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.

One Year Ago: Part 3

Sorry, I'm late. Oh well, I think you all survived the wait. :)

Yesterday, Geri had a dentist appointment. Honestly, I'm sort of stumped for how to present what happened yesterday and what it all means. I'll start with what that was like one year ago, I guess.

When Geri came home, no one had ever brushed her teeth. Never ever. She was orally defensive, to say the least. We could not touch her lips, tongue or teeth with anything other than a metal spoon or a cup. I'm aware it sounds a bit odd to talk about trying to put your hands in your child's mouth, but when you really think about it, that's an important thing. You can't brush their teeth if they clamp shut when you come near. You can't check for loose teeth, or see if they chipped anything when they fall. You can't even put chapstick on them. And you sure as shootin' can't get them into a dentist's office for any useful purpose. Riding the chair, by the way, doesn't count as useful in my book.

So, when Geri had her first visit, about 9 months ago, we were proud of her for letting the dentist pry open her mouth for about 50 seconds to peek inside. No instruments, no brushing, no x-rays. She had to be knocked out for all of that.

Yesterday, she got x-rays of her teeth. No, she wasn't exactly pleased but it happened. She opened wide for the dentist and gladly let her brush all of her teeth and look at them. She let the dentist look with the mirror and even scrape a tiny bit with the probing instrument. It was awesome.

It was also the result of hard work on everyone's part. I never pictured parenting her as involving 5-minute sessions of mommy exploring her mouth with a finger, just to get her to allow tooth-brushing some day. It was one of those surreal moments in parenting that paid off. Even if it was really weird at the time and I still think it sounds crazy written out. :)

A Year Ago: Part 2

A year ago, today, we took Geri to a doctor in Bulgaria to be cleared for entry to the U.S. It was something of a dog and pony show. He never took her height or weight, but he filled in those blanks. That sort of sums it up, right there.

Today, Geri saw Dr. Kim and he was amazed at her progress. He checked her thoroughly and declared her healthy and blooming. There are just too many health improvements to list. She was undernourished and stick skinny, today she's getting on the chunky side. She was ghostly pale, today she is pretty tanned. She was scared, withdrawn, unemotional, disengaged. Today, she was playing and laughing and climbing and interacting with everyone. Then, she was silent. Today, she was all chatter. She makes requests, comments, jokes. She pretends to be animals. She names her body parts and the sounds animals make. She counts to ten, although she tends to skip over some of the numbers here and there. She doesn't rock anymore. She's animated, lively, funny and sweet. He couldn't stop raving about how far she has come. Then he looked at me and said, "You look really beautiful, you are glowing. You seem full of joy." We all are. A year ago, I was overwhelmed and scared. I was jet-lagged and Nick and I both were surviving on Milka bars from the convenience store a couple of blocks over. We both felt like we had been run over by a bus and we were having a hard time seeing a future. We wondered, at times, what we had gotten ourselves into and felt totally inadequate for the task at hand. Today, I can safely say that we are all thriving and enjoying life again.

Another big difference - I gave the kids baths tonight. A year ago I tried to bathe her and found that Geri was terrified of the water. She screamed and cried in terror when we tried to put her in the tub. Showering her was no more successful. Hell, she was scared to death when we undressed her to change her clothes. Getting her naked and into the water was not happening. I recall being thrilled when we got her to sit in the water in her diaper and shirt. It only lasted about 20 seconds, and she ended up nigh hysterical afterwards, but I was proud of us all. Tonight, she kept saying "Bath! Bath!" and was excited about it. She cooperated with hair washing and played in the water, splashing up a storm and squealing joyfully. She played with cups and poured water and had a blast. Hell, she climbed into the tub on her own as soon as I turned the water on, before it really started to fill up. She sort of sat in it and looked around as if to say "Well? Get a move on!!!"

Funny, how this week has been mirroring that week one year ago. It's been totally unintentional, how things seem to be happening on the same days, in the same pattern. Perhaps God wanted to make sure I could make these comparisons and see just how far we've come. 

One Year Later: Part 1

If I did this all in one post, it would be way too much to tackle, so here's the plan. Each day, I want to compare what happened today to what was happening one year ago today. I'd like to do this every night this week, culminating in "homecoming day" on the 19th.

Here are some things that stand out to me about today versus this date, one year ago.

This morning, Geri woke up in the top bunk and climbed down the ladder, out of bed. A year ago, the idea of her tackling a ladder would have been laughable. She was happy and excited and talking, right out the gate. A year ago, her morning routine was to wake abruptly, immediately become agitated and demand to walk around the apartment, nonstop, holding our hands. When she woke up, she was clearly freaked out every morning for several weeks. Now, she's happy to see us and talking to us and bouncing in her bed with excitement. Pretty much every morning. She also helps dress herself, and can put her dirty clothes in the hamper.

Straight out of bed and walking around... this was our whole day.

Nick got the kids ready while I dragged my feet a bit (still not 100% feeling better yet) and then it was out the door, into the carseat, for the long ride up to Denver. One year ago, today, we drove to an appointment across town and she literally screamed and cried the entire time, without stop. It was about 45 minutes each way (felt like 100 years, though). She was hysterical the entire ride. Today she sat in her carseat and munched on dry cereal and bounced and made excited noises when I talked about where we were going.

We arrived at the Anchor Center. Her drop-off routine involves stopping off at the potty, where she pulls her pants up and down with minimal assistance and can wash and dry her hands independently. At the door of her classroom, she gave me a kiss bye bye and joined her class happily. A year ago I could barely leave her presence to go to the bathroom. She was indifferent to me as a person, but terrified of being alone. One of us had to be with her constantly, walking her around, holding both her hands because she lacked the strength and balance to stand on her own two feet without assistance. Today she kissed me, turned and walked off to join her class.

When we got home, she sat at the table and had some apple slices and yogurt. She fed herself, which is a minor miracle in itself. A year ago she would not touch the silverware at all. She reacted as if she was scared of touching it. She would not have been able to touch the apple slices to pick them up - she would not touch any of her food. She would not have tolerated the apple slices in her mouth, period, because she could not chew or tolerate contact with solid food. I distinctly recall being in the little apartment in Sofia and cooking and mashing apples and pears for her. That was as much texture as she could handle.

We went together to her brother's karate class and, while he was in class, I took the girls exploring the building. Geri went up several flights of stairs and down one, with no assistance from me. She walked independently with her LWC, exploring everything around her. Exploration, itself, is so different for her. A year ago, she was completely closed off. She had no curiosity in her, or at least no means of expressing it. Now, she is into everything!

Tonight, she took her medicines willingly. She helped with getting her PJs on. She asked me to read her "The Poky Little Puppy" and sat in my lap, with her sister, for two stories. This child was totally nonverbal one year ago. Today she asked for apples, yogurt, stories, to sit in my lap. She pretended to be a duck. She identified her knee, nose, mouth, eyes and the eyes and mouth on a doll. She played with toys, something she couldn't do one year ago. All she could do was walk, with assistance, and compulsively rock. That was it.

Tonight, at bedtime, she climbed the ladder to her top bunk without assistance. She cuddled up under the blankets and held her cuddly and Glow Worm and drank some milk. She talked to me while I aid goodnight to her, gave me a kiss, told me she loved me too. When I said goodnight and left the room, she simply hugged her lovies and closed her eyes. One year ago, tonight, Nick and I took turns holding her while she cried and screamed for three hours. She was inconsolable. She was despondent, scared, alone in a world turned upside down. She didn't know who we were, didn't trust us, and fought sleep with everything she had. I remember being grateful that we weren't in the U.S. because if we had been, someone would have called the cops on us. What on Earth would we say to a Bulgarian polizia if he showed up in the middle of the night to tell us to quiet her or to ask what the hell we were doing to the poor kid? I was jet-lagged, exhausted, emotionally drained, confused, sad and doubting. Tonight I went through a normal bedtime routine and my well-adjusted child said goodnight and simply went to sleep.

Mnogo hoobava big sister! Our Bulgarian princess!!!!

It's easy to forget how far we have come. Sometimes I look at her and I think "it's been a year, shouldn't her _________ be further along now?" But tonight, I take stock of how different everything is between this day and the same date one year previous and I can't believe how much our lives have changed.

Wow, Where Have I Been?

Sorry, I did it again. Here's the catchup and you can tell me if I sound busy enough to have an excuse for my disappearance.

1. Geri's Spine. We finally had that MRI to determine the reason behind her unexplained sacral scar. Survey says... she is fine. Her spine is perfectly normal and the scar is very surface level, so it was probably a cyst or something that they removed because it was in the diaper area and getting irritated or infected. Really wish they had just told us about it, so we could have skipped the anesthesia and MRI... but who cares? My kid is healthy (in this area, at least) and that's cause to celebrate.

2. Geri's Corneas. I can't remember if I mentioned this in the past, but Geri's corneas are severely scarred from high pressures in her eyes. This sort of thing happens when glaucoma goes untreated so long that the eyes stretch to an abnormal size, I guess. Her right eye pressures are very stable and the scar is right smack in the middle of her already narrow field of vision, so we saw a cornea specialist and he recommended we go ahead with a transplant. Is it risky? Yeah, in a sense, but many of the risks can be mitigated with careful monitoring. Will there be a benefit? Yes, definitely. Probably a huge increase in visual acuity in her right eye. In the past, every tiny jump in vision has brought on a huge jump in development, so there is reason to believe this could be a big deal for her. We are on the waiting list for a cornea, but since the tissue has to be the same age as hers, the time frame is hard to predict. Five-year-old's don't die as regularly as us old farts. I'm pretty okay with the waiting because of that simple fact, that Geri's new cornea means someone else's child died. I'm going to stop thinking about it now, because it invariably makes me cry.

3. TJ's School Stuff. It's improving, but his dr. and his teacher and his principal all seem to think he has AD/HD in some form or another. However, his teacher also has him pegged as gifted and talented. He's reading at a 5th grade level, and his math and science and such are solidly grade level. I suspect his math is about to jump, as we have finally found a good way to work with him on it and that's helped a bundle. At any rate, he seems to be sleeping marginally better and his vitamin and mineral levels have been deemed normal. I still want him tested for a sensory disorder. I think he's auditory, smell and taste defensive.

4. Geri Started at CSDB. A spot finally opened up in the preschool program at the School for the Deaf and Blind, so she started this week. She's doing great, transitioning nicely. I'm looking forward to not having to drive to Denver 3+ times per week. We will save about $400/month on gas money, I kid you not. Plus eating out in Denver... It was totally worth it to have her in the program at Anchor Center, and I'm going to miss Anchor soooooo much, but this is the start of a new phase and it came at a great time, since our Out Of Pocket (OOP) expenses reset on 1 January and we will have to start paying for medical stuff again. Our savings are almost depleted after the last year, so this will give us new financial reserves for the new medical expenses. Especially with the cornea transplant coming, since it will require a bunch of new meds and EUAs every six weeks for about nine months. Each EUA has, typically, cost us $200 OOP. Oh, and that little thing called Christmas is coming. Don't know if you heard the music on the radio yet.

5. Random Thoughts. ~ For pete's sake, can we get through Thanksgiving before the lights and music come out?!?! ~ I wonder if voter turnout was unusually high in states where legalizing marijuana was on the ballot. "I'm normally too stoned to remember to vote, but this is important!" ~ I'm thoroughly addicted to this VH1 reality show called "Couple's Therapy" and it makes me feel like I'm going to have to turn over a few of my IQ points. ~ I hope hypochondriacs are not aware of that show "Mystery Diagnosis" on the Oprah network. ~ My kids seem to be having a hilarity growth spurt. They have been saying the funniest stuff lately, and I don't remember them being this hilarious before. ~ Leaving your Christmas lights up all year is sort of lazy... but leaving your Halloween decorations up all year is just plain creepy. ~

Ok, I'm spent. Have a great night, all!!

Off the Radar

So I fell off the radar recently, due to an illness. Long, long story that started about 5 years ago with mild dizziness spells and some hearing difficulties. 2 years ago it ratcheted up a few notches, with a series of collapsing spells, lots of light-headedness and vertigo and such. I saw a (crummy) neurologist and was told that it was migraines or something. For the last two years I've had monthly "spells" of fatigue and light-headedness that we called migraines... but the absence of any sort of headache made it pretty strange. We thought it might be related to my menstrual cycle, so we tried to use hormones to control it with some success. About a month ago, it kicked back up in a big way. I've been having tinnitus, pressure in my ears, hearing disturbance, vertigo, dizziness, light-headedness and fatigue.
That's why I haven't been writing. Sorry about that.
The good news is that life has continued, things have been otherwise good, and God has kept us all very safe. In the last few weeks, we've seen some awesome progress in our little Geri-beri. She has started full-on chewing her food, eating a wider variety of foods and getting lots of solids. It's been amazing to watch. In fact, today her OT announced that she can graduate from feeding therapy! Woohoo!!!
We also finally had her assessment for PT... again. I wanted to switch her from the place she had been getting PT because they could only give her half hour sessions, and I feel like she really needs a full hour. So today she got a brand new Peabody assessment and the results are in. My four-year-old is at the gross motor level of a 15-month-old. So in the past 10 months, she's probably gained about 3-6 months of development there. I think this officially makes gross motor her slowest area of development. Yeah, I'm glad I'm switching her to a new practice. She needs the extra 30 minutes a week.
Mera-bera has started dance classes! Ok, so this is totally for me because watching her in the class is so cute I am amazed my pancreas hasn't simply exploded. But it's also for her. She is super excited about it (so far) and she does really well in the actual class. Plus, it's been killing her to be the only kid not going to school, so this helps. But yeah, it's so cute it hurts.
I finally came due for an upgrade on my cell phone, so I now have a smartphone!!! Holy cow, these things rock! I have a calendar on my phone that links to a website where me and Nick can both modify it and the changes automatically download to my phone. How sweet is THAT?!?! Oh, and there's a few nifty games, too.
Yeah, that's about everything. Sorry for the massive dump, but I'm going to try to keep up a bit more now that my mystery illness appears to maybe be subsiding.

The Scar That Changed Our World

Kidding... Sorta.

The first thing I noticed when we were preparing to take our Geri out of the orphanage, when I took her out of the horribly overfull diaper she had probably been wearing all day, was a large lesion on her coccyx. Frankly, it alarmed me. It was huge, raised, angry looking, with a deep depression in the center. My first thought was of spina bifida. Was this one of those lesions I had read about, that marked the site of some severe spinal defect? I didn't ask the director what it was, because by that point I was pretty sure she'd give me a total BS answer and it didn't matter. Geri was ours, and we'd deal with whatever that meant as time went on. It wouldn't change anything, and I was anxious to get her the hades out of there.

Later, I showed it to Nick and he was every bit as stumped as I was. We watched it, anxiously, over the next few weeks and were relieved to see it fade away. The swelling subsided as her diaper was changed more frequently, the color of the skin returned to normal, and eventually all that was left was a scar.

A scar?? According to her medical records, Geri had never had any sort of surgery in her life. Yet, every doctor and nurse who saw it (and that number quickly became a large one) said the same thing. "She's had something removed, but we can't say what." Nick decided it had been a tail, because this made him giggle a little, and it soon became nothing more than a passing family joke. Nick even developed a habit of telling Geri to wag her tail during diaper change, which always makes her laugh. We had bigger fish to fry, though, so we decided to back-burner this mystery until things like seizures and uncontrolled glaucoma had been attended to.

Things have settled down somewhat, medically, so I finally asked Geri's pediatrician about it. I decided that I wanted to know what was going on there. If they did operate on her spinal cord, I want to be sure they did it right and that there isn't anything bad going on. He referred me to the neurosurgery department at Children Hospital of Denver, and we went in yesterday for an appointment with one of the nurse practitioners, Patti.

Patti was freaking fantastical. She was patient, kind, friendly and answered every single question I had. She gave me great detail, and never seemed annoyed or irritated when I had her back up and repeat in smaller words. She explained that we would need an MRI of Geri's lower back.

Often, conditions of the spine are accompanied by some sort of marker on the skin. A weird patch of fur or a strange bump or cyst indicate a malformation below, which is really convenient if you ask me. Her concern is that Geri may have had such a marker, but they removed the marker to maybe make her look more "normal" or because it was getting irritated or infected. At any rate, whatever they removed was there to tip us off... and we need to act as if we saw it and be safe rather than sorry.

The most likely candidate, at this point, is a spinal cord tether. Normally, the spinal cord floats free down the vetebral column, allowing the freedom necessary for growth and movement. If the cord gets tethered, by some sort of ligament or fatty tissue that isn't supposed to be there, it can cause problems as she grows. The biggest problems would be weakness in the legs, feet and ankles and bladder or bowel incontinence. Once that sort of damage occurs, it can't be undone, so the normal approach is to go in and remove the tether when it's found.

Another, less likely possibility, would be some sort of spina bifida style defect that could attach spinal cord in a more "involved" sort of way. If this is the case, we won't operate until she loses function because the risk would be too high to go in pre-emptively.

At any rate, we would be looking at an inpatient spine surgery, with a minimum hospital stay of 2 nights.

We'll probably have the MRI in the beginning of October. We'll do it at the same time as her next EUA, so that we only have to put her under once. That'll be nice. Right now, I'm trying to steel myself for the outcome. I have a hard time believing that they just removed some benign cyst. The scar is pretty significant to be that. I strongly suspect that we are headed for a major surgery. Or at least, my totally freaked out heart is already crying about the worst. My head is trying to keep that little booger from running amok and making me a total wreck for the next month.

The good news, that I cling to, is that this is not an emergency. We have time, spinal tethers progress slowly and sometimes not at all. So she should be just fine and dandy for another month and then some. That makes the waiting acceptable.

In the meantime, I'm going to focus on the positive. And there's so much of that to focus on right now. Still, a part of me grieves right now. Will there ever come a time when we have all her conditions diagnosed and we know the lay of the land? Will we always be getting hit with new problems out of left field? It's sort of a slap in the face, to be reminded that she's still not normal, might never be, when she's been making such great progress. I've been riding high lately, watching her improve beyond our expectations, and it hurts to be hit between the eyes with something new in the middle of that. It's like having someone walk up to you at your wedding reception and tell you that your new husband is making out with the waitress. Somehow, timing something crummy in the middle of a celebration makes it feel 10 times crummier. But there's still a reason to celebrate, and I can't lose sight of that. Whatever may come, God has brought us so far and blessed us so much. He has done so much to redeem my little girl that I can be confident that He is with her and with our whole family. God will walk me through this, and even if this part feels kinda crappy I trust in His promise to make it better.

Joel 2:21 Be not afraid, O land; be glad and rejoice. Surely the LORD has done great things.