Come see me live

This blogger and storyteller will be performing at Listen to Your Mother! Come join me.

Here are the details:

Celebrating Mother’s Day and benefiting Safe Shelter for Domestic Violence, the live storytelling stage show that gave local motherhood a microphone, Listen to Your Mother: Southwest Michigan, returns to the St. Joseph High School stage for its Grand Finale on Sunday, May 7^th at 4:00 PM. Early bird tickets ($15, general seating) on sale now at https://ltymswmi17.eventbrite.com. Admission at the door $20. Brought to you by the dynamic production duo: Beth Haire-Lewis and Kim Jorgensen Gane.

Graduated!

Since the last post Jonathan has continued to eat everything by mouth. He now can have PB&J sandwiches, crackers, cheese, mac & cheese, spaghetti, etc. He's graduated from feeding therapy, and while we're continuing to work with him daily to increase his ability to chew, he's doing great. He's even coming to us and REQUESTING food when he's hungry. Amazing.

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:
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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.