Normal

When you enter the world of special needs parenting, words like "normal" and "typical" take on a whole new, emotionally charged level of meaning.

You find yourself thinking and saying things like, "this is our new normal" and "she's not typically progressing, but she is making progress in her own time." You veer off the path you thought you were on and try to make your way on a less-traveled, perhaps bumpier, certainly less predictable path.

So when doctors tell you things like "your daughter's MRI is normal." You immediately filter it; it's a knee-jerk reaction, part defense mechanism, part acceptance. "You mean 'normal' for her, right?" Normal as compared to the chaos we thought we were gonna see. Surely not normal normal.

But yeah, against all expectations, Ella's MRI is indeed normal normal. No polymicrogyria in the right frontal lobe or anywhere else for that matter, and no other cortical displasia or various abnormalities either. As confirmed by a whole team of child neurologists even.

Normal.

I think I could get used to that.

So now, we are revisiting old metabolic labs and perhaps Dr. B will order additional ones. Because there may still be a cause we have not found yet, a cause we stopped looking for when polymicrogyria became Ella's label.

It's strange, new territory. We knew what we were facing before, and that knowledge had, unbeknownst to us, become somewhat of a safety net. Now that we don't have it, I feel less secure for the moment. If we never find a cause, I'm sure I'll adjust, in time, to this new normal. But for now, I'd rather know the name of the thing that makes my daughter have global delays and seize multiple times a month. And I will keep searching for it as long as it makes sense to do so.

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Ella Update

It's been a while since I wrote about Ella's progress. It's probably time to do so.

First of all, she's amazing. Seriously. I am blown away by how far she has come. There were days early on in the diagnosis of infantile spasms where it was unclear whether she would ever walk or talk, interact with us, be aware of her surroundings, and so on. She has accomplished all that and more in the two years since being diagnosed. Sometimes we just laugh when she does something new because it's just such a joy to see. Yes, she is still delayed but is making gains all the time. I told somebody the other day that Ella is not on "the" curve, but she's on her own curve and is still trending upward. I think I'll use that explanation from now on--it's the next best thing to observing her for yourself.

Being around Ella is one of the great joys of my life. I think I appreciate every little thing more because I take nothing for granted. That's not to say that she doesn't wear me out because sometimes she does, and the girl can throw a killer fit which is less than endearing, but on the whole there is much to smile about.

The spasms are a distant memory now. Ella passed the two-year mark of spasms-cessation a couple of weeks ago. Two years is a magical number in the epilepsy world (much like cancer). It makes me breathe a little easier to know that both her chronological age and the time since her last spasm combine to make return of the IS very unlikely.

But there's still work to be done. Since March, Ella has been having a new type of seizure, complex partials. Always within about ten minutes of waking, she gets a funny look on her face, breathes deeper and makes a distinct noise with it (what often tips me off when all else too subtle, i.e. when she's sitting in her carseat), often loses her balance if she's standing or sitting, and occasionally kicks one leg repetitively. The seizures only last for several moments, perhaps up to a minute or two, and when she comes out of them it takes her a little while to recover--which I define as being able to respond with words to my questions.

Over the course of the last four months, the frequency of these seizures has varied between daily to 15 days apart. We've tried increases in her doses of keppra, a second medication which failed (trileptal-- didn't seem to improve things and had undesirable side effects of extreme drowsiness and drooling), and we are now going to add lamictal as soon as the pharmacy gets everything approved with our insurance. We've also had her in for two more EEGs, the last of which was puzzling enough with it's change from abnormal spikes on the right (coinciding with her malformation) to showing spikes only on the left that it bought her a trip to Children's for another MRI, which she had on Thursday.

Here's the kicker: the scan this time around was normal. As in, no visible polymicrogyria in the right frontal lobe or anywhere else. Normal! I was expecting almost anything but that. Dr. B was puzzled too. It could mean any number of things. It could be that a miraculous healing has taken place, and we certainly make room for that; PMG (which was seen on her MRI at 5 months of age) doesn't just go away. But it could also mean that either the first scan or the most recent one was interpreted incorrectly. To that end, Dr. B is going to present both scans to the entire neuro team at Children's on Thursday to see if they can come to a consensus. We should know something by Friday, one way or the other. Ultimately, whether she has a malformed brain or not, SOMEthing is causing her to seize right now and it is most likely not just her past history of spasms. For that reason, I'd almost be more comfortable with the PMG still being there--as Hamlet put it best we'd "rather bear those ills we have than fly to others that we know not of."

To sum up: no spasms for two plus years, new seizures we're still trying to control, surprising MRI results awaiting further clarification, and amazing developmental progress.

So there ya go. And if you made it this far, here's a little photographic reward for you:

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Three Questions with Shaun Groves

Shaun Groves is one of my favorite Christian artists. He is a self-described "soft rock star," tongue fully in cheek; his songs are catchy without being kitchy, with deep and meaningful lyrics.

But more than his music, I like his mission: Shaun travels the country singing and storytelling for the ministry of Compassion International, casting vision in caring for the global poor through child sponsorship. He also travels outside the country a few times a year, leading groups of bloggers to tell the stories of the children at Compassion's child development centers. The purpose being to encourage people like you and me to give out of our excess to bless the less fortunate--that we might both benefit.

Yesterday, I had the opportunity to ask Shaun three questions about his latest music project.

Me: what is the meaning behind the title of your latest album, Third World Symphony?

Shaun: A lot of people don't like the term "third world." It relegates millions of people to second class status...or third class, I guess. For many more the words conjure up images of starving children, flies on their faces, buzzards overhead. And I suppose I was in both these groups once. But today, after years of spending time in the third world, or developing world, I don't think this way at all. The developing world is packed with wise, beautiful, hopeful, brothers and sisters. People who've taught me, challenged me, loved me, served me, helped me, God's used to change me. This album is an attempt to connect the first world and the third world for the betterment of both - to share the gifts of these third worlders with my listeners so that they too are changed and inspired ad more alive. And I hope, in the process, the label "third world" is redeemed and becomes something beautiful to many more too.


Me: What impact do you hope its release will have for the ministry of Compassion International & beyond?

Shaun: I hope that releasing new music will allow me more opportunities to speak and sing on behalf of Compassion's children. I'm in eighty cities each year and so if this album causes just ten more people to come to every city to hear me sing and speak, well then that means 800 more people every year who could go out into the world living more simply, more generously and gratefully - partnering with God through Compassion and countless other ministries to take the gospel in word and deed to those in need of it.


Me: From reading your blog, I understand you and your wife are in the process of international adoption. Has it changed how you view yourself and your relationship with the Father?

Shaun: It hasn't. That change happened for me in college when I worked at a children's home in Waco, Texas. It was there that Romans came alive to me - there's a Spirit in us that cries Abba father, it says. I taught these verses to the children at the home and it was one of the many times I felt I got more instruction from the lesson than my students. Teaching orphans that God is their father - walking away understanding for the first time a bit of what it means that I am an orphan adopted into the family of God. What a beautiful metaphor adoption is.

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As you can tell, Shaun is the real deal, and I'm excited to hear his new music.

If you want to hear it too, You can go here to get a preview.

And you can pre-order Third World Symphony, which releases August 30th, here.

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