I got no tube to hold me down.

Tomorrow will mark week 6 of feeding therapy for Jonathan.
Today he ate all his meals by mouth.  It was our first day doing a home meal, and he did okay with it. Some gagging sometimes, yes, but smooth and in. No vomiting, no major behavioral issues, just sitting and eating (and playing) like a big kid.

He still will need his tube for overnight hydration (because of a kidney issue) but he doesn't need it during the day anymore. Let's hope this sticks!

Cheers,
Jonathan's mom

The last 2+ weeks of intensive feeding therapy

Since my last post, JAM has taken a dry spoon (seriously, and no sweat! He just DID it) and then was slowly introduced to one food, then continued to increase volume of food until it was a full spoon, then added a second and third and now (just yesterday) fourth type of puree, one food at a time with the bite sizes slowly increasing and the amount of time allowed at each sitting also slowly increasing. Bite of food, reward of preferred toy, drink, reward of preferred toy, and repeat until the meal is done. All negative behaviors have been ignored, and it's worked. Negative behaviors are now all but non-existent. (He still lets us know that it's hard. He still shakes his head, says "no," and sometimes gags -- but the incidence of negative behaviors has dropped remarkably.)

This week I walked into the therapy room for the first time. Not for a meal, just to try to see if he'd let me brush his teeth the way he's learned to let (and trust) the therapists to brush his teeth. (WHICH, in and of itself is a huge accomplishment of the last few weeks: teeth brushing with wet brush, teeth brushing with toothpaste on the brush, teeth brushing while standing at a sink, and now today teeth brushing standing at a sink with toothpaste and MOM doing the brushing instead of the therapist.)

And he did.

Dentists, this kid would be your favorite patient. If you ask him to open, and put your finger right on his chin (no pressure needed) he opens REALLY WIDE and stays open as you count a slow "one two three" and brush his top right teeth, "one two three" for the bottom right, and on for the top left, bottom left, and front top, bottom top. Total of 18 slow counts. I don't think I would have the patience or ability to stay open that long without gagging. But don't tell my son that.  A month ago we had to force-brush his teeth. He wouldn't open at all.

SO, that was huge.

And then today again, another big achievement: he ate an entire meal by mouth.  All purees: a protein, a veggie, a fruit, and a high-calorie drink.

I was on the other side of the one-way-mirror doing a happy dance.

He was so excited he did a happy dance after therapy too, all over the family room, giving hugs to other kids, dancing in circles, and then (as we left to go home for the day) working himself into such a fit of happiness and excitement that he started breathing too hard. Then coughing. Then... well, "easy come, easy go."

Oh well. At least he got it all in by mouth. Next step will be to KEEP it all in.

Then after he gets used to tomorrow's new food (so in a day or two) I get to enter the room and be a part of his meals again.  Slowly they'll transition me to being in charge of the food, and maybe by early next week we'll be able to eat plated meals at home. (Meals are plated, carefully weighed, measured, and analyzed to be sure that consistency of food is similar across the board. Purees must be absolutely correctly pureed. I failed the first three times I tried.)

So far this slow, controlled therapy is working, though. These folks know what they're doing. One month down. I'm excited to see what happens in these next three weeks.

Second full week of Feeding Therapy

The battle of the wills continued last week. At the meals he kept being asked to open his mouth. That was it. Just big quiet opens. He did that zero - that's right, no - times at one meal. Instead he double-downed on all the violent resistance he could muster. The timer beeped after ten minutes and then, after a very long minute or two, he finally opened, and then therapy was done. I believe this was last Thursday (so day 7).

The second meal that day, he opened once within three seconds. A second time within fifteen. He fought a little after that, but did great. They instituted a new therapy tool to further motivate him. But more than that, it was that the fight had been fought and he saw he couldn't win. So he let go all attempts to control.

By Monday (day 9) he was doing nice wide opens without much resistance and they were able to introduce a straw to the picture. He did great with that, so on Tuesday (day 10) they introduced actual liquid in the straw. He has to keep his mouth open while they insert a small amount of the milk/yogurt mix into his cheek. Then he closes and swallows when they say "close."

The psychologist and I sat on the other side of the one way mirror on the meal where the first tastes were introduced. I watched him stare hard at the bottle, previously empty but now at this session with formula/yogurt in it. "Do you think he notices the liquid?" she asked. "OH YES," I responded. And then we watched while the therapists re-established his wide opens and his acceptance of the straw. Then she moved to putting a taste in his cheek. On the other side of the mirror, we waited for the melt-down to begin.

He gave her a funny look. He swallowed.  And then he went to play with the toy he gets as a reward for his work.

The psychologist and I stared at each other in disbelief. "WOW!" we both said.

He has had yogurt before. He's had this milk formula before. These are not new foods. But the therapist had total control, and that WAS new. And he was OK with it. And that was shocking to us.

The last two days have involved slowly increasing the volume of that drink. Today at his largest "meal" he had 20 ccs. That's less than an ounce. But it was SOMETHING.

He doesn't like getting the milk/yogurt in his mouth, but he accepts it.  They're still practicing nice wide opens without food so that if he does regress, there's a firm foundation still established. Every other bite is a real bite, though, and he's doing GREAT.  He takes the milk in his cheek, closes his mouth, swallows, and then says (sometimes more loudly than others) "NO NO NO NO." And then goes and plays with his toy. Resistance, yes. Displeasure, yes. But acceptance.

One of his new friends at therapy school declared, as soon as she heard about his good meal, "OOH!  He did good work! That means he gets to go see the fountains!" Fountains are J's favorite. Fountains, waterfalls, oceans... you get the idea.

It was so super endearing that she remembered this that we decided we'd ALL go see the hospital's fountains as a reward for J's good work. So the little girl, her mom, me, and Jonathan all made a trek to the fountains a few blocks away. It felt nice to be able to reward him.

Next week they will introduce the spoon.  THAT will be where the real battle begins.  But this week, and even (especially) last week's struggling, has paved the way for success when that step is introduced. Spoons, and the things held in spoons, are by far Jonathan's least preferred way of getting nutrition. But they are also what we will be doubling-down on in the future.

We are encouraged.

And, as an unexpected bonus, yesterday, for the first time in history, our child opened his mouth willingly for his nightly tooth brushing.  He even said "ah!!" when he saw the toothbrush.

It's been a good week.

Feeding Therapy Day 5

Short of it: More resistance. We've settled on passive resistance. Lots of not doing what the therapist asks and just calmly waiting her out. She always wins. Usually after about three to five minutes of them both calmly waiting and her reminding him of what to do, he'll finally open his mouth.

BUT it's still a battle of wills. And it's still taking a toll on him. So he, in turn, takes a toll on everyone and everything else. Before his first therapy session he hit a little girl whose only crime was that she was trying to be his friend. After his first therapy session he was in a very destructive mode, ruining another little girl's puff ball ghost (luckily she neither noticed nor cared -- and truth be told, the child life specialist had done most of the work on it) and throwing every piece of paper within his reach. He was in the middle of a tube feeding at this point, so when he'd destroyed everything else, he zeroed in on hitting the tube. Over and over and over again. ALL abilities to self-regulate and do what was right seemed to be gone.

I removed him from the play area for a nice long quiet time in his room. We turned the lights low and focused on his favorite toys. That helped keep the destruction to a minimum. I kinda cried. By "kinda" I mean I sobbed.

And then tonight I PRed on a 5k. I was not running a race. Just me running for myself. And it helped.

I am not a seasoned runner and I always run slow. But I have to run a little this week, because I'm running a marathon this weekend. I'm glad I had to run because of how much it helped me relieve stress.

J's journey has been and (through feeding therapy) will continue to be a metaphorical marathon. As we hit hard days, it's good to remember we're not alone in our struggles, and it's good to work to help benefit other people. Oh yeah, and it's good to run. Because it helps with stress.

Feeding Therapy: Day 3 & 4

Day 3 and 4 of feeding therapy were much the same, with day four being harder for us.

Day 3, session 1:
Review Day 2 lessons (allow therapist to touch face and chin for up to three seconds).
Do REALLY good at that. WAHOO!
Move on to:
****************
Learn that one should open one's mouth when given tactile & visual cue.
Refuse to open one's mouth.
Cry. Scream. Beg for help. ("help me!" and "momma!!" -- but of course I was no where to be seen, so he didn't really expect me to come. I was on the other side of the one-way glass mirror praying fervently. "just please let him open his mouth." and chanting in my head "please buddy, just do it, just do it, you can do it") He'd also tell the therapists to "be nighk" (be nice). And then thrash. If he hit or hurt them or himself in the process, so be it.
Open one's mouth, begrudgingly.
Get toy and praise.
Repeat from *************

Day 3, session 2:
See Day 3, session 1. At one point the therapist said "Open your mouth" and J shouted back from clenched teeth "I'm TRYING!!!" Not quite good enough.

Day 3, session 3:
See Day 3, session 1, after the ***********. It was very clear that he both understood what needed to be done AND wasn't willing to do it.

In between session one and session two he went to a nearby therapy gym and climbed and slid and swung and had a DELIGHTFUL time. He LOVED IT. And, bonus for the ASL part of our journey, when we went to get on his shoes afterwards, he said "goog" and signed "shoes."  Communication WIN!  The day before he'd "read" his first word in a book, it was the word "balls" -- he read it in braille, but that doesn't matter (he's learning both) the point was that he made the connection between print and meaning, so I was feeling like this week was a pretty big "win."

In between session 2 and 3, he slept.

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Day 4, session 1:
See Day 3, session 1 (after the *******). Then after about two minutes of trying and failing, he gave a NICE easy WIDE open mouth. Got his toy. Then she asked him again, and after only about five seconds, he gave a nice wide open mouth again. Calm hands, no screaming. Just and absolutely compliant.  Things were starting to move along. He was GETTING it. Then he decided to fight again. It didn't work, timer beeped, he opened his mouth one last time, session done.

Day 4, session 2:
Having failed at the flailing technique, and still not having any interest in opening his mouth on command, my ingenious son chose a new form of resistance. He sat. hands calm by his side, and refused to engage the therapists. He wouldn't look at them, wouldn't respond to their tactile or verbal requests. Wouldn't even lift his eyes. He looked half asleep. The therapists kept her finger on his chin (her tactile cue) and he just ignored. For, like, a long minute of passive resistance.
That didn't work either. So he opened his mouth and got to play with the toy. Then he tried the passive/ignore technique again. The therapist waited him out and she won. Seeing that wasn't working, he alternated between the two techniques. At the end, after a long two minutes of refusing, the timer went off indicating the end of therapy. He wouldn't be allowed out of the chair until he did the task they asked of him, so after another long twenty seconds, he sighed, said "OPEN!" and opened his mouth wide for them.

Day 4, session 3:
I woke him up 15 minutes before his session so he'd be ready for his therapists. He wasn't having any. He was cranky. He didn't want his hearing aid, and barely wanted his glasses. The hearing aid became such a fight that we sent him off to therapy without it. But that fight set the stage for the therapy that followed. Every open mouth was a fight. Now, don't get me wrong, the THERAPIST didn't fight. She just sat there calmly, finger on his chin, reminding J every now and again that his job was to open his mouth. The fight was between J and himself. And it involved LOTS of thrashing and screaming and begging. His mouth only opened every two minutes or so. Most of the session was a battle of wills. Very little of it was playing with toys. Because that's what J chose for the day.

In between session 1 & 2 we explored a new play area with one of my friends. Story time was a part of the process. J was only barely okay with story time. It was in a loud open room with echoing walls. When the SECOND story came on, a book on tape instead of a live person reading, he had had enough. He stormed out, found the quiet play room, and played with the calming noise machine. It only sort of calmed him, though, and as we left the play area, he was in tears. We never figured out why. (He started crying before we started leaving.)

He slept really hard between session 2 & 3,  but in the bits of in between time, for the full day, he was fit-to-be-tied. He threw trains, threw himself on the floor, or (in his better moments) isolated himself in a corner away from kids with one toy and played just with that toy, ignoring the rest of the world. He was a right mess.  At the end of his last, and least successful therapy session to date, he ran up to the wall and hit it SO HARD with his hands that the therapist asked if the sound hadn't been made by his head. Nope. Just his hands. Because he was just that frustrated.

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I echo Jonathan's feelings.  It is ridiculously hard to watch your child cry, head bang, clench and grind his teeth, scream, and beg for your help. When NO ONE is hurting him but he seems to think he is being tortured, and when you realize that that torture is coming from someplace deep inside himself, some visceral response to the complex medical life he's lived, it takes a part of a momma's soul and wrenches it practically in two. A thread holds the two bits of sinewy soul together, I have hope and I trust in the process. I know that these professionals KNOW what they are doing and EVERYTHING he's doing is a step toward independence and self-care. He can and WILL get this. You'll see.

The therapists state that these fights are normal, that it is good that he's moving on to a different tool to fight with, it means he's working his way through all his tools and techniques for resistance and soon will realize that resistance is futile.  Okay, those weren't quite their words. But the point is, it's normal, it's part of the process.

But I still hate it.

And so does he.

I came home worn and in desperate need of hot fudge on top of frozen yogurt. It's an unseasonably warm day, so the day agreed with me too. But there is no chocolate in our house, so instead my loving partner took J to the playground to unwind and I wrote this therapeutic post.

J came back moments ago, much happier. Here's the picture to prove it.

Feeding Therapy: Day 2

Today was our first full day of feeding therapy boot camp.

Jonathan arrived with plenty of time to play a little before his first therapy session. But instead of playing he mostly just STARTED to play and then threw mini-fits here and there.  It took me about ten minuted before I realized that (DUH!) he was STARVING. I had one hangry kid on my hands.

The first feeding session reflected all his hanger. The therapist worked with him one-on-one in a room while I sat with another therapist behind the one way mirror. Jonathan got very mad at the therapist any time the task was anything other than him feeding himself a graham cracker or her helping him with his water cup. If SHE TRIED to feed him ANYTHING, yogurt, cheese, or even his favorite food -- the graham cracker -- he'd melt down. If she OFFERED him any food other than graham crackers, he would ask for graham crackers. If they were withheld, he'd melt down. He flung his arms. He shouted "stop it," he begged to be let down.  It was a short session, only ten minutes, but it was hard to watch.

The rest of the day, however, was fabulous. After that initial assessment, they knew EXACTLY where they needed to start with Jonathan, so the next feeding session would mark the beginning of therapy. And for him therapy will start at the VERY beginning (more on that in three paragraphs).

In between sessions the child life specialist took Jonathan aside to decide what the most incentivizing toys would be for him. There was a clear winner. The boat that had holes in it where balls could go down a ramp. I don't have any better name for it, but here (click) is a picture of it. That boat will be the key to his future caloric intake.

And, just so that we wouldn't ever be bored, between sessions I was also pulled aside by the dietitian. She went over all the new supplies we needed to buy (I'll be online shopping soon -- don't have time to go to the store for these things) and gave us an overwhelmingly large packet potential recipes for future meals.

And then there was plenty of time for play. Jonathan hung out with hoola-hoops and friends, ran up and down the hallway, took a toy car for a drive, and snuck in a little "school time" (we practiced matching shapes and saying / pointing to the letters in his name). Then it was time for the next session.

The second feeding consisted of no food. The therapist started at the VERY beginning. For Jonathan that meant that he allowed her to come near his face and trust both her and the process. First he got to play with that fantastic boat while sitting in the therapist's lap (because he refused his therapy chair -- it reminded him of the morning session). After a few minutes, he realized it wouldn't be all that bad, and he let her put him in his specially designated feeding chair. Then it was work time. Today that means the therapist touched his cheeks for one count. Then he played. Then she said "work time, then play time" and again touched his cheeks for one count. After a time, that moved up to three counts, then the under-the-lip hold for one count, and by the end of the session, he allowed her to hold under his lips for three counts while sitting calmly in the therapy chair. He was a fan of the play time, especially since she would also sing songs to him during these reward periods. He didn't mind this session at all, once he realized the boat would always come back to him.

Then, after we gavaged his lunch, it was nap time. He napped well and hard. I had to wake him for his third feeding which was basically like the second, only the whole time they worked on the under-the-chin-three-count-hold, and he wasn't as tolerant. Their goal was to get him to a. not resist and b. keep his head up. He struggled with both. Sometimes he'd be a champ and super easy going, other times he was in the middle of a REALLY COOL idea with the boat, and he was REALLY REALLY upset that she was stopping him from playing, so he'd melt down and say he wanted to get down and go home. He learned that he couldn't win, that he had to sit for the count, and that if he complied, he got the reward sooner. He was also reminded him that he got to go as soon as the timer beeped.

If any of you have had to potty train a stubborn toddler, you have some idea of the psychological game that was being played in that room. Only, gratefully, these are trained therapists. They're really good at keeping their cool and, ultimately, winning for the both of them.

Once the blessed beep came, he ran back out to the waiting room, where I was sitting (having snuck out of the booth several seconds before) and asked him how he did. He told me he got to put balls down a ramp. He was very proud of himself.

That was it for feeding therapy.

He has a sedated procedure in the hospital tomorrow morning, so we went straight there from therapy so that he could be hooked up to IVs (something he has to do any time he goes off liquids, because of his genetic kidney disorder). So, no updates on feeding therapy tomorrow. Expect more Friday.

He is starting to get the grove. He truly LIKES the other kids in the program, and didn't even hit any of them out of excitement today. Instead he just ran around with them and laughed animatedly. Definitely a "win" for all.

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.