on the horizon (maybe) for Zoe

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Update: On June 27, 2014, we got word that Zoe is indeed a good candidate for this surgery, so we'll be scheduling it soon and moving forward. Even though we have more answers now than when I wrote this, everything in this post still expresses our heart for our girl...

 I need to start by making one fact perfectly clear: Zoe is loved exactly as she is, and nothing she might be able or unable to do in the future will change that.

That said, there's this surgery called selective dorsal rhizotomy (SDR) that could be a game changer for her if she's a good candidate. And as I write this, her packet of medical information is on the desk of some folks in St. Louis who will are responsible for the "if she's a good candidate" decision.

Cue the nerves.

I wasn't planning to write this post until we had an answer, but given that most people who have asked about Zoe lately have been treated to way more details about this than they were asking for, I figure it's time to put this out there.

Before I dive into the surgical details, let's start with the obvious question:
Why St. Louis when we live in North Carolina?

A few pediatric neurosurgeons in our state do this procedure, but none specialize in it and none have many years of experience with SDR, based on my research. SDR is a big deal, and I want a specialist and not just a hobbyist if my daughter is on the other side of their scalpel. The surgical team in St. Louis is world renowned: This is what they do, and they do it well.

Furthermore, most SDR surgeons wait until age 5 or older for the surgery, whereas the St. Louis team prefers for patients to be young, around age 2 to 4. At 2 years and 8 months old, Zoe's in the ideal range. They do plenty of SDRs on older, even adult, patients but they've found that orthopedic complications from cerebral palsy can be reduced if the procedure is done earlier in a child's development.

Finally, the St. Louis team is picky. They tell plenty of families, "No, your child is not the right fit for this." They do evaluate children without seeing them in person, but they require MRIs, hip and spine x-rays, videos of a couple dozen physical tasks from multiple angles, a physical therapist's evaluation, and a few extra bits of paperwork.

In other words, a lot of documentation... unless you've completed two international adoptions in the past two years, in which case this paperwork is NOTHING compared to the reams you've completed and had notarized, apostilled, translated, and shipped to the other side of the world.

Oh, and our insurance will cover it, even though it's not in our state, because (a) a doctor in the BCBS of NC network referred us and (b) the team in St. Louis is a BCBS provider for a different geographical area. We'll cover costs for travel, lodging, and our portion of post-surgery therapies (as physical therapy is limited in most insurance plans, including ours), but the bulk of the expenses will be covered.

So what's SDR?
First, let's define cerebral palsy. In CP, brain damage or under-development occurs in the womb or not long after birth. These abnormalities makes their brains communicate the wrong messages to muscle groups. For Zoe and many other kids, the result is spasticity: tight group of muscles that they have to fight against to make the movements the rest of us take for granted.

Remember the last time you had a charlie horse? You know, those annoying muscle cramps where your calf or another muscle gets really tight out of nowhere and it can hurt really bad? Well, that's life for Zoe, except she's usually just a little uncomfortable by her degree of tightness rather than being in that much pain.

In SDR, a patient's back is opened up to reveal the spinal cord, nerves are tested to determine which ones are contributing to muscle spasticity, and the ones that are the most severely causing spasticity are severed permanently. Here's all the details, if you're into that sort of thing.

Now you're grasping why we don't want just any doctor to do this for our girl...

In the right hands, this sort of surgery can dramatically improve the mobility potential for people like Zoe with severe spasticity. Sitting on her own without support, using her walker more than her wheelchair, becoming more independent in general... all of those are realistic outcomes for her if Zoe is able to have SDR.

So, for now, we wait to find out if she's a good candidate for it. 

If she is, we schedule it and figure out how we'll manage me and Zoe going to St. Louis for a month for the surgery, in-patient recovery, and out-patient rehab program, all while Lee and the other five probably stay put here in Raleigh.

Waiting?

I don't do that well.

I think that might be why God keeps giving me more and more opportunities to practice.

If the answer is yes, we'll praise God and figure out the logistics of what's next.

If the answer is no, we'll praise God and figure out the logistics of what's next.

Because whether this surgery is a good option for her or not, we love our Zoe girl no matter what.


Yes, that is her big brother helping her eat with a spoon at a family tea party, and yes, the picture is slightly blurry because I couldn't hold my hands steady as I melted at the preciousness of the moment. LOVE.

our summer schedule for schooling and sanity

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Yep, school just ended last week, but my kids aren't getting a break.

Go ahead and call me cruel if you want. I don't care.

 Jocelyn is right around grade level for reading and ahead in math, while Patience is behind in everything considering she only came to this country in November. To keep forward momentum for the girls as they head toward 2nd grade and to prepare the boys for kindergarten, we needed a plan.

 Structure? Not my strong suit.

Good intentions? I'm all over those... while consistently inconsistent on my follow through.

So I took a note from a viral blog post I saw on Facebook, something about giving kids unlimited screen time after they've finished a list of tasks for the day. Cue our list...


Because our printer likes to pick her own colors, the actual page - which I printed and laminated and hung with 3M foam squares on the big girls' bunk beds - is in different colors, but I like the look.


My goals were to keep the girls reading and writing and working on math, while getting them to engage their siblings in reading, basic math, and phonemic awareness. I posted it on the last day of school and told the girls we would start the next day, so naturally they wanted to start that day.

Here's hoping they follow the plan this well every day!





Meanwhile, I just have to hold them accountable and pick out daily math pages for them to complete.

Low effort: that's my style.

 I've already written about the magnets and zones (if you'd prefer not to click through, it's our chore system), so I think the only piece requiring explanation is the boxes. Most are made by a company called Lauri, and they're ready-made manipulatives for building early math and literacy. I think these pictures will show the finer details, but feel free to comment if you have any questions.






For Jocelyn, this will be a time for her to teach the brother she's working with that day. For Patience, she and her bro partner will be learning together for some of these.

Jocelyn and Patience are also reviewing spelling from 1st grade, using the 45 spelling lists they had last year; that happens during afternoon rest time (aka nap time for the little girls). In particular, we're focusing on vowel sounds for Patience, as those are the most challenging for English language learners, and going through three lists a week. I have a few workbooks we're also using from time to time, like cursive for Jocelyn and handwriting practice for the boys and reading comprehension for Patience.

Will this work? Eh, I don't know.

But it's a good plan to start with, and - with the exception of the week our oldest four will spend in day camp at New Life Camp - it'll work no matter what else is going on that week, even through VBS and a roadtrip to see some Alabama friends. Today marks our fifth day, given that the girls wanted to start on the last day of school and that I decided not to stop them when they decided the rules applied on weekends too (which wasn't my plan, but shh! don't tell them now), and all is going quite well.

Here's hoping for continued summer success! 
(And a lot of fun too... I'm not a total vacation killjoy, after all.)

HIV FAQ: Why did I do this series of posts?

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For the final post in this series, I want to thank y'all and leave the door open for you...
I don't have any specific questions, but acknowledge my ignorance when it comes to HIV & am looking forward to reading your blogs. Thanks for educating me!
This series might be over, but I want to leave the door open. Please, keep the questions coming. Please, know that we are approachable. Please, understand that we will only be hurt or offended if you come to us with rejection before you've ever asked a single question about HIV.

One of my favorite moments in this journey was when a friend at church pulled me aside before Bible study, concerned about her daughter's busted lip. She didn't know which of our children has HIV, and she knew one of our kids was in the same class as hers. She told me about the situation and then said, "So I can't put a bandaid or anything on it, because it's her lip, but it's a wound, so is there anything I need to know to keep her safe from HIV with an open wound?"

I love so many things about this.

 First, I love that she was comfortable talking to me about it. Second, I love the opportunity it gave me to explain that childhood boo-boos have never transmitted HIV. And third, we hugged and moved on, like two moms who were discussing any typical childhood concern for their kids.

I bet she doesn't even know that I cried later, so grateful for such a sweet and positive encounter.

We want to keep educating, so please, please, please let us do that.

Many of you know that the Today show featured an online article on HIV discrimination featuring our family. Here's an update: those friends have read what we've shared and done their own research, and now? They're not afraid of HIV anymore. We're moving toward that happy ending that we hoped for.

God is truth, and God is love. And? "There is no fear in love, but perfect love casts out fear." (1 John 4:18)

That's why we lovingly share truth about HIV.

HIV FAQ: What about when your child is old enough for dating and sex?

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Oh, goodness. This is a topic I think about a lot, but I'm nearly breaking out in hives at the thought of blogging about it, because (a) SEX! and (b) MY CHILDREN ARE ALL AGE SEVEN AND YOUNGER, FOR THE LOVE!

But these questions are totally valid and might be helpful to some readers, so here goes...
This is in the way future, but how will you handle discussions about sex? What will be the same and what will be different?  
What do you plan to teach your child about dating relationships? Like, when should they disclose? Up front or after some time?
How will you address HIV as your child grows and possibly becomes sexually active? That can also be an age of children rebelling against parental advice. My child is HIV+, but she is an adult. I know you know her story: nogoingback-thereisonlyforward.blogspot.com Please feel free to share her blog with your readers. Now going into our third year living with HIV, we barely think of it after the horror of our first reaction to hearing that diagnosis. Life is just normal now.  
How do you educate the HIV+ child about protecting others from infection? (ie informing a school nurse or friend's parent if they skin their knee and need bandaging)  
First, to answer that last question, HIV isn't transmitted via skinned knees, so you might want to read this post: How do we keep other kids from catching HIV? But I included the question because issues of dating and sex are all about protecting others from infection.

Honestly, I can't answer most of these questions. Not because I haven't thought about it, because I have. OH, HAVE I! But I know from friends further along in this parenting journey that "the talk" with each child is different, depending on age, personality, and maturity.

When it comes to the stage in relationship that disclosure should happen, that's not a decision we'll make for our child. We'll talk about it, but that's a personal decision and not one Mom or Dad can make.

As with any parenting stage, we'll draw from resources available to us, including the AMAZING folks we have in Duke's pediatric infectious disease team. One is a social worker whose job includes helping us navigate these challenging topics. I expect that Rachel and I will have many conversations about sex and HIV in the future.

Finally, I'm optimistic that more and more medical advances will be made before our child is ready to be sexually active. That's the biggest reason why I can't answer how we'll talk about it then, because I simply don't know what the facts will be then. Already in the six months since we've been home from Uganda, new advances include:

All of those advancements were reported in 2014. We are hopeful that this trend will continue so that, perhaps, our dating and sex talks with our child who has HIV will be no different because of how far modern medicine has brought us by then. 

HIV FAQ: How do we explain HIV to our child who is positive and our other children?

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Onward...
Is your child aware they are HIV+?
How do you approach the topic of HIV with your child, especially as they get older?
I am not sure how old your child with HIV is but we are waiting to go to court to adopt [a child who is 15]. We have not talked to her yet about her illness and we are worried about that conversation. How she feels about it? Is she scared? Does she want to talk about it at all!! How did you do this? 
How do you plan to equip your positive child to face the world unashamed?  
Yes, my child is aware, as much as he/she can be at this age.

In Uganda, HIV was already a familiar term. Whenever we went to the doctor there, it was explicitly called "the HIV clinic" there. Our kids knew that HIV was the reason others in their family and community had died.

Did they understand what HIV was? No, not really. But no kid really can.

Early on, our biggest priority was explaining that the medication our child takes daily would lead to life. Our kids had the impression that HIV = death so we had to re-write that story for them to dispel fear.

As far as other conversations go, all six of our children are 7 and younger, so we talk about how one has booboos on the brain (cerebral palsy) that she needs therapies and other helps for and another has booboos in the blood that require daily medicine. In Uganda, HIV was talked about openly, so they had been exposed to the term, and the head of infectious disease at Duke (where we go) recommends talking about HIV from an early age and adding more details over time. For now, we talk about how the medicine keeps the booboos from making our child feel sick, and the booboos can't make anyone else sick unless they share blood or private parts.

When it comes to helping our child live unashamed, that's part of why we chose to disclose about HIV instead of keeping it a secret. I feel like it's hard - but not impossible - to tell a child, "this is nothing to be ashamed of, but don't dare tell anyone."

More than that, though, we teach all of our children that differences are important. Differences - in health or ability or appearance or anything else - make the world richer, and different. does. not. mean. less than. 

Finally, we are clear that HIV does not define us. Our child is SO MUCH MORE than HIV, and that's a lesson we'll be teaching and re-teaching all through our parenting journey.

And tomorrow? Sex and dating and HIV... oh my!