Saturday, October 31, 2015

Teal Pumpkin Project

I am a fan of the Teal Pumpkin Project, a way of helping North Americans branch out beyond the typical sugary treats for Halloween and offer small toys (rings, stickers, etc.) instead. It was established as a way to raise awareness about food allergies.

I have a relative with Celiac Disease. My husband rushed his best friend to the ER after accidentally introducing him to a tasty dessert made with tree nuts a few years back. I get how serious food allergies are. So I celebrate the Teal Pumpkin Project for what it is, but I must point something out.

For more information, visit

My son doesn't eat much by mouth. He's now old enough to care about trick or treating. We could keep him inside (and when I see the sniffling kids at overly crowded Halloween events, I'm tempted) but we instead drag him around to all the houses where he gets suckers and candy bars and gum balls... things he won't be able to eat for several years. The candy goes to his sisters and he gets, well, nothing.


"Tubies" is a nickname for people with feeding tubes. Cute (or ridiculous?) nickname aside, I know I'm not the only parent out there that will be looking at the Teal Pumpkin map to see if there are any homes that will have something besides food for my feeding tube child.

I'm not related to any child with diabetes mellitus, but I'm sure the same goes for these kids.


THANK YOU, Teal Pumpkin folks, for making the world a more welcoming place.

Who else benefits from this movement? Leave your comments/thoughts below.

Thursday, August 13, 2015

A 23 weeker success story.

On a board somewhere a mom asked for 23 weeker success stories. For a bit I questioned what constituted "success" since there's no doubt that prematurity will impact my son in small ways for a long time, but then again, if three years ago I could have seen what I see now, I would have cried tears of joy. My son IS a success.

He is still medically complex. We've been chasing down genetic reasons for our son's kidney conditions. We've added a few more symptoms, treated those symptoms, ended up with electrolyte imbalances that have landed us in the ER and hospital (and first ambulance ride) and adjusted medicines again.

We're still working out what's going on, so I'll keep this brief, but it's such a relief (and so odd) that the thing that makes him medically complex is not a result of his severe prematurity.

To go down the list from head to toe:
PVL - that "life long disability" we talked about before -- mild, and last head scan showed ventricle size to be high end of normal instead of mildly enlarged. Doesn't seem to be holding him back much at all. We've now graduated from neurology and neurosurgery. They don't need to see us any more. Ever.
Retinopathy of prematurity - We've got a kid that's quite nearsighted, and becoming more nearsighted with every growth spurt. But his eyes still correct to 20/20 with glasses, so this isn't holding him back. He's at risk for eye issues down the road, but this just means we need to keep up with his eye appointments.
Chronic lung disease - a puff on an inhaler twice a day and occasional administration of albuterol and he's good to go. We see pulminology about once or twice a year tops.
Kidneys - this is the biggy. The list of things wrong with these organs is long, but all seems to stem from one genetic condition. Nephrocalcinosis, mild (and quickly disappearing) hydronephrosis, distal tubular acidosis, polyuria / polydypsia, and associated physical delays from a body that hasn't managed electrolyte imbalances well for three years... yep. This is the one we're still trying to figure out how to control. It's impacted eating (as he gets nauseated now from potassium and sodium levels being off -- and when he was younger it impacted his nursing as he was chronically tachypnic) and that impacts speech. There's a chance hearing has been compromised as well. We'll check that out next week. He's failure to thrive still and needs a g-tube to administer some (but not all) of his food.

And that's it. He walks, he runs, he talks, he has a fantastic sense of humor, and his small stature and glasses just gives him more "OOOOOH!!! He is SOOOO adorable! That kid is so cute!" everywhere we go. It's almost an involuntary response on the college campuses we frequent.

Yes, success. Yes, the long road was worth it. There was a light at the end of the tunnel.

Tuesday, May 12, 2015

You are enough.

A year ago I wrote these words on the comments section of a blog written by a mom who has gone before me with her own premature son. She re-posted them in this post and I re-found them while surfing the web this evening. I found it to be such a treasure that I thought I'd share.

Folks, we are all enough. Whatever or wherever you are, it is, simply, enough.

I worked with non-verbal, non-ambulatory adults before having my second trimester baby. They kindly taught me that I was an intellectual snob. If you'd asked me, "Do you think all people have value?" I would have said yes. But secretly, in that part of me I wasn't even aware existed, my actions showed that I believe people had to be smart enough, bright enough, fast enough, good enough. They had to have something that they were best at, and I was constantly measuring myself to see if I was "enough" of anything.

My adult special needs clients quickly became friends. And they weren't fast enough, smart enough, etc. enough at anything. But yet they were enough.

Now when people in my very brainy world (full of philosophers and academics) talk about what it is to be human, I think of these friends. If their definition does not include my friends, it is a false definition, because in so many ways these friends taught me how to be human better than my lofty education ever could.

I know that sounds ideal and romanticized, but the lessons I learned from them were ones that no textbook could have taught me.

The lessons I learned from them were the ones that allowed us to, without hesitating, say "yes, resuscitate our son, because if he can live - even if it's as a non-verbal and non-ambulatory person, if he can even have a chance at life, it is worth it."

And it has been so worth it.

Friday, May 1, 2015

Nominate your NICU hero

Do you know a NICU Hero? Did you ever get a chance to thank that special person?

Hand to Hold and Mead Johnson Nutrition are accepting nominations from April 1 to May 14, 2015, to the Third Annual NICU Heroes Awards. They are inviting parents and caregivers to nominate NICU health care professionals whose compassionate care and dedication helped lessen the emotional toll of a NICU stay and ensured the best outcome for their baby and family. 

There really are so many NICU and bereaved families receive care from neonatal staff who goes above and beyond what is required.

Nominating is easy. Fill out a short form with contact information, your story, hospital name and the name and email of the NICU professional you'd like to nominate. That’s it!  

Nominations will be from April 1 to May 14, 2015 at 5pm CT. All nominees will receive a Certificate of Nomination in recognition of their achievement and a copy of the story you share about the difference they made for your child/ren and family. It's a wonderful way to share your appreciation for their efforts when words hardly seem enough.

A panel of judges, composed of NICU parents and active NICU professionals, will judge the awards and decide on two winners. The two NICU Heroes Award Winners will receive the following:
·  A  a NICU Hero Award certificate and trophy, presented at the winner’s hospital,
·  A $2,500 donation made in their honor to the pediatric healthcare charity of their choice*, and
·  A one-year subscription to the Hand to Hold NICU Resource Library for the winner’s hospital to help educate families new to the NICU
*Some limitations apply

Friday, April 3, 2015

"I know, it's the glasses"

The gradual end of isolation brings with it comments from strangers. Today marked our first timid outing of the year, to attend the Good Friday service. We stuck to the sides and backs of the church and applied hand sanitizer so liberally that one of the ladies watching us smiled the third time we reached for it. Since we are new to the community, people don't know us well. Since Jonathan's been in isolation, people have never really seen him before. He's got a face that's hard to forget.

Mostly we heard, "Oh MY goodness!! He IS    SO   CUTE."
And we responded, "I know, it's the glasses."

But also other comments.
"How old is he?" (gulp)

This time followed by, "It's obvious he's REALLY smart." 

To which I of course reply, "Thank you,"

But inside a little knot tangles and untangles as I think:
"Maybe? I'm glad you think so, but I'm not sure I dare to hope... you don't know it, but he's in special education because of his significant delays. That doesn't usually  equate itself to 'really smart.' He may forever be in special education. But I love the way he sees the world, and watching him watch us encourages me and gives me joy. In the end, does it matter? Do labels matter, and even if they do, does THAT label matter? I try so hard to believe labels are nothing compared to the kid. Smart or not, he's still himself, and that's worth so much."

In the end, perhaps the best response is, simply,
"I know. It's the glasses." 

Monday, March 2, 2015

More gratitude - The sun has come out again

Checking out the toys
Y'all know that J is small and developmentally delayed. And y'all know that some of that is from his prematurity, and some is from the long undiagnosed renal tubular acidosis.

Saying he's "developmentally delayed" is harder than admitting he's small. I want to strike it out with all the "BUT"s of his life. "BUT he's trying so hard, BUT he's almost up to 50 words. BUT you wouldn't know it looking at him. BUT he's not THAT behind, BUT it's from the lethargy of undiagnosed RTA." But no BUT will remove the delays from his chart, not yet.

We had an appointment with the developmental pediatrician today to check up on these issues and get an overall sense of progress.

Winter gray lifted and the sun showed through scattered white clouds the full there and home again. I knew the sun would come back again, eventually.

As he played in the waiting room, another girl, just his height, came and joined us. He viewed her with cautious curiosity, and she saw him as an instant friend. They played side-by-side for a while, and then she jumped up on a table that was just above waist height for her. He regarded this with some surprise.

"Learning bad habits, are you, buddy?" I said to J.
"Oh, get down from there! You're teaching him bad habits!" the other mom echoed to her daughter.
"It's okay," I said, "He doesn't have the strength to do that. And, honestly, if he did, I'd be thrilled."

Because the two looked like twins in height and build, the next question was inevitable.

"How old is he?"
"Oh, certainly older than she is." I said, "He's a tiny guy."

She nodded at my redirection and turned to her daughter. But, looking at them side by side, exactly the same height and playing so similarly, curiosity got the best of me, too.

"So, how old is she?" I asked.
"Almost two," her mom beamed.
"Ah!" I said, and then, because it would be rude not to share, "He'll be three in July."
"Wow, he IS itty-bitty!" she replied.

But do you know what? The comment didn't sting. Through that entire interaction, watching him with an almost-two-year-old who was clearly stronger than him but not THAT different, I couldn't help but smile with gratitude. "She's an almost-two-year-old." I thought, "That means he looks like an almost-two-year-old and he acts like an almost-two-year-old. He might look like a two year old before he turns three!" I thought, "And he's getting so strong,"

Our conversation stopped there as the nurse called us in. Jonathan heard her call and walked HIMSELF out of the waiting room (a first), head held high with the confidence of a toddler who knows where he was going. I followed him, still smiling, thinking of the little girl.

In the doctor's office, he paraded himself around the room with glee. I marveled that his rib cage was no longer visible. Four months ago I had to keep him strapped in the stroller to keep his hands off the dirty floor. This time around he never once tried to crawl. He was terribly helpful with his physical, showing the developmental pediatrician how to use the alligator hammer to check his reflexes, and reminding her that a fun looking twirly wire connected the fundoscope to the wall. What a difference from the lethargic stares of last spring. So grateful.

He weighs nearly 9.5 kilos (20.75 lbs) and is 31.25 inches. He's still off (below) all the charts for height and weight by age, and he's sitting right around the 5% weight-for-height ratio, but that's really good compared to a year ago, on all accounts. Our weight goal is 10 kg by April -- a goal that seemed impossible when we set it last fall, but he is getting there. Ah, gratitude.

The developmental pediatrician commented on his muscle tone. "I have written here from our last visit 'low muscle tone in ankle,'" she said, "but he's not any more." She gushed. I'm overjoyed.

The endocrinologist doesn't think J has any hormone related ailments. The GI doctor thinks he looks great and confirmed that NEC was likely the cause of his zinc deficiency, which is an answer to that question. Both specialists have one more follow up appointment (one four months out, one a year out), but in both cases, I think that just may be the last we see of their offices.

We've seen huge gains with the in-home physical and occupational therapists over the last two months (it's hard to believe it's only been that long) and so at today's appointment we arranged for him to switch to inpatient therapy after he's out of isolation. I was reminded that April was just around the corner.

I could climb this -- if I wanted to.
The drive to inpatient therapy is not short, and it'll mean weekly appointments in the Big City, but this boy is taking off -- and it seems for the first time in a long time that "catching up" might just be a thing for him. It will be a while yet, but we are so grateful.

These amazing developments (well, other than the emergence of the sun) brought to you in part by nephrologists, fixers of the kidneys, and by bicitra, the medicine that is correcting J's renal tubular acidosis. This month is national kidney month. We remember you this month, kidneys. Thank you for keeping us alive, giving us energy, and helping us pee -- all year round.

Thursday, February 26, 2015

"Do you ever wonder why (your baby was born so soon)?"

Father and son
Copyright held by the author. Do not reproduce without permission.
Last week Steve and I met a retired pastor. In the course of our conversation, he learned about our son’s ridiculously early birth and subsequent struggles.

“When you think about your son, do you ever wonder, WHY?” he asked.

“For every 'why,' there are twenty-three 'thank you's,” Steve responded.


My answer would have been, “Yes. I often wrestle with the ‘why.’ Why is he alive? Why can he see and hear and speak?  Why can he walk and talk and play and make jokes? Nearly every day I wonder why.”

I'm grateful my life partner is so much more eloquent (and concise!) than I.

To celebrate Steve’s twenty-three “thank-you”s (I never did hear what they were), here are twenty-three of my own.

1. Thank you for life through the night
2. For the opening of eyes and the ability to see
3. For plastic tubes and life-saving bleeps
4. For doctors and nurses
5. For breast milk
6. For the ability to hold one’s child
7. For the sound of a squeak of a cry
8. For kidneys that work
9. For intestines that digest
10. For therapists that understand and care
11. For laughing and smiles
12. For two staples and a scalpel used to heal a broken heart
13. For family and friends that stay away when sick
14. For family and friends that cleaned and cared and cooked when they were well
15. For PICC and central lines so that pokes are no longer needed
16. For brains and bodies that can get stronger – even if it takes hours of therapy
17. For the groaned prayers and lit candles of friends around the world
18. For the good sense to catch oneself when one falls – thanks for the vestibular system
19. For walking, and the tools that makes it possible
20. For talking, even if mumbled words
21. For peace beyond understanding when things are uncertain, and the comfort provided by sympathetic friends
22. For perseverance
23. For a chance

What are your "why"s and your "thank you"s?

Friday, February 20, 2015

This weather has got to go

Let's be honest.

I've not seen the sun for more than moments in two months. My doc was so alarmed by my vitamin D deficiency that she called a prescription dose of it in to the pharmacy. I've gone to events just for the purpose of getting out of the house. I spend hours trying to get the online system from J's hospital to work so that I can read his test results as he struggles with morning lethargy and vomiting.

The system still doesn't work. I even called their support services. Turns out that when I click on labs, it tries to send me all the labs at once. With a kid like him, that's enough to cause any computer to time-out.

I told a doctor friend about the new tests JAM was getting. He immediately understood what the endocrinologists are testing for, so he gave me a new term and enough information for me to start on an online search of medical journals for answers again. I know I shouldn't. I know I should just wait. But information seeking is cathartic for me. It tells me what I know and what I don't yet understand. And I still don't understand JAM. Again we wait in the hard limbo of wanting answers and not wanting THESE answers.

I worry and I cry and I am ready for the cold winter to be over.

I am still glad he's in isolation.

But being a parent of a medically complex child is difficult. JAM is a delight. The cares and worries that surround him are worth it.

We're used to all the other stuff now. now. We don't bat an eyelash when we have to take out an emesis bag after he's stuck with a needle. We aren't afraid of gavaging in public. Getting blood draws is still hard, but we've toughened for the most part. Two times ago, J actually just sat and watched as they drew the blood. A squeak at the needle poke was his only protest. Last time they missed on the first try, so they had to draw blood again, and he wasn't so happy.  As they searched for a second vein, he wailed "AGAAAIN!?" and proceeded with crying and "mommy! ba-ba! [bad, bad]"

It is hard, but it is worth it. We are waiting for answers again, and my soul's as cloudy as our sunless sky.


for the sun to come out again.
Storms always come
but they blow away with the wind.
for the sun is coming again...

Thursday, January 29, 2015

Letter to my oral adverse child

Dear Son,
It is time. Time for you to start self-feeding a significant amount of your nutrition. More than just a few cherrios and sips of milk. You should start to use a spoon soon. Everyone says so.

As such, I'm giving you opportunities. Every meal I put puree on your tray. I give you crackers and spoons to dip in the puree. I give you opportunities to touch and play with different textures of food, even if you're not willing to put it to your mouth yet. And then I try to feed you myself with the spoon, as much as you'll allow. I don't force, but I do offer. You used to be much better at it, never needing the feeding tube, but you've become stubborn as of late. Now sometimes you take it, but most times you refuse and fake-gag, waiting for the sippy cup of milk or the feeding tube to satiate you.

Please, it's time. Practice learning how to self-feed. I know you're smart enough for it, I know you can do this.

Your Mom


Dear Mom,

I understand your concern. I also understand that the puree on the tray is really really slimy gross. Have you seen that stuff?  And the spoon is the terrible device that brings that slimy gross stuff to my mouth and face. Is it any wonder that any chance I get, I put as much of the slimy stuff as I can on said spoon and then throw it vehemently on the floor?

It's okay once it's IN my mouth, but lately you've been asking me to TOUCH it. And when it touches my hands and face? Well, you can understand why a civilized boy like me wouldn't like that sort of slime around him. Of course there will be push back when you're asking me to do the unthinkable. I hope you understand.

I try to be kind. I don't make too much of a fuss, I simply wipe it off my face with the back of my hand and then find the closest towel-like-thing (usually my hair) so I can wipe it off my hand as well. Yes, I make a face, but let's face it, purees make slimy messes. And I hate slimy messes. They lead to the second worst thing in the world: baths. Or washcloths. Both of which also aren't fun.

As such, and as I've showed you at multiple meals, I propose a different method of self-feeding, one which I think will serve me well for life.

"self feeding"
You have this tube you hook up to my stomach, as you alluded in your letter. I haven't figured out how you attach it to my second belly button (I've tried, but it's hard to see what you're doing when you hook it up under my shirt). But, once it's hooked up, I think I can do the rest.

I've tried to show you this. I begged and pleaded (and you FINALLY got the message and let me try), I know how to put the food into the syringe that leads to that stomach. I told you I knew what it was doing -- going down-down into my stomach. It's not that complicated, and if I pour it in, I don't have to touch it. It's brilliant.

I'm two and a half, mom. I can gavage my own food.

I even know about the plunger. When food stops being dispensed in to my tummy because it gets clogged, I push the plunger gently and the gravity feed resumes. I've shown you I can do that too. I've been insistent about it.

You want me to learn how to self-feed. I understand. You're a busy woman, and I'm a grown toddler. I propose, however, that you allow me to self-feed my own way. Don't teach me to tolerate slimy foods. They feel funny. Instead, just give me some expensive medical equipment, and let me do this my own way. We'll both be happier.

Your Son

P.S. Yes, in hindsight I realize that trying to put my cheerios down the feeding tube wasn't the best idea. I'll refrain from that -- and small toys -- in the future.

Saturday, January 10, 2015

Lessons about Life's Blind Spots

I attended a forum today at the local university. I will be honest, while it applies loosely to my educational training, the real reason for leaving the house this morning was not the topic of the forum. It was simply to get out of the house. The world of isolation and the cold of winter are both getting me down. That said, I am glad I went. The forum's topic was issues of the global church and, more broadly, issues of cross-cultural understanding. In short, we need each other. We need the perspectives that can be gained only through community.

As I listened, I knew two things:
1. These presenters had known the rawness of life. They have learned to walk when things are difficult and the weight seems too burdensome to bear.

While that is not surprising, I discovered that, because of our time in the NICU, I could relate to their stories in a new way. I learned these lessons in the NICU and they learned these lessons across the globe, but the way we responded -- the way God led us when things were bleakest and we had no more of our own strength -- were so similar. Their experiences resonated with one another, and with mine. I was nourished.

2. Jonathan's life can speak to our understanding of the world around us. Particularly, his vision helps me understand my own vision. So, in the "Lessons Learned through a Micro-Preemie" spirit of this blog, as I listened, I penned these thoughts.

As you, the blog reader, know, when my son was just a few months old, he was diagnosed with the worst form of retinopathy of prematurity, called Rush ROP, or Aggressive Posterior Retinopathy of Prematurity.  The vessels in his eyes were not growing correctly, and left untreated, his retina would become detached and he would become blind. The surgery to preserve his central vision would come with a cost, though. The scars the lasers left would limit or eliminate his periphery vision.

As you also know, the surgery worked. While he wears glasses, his central vision is preserved and (with the glasses) he can see even the smallest bead clearly.

At the last appointment with his eye doctor, I asked when Jonathan would be able to tell us what he couldn't see, so we could know how bad his tunnel vision was.

The doctor turned his head slightly and paused. "He will never be able to tell you what he cannot see," he said.

He further explained, "He will not see blind spots. He will not think he has tunnel vision. His brain will fill in everything." From memory or conjecture, my son's brain would make up for his visual failings, so things would always look normal to him.  Nothing is blocked out.

As I listened to the speakers at today's forum discuss our understanding of our world, it occurred to me -- we all have my son's vision. We all anchor our beings by focusing on things that make sense to us. We limit our own vision to bring greater focus to the world around us. It makes sense, but we must be aware that these blind spots exist. We will not see them as blank areas, because our brains will fill in those spots as best as possible.

This is why we should turn our heads from time to time and focus elsewhere. The blind spots must be acknowledged and questioned, even if we don't feel those spots exist.

Prior to getting his glasses, Jonathan spent a lot of time looking at his hands. It was the only bit of his world that he could see clearly. I wonder what we can do to think more broadly, to look beyond ourselves, to earn a new perspective.  I wonder how many of us, given the chance, would aim for that perspective. If we're going to be honest, we'll admit that it is easier and less painful to fill in the blind spots in our head than to turn that head and seek new clarity.

These are today's lessons learned from my micropreemie, and today's challenge.

Thursday, January 8, 2015

How a third year of isolation was the best thing that happened to us

If you are a parent of a preemie, especially a micro-preemie, then you know about isolation. This year I've decided that it's the best thing that has happened to us. It took me until now to come to that conclusion, but I've no doubt that it is grand. If you are sinking in winter blues, take heart. It's worth it.

And if you are a JAM fan -- this post acts as an update on his growth and development. Enjoy, and thanks for your part in his story!


"Go, go!"
Earlier this fall I had it all figured out. Play groups, story times at the library -- I had arranged it so that every other day of the week held an adventure for me and my former preemie. I figured he deserved it. Two winters of isolation for a kid who loved people -- it had been rough. But, now he was two and we were DONE. No more synergist shots. No more isolation. Sure, we'd be careful, we'd wash often, we'd keep him away from sick people as much as possible, but we didn't have to bend our world around his preemie lungs anymore. We could go to church as a family, because he could be in the nursery. We could go to story hour at the library. We could arrange regular play dates. We loved the freedom.

Sure, he got a cold every other week, but kids this age do. No big deal.

Except that for him the colds took forever to go away. He'd barely recover from one before he'd catch the next thing going around.

And by mid-October, all of that illness moved in to his lungs.

He had pneumonia.

We caught it early enough. Armed with antibiotics and inhalers, we kept him out of the hospital. But that was it. His pediatrician put her foot down.

"No more nurseries. No more grocery stores. No more restaurants. No more libraries." Our son was back in isolation. "Just through the RSV season," she said. In our area, that's nearly half the year.

It felt like a death sentence. I wanted to cry. No, no no. This wasn't fair. My son FINALLY had it all together. Eight surgeries his first year left him weak. In his second year, failure to thrive due to undiagnosed acidosis left him extremely lethargic and small.

FINALLY we'd figured it all out. He's on the right meds, he's growing. FINALLY he's acting like a normal toddler, curious and energetic. Finally I had hope that he'd start to catch up. and being around people only helped - because if my son loves anything, it is performing for a crowd.

His doctor was taking away that crowd.

Did I mention that I nearly cried? Because I did. Over and over again, the isolation hit like a lump in my stomach. This wasn't fair.

Jonathan didn't help things. He'd crawl to the sliding door and point out at the cold snow falling and say "Go, go! CAR! Going? Go, peee [please]?"  He'd watch his sisters leave to do fun things, and I could tell that with all his being he wanted to follow.

And again I'd have to tell him we couldn't go, not anywhere. It was too cold to walk, and being in a new town meant that we didn't have any other friends homes to visit. No other places were safe for him.

On Sundays we split squad again, like we'd done for the previous too years, One of us took the girls to church, one stayed home with JAM. And no matter where I ended up, church or home, I fought the tears. It is worse this year, since a new town means a new church. We know nearly no one, and I'm a certified social introvert. I want to know people, but it small talk drains me. Twice a month I meet the same dozen people over again, and still do not remember their names. It is so defeating.


First of all, forget RSV. Have you seen the statistics on this year's flu virus? It wants to hit kids like JAM. And SOOO many people around us have gotten this flu. But he's still well. I think because he has not been exposed to the germs. At our last weigh-in with the doctor, I thanked her for isolation for just this reason. (She, in turn, marveled at how many words he had started saying.)

Second, a healthy toddler is a more active and curious toddler. I didn't realize it until he got over his pneumonia, but this kid loves to move. With the lethargy from his acidosis (RTA) last year, I guess I'd just sort of assumed that he was a laid back kid. This fall as he fought off cold after cold, I thought he was ridiculously alert and active compared to before the RTA diagnosis. But (little did I know) - he was still operating at less than 100%. 

Thanks to isolation, my son is healthy, active, and curious. Sure, he still hates it when he is stuck at home, but he is growing by leaps and bounds.

Today proved that to me.

A month ago we had a consult for an in-home physical and occupational therapist. "He can't release things," I explained, "he will only throw them. I know this frustrates him, but he just can't figure out how to put things down gently. He can't do puzzles. He has a hard time sorting shapes. He walks, but he can't stop and just stand unassisted, he won't hold anything in his hands while he walks, and he won't bend over to pick something up" I said. "He can only climb furniture if I put a cushion down so that he can climb half way at a time. He doesn't talk a lot."

The occupational therapist stopped by today. As soon as she walked in, J looked up and said "Chechur!" ["teacher!"] and got a big grin on his face. He'd never met her before, but I told him that a teacher was coming. He had remembered. Immediately he started showing off. (He's figured out that teachers are there so that he can perform for someone.)  He walked around the room over and over again. He STOPPED mid-walk to redirect his steps another direction. He picked up his favorite car and brought it to the windowsill. Reader, this is a big deal. HE WALKED with a toy!

The elephant shape sorter. Photo and sorter by infantino.
When he tired of walking, he climbed up on a chair (no cushion for assistance needed, thank you very much) and took his elephant shape sorter out and started sorting shapes. The OT saw the shape in his hand and said "that's a circle. Look for the circle" and he turned the belly of the elephant past a triangle, a hexagon, and a square until he got to the circle. Then he put the circle in the elephant. That's right, he RELEASED a toy.Then he tipped the nose of the elephant to get the circle back out so he could do it again.

I was floored. He was doing everything we told the therapists he couldn't do.

Not that he's suddenly miraculously on track, he still has a long way to grow, sensory issues to overcome, and a core to strengthen -- but this month has been incredible, unbelievable, fantastic.

And I have no doubt that he would not have gotten here without isolation. Staying well has kept him growing and learning. We have three and a half months to go, and while I'm not excited about the cold snowy days, I am excited to see where he will be when we reemerge with the tulips.

Wednesday, January 7, 2015

A thank you to our secret "Santa"

Remember a month ago when I posted about toys & games for CP/PVL kids? Did you see that comment where I especially coveted a certain item?

That item came anonymously in the mail a few weeks later.

And because I don't use my "real" name on this site, I know it must have been sent by someone who knows us personally and loves our son.  I just don't know the identity of that person.

So, dear "Santa," whoever you are, since I can't send you a note, here I say -- THANK YOU. J loves the blocks!

National Blood Donor Month

In honor of the brave souls who bare arms for our weakest, who dedicate their time and their veins to save those who don't have enough, thank you. Thank you to blood donors everywhere.
JAM & his sisters today.
This life made possible by blood donors.
This post (on PreemieBabies101) is in your honor.

You've saved my son's life more than once. When I was not able to give, you gave for him. You are heroes. Pass it on, encourage others to give.

(More on blood donations and preemies in this JAMmin' news piece.) 

JAM receives whole blood in preparation for surgery for NEC.