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Wednesday, July 2, 2014

From Spinal Surgeries to Half Marathons.

The first thing I remember thinking was that we'd have to sell the house.

We'd been in it barely a year and were eyeballs deep in demolition, but with no offstreet parking and not one, but two sets of stairs to get to the front door (never mind the stairs inside to both the second level and the full basement) there was no way we would be able to stay very long.
**Everything else blurred out of focus -- wheelchairs, feeding tubes, hospital equipment. It all swirled around in my head and around the patient room as I looked to my nurse practitioner, trying to hold it all together. Just days after my wedding.

At five months pregnant, I had tested positive for the protein for spina bifida.

That was the first in a long line of hurdles that would pop up in the life of my son.

*****
It's hard to know, as a first time parent, when things aren't right with your child. Even when you know you need to look for things, that legitimately you do not have a normal infant or toddler or preschooler, you hesitate. Because you don't have years of medical experience, you've not had to live under this constant cloud of terminology and medications and procedures until very recently, and you carry in equal measure intense fears of missing something and overreacting, all the time.

So when Kiedis didn't crawl, but instead did this strange scoot sitting upright with his right leg tucked into his body and his left leg and arms doing all of the work, I didn't know what to think. I knew that learning to crawl was actually essential to building some brain processes he would need as he grew, but no one I asked about it thought it was a big deal, he just moved different. Maybe it was because he had acid reflux so profoundly that being on his hands and knees hurt, someone suggested. Plausible, I thought. Or maybe this method was faster for him or he liked the attention, others said. He was a little ham as a baby and did like to keep up with the action around him. I heard stories of other children who also did this and never crawled -- normal children, like his pediatric cardiologist's daughter who was playing bassoon at Carnegie Mellon or some such. Well, he's a medical professional and he thinks this is okay, I thought, so I tried very hard to stop frowning as I watched him scoot around our home, my then place of employment, pretty much everywhere.

He was just different. Nothing wrong with that.
*****
Kiedis was born with what's called a sacral dimple -- it's an almost-hole at the base of his spine, I forget at which place, I think maybe Lumbar 4 but I could be making that up and I'm not sure where the records are that state that, so bear with me -- where the spinal column, while forming, didn't completely do it's thing and separate and close up like the rest of us. With extreme cases of spina bifida, there can actually be parts of the spinal cord that get caught in between those pieces of spinal bone and actually out through the hole in the baby's back. This is the most rare kind, where others there are hairy patches or holes that need closed, or, as in our case, not quite a hole that goes all the way to his spine, but part of his spinal cord was still attached to the inside of that dimple by a fatty deposit.

This is called tethered cord, the most minor form of spina bifida and one of the more common. Without treatment, it can cause a host of issues with intestinal, renal, kidney, and liver processes as well as impair if not completely disable the child's mobility. With treatment, he would probably walk, which might secondarily help with his whole enlarged kidney and ureter reflux issues that were(are) most likely related to this condition.

He went for his first sedated MRI in Dayton Children's Neurosurgery Unit at just 13 days old. And many more times after that (as well as for his kidneys in the Urology department). We were able to determine that his spinal cord was in tact, and not leaking fluid (which was a real possibility) and to decide that surgery just might save my boy's ability to not be in a wheelchair for the rest of his life.

So, at 19 months old (with a one-month old in tow) I took my son to Dayton Children's Hospital for spinal surgery with the head of the neurosurgery department, Dr. Kleiner. I liked Dr Kleiner -- he was brusque enough that I had no questions about the complexity of the surgery (in his words, meh, not the worst he's seen so probably a pretty easy job) or the potential complications (slight chance he could slip and puncture a sac of fluid at the end of his spine and render my child a paraplegic, but you know) while still understanding that I was completely overwhelmed by this very ill, very unplanned little boy and that I was doing the best that I could with what I was given.

It was kind of like when I had my first ultrasound with Kiedis, where they couldn't detect a heartbeat so they had to bust out the wand and do the inter-vaginal kind. It didn't occur to me that there might not even be a heartbeat. I didn't realize that fear until the same thing happened with Tova. So, sitting there in the Parent Lounge outside of surgery with my newborn, as this was my first go-round with this, it didn't occur to me that I just sent my toddler in to spinal surgery and he could not come out.

Ignorance truly can be bliss at times like this.

*****
From there, I remember snippets. Dr. Kleiner coming in to talk to me about the surgery while I was breastfeeding Tova and feeling exposed and apologizing and Dr. Kleiner telling me to stop being ridiculous, he could wait if I was uncomfortable, said with kindness and enough genuine consideration that I didn't care anymore that my boob was hanging out. Being told I couldn't bring Tova into the ICU where Kiedis was recovering and pretty much having a mini breakdown and them letting me bring her in anyway, just for a little while. The tiny bed with all of the tubes and Kiedis' long, blonde curly hair splayed out on the sterile pillow while he sleepily signed "mama" at me. 

The attending resident who was the first person to tell us about Help Me Grow, the county program to help kids with outstanding conditions catch up to their more typical peers, because the surgery would qualify Kiedis, and he was markedly behind on some of his other milestones, too. Also, the resident's shock that our pediatrician hadn't mentioned something sooner.

Kiedis began that program six months later. And it was there we began the journey we're on now, with his latest diagnosis of Autism, and it's where he learned to talk and listen and where we first saw flashes of the little boy we have today. Without that early intervention, I'm not at all sure where we'd be with him.

There was an emergency trip back to the Dayton Children's ER because post-op he started leaking some fluid. Dr. Kleiner met us down there to inspect and rebandage him, reassuring me that I was being an excellent mother and that both of my children were so fortunate to have someone so attentive and obviously involved in their lives because that so often isn't the case.

And then, two days after his surgery, when Kiedis was finally allowed to stop laying flat, he got up off of the pulled-out sofa couch and ran -- RAN -- to the kitchen, giggling all the way.

*****
As of this past fall, Kiedis was officially discharged from Neurosurgery, his procedure considered successful because he not only learned to walk, but could kick a ball, ride a tricycle, and potty train. That last one has given us a doozy, but it appears to be a much better situation than we initially believed. Of course, we still have to check in with Urology this summer, but between the expertise of Dr. Kleiner and the attentive care of his nurse practitioner, Angela as well as the general staff of Neurosurgery at Dayton Children's, I have a little boy that is nothing short of a miracle.

So much so, that the first time he saw this Dayton Children's commercial with none other than Dr Kleiner in it...

... he ran up to the TV, pointing to Dr. Kleiner yelling "THAT'S A KIEDIS DOCTOR! THAT'S A KIEDIS DOCTOR!"

And I choked up, because my sweet little boy remembers the voice of a man who gave him the ability to walk almost four years ago.

That's why I'm so honored to be given the opportunity to run for Dayton Children's Hospital in the United States Air Force Half Marathon in September, right here in Dayton. (Well, actually, it's in Fairborn by the Air Force Base and my alma mater, but semantics. That actually makes it more of my hometown than anything.) I came a little bit late to this game, so in order to keep my spot on their team I have to raise $250 by July 10th. This money will go towards state-of-the-art equipment to help kids like my son become the children they are meant to be, not just be defined by their birth defects or disabilities or illnesses or injuries.

This money could very well help Kiedis when it comes time for his next surgery, with Urology.

If you have it in you this impending holiday weekend, even $5 would help. I started training yesterday -- I have just 12 weeks this time, so pray for me (ha) -- but being able to celebrate not only my natural-born ability to run, but the fact that my son is now able to do the same, won't be possible without your help.

So here's the link to the fundraising page. You may recognize the photo of my boy being big and strong.

I am eternally grateful to Dayton Children's for giving my son, and thereby my family, the best quality of life possible for us.

We would not be who we are without them. Thank you.