Thursday, July 17, 2014


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!

Wednesday, July 16, 2014

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!

Saturday, July 12, 2014

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:

Tuesday, July 8, 2014

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.

Friday, July 4, 2014

Update on Failure to Thrive - RTA.

Remember this post from about a month ago?  How I was wishing I could change the Ph in my boy's blood and get him to suddenly and magically start gaining weight, stop vomiting, have regular bowel movements, stop having his arms buckle underneath him when crawling, and stop being lethargic?

Well, turns out we can change his Ph.

His blood is too acidic. He has renal tubular acidosis. It's rare. Even among all my doctor and nurse friends I don't know anyone (other than the nephrologist) who knows anyone who has been diagnosed with RTA.

But he has it. And we can do something about it. Finally, an answer.

We are rejoicing.

He isn't tolerating the medicine well yet, but we're hopeful.

Downside: there are lots more blood tests in his future. Poor babe.

Thursday, July 3, 2014

Becoming the patient - How being a preemie parent changed my perspective on healthcare.

Being a preemie parent -- or the parent of any medically fragile, medically complex child -- changes your perspective on things.

As of yesterday morning we'd been to the ER (emergency room) a total of three times this summer. Twice for J's severe illnesses, once for his older sister's broken arm.  That's more than the previous three years combined.

Yesterday we added one more ER visit and I became the patient. It was a dumb injury. I tripped on an uneven sidewalk. I was carrying JAM. I protected his head and body with my arms, so I didn't have anything to stop my fall. My knee fell on another piece of uneven concrete that acted like a knife, cutting a 5 cm gap in my knee. I knew immediately that J was scared and I was more badly injured than just a scrape I could walk off. Thankfully, my brother had just turned the corner down the same street and saw us fall. He acted as a first responder and took me to the ER, my sister-in-law took the other kids home, including an utterly unharmed Jonathan. I did my job well. My baby was safe. (I will wear my scar as a badge of honor.)

The admitting nurse asked to look at the injury. I lifted the towel. She looked shocked and immediately covered up my wound again. Yes, I know, that there is nearly entirely exposed kneecap. That's how I knew I needed to go to the ER. That one isn't going to heal itself. She told me it was one of the worst lacerations she'd seen. I thought "no, this isn't THAT bad. Looks pretty clean to me. Besides, I'm not in any danger here. It just hurts."

Yep, being a preemie parent changed me. I'm a bit tougher. After all, it's a knee. It's not NEC.

Ways being a preemie parent changed my experience in the ER:

1. They asked me my date of birth at registration. I gave Jonathan's DoB and then realized I was older than two.

2. It ain't a "medical emergency" unless you need to be sedated or put on oxygen. This here was just an inconvenience.

3. I automatically interpret numbers on the machines, it's second nature now. "Oh good. My blood pressure is pretty close to normal and my blood oxygen only a little lower than usual, but still in a normal range, so I am actually handling this fall pretty well. Guess I'm not going into much shock."

4. I understand the medical wards better. I knew why they got me in fast - I was the scariest one in the waiting room - and I suspected that if the child with burns had come in ten seconds earlier, my wait would have been about eight minutes longer. And I wouldn't have minded a bit.

5. In general I have a lot more patience and am a lot less demanding -- I know what to expect now.  They're not going to give me sprite until they see if I need surgery, so there's no sense in asking until I'm no longer NPO.

6. At the same time, I also know when I need to ask questions and how to answer their questions.  I feel like I'm part of the medical team now, from the moment I walk in. Being dramatic doesn't do anyone good. Unless you are afraid you're bleeding out on the sidewalk with only your infant around. Then, by all means, one should scream as loud as possible (and I did). But once they're attending to you? Keep to the facts and be honest about how you're feeling.

7. I notice cleanliness. Yes, nurses, I saw when you didn't put on hand sanitizer as you walked in the room. I also notice when nurses put on gloves and then rummage around opening and shutting eight different drawers trying to get the bandage for my hand ready. Yes, I know you're protecting yourself -- but if you'd first gotten out the bandage and set it aside and THEN put on the gloves, you'd be helping protect ME, too. I don't think I would have noticed before. Yes, I know this isn't a sterile procedure, but we're in the ER, and there are lots of germs around. And this here is an open wound. (They were a lot more careful and absolutely sterile when dealing with my knee -- as that was a surgery and not just a band-aid.)

8. I've seen a lot of medical procedures over the last two years. And the short of it is, I'm used to blood and needles. As such, I thought it was kinda fun to watch myself get stitched up with two layers of stitches. It's all super interesting, once you get over the shock.

The one thing that hasn't changed: I still make really bad jokes when I'm in pain. I inherited that from my father.

"This wound is 5 cm."
"Oh, good, I'm half way to having this baby then."


Really?  I really thought THAT was an appropriate response?


For those of you with medically complex kids: how has parenting changed your perspective on medicine and doctor's offices?