living with cerebral palsy

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As we made a list of special needs we'd be open to in adoption, CP - a group of neurological disorders that affect movement - wasn't on the list. We hadn't completely ruled it out, but we certainly hadn't ruled it in either.

But now? We can't imagine our lives without Zoe, and our love for her emboldens us to take on whatever else comes with her diagnosis.

For us, here's what that means:

  • MRIs to check brain development, particularly in the areas affected by PVL, her particular kind of brain damage. 
  • physical therapy twice a week. 
  • occupational therapy once a week. 
  • speech therapy once a week. 
  • check-ups with the neurologist and the physiatrist. 
  • fittings with the orthotist for leg braces and wrist splits. 
  • meetings with the early intervention program, which are now moving toward meetings with the school system as she nears age 3.
  • Botox injections (and possibly oral meds or surgeries in the future)

It means all that, but it also means:



We still don't know what the future holds for Zoe: if she'll ever live independently. if she'll continue to keep up with her peers in cognitive ability. if she'll walk. if she'll maim other children by plowing them down with her gait trainer.

you know, things like that.

But, if we're honest about our helplessness and God's sovereignty, we have to admit that we don't know what the future holds for Jocelyn or Patience or Philip or Robbie or Patricia either.

It might sound childish, but we still believe the words of the song we learned as kids. We trust that He holds the whole world - including our whole family and Zoe's whole brain, just as he shaped it - in His hands.

For that, we are thankful.


Zoe's getting botox {and not just because she's a diva}

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Botox, most well-known for references in Hollywood and pop culture, isn't just for wrinkles.


Little girls who shouldn't be left alone with a Nutella sandwich can benefit too.

In the same way that Botox relaxes the skin to reduce wrinkles, when injected into muscles, it can relax the tension that's common in cerebral palsy to help Zoe's movement. In cerebral palsy, muscle issues are caused by injury to or the absence of certain parts of the brain affecting motor development; as a result, the brain sends the wrong signals to muscles - in Zoe's case, making them a lot tighter than they should be, so that she has to fight against muscle stiffness for every little movement. Botox blocks the chemical signals between the brain and those muscle groups, so the screwy signals don't get received by the muscles.

In other words, her brain will keep saying, "Tighten up!" and her muscles will put their fingers in their ears and shout, "LALALALALALA! I CAN'T HEAR YOU!" 

For our girl, it'll be the hamstrings and forearms this go-round, and we're waiting to hear back about the scheduling of her injections. Baclofen, an oral med designed to relax muscles, is on the table too, but we're thinking that a more focused - that is, muscle-group specific - treatment is best right now, given that her tightness is severe in a few specific places and more mild everywhere else.

Plus, she is quite a diva, so Botox seems fitting in other ways too, right?

{I wonder if they'll spare some for me...}

five things we should all know about FASD #preventFASD

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I broke the news last week that one of our kiddos has been affected by alcohol exposure while in her first mother's womb. Those words are hard to type, but when the Minnesota Organization on Fetal Alcohol Syndrome (MOFAS) asked me to partner with them and Brandfluential in a sponsored campaign to raise awareness about fetal alcohol syndrome, I prayerfully decided this was the right time and right partnership.

I haven't had any alcohol for nearly a decade, for a variety of personal reasons. Most people assume I'm a complete teetotaler. That's not the case. If I'm honest, I'm a bit jealous of those who can enjoy the occasional glass of wine or martini.

So feel free to have one for me. Please. 

That is, unless you're pregnant or could be pregnant, which leads me to the real purpose of this post...

I wanted to start by disclosing my decade of personal prohibition as a disclaimer of sorts. For me, having a beer or other adult beverage while pregnant wasn't a consideration: not because I was pregnant, but because I simply didn't drink while not pregnant at that time.

My initial interest in fetal alcohol syndrome disorders (FASD) came from two places: (1) my experience as a special education teacher, with some students for whom prenatal alcohol exposure was a factor in their disabilities, and (2) my hope to adopt someday, as I learned that FASD rates were higher among adopted children than other children, with many diagnoses unknown before adoption.

Now, my interest is even more personal, as I love a child who was exposed to alcohol before she took her first breath.

The first of three webinars I'm promoting with MOFAS focused on the basics of FASD. Much of the info was new to me, while some was a review. Dr. Jeff Wozniak of the University of Minnesota drew from extensive knowledge, as a researcher, as a practioner, and as an instructor. He directs the Child and Adolescent Neuropsychology Clinic at the university, where he sees patients with a variety of neurodevelopmental, neurological, and psychiatric conditions, and he is the co-director of the University’s Fetal Alcohol Spectrum Disorders Program. Recently, he has extended his work in FASD to include treatment studies and is currently the co-principal investigator of a unique clinical trial targeting brain development in young children with developmental delays from prenatal exposure to alcohol.

In other words, if anyone is an expert in this field, it's Dr. Wozniak.

I know all of you aren't as nerdy about neurology as I've become, so I'll try to avoid too much medical jargon in this list of takeways. (If you want it all in full, the first webinar will be re-broadcast on February 25, and you can register and find more info here.)

five things we all should know about FASD

  1. It's 100% preventable. If women of childbearing age avoided alcohol whenever they are sexually active and not using birth control, then no child would experience the neurological effects that can come with prenatal exposure to alcohol on the developing brain. Why should we avoid alcohol before it's time to pee on a stick? Because...
  2. The most devastating neurological effects of FASD can occur in early pregnancy. Given that women don't know that they're pregnant for a couple weeks or even a couple months, depending on the woman, damage can occur by drinking before knowing about the little one growing inside of the womb.
  3. FASD is under-diagnosed. In recent decades, clinical diagnoses of other neurological disorders - ADHD, learning disabilities, sensory processing disorders, mental illness, and so on - have been on the rise. During that same period, women's alcohol consumption has increased, especially binge drinking. I'm not saying all of those issues are always related to prenatal alcohol exposure - of course not! But leading researchers in the field of FASD think that it may be the unrecognized underlying cause for some other disabilities. 
  4. No amount is proven safe, but binge drinking is the riskiest. Binge drinking, though, is defined as four alcoholic beverages over the course of two hours. And the amounts matter: one glass of wine in a balloon wine glass is actually two alcoholic beverages in quantity. One margarita at most restaurants contains three or four drinks worth of alcohol. I tend to think of binge drinking as what I did with red Solo cups of stuff we called PJ at frat parties back in college. (Don't judge.) But the amount I sipped at book club meetings in my first year of teaching would have qualified too. 
  5. As new research emerges, we can be safer for the coming generations. In other words, don't feel guilty if you didn't abstain from alcohol in previous pregnancies. My parents smoked cigarettes, including around us kids, as I grew up. (That said, I remember being so proud of mom when she kicked the habit while I was in upper elementary school!) We wouldn't do that now because we know it's not good for kids, but I don't expect my parents to feel guilty about the choices they made before research proved them unwise. 
So what do we do with this information?

First, I think doctors need to be having frank conversations about alcohol with all their female patients who are of child-bearing age.


Second, when we know better, we can do better.


~+~
The webinar series has one more event this coming Thursday. It is FREE, but it does require registration. This coming week's topic is the one I'm most excited about: Family Matters: Strategies for Successful Outcomes. I'll write follow-up posts for each - with my post for the second webinar coming next week - but if the last webinar is anything like the first two, it'll be way more helpful info than I can fit in one post. 

(Also, CEUs are available for educators, social workers, addiction professionals, and psychologists, so check that out if you're in one of those fields.)

HIV FAQ: Is there a cure yet? I heard there was.

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I expected this question would come up, as we hear it in person about once a month or so:
I've heard they have discovered a cure for the HIV virus, is this true?
No.

But I do think it's getting close. Next week when I answer questions about dating and sex, I hope they'll be answers that I'll never have to actually use. I hope a cure is found because our child is old enough to be considering what high school and college are like with HIV added to the mix.

That said, we adopted with the expectation that HIV would be a lifelong reality for our child.

But how awesome would it be if it weren't!

A Google news search for "cure for HIV" came up with nearly 9,000 results today, dozens of which are from the past week. In other words, those of you asking this question aren't the only ones talking about a cure for HIV. Unlike the other diagnoses represented in our family, HIV has a lot of visibility.

Usually, visibility = research dollars, so that's a good thing.

The two cases most people are referring to when they say they've heard about a cure are the one about the Mississippi baby and the one about the blood stem cell transplant patient known as the Berlin patient. From what I understand about the Mississippi case, the child was treated aggressively and immediately upon childbirth, and no other cases have been attempted; even if it could be repeated, it would only be a cure that would work for newborns and not for older patients. As for the Berlin patient's case, it's not been able to be replicated, so while it seems that the guy's HIV is gone, it's not a cure that has been able to be applied to other patients.

Or sometimes people are talking about kids like our friends' daughter. Courtney and Andrew adopted her, knowing she tested positive for HIV. Now she doesn't. Is she cured? No. She tested positive initially because her mother's HIV antibodies were still in her system. So it's not accurate to say she was cured (though we're rejoicing that she isn't HIV+!). It's more accurate to say that her initial testing gave a false positive because of her mother's HIV.

I am optimistic for a cure. It just hasn't been found yet.

But, whether it comes in our child's lifetime or not, we're thankful for the blessing of parenting each of our darlings.

i'm sorry if my kids teach yours about hunger, abuse, poverty, disease, and other ills

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A friend and I bantered on Facebook earlier today and ended up discussing the limitations on understanding someone's tone via the Internet. With that lesson in mind, I want to be up front about the tone of this post: it isn't sarcastic. It's sorrowful. And truly apologetic. 

As I pray for each of my children, in light of their backgrounds and our trip to Uganda, I want you to know that I pray for your children too. 

Why?

Because I grieve over the innocence Jocelyn and Robbie have lost as they hear the before-adoption stories from their siblings. And I grieve over the innocence your children might lose in the same way.

Is it worth it? Yes.

Is it good for our children to learn about suffering? Yes.

Is it helpful for us to guide them through it so they learn to suffer well? Yes.

Is this the fun stuff of parenting? No. No, it's not.

I don't want to have hard lessons taught to your children or my first two children by our newest children. I know you don't want that either. For that, I am sorry.

But as I apologize for the stories of hard things that your children might hear, I grieve even more over the experience of hard things for my children who lived it firsthand.

When our oldest started showing extreme anxiety when we got home from Uganda, it was because she had difficulty reconciling a return to our comfortable lives here with the extreme poverty she witnessed there. 

When another starts obsessively cleaning because she thinks we might abandon her if she isn't good enough, it's because she knows what abandonment feels like.  

When one of ours hides toys and snacks in a backpack at the foot of his bed, it's because this child knows what it's like to be without food or trinkets.

When our wild boy asks if we're going to start beating them when they misbehave, it's a response to the stories of beatings he heard about or saw at the orphanage.

When one dear one got extra clingy this week when I took to bed with a nasty cold, it's because she knows what it's like for her mother not to ever leave her sick bed.

When our baby girl spikes a fever with her cold and we have to go to the doctor immediately, it's because the malaria she had while in Uganda could have lingered and reactivated and we have to get a quick blood test to make sure it hadn't. 

Oh, my heart. Sometimes it's too much for this mama to bear.

my children know what it's like to watch other children scavenge through the trash for food
they can't unknow that, as much as I'd like, and neither can I

So please forgive us if our children teach yours about hunger, abuse, poverty, disease, and other ills. If that does happen, please pray for our children too as you pray for yours to heal.

And know that I've already been bathing yours in prayer, knowing that I couldn't protect my dear ones from the harsh realities of this world and I can't protect yours either.

Sweet Jesus, come soon.