Feeding Therapy: Day 1

Jonathan started intensive feeding therapy today. It's best described as a feeding boot camp.  All day, every week day, for about two months, Jonathan will learn to overcome his fears and challenge his body to perform feats he never knew he could.

Today was: Exciting and exhausting.  It was only a half day, but I'm ready to sleep (and it's only five and the laundry isn't done yet.)

First Jonathan played with trains and I filled out paperwork and discussed procedure with the social worker.

Then Jonathan and I unpacked things into his room, a small and well-insulated room with a pack-and-play, two chairs, a side table, and a cupboard with a lock. Jonathan discovered that the light switch was a dimmer. As I tried to unpack the items we'd brought from home, he worked REALLY hard to keep the bedroom ALWAYS dark. Did you know that the time it takes to get from the lightswitch to the cupboard in that ridiculously small room is ALSO the amount of time it takes for Jonathan to move the dimmer switch from the "full on" to "pitch black" setting?

When we were (finally) done with THAT delightful game, Jonathan drove cars up and down the wall and we got acquainted with other families that are a part of the program. There are about four or five other kids enrolled right now, so it's a small program. But intense.

At the prescribed time we were escorted to a room where they carefully weighed everything I was thinking of giving to Jonathan. I fed Jonathan in a "normal way" while people stared at us through a one-way mirror. Jonathan did not know I was there.

Jonathan was a champion. He ate two or three ounces of graham crackers, downed four to six ounces of water, and even had a few bites of apples. He didn't refuse anything and kept eating for about fifteen minutes or so. We chatted about this and that. It was a delightful, and perfectly normal, toddler experience. At the end they weighed the food that was left, did a little math, and charted his consumption. OUNCES, entire OUNCES were consumed.

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The experts behind the one way mirror asked if this was typical. I confessed it wasn't. I confessed that he only this week decided bites of apples were okay, and the novelty hadn't worn off so he was still willing to take those small tentative bites. And the graham crackers?  They're his manna from heaven. And if, like manna, he could live off of it and only it, he would.
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He went down for a nap in a pack-and-play in a side room that would be "ours" for the next two months. I put a dinosaur sheet over the top and told him it was a tent. I hoped that he'd decide this was "cool" and NOT "baby," because they'd run out of beds and this is all we had. He actually slept. We'd only been there a few hours, but it was a LOT to take in.

I spent a half hour reading over entrance paperwork and then went into a forty-five minute conference to discuss how things had changed with him since they saw him last April.

When Jonathan got up, it was time to eat again. This time cheese (an old favorite, but not a NOW favorite), fishy crackers, and kidney beans (again, something he USED TO eat) were on the table.

He ate three bites of fishy crackers. As I offered the other food, he neatly put the beans and cheese into a container that I think he decided was his "no thank you" spot. This is A HUGE WIN as he would have, in years past, tossed it and thrown the HUGEST fit about me even THINKING about giving it to him. So "yea" for us there.

He then downed two ounces of water, got mad at the water cup for being empty, and tossed the cup and threw that fit. It was short lived, only about fifteen seconds, but it marked the end of our second feeding experiment. I tried to feed him any of the options one more time, but he wasn't having any.

"So was that more like a typical meal?" asked the woman behind the mirror.
"Yes" I responded.

And she didn't even weigh out the food to see how much he'd eaten.

THEN it was time to sit in the family room again and gavage (feed by g-tube) the rest of his meal.

By this point Jonathan was REALLY REALLY excited about his new school. He had the hugest grin on his face and his eyes kept flashing at everything. But mostly at the two kids, about his age and size, that were playing with the car ramp that HE, just hours before, had ALSO been playing with.

"I want OUT!" he implored.

And I told him he need to get the rest of his meal. I guess I'm mean like that.

He thought it would go faster if he would repeatedly hit the feeding tube, faster and faster, with his hands. He made a REALLY big show of it, so the other kids would notice. He did it even more when I told him to stop, when I reminded him that all that splashing in the tube would not ONLY make it go slower, it would also make a mess. He timed his shots perfectly so, just as I took my hand off the top of the tube to add more milk, SLAM, the tube would be hit and any remaining milk in the bottom of it would GRACEFULLY arch its way over our heads to the floor. "A RAINBOW!" he declared, with a wide grin.

He was having the time of his life. All restraint had been abandoned to the excitement of the moment. So when I let him down to play nicely while I packed up the rest of our things for the day? He very quickly found his way to the two kids, and decided that ROUGH HOUSING was WAAAAY more fun than "playing nicely." He wanted to make himself KNOWN.

So he earned a time-out, and I was yet again grateful that he had his own room.

We got home, I wrote this, and then I promptly went to bed... in my dreams. Really, I started packing for the next day (we have an overnight hospital stay tomorrow night, not feeding related, but it'll start once feeding is done) and doing laundry and dishes.  Oh, and maybe saying "hi" to the other members of our family.

We're tired. And the actual THERAPY hasn't even started yet.

Latest article

For those following me only through this blog, here is a link to my latest article, about taking time to enjoy our special needs kids.

http://www.preemiebabies101.com/2016/09/delight-despite-delays/

ENJOY.

#whyisign

There's a movement out there encouraging people to share why they sign (use American Sign Language).  Here's my contribution to that story, and a little update on our little guy.

Photo of child in retro toy car, watching a girl sign on TV

We didn't cry when we heard about hearing loss in our preschooler (last summer). We rejoiced. We didn't know where it was coming from, but we finally knew how to help him. We could learn another language for him. We could help him understand. We would become bilingual.

Then we hit road blocks. We were told it was only mild loss. That it was unilateral. That we didn't need to sign, because he'd hear enough through his good ear, and once he had an aid, he'd know where to look. This sounded like good news, but didn't match up with our day-to-day experience. We were told that he wasn't deaf-enough for a d/hh (deaf and hard of hearing) preschool. Don't learn sign, said the ENT (ear doctor). Whatever you want to do, shrugged the audiologist.

We heard what they were saying, but then we watched our toddler son. He sat in my arms and pulled our faces close to his when he'd tell us an important story. He'd stare at our lips. He'd misunderstand our words, but he wanted SO MUCH to understand and be understood. And we didn't want to lose any more time.

So, shakily, with embarrassing mistakes and unsteady hands, we started to sign. It wasn't all right, it wasn't all good. The words came out of my hand in faltering, jerking, unnatural movements. Sometimes unnaturally loud, sometimes lacking all emotion. A lot of times we signed was with our voices going, and so it really REALLY wasn't ASL, it was signed English.

But it was something, and he was responding. He was picking up language, he was asking better questions. Once his sisters started using their hands, too, he started to sign back. We began turning off our voices at family gatherings. Even though he could hear, we were going to become bilingual.

Unnecessary? Maybe. If his level of loss stayed the same, he'd probably prefer English and never attend a Deaf school. But I needed to learn to change MY outlook. Change "might become deaf" to "might become Deaf," and suddenly it's not bad news. Deaf (capital D) indicates a culture, a community, a world of other people with a rich history and language. Make Deaf acceptable. Make Deaf FINE.

Just recently, just six months after the first test, he was tested again. The mild loss now looks to be moderate. It's now in both ears. The cause, while still unknown, is suspected to be genetic. And while so much is uncertain, it might continue to get worse.

For the first time I heard an ENT say "learn sign," but then he said "but you don't need to learn ASL. Just learn baby sign, so that he can express himself better."

The ENT didn't know that ship had sailed. Why would we give him a town when we could give him the world? We'd already started our journey, our course was set. If our son was going to come half way, pull our heads toward his and read our lips, we could close the gap. In fact, we could go beyond the gap, and we could make this wonderful.

Our son may be moving from hard of hearing to clinically deaf. Maybe not. But either way, we aren't worried, because through the Deaf Community that has gone before, we have been taught the difference between the poor deaf boy and the proud Deaf child. And we intend to pass that along to our son.

We sign because we love him, because we want him to feel connected to the world around him, no matter what the future holds. This is my #whyisign.

Rare Disease Day: Thanks Docs! From a Mom Parenting a Zebra

There's an old bit of advice given to doctors. If it has four legs and a mane, and you're not in Africa, it's probably a horse, not a zebra.

In other words, when diagnosing a patient, don't look for the rare diseases first, look for what is most common. And that makes sense.

But what happens when your child IS a zebra?

Today is Rare Disease Day, so in solidarity with other parents of rare disease kids, I offer up this ridiculously cute picture that sums up our world.

Photo of boy reading newspaper

Being the parent of a zebra means
a. lots of lab draws and appointments with specialist (in this photo he waits for yet another blood draw to test kidney levels)
and
b. (if you're a parent like me) lots and lots of research and reading whether it's
-- reaching out to the fifty other parents nation wide whose kid is like yours
or
--reading (and trying to comprehend) journal articles and college textbooks to learn the anatomy and medical language necessary to understand the lots of lab draws and appointments with specialists (see "a").


But don't feel sorry for us. The rewards are greater than the costs. I think that is ALSO summed up in the ridiculously cute picture above.

Happy Rare Disease Day. Thank you to all the doctors out there who are studying these rare cases. You're helping us find ways to make life as great as possible for kids like mine.

Don't be sorry _____ , because I'm not.

Did I tell you my son has hearing loss? Oh, right, I haven't been putting a ton of his medical stuff up here over the past year (mostly because lots of it is up in the air and has nothing to do with prematurity).

THIS post (click on link) has nothing to do with hearing loss, either, but it could. I could easily re-write this article to say "Don't be sorry my son is hard of hearing, because I'm not."

So for those of you who have kids with special needs -- be it blindness, deafness, need for AFOs, etc, how do you approach those needs or the people around you who make comments? How do you respond to the "I'm so sorry"s that you hear?

Out of the bubble - we caught RSV. But it isn't as bad when you're three.

My son got sick. He was so cranky that we went in after just a day or so of illness and found that he had an ear infection. After three days of antibiotics and several renal panels because he was acting just that weird, we went in for another check up at the doctor's office. She was concerned about his oxygen saturation and sent him in for overnight motoring at the hospital. I thought it'd be a quick stay.

That night he was put on oxygen. For two nights and the better part of his second day there he needed oxygen. On the third night he finally saturated normally so we were able to go home.

I knew we'd have to leave the bubble of isolation eventually, and I knew that with a micropreemie that came with risks. The first year of preschool is hard for any kid. My older kids were sick every other week at preschool. By comparison Jonathan's been doing pretty good. He had croup, a cold, and now RSV/an ear infection this school year, but that isn't too bad.

But this reminded me of a few important lessons for you micropreemie parents:
1. RSV is no small thing! If it can kick a three and a half year old former micropreemie hard enough to hospitalize them for four days, then your younger preemie could be hospitalized even longer.
2. Lungs are still developing in infants and toddlers. Keeping their lungs safe from illness and infection now is helping develop lung strength for the future.
3. Isolation IS hard, but there's an end to it. It's worth the investment.

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 http://www.foodallergy.org/home

THE TEAL PUMPKIN PROJECT IS FOR MORE THAN JUST FOOD ALLERGIES.

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.

THE TEAL PUMPKIN PROJECT HELPS "TUBIES."

"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.

THE TEAL PUMPKIN PROJECT HELPS CHILDREN WITH DIABETES MELLITUS.

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

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