Monday, June 16, 2014

Thriving - of growing a garden and growing a child

Exploring sand
J is happy. He loves his sisters, books, balls and sandboxes. He's growing taller and looks more like a toddler. He is getting healthy after a round of a tummy bug and has snapped back into being his normal toddler self.

But his energy level is and always has been low. He used to quake when he woke up from low blood sugar. He has finally -- after eight months of trying -- gained a pound. But one pound in eight months isn't so great for a one year old. Sometimes he'll be crawling and his arms will buckle beneath him. He's weak.

They say this is "failure to thrive," and I did and do hate that term. But maybe they're right.

I had a garden last year. It was on clay, alkaline soil. I tried to plant blueberries, and if you have read this blog from the beginning, you remember what a disaster that was. No matter what I would do, my garden would not thrive.

Check out my garden this year.

I've never been able to grow squash. My kale has always been wimpy. Tomatoes and peas worked, but barely. And I've never attempted kohlrabi, knowing it wouldn't work in my shady, clay soil.

So what changed?

I moved. I got a new garden, one with sandy-to-loamy soil. One where plants can thrive and the Ph levels are perfect (or easily amendable).

And suddenly plants that would die or barely hang on before started growing like crazy.  I love my new garden.

Jonathan got a new early intervention teacher. She met him for the first time last week. Her sage advice to me? We've got to get him gaining weight. If he doesn't have the energy level to sustain a normal toddler lifestyle, he'll continue to fall behind on gross motor skills and overall development.

No, duh.

Least inspirational speech ever.

He loves to eat.
I wish I could get new, better soil for Jonathan. I wish there were a way that he would suddenly be able to start to thrive, to grow, to gain weight.  I want answers because I want him to become all that he can be.

I learned early on that planting peppers outside before the last frost was a recipe for short, small, probably dead pepper plants. Wait until it's warmer, until they can grow well.  Otherwise your crop will be decimated.

Jonathan didn't wait until it was time. We're so glad he hung on, but I had hoped that by now the
"thriving" part of toddlerhood would have started.

So, I'm praying hard for a diagnosis. We've checked most everything. We've spent the last eight months searching for answers and we've nearly reached the end of the line. Our last hope (before we diagnose him with "wimpy white boy syndrome" - in other words, "sorry, lady, we can't do anything for your son") is acidosis.  That is to say, we hope all of this -- his fast breathing, his failure to thrive, his low energy level, chronic constipation, and the presence of kidney stones a year ago -- we hope all of this is because his Ph levels are off. If he has renal tubular acidosis, everything that is confusing about J (other than his low zinc levels) could be explained by this. If this is it, it means his kidneys aren't ridding the body of acid like they should, and it's throwing his system for a loop.

And like my new soil, acidosis is easily amended. He'd take a supplement. It would help change the ph of his body. That's it. And then he'd start to thrive. I nearly cry thinking about it. How amazing, how wonderful. If this were it?  If this were it, it would be an answer to prayer.

The nephrologist has run one set of tests. It came back confusing and inconclusive because he was still battling a tummy bug and was dehydrated.  So we're running another set of tests in a week.

Please, please be RTA.

Otherwise, we'll just be glad you hung on, and we won't expect you to produce as much as your other pepper peers.

P.S. As J's dad is quick to point out, there is one JAM oddity that cannot be explained by acidosis. That is, his PURE AWESOMENESS. Seriously, this kid is cute!

Tuesday, June 10, 2014

"The Gift of Presence"

Recently this article was published. I go deep here, hit the spiritual elements of our journey, and land on one solid truth: sometimes what we need more than anything else is someone to walk with us in pain and joy, in hurt and triumph.  I learned this through three simple words, spoken in to my soul. I was still pregnant, crying out to God, and more than anything else I wanted to hear, "this baby will live" or "don't worry." But I didn't hear that. Instead, my soul's ears heard a steadying and merciful, "I am here."

If you want to read more, the article, "The Gift of Presence" is here (published by Banner magazine).

You can also read more about elements of the story as published in the article in these posts from this blog:

As I read through this article today my first thought was "ugh! a typo!"
And then I got feedback from friends, positive at that, and I thought perhaps I should re-read it.  A second reading reminded me just how blessed and surrounded we were. We were exhausted. I soaked up every ounce of those blessings and rang them out on Jonathan and then greedily looked for more blessings to soak in. Steve plodded on, focusing on the next step and acting as a strong pole for me to lean on when I crumbled, and J -- JAM knew no different. This is how life had always been. We needed and coveted your prayers and gifts, and sometimes we were sure we were completely burned out, but somehow we were sustained. Thank you. Thank you so much. Two years out almost, and it is still hard to remember, hard to believe how our world so quickly changed. But in it all, we were supported. Thanks.

Friday, June 6, 2014

Happy Birthday Virginia Apgar.

If I could have tea with anyone from the 20th century, I'd pick Virginia Apgar. Analytical and compassionate, she is my hero.

I discovered Virginia Apgar when I was sitting in on a medically themed Adventures in Ideas seminar at the University of North Carolina seven or eight years ago. In so many ways she paved the foundation for neonatal and maternal fetal medicine practices today. And she did so in an era when female medical doctors were uncommon. I wish I'd known her.

In many ways, thanks to her work, my son lives.

She saved babies with numbers.  For more on her work and my absolute adoration for her, see this recent post on Hand to Hold's blog.

Happy Birthday, Virginia Apgar. Born 105 years ago tomorrow.

Thursday, June 5, 2014

No GI answers yet - but glad for summer

Jonathan is now back to his October weight. That's a loss of half a pound more. He's been pretty sick (including temps so high he ended up in the ER last weekend) so this explains some of it, but we were hoping for answers now.  No weight gain in eight months is scary in a one year old.

JAM continues to grow taller and looks more and more like a little boy every day, but he is still stuck at an easy-to-toss 15 to 16 pounds. It makes Steve's nightly romp with the kids easy and fun, but it has cause me to gain worry weight --the weight that he should have gained by now plus some.  A new gym membership and new FANTASTIC running group in town should help with both the worry and the weight on my end, but neither get to the root of JAM's sticky problems.

We had hoped that the procedure with GI would answer all our questions. It didn't. No poor absorption issues spotted. Nothing.

So we are back to confused.

In other news, he has perfected his hand clapping and has stood for up to five seconds on his own. He has even taken his first step - although it was more like a graceful fall than a step. He might just be walking by two!

And finally, I ended my day job last week. This led to a slight crisis of identity. This week I woke up to a dream where I'd just graduated from college but had no job and no idea what I wanted to do with my future. I hadn't even applied to grad school, but I thought to myself that, since I couldn't figure out what else to do with my life, maybe that's what I should be doing.

Thankfully the morning light reminded me that my job was set before me, and it was a good and worthwhile position. I even got a training manual from his new speech therapist in our new town later that same morning. She says that since he's entering the program late, I need to read chapters one through six by next Wednesday. And just like that, I'm back to school! Training how to be an advocate and teacher for JAM.

By the way, my office view couldn't be better. I get to be outside whenever the weather allows, and I can work from a sunny window inside. Plus, there's no dress code, and my solo client is one of the easiest going, cutest people in the world.  I'm blessed.  I just hope I can also bless him.

Wednesday, June 4, 2014

Lifelong 'disability' - PVL

This is a hard post to write, so like most hard posts, I've put it off for a good two or three weeks, mulling over whether or not I wanted to make this public and how. But sometimes it's the hardest things that are most important to put out there.

Last month a brain scan showed that our son would not outgrow his prematurity by age two. My response surprised me. We were not shocked. We took it the same way we'd take hearing he had an ear infection or strep. Perhaps because we realized that we already knew, and he has been receiving therapy for this for over a year without a name in hand. A full week later the implications set in, the finality of it all, and it took me another week to process this fully. In the end, though, my stomach has settled and my son is exactly the same person he was before the diagnosis.

To be fair, for the most part, the news came as a blessing. The MRI of his brain showed he did not have hydrocephalus. His ventricles are stable, not growing. He won't need brain surgery for a shunt. The neurosurgeon renamed his brain as exhibiting "mild ventriculomegaly," a close cousin to hydrocephalus, a term which (like "mild hydrocephalus") also means "mildly large ventricles." Doctors seem to give fancy terms for things that could be said in normal ways. Lovely. He suggested a reason for the enlarged ventricles, which was confirmed when we met with the neurologist a few days later.

The neurologist confirmed the neurosurgeon's suspicions and gave Jonathan a new sticker for his charts. His ventriculomegaly is caused by periventricular leukomalacia (PVL). DON'T look it up.  If you ran across this blog looking for info on PVL, then go ahead and look it up. But everyone else, here's what it means for JAM:

Nothing much new. Actually, yes, really. I'm not being sarcastic. It's not degenerative, it's not going to change for the worse over time, and we've already seen the signs of it and know he can overcome it. We just didn't know that it had a term or that we could see a picture of it in his brain.

Since that's not a very satisfactory answer, here's a better explanation. His brain MRI shows that some of his white matter (a part of the central nervous system, a neurotransmitter of sorts) is gone, making room for a larger than usual area for the spinal fluid (that's the ventricles - it's where the spinal fluid hangs out). Perhaps the white matter weakened and disappeared as a result of blood oxygen levels going low (desaturations). That happened a lot in his early life. Or perhaps the PVL is a result of the same intrauterine infection that caused him to be born 17 weeks early. Either way, the grey matter, the thinking part, is unchanged. His central processing unit is still intact.

Rather than raising questions, this explains everything we've observed for over a year. The best part is that now that we know more about the "why" for what we've seen, we can better address his particular issues.

Jonathan is a strong kid who shows none of the classic signs of cerebral palsy** -- no low muscle tone or spasticity. And yet he has had issues with motor development. Sometimes he did fine. He figured out a pincer grasp really early on,  he could feed himself cheerios, and he taught himself how to point and grab his feet and all sorts of things. That said, for some things he can't just do skills that other kids just "get." We had to explicitly teach him how to bend, how to catch himself, how to move his legs to walk and crawl, how to clap and hold a bottle.  For some of these things, we could see he was strong enough and that he wanted to do these things long before he could do them. The motor planning just wasn't there. He couldn't watch-and-repeat. He had to have us retrain his brain.

Think of it like learning to ride a bike or whistle. People show you and tell you how to do it, and yet you can't just do it. It takes practice. We show the brain what we want it to do until one day it just comes. A little more practice and it is perfected. Once the skill is perfected, it stopped taking so much thought. We can just do it. The same is true with JAM.

I've been telling friends for months about how I learned to vibrato or perform complex fingerings on my viola -- about how I knew how to do it, I was strong enough to do it, and yet getting the message from my brain to my fingers took so-much-effort. And then one day, it just all started to click, and after months and months of practice, it started coming more easily. A switch had turned on in my brain. Apparently that switch is in the white brain matter. Within another week, the task could be done without much thought at all. We all rewire. JAM just has to do this for more skills.

In a nut shell, this is what PVL means for Jonathan. It's not every skill that's affected, but it effects some skills unexpectedly, and as he grows and learns new skills, PVL will likely continue to trip him up. He couldn't clap his hands until just last month, at 22 months old. He could pat his legs, but he couldn't translate that to clapping until we worked with him on it for a solid one to two weeks.

Now, to the post title. This new diagnosis means J won't outgrow his prematurity by next month. It means he has a life-long disability as a result of his prematurity. Sort of. Let me explain.

We made a new friend a week before the diagnosis. Her elementary school aged child also has PVL. His response to J's diagnosis echoed our response, "That's so.. AWES... ... I mean, that's really sad."  No, little boy, that IS so awesome. We are not alone. In fact, right in front of us is a thriving boy who is showing us life down the road. His parents call PVL a hidden disability. He still gets help for his PVL, still has some therapy, but you don't know when you meet him that there's anything different about the way his brain works. His parents have no doubt that he will be able to do nearly anything he sets his mind to - it just may take a little more effort than the average person.

All in all, this is fantastic news. No brain surgery needed. We will just work hard,  and we will overcome. This is not a disability, this is him daily proving his ability.

Here's a song that JAM jammed out to today (he is quite a good dancer). It echos my thoughts on all this.


**Side note on the CP comment above: Cerebral palsy often comes with PVL, the two are not mutually exclusive. A child with PVL is at higher risk for both CP and seizures. My comments here are not meant to confuse. It just appears at this point that J's issues are nearly all PVL related, and not CP related. We doubt he will be diagnosed with CP, but he is still too young to know for sure.