Long, Hot, Wet Summer

rainy day

Summer can be a challenging time for us. As much as I know Lilly would love to go to a real summer camp, I don’t feel she’s ready for it. It all boils down to bladder and bowel self-care. Can she catheterize herself? Can she clean herself up if she has a bowel accident? If the answers to these questions are no, then she’s not ready. And at nine, she’s still not ready. No matter what type of camp, if she’s going to be gone for more than a few hours, she has to be bathroom-independent.

I’ve managed to find something she can do at least part of the summer these past couple of years, through a place called Artspace. It’s a nonprofit organization that offers art and music classes to both adults and children. Lilly takes violin through school, which is sponsored by Artspace, and so there is a week during the summer which she can take a violin intensive for free.

I also managed to pay for a craft class, so she had two weeks of fun this summer. The classes are perfect for her, in that they’re only 3 hours long each day, short enough for her to get through without needing to be cathed, but long enough for her to be engaged and learn something. It’s close enough to where we live, too, so I can push her there in her stroller chair when we don’t have the car, which is often (we were lucky enough not to get caught in any rain, and believe me, it’s been raining like the Great Flood is upon us). The sweat rolled off me like Ted Stryker at the controls in Airplane on those steamy mornings, but anything for my little angel (and some time for writing).

 

The problem is, the classes are expensive. Almost prohibitively expensive, for us, though I managed the one class. There’s no financial aid available for them, and a lot of the time they’re cancelled for lack of enrollment anyway. Such is the sorry state of the arts these days.

We’ve been going to a favorite lake to swim on Sundays, where Lilly can practice her still-developing swimming skills (when it’s not raining). I’ll push her into town and visit the library, the co-op for a snack, the antique store she loves to poke around (when it’s not raining). Anything that doesn’t require too much cash.

Other than that, I fear she’s been watching too much TV. I’ve seen enough of America’s Got Talent, American Ninja Warrior, America’s Funniest Home Videos, and Let’s Make a Deal to last me several lifetimes. It’s been too hot to bake (something she loves to do), and there’s only so many times I can sit for a marathon game of Monopoly.

Here’s the thing: when I was a kid, summer was an endless adventure outside, where we left our house in the morning to bike, roller skate, and play games with our neighbors, and didn’t come back until we were called in for lunch; we’d gulp down our bologna sandwich and run right back outside until dinner. It was an endless adventure.

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I’m bored, Mom.

It’s different with my child. Lilly can’t ride a bike well enough to go it alone or even ride with other children; my husband or I need to be right there. Rollerskating is out, obviously, as well as scooters. And running around playing hide and seek? Not where we live. When I was a kid I lived in a shabby house on a shabby street, but our and our neighbor’s back yards formed a sort of enclosed safe space to play. Here, there are apartment buildings surrounded by streets with zooming cars, and we have no yard to speak of (and besides, it hasn’t stopped raining).

There’s a 3-year-old girl next door who loves to play with Lilly, and sometimes her classmate Chris who lives across the street will come over to play for a while, but that’s it, and the visits are infrequent. Her best friend Lilla moved away, and her other friend Holly hasn’t been around. What’s a kid to do?

As an only child, Lilly is pretty good at entertaining herself. But after a while it gets boring. It’s been a long, hot, wet summer, and I think for the both of us, school can’t get here fast enough.

 

 

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Lucky

I’m part of a Facebook group for parents of children with spina bifida. We talk a lot about our kids’ poop (really), because that’s the focus, but a lot of things can come up. One of the things that comes up once in a while is a post from expecting parents who just found out their unborn child has spina bifida. These posts are wrenching to read, because they’re filled with such confusion and fear and grief, and they’re looking for some reassurance and hope.

All SB parents go through this (or any parents whose child has a birth defect). I’ll never forget the day, at 16 weeks during a routine ultrasound, that we found out our unborn baby had a “neural tube defect” . A rapid succession of disbelief, confusion, denial, and then outright terror shot through me. We’d barely heard of spina bifida, knew almost nothing about it. It was something that happened to “other people”, those unfortunate souls. Not us. Not our child.

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Baby days

But the proof was right there in front of us, as the doctor showed us the ultrasound pictures, pointed out the defect on the end of her spine, tried to explain what it was, and what, in a vague kind of way, might come of it. What had started out as an exciting day (we found out we were having a girl–yay!) had turned into a nightmare.

The next few months, I spent a lot of time online looking up information about spina bifida. I’m not sure that was such a great idea, since it painted a terrifying picture of what we and our child might go through. Myelomeningocele (the official term) is a fairly serious defect of the spine, and as such, can have a systemic affect, touching almost every system of the body. We were looking at the possibility of hydrocephalus, paraplegia, bladder and bowel problems, countless surgeries. My mind reeled with it, my heart shattered, my hope of any normal life for us or our child withered.

So I understand these expectant parents who cry out for reassurance. Their world is crumbling. I understand their frustration at doctors who can’t give them the information they want. I was so angry they couldn’t tell me exactly what to expect. As if they were gods or fortune-tellers, rather than human doctors who didn’t have all the answers. The thing about spina bifida is that every child born with it is different. Most have hydrocephalus and will need a shunt in their brain, but not all (Lilly doesn’t). Most of the time, the level of the lesion (the opening on the back that causes nerve damage) on the spine will determine mobility. Usually, the lower the lesion, the more mobility (but not necessarily). Most, if not all, need assistance with bladder and bowel function,  but again, every kid is different in how to deal with these problems.

I consider ourselves lucky in this regard. Lilly’s lesion was quite low. Early estimates put it at L5 (a fancy way of saying it was in the Lumbar region, on the fifth vertebrae), but considering her mobility and other factors, I think it’s even lower, closer to S1 or S2 (sacral). She walks independently, with braces from the knee down, though her balance is spotty and she’s easily knocked over. She used a walker the first three years of her life, and we thought we might have to transition to Lofstrand crutches (the kind with the arm cuffs), but she surprised us and walked on her own on her third birthday.

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Walker days

She’s a rarity in not needing a shunt, and has had only two surgeries in her nine years: the original closure surgery when she was 2 days old, and a cord detethering when she was 3 (this is when the spinal cord, in very simple terms, develops scar tissue and can’t stretch as she grows, causing problems). We live with the possibility it may happen again someday, but so far, so good.

The neurogenic bladder and bowel proves to be, on a practical level, the very worst part of SB, in our experience. We began catheterizing her bladder when she was 3. Honestly, the idea of inserting a tube inside her bladder to empty it terrified me, at first. But like anything, after some practice, it was easy and usually painless. Her doctor prescribed Ditropan to keep her from leaking between cathings, and we haven’t experienced any serious side effects, although it does exacerbate constipation, which is the bane of any SB person’s life. Another problem we’ve struggled with is urinary tract infections. Quite a few when she was a toddler, then several years with no trace, and then last year, recurring infections and a rising resistance to antibiotics. We’ve talked to the urologist, and she suggested a low-dose prophylactic antibiotic called Macrodantin, which seems to be helping. The biggest problem these days is getting started on teaching Lilly how to catheterize herself for more independence (and give Mom and Dad a break!). She just doesn’t seem interested, and if I push it, there’s tears or pouting. Good times!

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Early potty days

The other side of the bathroom coin is bowel function. Because of the nerve damage, the bowel is significantly slowed down, causing constipation. There may be limited or no sensation during bowel movements. Laxatives are a fact of life. A combination of Miralax and Ex-Lax seems to be working for Lilly, along with a cone enema every other night. This procedure, too, scared me at first, but now it’s part of our normal routine. Results can be varied, depending on whether or not she drank the milk or water I put her Miralax in, or if I forgot to give her the Ex-Lax that morning, or what she’s been eating, and on and on. I think “controlled constipation” is what we’ve learned to live with, although I probably need to work a little harder on cleaning her out. Some days she can wear real underwear, and some days she has Pull-Ups on, just in case. She’s had accidents at school, but far less than before we started the cone enema. It’s more work, but worth it.

Did I mention she has a lot of doctor appointments? She has an army of specialists, because so many different systems are affected. There’s her pediatrician, of course, but there’s also her urologist (who we see through Shriner’s Hospital), her neurosurgeon (who keeps track of her brain, watching for any signs of hyrdrocephalus and orders various MRI’s on occasion), her physiatrist (kind of like an orthopedist, but instead of performing surgery, tries more corrective ways to deal with gait problems), her orthotist, who makes her braces based the physiatrist’s prescription, an eye specialist (just to keep a look out for special problems SB kids may develop), and who knows who else I may be forgetting. Needless to say, she misses more school than the average kid. So far, it doesn’t seem to be affecting her progress too much. Sometimes SB kids have cognitive or learning problems, like trouble with organizational skills or concentration. Lilly doesn’t seem to be any worse on these counts than any other child her age. We have a 504 plan at school to make sure her physical needs are met, which we tweak every year.

Worry has become a constant state of being in my life.

wrong

Sounds overwhelming, doesn’t it? It can be. But so is parenthood in general. How can you ever prepare for what’s asked of you? You can’t, not really. So if you’re an expectant SB parent, what can I tell you except this: your experience with your child may be similar to ours, or it may not. Maybe your child will need those orthopedic surgeries, that spinal fusion, a Mace or Mitranoff, bladder augmentation, or any number of other things. Regardless, it will be challenging. There will be really tough days, and there will be rage at the gods. Doubtless, there will be tears.

But there will also be love. More love than I ever thought humanly possible. Sure, I wish she didn’t have SB (don’t believe anyone who may tell you otherwise; that’s bullshit). But she does, and I don’t love her any less for it. I feel so lucky to have this child in my life.

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Fear

doctor-appt

Lilly’s been struggling with urinary tract infections, at least 4 or 5 over the past year. The last time she had such trouble with them was when she was a toddler. Back then they usually progressed far enough for fever to tell me what might be going on; these days she’s much more articulate and can describe her symptoms, usually pain in her lower abdomen, pain when cathing, and just being tired beyond the usual, before it gets to the fever stage.

In between these two trouble spots of UTIs, there was a period of years when she didn’t have a single infection. For some reason, between the ages of 4 and 7, we had a good run, and I became complacent. I thought, foolishly, maybe we’re clear now. Maybe UTI’s won’t be such a problem for her. Maybe we can get away with this. Silly, silly Mama. UTI’s will always be an issue for Lilly. Some years will be good; some will be troublesome.

I can deal with that reality, except that any problems or concerns about her bladder dredge up a deep fear in me. Several years back, we took a few trips to Boston Children’s Hospital because the pressures in her bladder were high, and her medication at the time wasn’t helping. We were exploring the idea of using Botox to relax her bladder if nothing else could be done; otherwise, the only alternative was bladder surgery (in which a piece of tissue from her intestine would be sewn onto her bladder, in order to allow it to expand more easily and fill with urine).

The bad news was that Lilly’s bladder was not a good candidate for the Botox treatment; the good news was that by the time we actually got her to Boston for the urodynamics tests, the pressures in her bladder had gotten better (I believe it was due to changing her medication to a pill form rather than a liquid in the meantime, and so she ingested more of the medication that way). Anyway, it was a huge sigh of relief, because if the pressures hadn’t normalized and the Botox was a no go, the only option would have been the surgery.

The prospect of this surgery terrified me more than words can say. We had gone through a tethered cord surgery (surgery on her spinal cord) when she was three, and even though the operation went well and was considered a success, it was a nightmare time for us. The idea of your child going under the scalpel and undergoing a long, painful recovery is easily one of the most horrible things I can think of. I’m certainly grateful that modern medicine makes it possible for my child to live and to continue living, for the most part, in good health. I’m also aware that a lot of kids with Spina Bifida go through dozens of surgeries in their lives, from shunt malfunctions to spinal fusion to orthopedic surgeries. My kid has only had two (repair surgery at birth, and the tethered cord surgery). Lucky, indeed.

But it’s not something you can ever get used to, no matter how many or few surgeries your child has had. It’s still stressful, it still strikes fear into your heart. This sudden spate of UTI’s concerns me, and is something I’ll discuss with the doctors at Shriner’s in March; I try not to think the worst, but the fear creeps in nonetheless. It’s a monster I constantly have to control and tame. Maybe that’s why I’ve been writing so many horror stories lately–it’s a way for me to channel the fear that invades my life now and then.

While working on this post, I came across a quote about fear on Kristen Lamb’s Blog. She was referring to fear in your writing life, but it works just as well for any kind of fear (she quotes Paul Atreides in Dune, by Frank Herbert):

I must not fear. Fear is the mind-killer. Fear is the little death that brings total annihilation. I will face my fear. I will permit it to pass over me and through me. And when it has gone past I will turn the inner eye to see its path. Where the fear has gone there will be nothing. Only I will remain. 

Lilly will, too. And that’s the most important thing.

The Summer of Poo

I’m not talking about Pooh Bear, here.

Pooh

I’m talking about-you guessed it-poop. When you have a child with Spina Bifida, you can’t escape it. Most parents deal with dirty diapers until the age of 2,3, or 4 at the latest, and are glad to be done with them.

Lilly is seven and a half, and we’re still dealing with them.

But not to the extent we have in the past. It’s getting better, and the reason is because of the new bowel program we’ve worked so hard on this summer. It’s called a cone enema, and I knew it was our last hope of keeping her clean.

Summers were always a frustrating time with the issue. Lilly loves to swim at Laurel Lake every summer, but of course we need to put swimming diapers on her. The largest size still fits her, but just barely. But it never failed that she’d have a fairly “poopy” day on these days. Every hour or so, I’d have to change her inside the hot, closed up sun shelter we had on the beach, or troop her up two flights of stairs to the dirty, spider-infested changing room and lay her on a bench to clean her up. I’d haul her huge bag of diapers, catheters, wipes, lubricant, diaper cream, rubber gloves, and sanitizer with me and spread it all out. Then I’d proceed to peel off the wet, dirty swimming diaper, careful not to spill out any solid contents (though the water would mostly swish it about and reduce it to the consistency of the sand that also made its way in there). And I’d wipe and wipe and wipe sand and poo away until the sweat dripped off my face. Several times in 5 or 6 hours I’d do this, even this past summer when we were still getting the hang of the cone enema.

The procedure itself is fairly simple; it’s the variables that make it a long process of trial and error. Every night or every other night? Plain water, or additives? If additives, baby soap, glycerin, castile soap, or something else? How much water, and how much additive? How long to keep it in? How long to keep her on the toilet? Keep giving Miralax orally while on the program, or can we dispense with it?

After eight weeks, I think we have it almost where we need it to be. She’s staying clean for most of the day, and may have an accident later in the day, or maybe not. Last Wednesday was her first day of second grade, and my goal was to have her clean at least socially, while she was at school. I still put a diaper on her, just in case, but if things go well, we might be able to put her in her Frozen “big girl underwear” we bought last week. Hurray!

frozen undies

It was a lot of hard work, and still is-every night we have to carve out an hour from start to finish for the procedure. We may have to miss out on some evening events (school or otherwise) because of that hour. But I wouldn’t give it up for the world, if it means some kind of  normalcy for Lilly. So far she’s been a trooper, with nary a complaint from her, even when it causes some discomfort. I think it helps that she can play games on her ipad while she sits on the potty. I won’t grudge her that playtime; she deserves it.