RTA update

Me returning a call: Hello! How ARE you?
Man: Good. You?
Me: Doing fine. ... wait, is this Steve?
Man: Who?
Me: Steve?
Man: No. This is Alex.
Me: (wracking my brain for any Alex I know) Oh... um... I think I got the wrong number.
Man: Dr. Alex
Me: OH!!! Jonathan's nephrologist!  Sorry. I recognized the number and thought it was my husband. ... He just got a new job and I thought this was his work phone.
Dr. Alex: I wondered why you were so excited to be hearing from me. I just sent you an email, too. Wanted to let you know Jonathan's renal panel looked great. His HC03 is up to 26. So keep the dosage the same.
Me: That's exciting, too. ... Sorry about that, again.

I need to program Steve's new work number into my phone.

Embarrassing conversation aside, I was excited to hear from Dr. Alex. Maybe not as excited as if it were Steve, but who can blame me?

There's a reason I recognized Dr. Alex's number (that's not his real name, but you probably already figured that one out). We've chatted a lot over the past month. And truth be told, I am happier and happier to hear from him. He's had to change Jonathan's dose of renal medication once, but since then, my son has turned into one thriving little man.

He's only gained a pound since we started treatment for his renal tubular acidosis a month and a half ago but he's gained so much else that we're bouncing from excitement.  And considering he couldn't gain even a pound all winter long, we're quite happy with a pound in a month and a half.

Things gained:
Energy
Regular BMs
Height
Alertness
Energy
Talking
Walking
Energy

He's bouncing off the walls. He's so much more interested in learning things. He's not walking around in a tired stupor any more. It's not surprising that he hasn't gained as much weight as we'd hoped -- he's burning off all those correctly metabolized calories in learning to do all the things he only wished he could do before.

Continued struggles:
Gag reflex. It's too strong. That boy gags too well. I continue to use the techniques we learned in feeding therapy to help him be willing to experience new textures and foods, but it's a struggle. Crying will also induce the gag reflex, so an accidental bonk of the head often means a misplaced lunch on the floor. We are so glad we bought a home with wood floors.

Chronic lung disease / BPD. We don't talk about this often, but it's still there. It's the middle of the summer, so we didn't expect to see a ton of it, but it's also the middle of the summer, so his pulminologist thought we might want to try a half dose of his steroid.

The Vision of Trees - ROP

This post first appeared in Catapult Magazine and is a raw look at how I processed JAM's potential blindness when he was diagnosed with one of the worst versions of retinopathy of prematurity, "AP-ROP" or "Rush Disease," and I found myself coming to terms with the knowledge that, even with laser eye surgery, he would never have normal vision and may never see more than shadows. 

 

Emerald, orange and yellow flashed at crisp sunlight, shading my windshield of dead bugs. I arched my neck to look past the filth. Leaves had never been those colors before. I thought I knew what color was, but this display was different. Never in the history of the world have trees given such delicious colors. On this day the trees had decided to become deeper, more majestic, merged together to make the most beautiful bouquet, each at perfect peak.

 

Our crabapple tree, just days before his birth.

I knew why they’d done this. It was for me, in celebration and in mourning. They’d heard his news. He’d make it to his first birthday. That was almost certain. The worst was behind us. But his eyes may never take in an autumnal feast. They had called it one of the worst forms of retinopathy of prematurity. Fast progressing.  They showed me the pictures, thick veins twisting to and fro, pulling at the thin retinas, stuck beneath a protein cloud that prevented veins from growing into the sunlight. He may soon be blind.

 

So the trees chose that day, as I drove home from the hospital with this news, to give me their fruits — a gift and a sacrifice.

The wind blew hard in the weeks that came. I didn’t mind at first. It took away the stifling summer, with its long days and no answers. It threw aside the canopy of leaves, the curtain that hid the true frame of things, giving cool clarity.

 

The trees showed off their shape. Some grew straight and strong. Their roots were secure. Nearly each branch would gain another set of leaves to join in next year’s autumnal feast.

 

It was the crab apples that darkened my vision. They would pull at my eyes as I drove so that I could not look away. Gnarly, thick, with roots that yanked at the retina of the ground like the vessels in my son’s eyes, unable to reach further into the sky.  The branches on the bottom had died off, shaded by the new growth that would not grow high enough, would not let enough sunlight through.

 

I wanted his eyes to be maples, tall and thin, stable and continually reaching for the edge of their world. Maples could see. Apples were full of retinopathy of prematurity, and that made it impossible to stretch high enough.

 

Everywhere vessels called branches flashed to my retina images of his eyes. I wanted the canopy of colors back again. Why hadn’t I minded on the day when the leaf curtain left the sky? I wanted it back, to shield and clothe the tree frames, to help me forget blindness, darkness, to help me see light again. A tree is a tree, always. I tried to convince myself it didn’t matter its frame. Please, give me back light and color and beauty. Show me your leaves, not gnarly death. Leaves give hope.

 

I parked my car.  Time for footsteps, for movement forward even if this is not the road I’d have chosen. Push on, feet heavy, anticipating a long, dark winter. At that moment of cold reality, and without warning, the leaves beneath me gave way. With their final cry, they gave a gift.

 

Crunch.

 

Crunch — kick — crunch.

 

Sunlight hit my forehead, warming my face. Dark winter was not yet here.

 

I looked down again, with purpose, looking for the crunchiest leaves.

 

Crunch, crunch, crunch.

 

The oak trees might be brown and ugly, but they won every crunching competition. The feeling under my feet was satisfying, the heels on my shoes were best for crunching. I liked the small almond apple leaves for the kick, the way they gathered close and exploded into the air.

 

The texture of the world took shape. And the texture of the world was good.

 

The gift came from both the short and tall in the woods and on garden paths. The gift required no light, no color, yet it was still beautiful.

 

Without light, there is still beauty. In beauty, there is vision. My vision was made new.

 

I saw a child, healthy and four, crunching oak leaves in his fists, laughing and throwing them into the unreachable and unseeable sky, basking in warm sunlight, unaware that his eyes were like the crab apple tree that threw speckles of cool on his forehead.

 

He was going to live. And life would be good. I would make it so. I would pass to him the gifts of the trees.

 

Comparing

Last year not-smiling

Parenting rule #2:  Don't compare. Just don't. Unless you're comparing your own child to themselves.

Granted, no parent actually FOLLOWS this rule, but we know we should. And that is at least something.

JAM weighs a hefty 18 lbs 4 oz at two years old. We're not thrilled because that's a horrible gain in the last year. (See? I'm only comparing him to himself! What a good parent I am.) I'm not concerned any more, though, since the amazing nephrologist just recently figured out all that "failure to thrive" stuff.

This year not-smiling (see mom, I grew THIS much)

There are a few plus sides to being small. T-shirts last longer.The pictures below are from his first birthday AND his second birthday -- same shirt. And, at least he's behaving developmentally appropriately (he's advanced even) for his appearance.  He looks like about a 12 month old now, don't you think? That's what our neighbor guessed when we told her it was his birthday today.

Last year's smiles: part 1

He deserves an extra year. At birth he was 4 months behind his peers. Then he had six surgeries before discharge. I figure every surgery puts me around a month behind -- so there's another six months. Well, we'll say five, since one was "merely" eye surgery, and he's a kid, so he heals faster than us adults. Add two more major surgeries before he was one, each requiring about a month of healing, and you've got a total of eleven months of disadvantaged environments in his first twelve months of life. Ugh. Math only leaves him one good month in that first year. (I'm guessing that was the month of May.)

Okay, so that's rough. Then add to that that in his second year of life he spent most of the time undernourished and exhausted, with his body stealing from his muscles and bones to keep his pH closer to balanced -- and you'd expect to see a kid who is just barely hanging in there.

But that's not the kid we see. (Anymore.) Our child is doing so remarkably well considering it all. There were moments in the last few months where we were really really concerned, where I cried tears of frustration and hurt at the small tired baby that lay staring at the light because his energy reserves were gone. But then, even then,  he'd bounce back up again, moments later, and trot around the room on all fours, his head high like he was showing off for the world. His spirit was not crushed. Perhaps this babe has figured out the secret of how to live on love alone.

Next year, bud, next year we'll add good-old-fashion nutrition to all that love friends and family have poured on you. Next year is going to be amazing. You'll finally outgrow that shirt.

Last year's smiles: part 2

This year's fuzzy smiles

Last year: awkward pose

This year: awkward pose part 1

This year: awkward pose part 2

Bonus picture. (This year.) I love this kid.

Happy Birthday, JAM

Happy Birthday, little JAM man!

We don't have anything as cool planned for your second birthday as we did for your first, but on this day, no matter the year, we remember the wonderful gift that is you and the provisions that carried you through.

Your first year was the year of survival. You had many surgeries and brushes with death.
Your second year was a year of discovery in the midst of medical mysteries.
Those mysteries have now been solved.
Let's have your third year be a year of thriving. A year of normal toddler-hood.

You seem to agree. Let's be normal. You started today with a normal terrible-two temper-tantrum.

I'll take the temper-tantrums as a good thing. This is a new phenomenon for you, my normally laid-back child, but you've discovered you have a will, and that you can't figure out how to bend the world to this will of yours. I don't blame you for being frustrated. You have preferences, and while your mouth still won't say "no, mother, I'm teething now, so I'd really prefer the bottle to the sippy cup. And could I have water instead of formula to start off with, please?" your brain knows that this is what you want.  We're going to figure this thing out, babe. This year will be remarkable.

Thanks for sticking around.

Sweet. Presents.

That was it mom? Just a shirt?
(This one is 12-18 mos and way too big for him. I'm thinking
of putting last year's green shirt on him again for pictures later today.)

JAMmin! Drumming is one of his favorite things to do.

Yep, I'm TWO!

He gained a pound!

Only two weeks into our fight against the acidosis monster (otherwise known as "Renal Tubular Acidosis") and already we are starting to see some HUGE gains.

As in a pound.

As in more than he gained between November and May combined.

All in two weeks.

This momma is really really happy.

Tomorrow my baby turns two, and he is finally over 18 lbs. 4 ounces over, to be exact.

Take THAT you nasty acidosis monster,  you. You can't hold JAM back ANY MORE. We've found your cryptonite, and it's only a little more medicinal than baking soda. Ha.

(Sigh of bliss.)

Say goodbye, failure to thrive. Because THIS baby? This baby is going to THRIVE now. Just wait and see what this next year will hold!

My Vocation Revealed

I used to think my career path looked scattered, unorganized, pulled. Now I realize that each job, each skill learned has brought me here, to my new vocation.

Vocation: a strong desire to spend your life doing a certain kind of work -Merriam-Webster

Last month I received my last paycheck. It may be years or decades before I earn another. My new job is one that won’t pay, and one I never wanted.

I tried being a stay-at-home parent once before, and it didn’t fit. The wool was too itchy, the expectations too high, and my coffee always too hot or too cold. I found a job that was fulfilling and meaningful, my children thrived in daycare, and I cherished my time with them more. It seemed clear that I was a better parent when I was a working parent.

Then daycare didn't work for our youngest, "JAM." I gave up the job I loved out of obedience and need. In an unexpected breath of grace I found I fit easily into the new role. In the end it wasn't that I was a better parent as a working parent; I was a better person when I followed God's plan and direction, no matter how much or little sense it all made. That journey brought me here.

My first job was in a group home for people with disabilities. I discovered under it all I was an intellectual snob that believed that everyone should be "best" at something. Fastest, smartest, skinniest, funniest. I'd been searching for this -est part of me, and these clients forced me to stop. As we became friends, I learned that they were -est only at being themselves, and that was enough. These were the friends that we had in mind when we told the doctors "resuscitate our son." 

Since then I’ve worked as a teacher and in  administration and event planning. The skills in all these jobs touch my children’s lives today. As a teacher I practiced putting myself in the learner's shoes in order to help the learner reach toward the next step. This skill has been essential as I help JAM overcome his PVL (brain issues). As an event planner I needed to know how things worked and keep everything organized and functioning smoothly. I use these skills daily now as I coordinate half a dozen specialists, plus therapists, teachers, medical equipment, and insurance bills -- all in addition to coordinating the schedules of two older children and normal toddler things like diapers and sippy cups, story times and changes of clothes. Even my training as an English language teacher is coming in handy as I work with a speech therapist to teach JAM his first language.

From tutoring and teaching to paying bills and coordinating caterers -- I have had half a dozen jobs in the past dozen years. All of those skills will be used as I move into being "just" a stay at home mom.

I used to be afraid of going back to being a SAHM, but those fears have been squelched. At the core of it all I've found that I thrive when I am following God's plan, wherever that may take me. In addition, I thrive when learning, and I have learned a lot since JAM was born. I spent today researching acidosis. I am in awe of how our bodies compensate for deficiencies. Tonight I witnessed E's kind heart and K's incorrigible optimism. And in the midst of writing this blog post, I've discovered that JAM is soothed to sleep best by harpsichord. I am fascinated.

I am doing more than just surviving my job. I have found my vocation - in the place I least expected and for unbeatable pay.

This post is part of the differentdream link share. Read and be inspired by articles written by parents of special needs children. Visit here: http://www.differentdream.com/2014/07/dream-team-link-share-17/

Week one on RTA meds - still pinching myself.

I am still pinching myself that we have a diagnosis. I am so grateful that the reason for JAM's failure to thrive has been discovered.  It will take a while for his system to regulate and stabilize, but we are already starting to see some benefits. Given that RTA could be life threatening or cause rickets, we are so very happy that this kidney disease was diagnosed so early (relatively speaking) in his life.

Down sides:

While we are in the early stages of this, he will have to get blood tests regularly to see what the meds are doing to his Ph levels. First test comes next week. Then it's every few weeks until he's at a good level, then at least every three months for the first year on meds.  That said, it's better than if he had diabetes, so all told, not too bad. Too bad that he is a very very difficult poke. In order to get a good draw on the first try, we have to drive to the children's hospital 45 minutes away. Even then, they struggle to get blood on the first try. [Last time we had a blood draw the phlebotomist took one look at J, remembered him from the previous draw, and immediately called for backup.]

While I thought solving his weight gain issues would gain us a free pass to take out his g-tube finally (he hasn't really needed it for over six months), the nephrologist recommends we keep it in, at least until we are sure he'll take the drug orally. He mentioned that he knew a kid who had a g-tube given to him specifically for RTA -- he wouldn't tolerate the drug orally, and they had to give it to him somehow, so they put him through surgery, gave him a g-tube, and administered the drug through the g-tube. I thought this was extreme until I learned how much medicine J has to take daily. It's only one medicine, but he gets a lot of it three times a day, at least for now. There's no sneaking it in to one swallow, because too much has to be given for that. We haven't even tried to give it orally yet. It's super sweet (smelling at least), and so I could see how this salt-loving boy would utterly reject it, even if we tried to hide it in applesauce or some other yummy treat. We'll wait until he's a bit better at eating and until things are stable with his Ph levels before we try giving him the drug orally. And then we'll wait several months more before we remove his feeding tube. (Sigh.) It's okay, it's kind of nice to have as a back-up.

How he's tolerating it:

At first the drug seemed to make him nauseous. Either that or he had a headache (a distinct possibility since E and I were both fighting a bug that gave us a huge headache). So maybe it wasn't the drug. But he wasn't feeling that great.

Now he's doing a lot better.  He's still more irritable than normal, but he's turning a corner. We're only five days in, but we're starting to see small changes.

Up sides:

The biggest has been in his gut. [Okay, TMI warning here -- you may want to skip this paragraph.] He would never ever have normal bowel movements. He'd go to both extremes -- sometimes at the same time. Theoretically (from an RTA standpoint) this might be because muscle weakness impacts bowel function, as your bowels are one big muscle. Coordinating that muscle when you are weak is hard. Plus, he has extra scarring from his NEC (bowel surgery). This issue has resolved itself already. It's bizarre. We kept waiting for constipation to hit again, but it hasn't. So, we know his muscles are  now working better. He's stronger.  Maybe we can stop being followed by GI in the next year.

His breathing seems slightly improved. His energy level as well. Not enough to know for sure that it's better, but he's going in the right direction.

All in all, I'm thrilled.

I still haven't found any good resources for RTA. And I have no idea why J has it. A friend says you can get it from sniffing too much glue (there's some truth to this). Not sure where Jonathan's gotten all that glue to sniff, maybe he's been hiding under his crib mattress.