Saturday, September 1, 2012

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.


  1. Just stumbled across your blog and have several very impertinent questions:

    1) how did you end up having to file for Medicare for your adopted girl? Were you not required to demonstrate your ability to care doran additional child as a prerequisite for adopting her?

    2) why did you try to arrange respite for Geri? How can she bind to you if you BANISH her??????

  2. Thank you for your questions. Let me try to explain...

    1) Yes, we did demonstrate an ability to care for her financially. We are and have been able to care for her financially - thankfully my husband makes decent money and we have private insurance and we had a good stockpile of savings. But, unfortunately, caring for a disability (and for disabilities that were unkown before she came to us) is remarkably expensive. More than anyone could have prepared us to anticipate, honestly. We applied for Medicare because we wanted to reduce our out of pocket costs as much as possible, especially in the area of prescriptions. We were hoping to get her into the buy-in program for children with disabilities... where we would be essentially purchasing additional insurance coverage through Medicare. We didn't get it, and we're still doing just fine. She hasn't missed a single therapy, treatment, or medicine. We pay extra, out of pocket, for her preschool and the three tanks of gas a week to drive her back and forth. Maybe, on some level, I really just applied because I saw the expenses tallying up and the savings dipping and freaked a little bit. At any rate, thanks for your concern but we are doing ok financially. Not that I would turn away a winning lotto ticket, if you felt the need to send me one! ;)

    2) You might be confused what I meant when I mentioned "repite" care. The term can mean sending the child to stay with another family for up to a few days or even weeks. That's *not* what I meant. I was looking for a couple of hours so my husband and I could have a date or a coffee, since we haven't done that in over a year (hanging out at the hospital during a surgery doesn't seem to count). Normally, I would just be looking for a sitter, but with Geri's disabilities plus having two other kids... we're looking for a very special person. I had hoped that the agency would be able to put me in touch with someone special that way, under the umbrella of their respite program.
    That said, respite in the longer term is not dissolving or even necessarily interrupting an adoption. What if one of the parents is hurt or ill to the point of hospitalization and the other parent needs to be with them (or if it's a single parent who gets laid up bad)? Respite can get the family through a brief time of crisis. In some cases, adoption can be crazy stressful, and if someone is at the end of their rope it's better they use respite for a couple of days than to snap and hurt the child or themselves, isn't it? Is it ideal? No, probably not. Does it indicate a larger problem that needs to be adressed? Absolutely, which is why there needs to be support after the homecoming.

    As for her bonding, that's going extremely well. I often think that we are blessed by her disability, because she had no choice but to rely on us when she came home and that created a huge bond of trust.