the auditory input and the swing is an easy starting point for first-time users.

Sweet headphones, dude.

As soon as we sat on the swing she relaxed into a state I've never seen before. She was totally still, completely calm, but awake and alert and listening to the music. She would, occasionally, cry when she remembered she was wearing headphones, but in between she was calm and alert in a way I've never seen before. I was in awe. She asked to see a bin that we nearby, and we took out and examined some of the stuffed animals in it, then tossed them in. She was examining the stuffed animals in a calm and focused way.

She tired of the animals, so her therapist went and got the piggy bank toy and we tried that. At first, she was getting upset because it only had two coins and the one at home has a lot more. We took a break, during which she just relaxed against me and listened to the music. Then she asked for it again and proceeded to put the coins in and take them out again and again, in a very calm and organized way. She was examining the coins with her fingers, not even attempting to put them in her mouth but deeply attentive to their physical characteristics using her fingers. We finally had to stop the fun because we were out of time. She got down from the swing, took off the headphones, jumped on the trampoline with another kid (new therapy boyfriend??) and then we left. She was calm, focused, communicative and verbal. She handled small setbacks easily.

We had a 45 minute break between therapies, so we sat down in the lobby for a snack. I was amazed at how calm, alert, attentive and verbal she was being. She even gave me some very good, very easy eye contact. This is usually tough for her, but she looked right at me and we shared a snack while looking in each others' eyes.

When we returned to her PT and speech appointments, she did very well. She was very verbal in PT, telling Ellen exactly what she wanted to do and didn't want to do. When we settled on an activity (of her choosing) she attended to it for the entire session, not being distracted and cooperating fully. She threw almost no fits.

During speech she was starting to lose the bubble on it, but she was still dong better than normal. She was very verbal, very cooperative, and told us what she needed. She engaged in a small amount of stimming behaviors, very briefly, and was easily redirected. She engaged nicely with me and her therapist.

All through this day, ever since the listening therapy, she's been rocking less than normal. She's made easier eye contact. She's stimmed less. She's been more verbal and thrown fewer fits and recovered more quickly from setbacks.

I'm in awe. Utterly in awe. I'm actually a little scared to share this, because it's only one session and who knows if this will continue to work at all. But this first session had such a pronounced, profound, immediate and prolonged effect that I'm very excited. Next week we will try it again and see how she does, and it she responds well then I'm going to find out how we get her a listening set for home. Ideally, this therapy is done for 20-30 minutes at a time, several times a day. Her therapist may be able to lend us a setup, but I'm thinking of buying one. The headphones alone are $160, but it would be worth every red cent if it continued to work this well.

Anyone else using this therapy? I'd love to hear about it, if you are!

Freaking Out

Normally, I'm a pretty chill mommy. With Big Brother and Princess Peanut, I'm pretty darned laid back. For some reason, that's not really the case with Geri.

I distinctly remember looking at her yesterday morning, while we were getting ready to go to her marathon of therapy appointments, and thinking "that one tooth looks like it's off somehow." Yeah, that whole thing about how moms can see everything and notice all and have eyes in the backs of our heads and the soles of our feet (which is why we almost never buy new shoes or get our hair done) is sometimes pretty darned true. Later, during the 45 minute break between OT and PT, I was looking at her and thinking again "that darned tooth looks WEIRD." I reached in and touched it and it wiggled. A LOT. Like, parallel to the floor and back up to vertical again.

I have a six year old. He's proudly wiggled teeth for me and I've responded with just the right amount of acting impressed and acting grossed out (neither one faked, btw) to make him beam as if he'd won a Nobel prize. We've discussed not yanking them out, not swallowing them if you can help it but if you do it will be okay, fair wages from Tinkerbell's crazy cousin who collects teeth, and all of the other things that go along with losing baby teeth. Seriously, I've done this a few times and never been freaked out by any of it.

So of course, when Geri's tooth wiggled, I completely freaked out.

I immediately began to fear for my daughter's life. What if she swallowed it? It would tear her insides wide open with it's jagged edges and she would bleed internally. It was almost certainly radioactive, I'm sure it was, and it would hide in some nook or cranny of her esophagus and give her cancer. Cancer of the throat or the lungs or the spleen or something. It had to come out!!! Now!!!

I grabbed a napkin and wiggled it some more. It moved like a reed in a hurricane, but it didn't want to give. Geri was not a fan of this action. I got a new napkin and tried again. This time, there was a tiny pop and it came out. Geri cried and the little hole bled. And then, I became utterly certain that this tooth had not fallen out. Oh no, it couldn't possibly. It had to have been broken! I examined the tooth, certain that it's anatomy was all wrong and there were pieces of it lodged in her face and burrowing their way to her BRAIN, you hear me, her ever-lovin' BRAIN!!!!And the hole in her gums looked wrong. All wrong. For one thing, a new tooth did not immediately sprout from it. I'm pretty sure that is how this whole thing works, right? I couldn't see anything in the hole. No jagged chunks of old tooth, nor a big, shiny new tooth. Something had to be wrong! I stashed the tooth in a napkin in my pocket, for later examination by the dentist whom I was certain would want an emergency appointment for facial reconstruction later that afternoon, and ran to the doors to get some cell phone reception and call my husband.

"Love, I think Geri broke a tooth!" I blurted as soon as he picked up the phone. "What!?" he demanded. "Tell me what happened." I explained the whole sordid tale and when he answered me, his voice was full of relief and incredulity. "Lauren, she just lost a tooth. That's all." Relief, because his daughter was okay. Incredulity because I had called him in the middle of a nervous breakdown over something so mundane.

This is not in my character. Normally, I'm a pretty level-headed mom. (I said mom, not person. Don't attempt to apply that to the rest of my life!) Somehow, with Geri I am suddenly neurotic and freaked out. I'm not sure if it's the fact that she is adopted, and I feel that looming over us, sentencing us to a lifetime of uncertainty. Perhaps it's because of her special needs. All I know is that, with her, I almost always feel as though someone took my well-worn playbook and threw it on a merrily burning fire. I'm at a loss with her about things that are normally no big deal at all.

I really should have seen this whole tooth thing coming. She's 5. Every time she gets anesthesia, they ask me if she has any loose teeth. Other kids her age are losing their teeth. It's that time of life. But in a lot of ways, she doesn't *feel* 5 to me. She's only been home a year, so in that way she feels like a baby. And she is still pretty delayed from her peers, so she feels around 3 from that perspective. She's started school a year older than her brother did, and I think that makes me think she can't be more than 4. That's preschool age, right?

Yet, somehow, I have moments where I couldn't even begin to tell you her age. Oh, I can spout her birthday like nothing. I repeat it enough for doctors and such. I know hers better than mine, now. I can tell you how long she's been home. I can tell you her current developmental level. I can tell you about milestones and where she is on them.

Moreover, I can easily list every drug she takes and the frequency, dosage, and prescribing doctor. I can tell you the phone number of her ophthalmologist and pediatrician and therapy center from heart. I can tell you the dates of every seizure, the exact heart defects, the particular chromosomal abnormality, every diagnosis and therapy and surgery and treatment. I really ought to try to be an extra on a medical drama. "Doctor, this peds patient needs 50 mils of Keppra and Diazopran STAT!"

But, somehow, I keep forgetting that she is 5. And getting older. Daily, go figure.

So where does that leave me? Over in the corner, with a dish towel over my head, breathing into a paper bag because my 5-year-old lost a tooth. And I will be back there again when she gets hair on her legs, or breast buds, or (oh God in heaven I hate to think of this) her first period. OhmyGodshewillgetoneofthosesomedayandIwillnotbereadyatall... okay, I'm back. Sorry.

I'm realizing that I will never be ready for her body to march on and meet all of it's milestones, whether her mind and psyche follow suit or not. And, frankly, that freaks me out.

Back Again!

Sorry for the hiatus. Here is what happens... A bunch of stuff starts happening in our lives (good and bad) and I'm thinking "Man, I need to blog and share this!" but I'm so busy with all of the stuff that I can't seem to find time. Then it starts to back up, and I feel like I want to share but I have all this new stuff to tell and still need to get old stuff told and I hate to tell it out of order... Yeah. This is my neurosis. I create a mental backlog of theoretical blog posts and it keeps me from generating any actual blog posts. Is that proof that I'm nutty?

The only way I'm actually going to get any of this out is to ignore my internal conventions and just get going. I feel compelled to share the last thing first, then go from there. Sorry if it offends your OCD, but if it makes you feel any better it bugs me too.

For those who may not know, Geri's visual impairment is due to congenital glaucoma. That thing that makes old people go blind... yeah, it very rarely is present at birth. The normal treatment for glaucoma in infants is immediate surgery to open the trubecular meshwork (eye plumbing) so the vitreous humor (eye juice) can move normally and drain appropriately, keeping the eye pressure (just what it sounds like) in normal range (10-20 mmHg). If pressures are out of control, they damage and eventually kill off the optic nerve, distort the shape of the eye (causing severe near-sightedness), and create scar tissue in the corneas. Untreated, over a period of about 10 years, the eye would eventually atrophy and rot and have to be completely removed.

When Geri came home, her glaucoma had been untreated for three years. No surgery, and she had been placed on only one medication very late in the game. Not a good plan. She immediately had surgery on her right eye, followed a couple months later by her left eye, to open the meshwork and create drainage. The right eye was awesomely successful. Pressures in that eye are typically around 13 - very normal. The eye has actually shrunk back down a bit, and with her new cornea that eye is in tip-top shape.

Unfortunately, the left eye didn't "take" as well. Pressure in that eye is back up, around 26, and something must be done. Dr. B is going to be putting her under next Wednesday (oh God, that's less than a week... my baby is having surgery again in less than a week... sorry, I just freaked out for a sec) and he will be trying to open the meshwork again. If he can't he will be placing an artificial valve. The valve is a mixed bag, because it's a sure thing to drain the fluid, but it has to be replaced every three years.

Congenital glaucoma is a tough diagnosis. Most parents don't realize this, at least at first, and when Dr. B first said that to me, I was not so sure I believed him. But it's true. It's a lifetime of management and care. Regular pressure checks, repeat surgeries, lifelong medication. It's not something that just gets "fixed" or even "treated" or "managed." The best we can hope for, really, is containment. Keep it under a certain level and intervene every time it pops up. For life. And the risk of blindness never truly goes away. At any point, if the pressure can't be contained, she could become completely and permanently blind. I've been dealing with these realities a lot in the last week or so.

We all want to believe, as parents, that we can fix any problem, kiss any boo-boo, prevent any negatives from touching our kiddos. We have all the answers. It can make us rather insufferable, frankly, to our friends and family because we are used to being The Authority 98% of the time. But we don't really have all that control. We just pretend to, because day to day life requires us to and because the ruse feels rather good and safe.

This is why Sandy Hook and Columbine are so devastating for us. It's why illnesses and birth defects and accidents keep us awake at night. Underneath it all, we know that we truly don't control our kids' every waking minute and we can't prevent bad things from getting past our guard and touching them. We're just not in control. Glaucoma gives me a constant reminder.

The good news, for me, is that I know who is in control. I know that He has plans for my children, and that even the things that look terrible to me in the moment they happen, or the moments after, work out a purpose I can't possibly anticipate. I have only to trust and obey. If I can live in an attitude of trust, then I don't have to worry. I don't have to control anything. It's all in good hands.

Hero

Today, I heard a radio advertisement telling men to buy their women jewelry so as to be "your wife's hero." It struck me - is that really our definition?? Our husbands are heroes if they buy us pretty baubles? It immediately made me think of what happened at dinner last night.

We were wrapping up our favorite family tradition - Pizza Night. Every Friday we go to the same mom-and-pop pizza buffet. We've been going there now for over two years, and it's like being with family. Last night, we were gathering the kids and leaving around at around 7:15. I started hustling the kids out to the car while hubby paid the tab and chatted with the owner.

As I was loading kids into the mini-van, a homeless man walked past. I'll be honest, I tensed up. He was older, he looked to be drunk, he was disheveled and sporting a pretty mean black eye. He looked tough, desperate, and not in his right mind. As he was walking past, my husband came out of the restaurant. The guy turned to him and said "Hey, could you spare some change?"

Hubby said "What do you need it for?" "I'm trying to get a bus ticket so I can go apply for a job," the man said. "I don't think anyone's hiring at this hour," hubby replied. "Well, it's for tomorrow morning," the man said.

My husband looked at him and said "I don't have any change, but how about I set you up with some food? Are you hungry?" "Well, yeah," the guy said, sounding incredulous. My husband took him into the restaurant and paid for him to get the buffet and a drink. He asked his name, asked him about his shiner, set up one of the cooks to help him, then paid his meal and told him "God bless you, stay safe" before leaving. And when we got home, he said to me "It makes me so sad. Sure, he got to eat tonight, but he's going to be sleeping on the streets and it's cold and dangerous and I wish I could have done more." He's prayed for the man that night and again today.

I'm proud to have such a compassionate, loving, caring, selfless man as my husband. I told him later that I am so proud of him, to see him be an example of Christ's love like that. He shrugged it off. He'll probably be embarrassed that I'm telling this story, because he didn't do it to brag or boast or show off.

This is why I love my husband. Who he is inside is worth more than a million pretty pieces of jewelry. You can't get true character by spending money. You get it by treating others with decency and value, no matter what. By having respect and honesty and compassion. By shining the light of Christ into this world in action and deed. That's a real hero to me.

The Plague of Tics

I alluded to the fact that Geri has some "tics." I sometimes call them "-isms", because some of them seem to be "blindisms" or "adoptedisms", but they boil down to uncontrolled, repetitive behaviors that she has a hard time reigning in. I suspect lots of adopted kids, who have suffered neglect or trauma, have some of these types of behaviors, and I know for a fact that a lot of blind or otherwise disabled kids have them, too. That's without throwing the Autism spectrum into the equation, which is characterized, in part, by the tics.

I wanted to share our experiences with Geri's tics because I think it does two things - 1) gives people in our circle of life a platform for understanding our daughter, so they don't think she's nuts or having a seizure or something and 2) gives a bit more info to people who might be dealing with something similar, as I can share what we have found that works for her and possible interpretations. There's a lot more to these behaviors than meets the eye.

When Geri came home, she had some tics. Over time, with lots of sensory input and PT and sensory therapy and brushies and squishees and redirection from us, that stuff subsided a great deal. However, following her cornea transplant, a lot of it has come back. We've seen this before, actually, that a change in her vision leads quickly to an uptick in tics. This time, it's been fairly marked and dramatic.

She has started rocking again. No, not blasting White Snake in her room late at night. It's more like she's throwing herself against her seat for the sensation of smacking into it. She hits herself in the head. She squeals and shrieks. She pulls at her clothing, flails her arms and contorts. She pulls at her tongue and lips. Shoves both hands into her mouth. Honestly, it can look pretty fricking weird. I suspect that people who see this think she's either possessed or massively autistic/retarded. Maybe they think she's psycho.

Then they think I'm psycho, because my response is to tell her to go pick up my bag and bring it to me. Then I tell her to put it back. Then I ask her to bring it to me again. Then I hand her something to throw in the garbage. Or I throw out something random like "Say 'mommy, I'm hungry.'" and proceed to give her crackers.

Here's what we've figured out about these fits. First, there's always a trigger. It's almost never totally random or out of nowhere. It may look that way, but that's until you decode it. When she's messing with her mouth, it's because she's hungry. Sometimes, when she starts rocking in her seat it's because she wants to get down. Much of the time, it's linked to overstimulation. There's too much input, often visual input, for her to process. Many times, it's linked to a specific frustration, like being told "no" or that she can't have or do something she wants. It's her way of throwing a fit, the equivalent of laying on the floor and screaming and kicking her feet. It just looks a hell of a lot more bizarre.

Geri's sensory system is, to say the least, ill equipped for the world in which she lives. She started off at a deficit, because of her blindness, and then she was severely understimulated in the orphanage. We also suspect that she was quickly moved from almost zero stimulation in the infant room to the highly stimulating environment of six or seven toddlers running around in the toddler room at about the age of three. So after three years of nothing, she got tossed right into the deep end. Blind. She has every right to have a sensory processing deficit, honestly.

Which is where carrying my diaper bag around comes in. There are lots of ways to deal with a sensory problem, depending on the nature of the problem itself, and "heavy work" is a good one. Moving, lifting, carrying, pulling or pushing something heavy provides tons of proprioceptive input that stabilizes and calms the sensory system. It releases endorphins, which give a kick of feel-good to the brain, and gets some of that energy worked off. When she is spun up, it's the best possible response. It also calms and focuses her almost immediately to be given a simple, easy-to-understand task. When she's feeling loopy, it seems to ground her and give her a sense of purpose that settles her mind to be given something to do. I kid you not, telling her to throw something away for me can end a fit instantly.

And, to be honest, I'm already seeing the tics begin to subside. If we were consistently using brushies and squishies it might be moving faster, although I somewhat doubt that. She doesn't respond to the brushies and squishies as if they are helpful. One of her therapists told me that, in the world of sensory integration, you can tell if you are doing what your child needs because they respond happily. "If she's smiling, you are giving her exactly what she needed." When I brush her, she just seems to tolerate it. But as soon as I hand her something heavy and tell her where to take it, she grins from ear to ear.

So, if you see us out and about and I'm pulling all the chairs out from the table and making her push them back in, there's a reason. And it's not just because I'm some sadist who likes to give her child a Sysiphean task.

Only I Manage This...

What other adult gets tested for whooping cough twice in a four month period??? Seriously. This is the second time in a short while that I have come down with a crazy chest infection and ended up at urgent care. Both times they've had to test me for Pertussis because my cough was so bad that it sounded like that! sigh.

I'm still waiting on test results to find out if that's what I have. So here's my PSA... don't smoke, kids. I smoked for 13 years, total. I started at the tender age of 13, stopped for about two years when I got pregnant with and gave birth to TJ, then picked it up for another year before quitting for good. I smoked heavily, often times clove cigarettes, and I believe I am paying for it now. Every time I get sick, it goes straight into my chest and takes hold. Don't smoke, kiddos. Even if you quit, you'll pay for it later.

In other news, Geri's eye is healing very well. The new input seems to be getting her spun up, but that has been settling down recently and I'm happy about that. I'll have to write more about it, because I think there's some useful info in this whole story to put out there. But not tonight.

For tonight, I will leave you with this fun image from food shopping today...

Yoda and Luke go grocery shopping...

Diet Update

Thank you, all, for your encouragement and advice after my first post about this. It was scary to make a big change to something as fraught as our diet, and I was scared, so your kind words helped a lot.

Don't try to act innocent, soy!

I'm pleased to report that all is going really well. I was very very worried about how Geri would do, with her feeding issues, and I'm a little ashamed now that I underestimated her so much. I was scared she would reject all the new foods and convinced she wouldn't tackle all that chewing, but I was so wrong. She's munching on meats and veggies and fruits and doing great. I have to cut it into smaller pieces for her, but that's to be expected. Sometimes, she gets a little overwhelmed because she forgets to swallow what she's been chewing and then her mouth gets too full, but event hat turns out okay. Gross as it may sound, she just spits the mass out on her plate and then takes a little bit of it back fro round two. With all the feeding issues, our family has utterly nasty table manners, but oh well. It works, and that's what matters.

In addition to all the great input I got from y'all, I also got a chance to pick the brain of one of my favorite therapists from Geri's old feeding group. She gave me some tips and idea, and also pointed out something very important for our miss Mera. Many moons ago, when Mera's dairy intolerance first cropped up, we figured out that the culprit is not lactose, but dairy protein. What I didn't know is that soy protein is almost identical to dairy protein, so if someone is intolerant of dairy protein they will find no relief in switching to soy! Well, crap... that takes that soy yogurt off the menu. Just as well, it was runny and Mera wasn't impressed. But it leaves me with a conundrum... how to replace yogurt? And should I even bother? I could use almond milk yogurt, but it tastes weird and has a bizarre consistency. I could use sheep's milk yogurt, but it's $3 per cup! I could use coconut, but it's super thin. I could thicken it with protein powder, but that usually has whey in it and that's a no-go. I'm thinking I might just let it go.

The therapist also recommended I not take Geri down to 100% carb free. She pointed out that carbs are essential for processing protein in the body, and that they provide complex sugars that give longer lasting energy than fruits. She wants to see Geri on some amount of whole-grain carbs. Honestly, I was never really thinking of going totally carb-free. I just wanted to reduce it a whole lot and I figured shooting for none but knowing I can't control everything would land us at an actual reduction closer to 70%. I aim high, knowing I'll never make it but figuring that will get me closer to where I need to be. Does that make me a pessimist? At any rate, I bought some quinoa and I'm working more barley into the mix.

Another thing that the feeding therapist suggested was adding a probiotic to both girls' diets. I can't believe I didn't think of that, since I used a probiotic when Mera's dairy thing first popped up. She said it's a god idea when making a diet change to add a probiotic to keep everything working properly and your immune system functioning during the change. I found a dairy-free kids probiotic powder at King Soopers, so I'm working it in for both girls.

So, what about results?? Without going into too much disgusting detail, it's working. Geri's moving again, and since I dropped the soy I have seen some improvement in Mera. They both seem to be moving their bowels more regularly and with less difficulty. TMI, I know, but at least I'm not posting pics or something. Stroll on over to STFU, Parents and this won't look so bad.

Diet Debacle

We're going on a diet! *grinds face into corner of table for an hour* No, really, I'm so excited.

Mera and Geri have both been suffering from (TMI warning) terrible constipation for so long I honestly am not sure when it started. I've been dosing them with Miralax recently, just to make them comfortable, but I know this treatment ought not to be done forever. Something has to change, and it has to happen in their diets.

I'm French, so this one hurts. 

Geri, I already kinda knew her diet needed tweaking. She would live on nothing but carbs if I let her. Mac and cheese, spaghetti, bread, graham crackers... I could keep her fed for a year without ever making anything that grows touch her lips. I know that isn't a good plan, but with her feeding problems I have felt that my hands were tied. I was also concerned because, aside from the obvious potty problem, there is also an issue with normal weight obesity. What's that? Apparently, when a child has been nutritionally deprived and malnourished for a long period of time (oh, say, about 4 years) their body behaves as if it is obese at a normal weight. The heart, liver, kidneys, etc. all get affected at what would be, on any other child, a pretty average weight. Right now, Geri is in about the 75th percentile for weight and height. On any other kid, that would be just fine and dandy, but on her it's possibly dangerous. Her doctor also specifically warned us about carbs for her, simply because her metabolism is so messed up at this point.

Don't try to look all innocent, Cow. You know what you did.

Mera is another fun study. When she was born, she was severely dairy sensitive. Not just lactose, but all dairy. I was nursing her, and I couldn't even eat bread because of the whey used in it. I could not have a glass of cow's milk, but I could have goat's milk. Which, by the way, is not really the "gimme" it might sound like. Stuff tastes weird. The cheese from it is great, but the actual milk tastes a little like feet smell. Just saying, is all.

So here we are, two members of our family have specific food exclusions. Mera has to be "no dairy" and Geri needs to be "low carb," but she is also "doesn't enjoy chewing solid foods." Nick is "please don't make me change my diet" and TJ is "wanna ride bikes?" I'm trying to figure out how the heck I'm going to feed them all.

For now, I'm cutting the milk and milk products for Mera. I'm not yet making her totally give up anything with whey in it, because I think her system is stronger now and I want to see if just taking out the milk will do it. However, I'm trying to make sure Geri doesn't get all those carbs and the girls are always together at meal times and I can't give one girl one thing and another girl another because that would start all sorts of hell breaking loose. Here's where I am so far.

Pick me! Pick me!

1. Vanilla Almond Milk. I tried giving both girls fruit and applesauce for breakfast. Geri hardly ate anything and I hate to send her to school so hungry. She loves cereal, which has carbs but if I make the rest of the day carb-free I feel like it's ok, but if Mera sees her eating some then she'll want it too and that. mean. milk. Now I can give them both cereal, mera with almond milk and Geri with cow's milk, and no one is the wiser.

2. Goat's Milk and Soy Yogurt. The girls also love yogurt. If I give Geri the dairy version and Mera the non-dairy, it should be ok. Or I could just give them both non-dairy, but it's real expensive.

3. Chicken Nuggets. No, not a health food. I get that. But it's very low carb, no dairy (I'm not counting whey, remember) and easy to eat. It also gets Geri in a chewing frame of mind, so she'll attempt he fruit and veggies I give her.

4. Applesauce. I buy the Buddy Fruits, which have no sugar or preservatives. Just apples and other fruit. A serving of fruit, something in the tummy, no chewing. Works for everyone.

5. Fish. Geri loves fish, so I'm praying that will bring us through a lot of mealtimes.

Today was the first day, and I'm not sure how long it will take for their "systems" to improve if I'm on the right track. Anyone have any educated guesses? Any tips or advice for a changed diet? Recipes? Want to come and cook for us while I go have a good cry? Seriously, this is such a huge change and it feels like I have SO MANY hurdles to deal with in all of it. Money (have you SEEN how much quinoa costs?!?!), time, feeding difficulties, taste buds that have a lot of programming in their history... This is a lot. The things we do because we love our kids and want them to be able to poop. Hallmark should put that on a card. Your welcome.

Beautiful Eyes

Today we were driving and Geri looked at me (I wasn't operating the vehicle, don't worry) and the light hit her just so and I could see the outline of her new cornea. There was this amazing circle of white light in the middle of her right eye. It was sort of breathtaking, really. So clear and vibrant, lit so it appeared to almost be glowing. I wonder if that outline will persist after the cornea heals in place and the stitches are removed.

Her right eye will be rather remarkable in the end. Before the cornea transplant, the stretching in her cornea gave it a milky, blue-white color. There was a wide area of this coloring around the edge of her iris, and it streaked across the middle. Now, there is this clear field in the middle with a ring of milky blue-white around it.

I've often wondered what exactly is her eye color. It's hard to be certain, because it's a real trick getting her to make good eye contact with you for any amount of time, but it appears they are an incredible dark blue. It feels like there is something important to be learned from this - the "defective" part of her is utterly gorgeous. So much beauty is found in our flaws, if we only know how to look and see them differently.

The Cornea Transplant

Yesterday Geri got he new cornea. I honestly still don't truly believe it happened, because she's recovering so well that you can't hardly tell it happened. If she weren't wearing a clear eye shield, you'd never know that she had her eye cut up just yesterday.

The morning of the surgery started with a 4:45am departure for Denver. Our pastor met us as the surgical center, and we got her paperwork completed and brought her back for prep. Pastor waited in the lounge area until she was prepped and ready to go back.

It's sort of sad how good we've gotten at anesthesia. We know every in and out of Geri's surgical prep. At this point, I can tell the nurses exactly when and where they can check her vitals and how in order to keep her calm. Blood pressure on the leg, not the arm. Pulse ox on the toe, not the finger. Change her into the hospital gown as late as possible. I'll do the eye drops myself, thanks. And it's sad when you can tell the anesthesiologist that she does really well with propofol, the Midazolam seems to really screw her up in recovery, skip the laughing gas because it really doesn't help, and you know exactly how to hold your child so that when they go totally limp you are ready. We are pros at anesthesia at this point, and sometimes that makes my heart hurt a bit.

The staff at Harvard Park Surgery Center were really great.  They were very nice, very cooperative, very reassuring. They made Geri's prep as easy as possible, and I really appreciated that. Closer to surgery time, Pastor came back and we prayed over her. Then Dr. R showed up and talked to us a bit before the main event. He told us that we were really lucky, the "tissue" was very good, very healthy. He said that it came from a 2 year old, which sort of floored me for a moment. He double-checked a few things, we put on our bunny suits, and we headed back to the OR. There was a funny moment when we walked in the OR and there was no bed in the room because the nurse was bringing it in and I looked at the anesthesiologist and said "So, are you just gonna hold her the whole time?" The bed was right behind us, and soon Geri was on it getting the gas and being super brave and then she was out. We kissed her, prayed over her, and on the way out I prayed over Dr. R.

An aside, I do this EVERY TIME she has an operation. Dr. B is getting used to it, I think, but it seems to surprise docs when the mom says "May I pray over you?" on the way out to the waiting room. So far, everyone is really cool about it. I have not had any doctor or nurse refuse my offer, I think because they realize that they don't have to be a Christian for me to be one and it matters to me so they let it fly. Which I appreciate, because if a doctor ever said no I think I'd just do it anyway. I really only ask first because I put my hand on them when I do it, and I try to announce myself before touching strangers. Just a policy I have.

We headed out to the waiting room and Pastor was still there. He hung out with us, watching TV and discussing comic books (we have a really cool pastor) until Dr. R came out about an hour later to talk to us. Of course, he comes out while I'm in the bathroom but he was still there when I got back and there really wasn't much to discuss anyway. We would be seeing him in his office at 1230, so he was going to give us the after-care details there. He said that the surgery went fantastic, that everything was in place and it looked great. We thanked him and he left. Pastor said his goodbyes and we prayed with him and then he left, too, and we went back to see Geri in post-op.

Wow, this is turning into a loooooong post. Oh well, if you're still here then I guess you're in it for the long haul so I'll keep trucking. Perhaps all this detail is boring for most people (it's ok, I understand) but I suppose if anyone ever has to go through a cornea transplant for their kid and they want to know about how it all works, this could be useful.

Anyway, when we got back Geri was still mostly out but starting to become more awake. Her eye was thoroughly bandaged and covered with a clear plastic shield. Another benefit of being very used to anesthesia - I know exactly how to handle her when she wakes up! I told the nurses to remove all the stickies from her chest while she was still groggy, that was it pisses her off only briefly. Same thing for the IV, although some nurses don't like that idea. They want to keep the IV in just in case the kid won't take fluid orally. They need to make sure the child stays hydrated. However, I've done this enough times to know that she will take the oral liquids more readily if there isn't an IV in her hand or arm pissing her off. This nurse was awesome and took out the IV when I told her that. I also got them to take off her blood pressure cuff and bring over a comfy chair so I could sit in the chair and hold her in my lap. At this point, Geri was rousing and starting to be pretty pissed, but as soon as we got into the chair she laid her head on me and fell asleep again. She slept for another hour or so. The nurse was great about checking her blood pressure on her leg, to avoid ticking her off again. It worked like a charm.

When Geri woke up she was hungry, so we gave her some vanilla pudding and a BUTTLOAD of graham crackers. Here's another point of interest. When Geri comes out of anesthesia, she gets something I like to call "Drunk Face." Ever get drunk and your nose and mouth area seems to feel numb? Yeah, when Geri is coming off the anesthesia she rubs her nose a lot and won't drink from a cup or a straw. I think it's because her nose and lips feel numb and awkward. She drank apple juice off a spoon, but wouldn't touch it from a straw or cup. Poor thing. But she was loving those graham crackers.

She was in surprisingly high spirits, so when she finished her crackers we changed her and packed up and left. On the way out we knew it was lunch time so we mentioned pizza and she got all sorts of excited. We hit Anthony's Pizza and she ate a huge slice of cheese pizza. She was in an unbelievably good mood. After that, we headed to Dr. R's office.

Another piece of useful post-op info... it's totally normal for your child to run a low-grade fever after surgery. We didn't know this, and it hadn't happened before, so we freaked. Oddly enough, Dr. R's office did not have a single thermometer. I guess with his specialty, it just doesn't come into play. She felt warm, and we were nervous, but he reassured us and recommended we get with her primary care doc to be sure. He was certain, however, that this was not a danger to her eye and the new cornea. He removed the padding, and from what he was able to get a look at he said the eye looked "perfect." He sounded super confident and was very pleased with the results. He said again that the tissue was just unbelievably good and healthy, so he had total confidence that the transplant would be a success and bring a huge improvement to Geri's vision in that right eye.

We headed home, with a pit-stop at her pediatrician's office to find out her temp was 99.2 and she was fine, and then I ran out to fill her prescriptions. The post-op care for this procedure is not terribly complicated, but there's SO MUCH of it. In addition to her normal medications, she now is getting steroid eye drops 6 times daily (works out to every two hours while she's awake) and antibiotic eye drops 3 times. This is the regimen for the first two weeks, until we see Dr. R again and he revises the schedule based on how well she's doing. The eye shield stays on 24/7 for probably a month or so, then she'll wear it when she sleeps for another 3-4 months. She can't be permitted to rub or press on the eye at all. She will have EUAs every 6 weeks until about the 9 months mark, depending on how everything is healing. The stitches stay in for about 6 months, I think. Again, it depends.

What is most amazing about this surgery is how well she is doing. She's had far less of a developmental setback than we had feared. She's being rather clingy with Nick, and she's no eating as well as normal, but otherwise she is doing great. She's still using her words as much as before, so no verbal setback. She's walking around just fine, no gross motor setback. With the clear eye shield we are not seeing a huge setback visually, but she can't wear her glasses right now because they don't fit over the shield, so she seems to be seeing less clearly as a result. Still, she's playing and laughing and there are moments when I look at her and say "Did I imagine that whole surgery thing?" It's really surprising, and I know this is a blessing from God. He has smiled on this process and made it smooth for her, and I'm so grateful.

If you actually read this entire post, thanks. I appreciate it. I hope it gave you some insight into this type of surgery, what all it entails, and perhaps that info might be useful to you or someone you know. Honestly, that's the only reason I do this blog. I hope that our experiences might be helpful for someone else, in the form of info or encouragement, and that's why I overshare so much. Thanks for listening, I hope it was of use to you. :)

One Year Home... Belated

I feel rather bad about this, but the 19th was the anniversary of Geri's homecoming and it was completely overtaken by events.

I know most people get really excited about "Gotcha Day!", the day you took your little one out of the orphanage, but I'm way more excited about "Homecoming Day", the day Geri entered the U.S. and came home for the first time. Why? Because when we took Geri out of the orphanage and returned to the apartment in Sofia to wait out the final paperwork before we could leave, it didn't really feel final. That time spent in Sofia felt very much in-between. It still does, in my memory. It felt like a really tough babysitting job, immersed in a culture we didn't know and cut off from our loved ones. We could barely call anyone to gloat over our awesome new daughter, or cry over her massive needs. We couldn't truly start caring for her in the way we wanted to, because we couldn't get the things we wanted for her or give her the medical attention we knew she so desperately needed. All we could do was hang out in the apartment, go to appointments, walk to the Jumbo or the grocery store, and generally wait it out. We were missing our other two kids and generally feeling adrift. It almost felt like someone would turn up at the end and say "Well, thanks for watching her. Have a nice life. Give her here."

But when we landed on U.S. soil she was truly ours. No one could come and get her. She was a citizen of the United States, a member of our nation. And when we came home she was enfolded in her family for the first time, we were united as the full unit we would be for the rest of our lives. It was for reals when we brought her home and she slept in her own bed.

So, although I have a pretty awesome excuse, I still feel like a bit of a doucher to have not made more of that day. That morning, while I was out running errands to get ready for a Thanksgiving trip, I got a call from Dr. R (cornea specialist.) I had called him early that morning and left a message to let him know that we were leaving town and to give us a good amount of return time if a cornea became available. So, when they called back, I thought I was just getting a HUA out of them. When the nurse told me that a cornea was available and the surgery would have to be Wednesday morning at 7 am, I honestly didn't catch it the first time. I had to have her repeat it. Twice.

Thus launched a flurry of preparations and a massive switching of gears as we went from "leaving tomorrow to drive to Wichita" to "going to Denver on Wednesday for a new cornea." It wasn't until about 5 pm that I called my husband and said "You know what day it is right? What are we doing for it??"

We ended up going to My Big Fat Greek Restaurant (closest thing to Bulgarian food in Colorado Springs) and going around the table, telling each member of the family our favorite thing about them.

It was less of a production than I had hoped, but I actually liked it. It was fun, and the kids had a good time. As for the surgery, please forgive me if I leave you hanging until tomorrow for the details on that one. I'm frickin' wiped. G'night.