I can't think of a better way to celebrate learning how to eat than a bowl of chocolate ice cream. If you haven't tried it, Jacob would like you to know it is to die for.
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Time to pack up our gear and go home.
Out with the old...
And in with the new...
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Breakfast... milk and a little yogurt. Who knew this is what eating breakfast would ever be like.
Also. We are so down with this sippy cup thing, we can even do it in the cart at the grocery store. (Because at this point folks, when Jacob signs 'milk' he's gonna get it no matter where we are.)
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DAY 9
Day 9 ended in tears...
Happy happy tears. Unbelievable.
Are we done? No, of course not. It took 2.5 years for all of us to teach ourselves how to feed our 2.5 year old bodies. Jacob won't learn how to do that completely in a week. Not being dependent on the G-tube in a week though is remarkable. Understanding his own role in controlling how he feels is transforming even in such a tiny little person. The look of satisfaction and accomplishment on his face is all sorts of precious and amazing. The pleasure of confidently and safely filling his mouth with cold delicious milk is all his.... these little joys in life we never think twice about.
We still have a long road ahead of us watching weight stabilize and then monitoring gain.... working with food and flavors and improving the milk/food ratio of his intake... not to mention figuring out how this spoon thing works... because he desperately wants to do this by himself too...
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One more day. Final meetings... final therapist visits... follow-up plans... guidance for us as we plan to head home and his caretakers too ...Miss Emmy and Grandma.
We are no longer in the 'we are getting there' category. We are well on our way.
What a difference a day can make!
One of the things worrying Jacob's parents (among many other things this week) is Jacob's recent refusal of food. While he never really ate a lot (only a few bites at a time) he also never refused it, never swiped away the spoon, and never threw the bowl, etc. on the floor. That started to happen a few days ago. Now we know he was mad, but that particular new behavior in the midst of a tube wean program in which the goal is to learn how to eat was really worrisome. Even here the first couple days he did ok(ish) with food but then it went off like a switch.
Ok.
Enter tube wean specialist and PhD child psychologist stage left. Also, as an aside, a very tall German who Jacob is so fascinated with. The first time he met Jacob he crawled into the living room so they would be at eye level. And that wasn't quite low enough so he got on his stomach. Really great!
Anyway, he says the child leads the way, Jacob is master so to speak. His assessment along with the others on the team was that Jacob was into this drinking thing and he was trying to master his sippy cup and we were over stressing and irritating him by adding the eating skill at the same time. So wait. Just wait. Another of the team members reassured us... He likes food, he's not bad at eating, he will come back to it. Give it time.
We were allowed to offer it but if Jacob refused be respectful and stop. Which we did, Day 4, Day 5, AND Day 6. Total refusal of any food in any form.
Patience. Patience. Patience.
Day 6 was the big breakthrough with the sippy cup.
Day 7 we had a busy day planned because we needed to drive back home for a pediatrician appointment and for whatever reason we woke up thinking... ok, it's going to be a crazy day on top of what is already crazy... let's try hard to replicate our normal home routine as much as possible all around the crazy. So we did. This normal routine also often includes Grandma offering practice bites mid-morning. Sweet potato most often. And without Mom and Dad around. So that's what we did. While Jacob's parents got everything ready for our trip to the pediatrician, Grandma braved being treated to the little defiant hand and tried to offer food.
Gasp. No refusal.
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Grandma did a very good job not crying in front of him because she was so happy and Mom and Dad did a very good job ignoring what was happening and staying busy doing our thing (although peeking around the corner every chance we got).
Now don't get me wrong, this wasn't a day 6 sippy cup kind of eating breakthrough. No, they were still tentative bites and he's still not totally sold on eating. But the point is he didn't refuse which was its own kind of breakthrough. More than that, he took little bite after little bite and went through almost 3 ounces.
THEN on the way home from the pediatrician he thought he might accept some yogurt from the squeezy yogurt tube mommy had. Whhhaaaatttt?
And then more at dinner...
Quantities of food going in are still small. But between the milk and the few ounces of food, Mr. Jacob is starting to get his old spunk back.
And so is his entourage.
Generally speaking, when challenging Prince Jacob... be prepared. As Jacob's grandpa says in situations like these; "... you better get up early in the morning and eat a BIG breakfast."
Stinker.
This is a really rough summary (lots of details in between the lines).... but I wanted to get a summary in.
Let's start with the good news. There *is* good news that even we have to often remind ourselves when patience wanes and frustration threatens to sneak in. Really good amazing news.
Jacob has discovered drinking.
Prior to last Monday, Jacob would take one sip...maybe two from a sippy cup. And even then, 90 percent of the time said sippy cup was held to his mouth by someone else. All other fluids went through his tube just as his food did. On Day 2 of this venture, just last Wednesday, he figured out how to make the sippy cup work himself, largely for the first time (see video in previous post). Since then he has relentlessly been practicing (amazing) and capture has gotten better. It's still not 100% but the balance of stuff going in vs going on his shirt has shifted significantly.
The practice in patience is about the food. We have gotten almost nowhere with food.
We have offered food, eh that's ok...
We have played with food, that's fun...
But we have gotten very little food in. We had one good lunch session on Day 4 but very little since then.
Over the last few days we are pretty sure Jacob has been convinced that this new hunger (feeling yucky) situation can be corrected by waiting his parents out and/or manipulating them to fix it without him having to put in any effort. We have watched Jacob emplore several strategies...
Day 4 started like this...
... and pretty much continued with the same attitude. When grandma came to visit, he wouldn't even look at her because he was *so* droopy and she was in the camp needing to be manipulated.
And if lying prostrate on the floor and looking like the droopiest bug ever all day doesn't work (torture to watch), the opposite strategy might work. The oh-are-you-not-going-feed-me?-do-you-think-I-care?-look-how-totally-fine-I-am strategy.
With only the bare minimal amount of nutrition (bare minimal!), this is what Day 5 looked like...
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(I know this happy face covered with food looks promising but trust us, not one bit went in.)
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End of the day... still going strong. See, mommy and daddy, I don't have to eat... I'm FINE.
OK
Day 6. Something happened. While he has been practicing with the sippy cup since Day 2 and seeming to like it, it had still sort of been practice. Much more robust practice than before but still kinda just testing it out. He'd do a decent amount in any sitting... but hard to say how much.
By the morning of Day 6, his parents seemed undaunted (little does he know the torment on our insides) and he was mad. Mad, Mad, Mad. Big time hungry and MAD. Here starts the screaming. And as hard as it was, Jacob's parents took a deep breath and left screaming mad Jacob on the floor with his toys and a sippy cup full of milk... and left the room. That's it kiddo. Sink or swim.
He swam.
Screaming continued. But low and behold, little hands reached for the sippy and...
Jacob drank. And drank and drank and drank. All day. We estimate he got 14 ounces of milk down. 14 ounces!
And that, my friends, is a BIG deal. Yes, we still have to figure out food. But drinking is a mighty fine start to sustain yourself (milk mustache and all).
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Bottoms up!
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Day 2 I did the first load of laundry. That's right. 2 days and we've generated an entire load of laundry. I think Jacob went through 4 outfits today. Totally covered in food. He worked really hard today. He tried. He did everything we asked of him. He did well. Lots of ups and downs but overall he hung in there. We did not turn any big corners with food but he definitely got lots of practice and more in by mouth than usual. (Just as a reference point that means maybe 2 oz. total. Maybe.)
Up...
(Yes. For perspective this *is* an Up pic, forlorn standoff look and all.)
Down...
Up...
He was very interested in his water though ...and drinking. And - hey, who's to argue. Given the choice, water *is* more critical. He did better with a sippy cup than we have ever seen. One step at a time. We are counting that as super huge progress (!).
(I believe if you click the pic above it will take you to a happy little video)
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Day 3 brought another two loads of laundry. For just Day 3.
I would love to say we saw continued progress or something like that but not so much. So this is the standoff, right? Test of wills. In addition to eating being a skill Jacob doesn't have much of, it's also effort. Effort he has never had to expend. He also knows his parents are somehow responsible for this new reality, the ones he has mad manipulative skills for. How long will he wait to see if we will just fix it eventually without him having to actually do this hard new scary eating thing? How long before his brain decides this is his new reality and he better kick those instincts into gear? How long? Who knows. They say this is the period that is the hardest.
Yup. They are right.
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We had a little bit of perky in the morning...
Not at all perky in the afternoon...
(In fact for the afternoon eating Jacob's parents had to leave the room because he kept melting down while we were present, so the therapist worked with him by herself and she did an amazing job keeping him focused when he was Not. Happy. At. All.)
A run to CVS for last minute supplies did result in this impulse purchase. Lights and music and we got some smiles at the end of the day before we went to sleep.
Tomorrow. Tomorrow is a new day, little bug. We are going to get there.
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Jacob is on to us. He's figured out we aren't feeding him like we usually do through the tube. He feels crummy. He's mad. We are to blame. He gets it.
By the end of the day we had an all out meltdown at even the visual suggestion that we were going to try to eat again by mouth. Followed immediately by this...
Jacob's parents are tired. This post will be short. The good news is the people we are working with are great. He even let the therapist pick him up and hold him without resistance today which he rarely does that quickly. And even after meltdown and refusal by sleep she got him to take several (more than he usually does) sips of water by mouth from a cup.
No real progress on eating but safe to say we are well on the road to connecting all the crummy feelings of NOT eating. And that's a start.
Happy (belated) Thanksgiving !
So we are well on our way to start Jacob's tube wean. We have received the hunger induction plan, we have discussed final details with the therapist, we have our packing list, we have done the best we can to button up things at work.... as ready as we will ever be.
Ironically, yesterday... Thanksgiving... our national day of gluttony... is the day we started to reduce Jacob's food through the tube. It is a good thing in all sorts of ways that we hosted turkey day at our house. All the excitement, activity, and family fun dominated the day which helped make the small first day reduction in food go almost unnoticed.
The reduction will happen gradually over 5 days so that by the time we start the process on December 3, we will only be giving him 50% of what we normally do through the tube. Deep breath.
We can't imagine he will be very happy about this as we progress. We can only hope that the unhappy translates quickly to figuring out how to eat to solve the problem. Fingers crossed.
But nevertheless. Jacob had a wonderful Thanksgiving. Blessed to be surrounded by family and a house full of joy and more food than we could ever hope to eat in one sitting (even if he doesn't yet understand what a blessing that is).
Not to be robbed of turkey, cousin Jonah (with his Momma's help) made a turkey for Jacob. It has great multicolored clothes pins for feathers (hello fine motor skills practice! and practice with our colors!) and was a big hit.
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It was a great idea and an awesome turkey! Good therapy hidden in play... not to mention awesome handiwork of my precious amazing nephew. We will be taking it with us on our trip this week for sure!
But don't start thinking that's the only turkey Jacob. Next year, kiddo.... this is your bird...
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Food is our common ground, a universal experience. ~ James Beard
Here in Jacob's world we are gearing up for a big deal. Generally speaking, Jacob is no more or less interested in food than he was a year ago. This is good and bad. Good because he still is mildly interested and hasn't developed any overt disdain for what seems to be a meaningless activity to him. Bad in that it is still a meaningless activity for him. Well, or meaningful to the extent it's a bit of a game with mom and dad and nothing more.
Within the last several months, a few things have happened...
So here is the skinny. The process is called a tube wean. It is an intense 7-10 day therapy program, the goal of which is to teach him to eat by mouth and to be weaned off the tube.
We are scheduled to do this in early December, less than a month away. We will be spending most of our time in a rental house in a cute little old town in Virginia. Replicating the home environment... a kitchen, a dining room, family eating together, etc. are all things very important to the core philosophies of the program - hence why we will be in a house and not in a clinic. We will have a team of therapists working with us the entire time. This team will be coordinating closely with Jacob's doctors here at home as well (that coordination, in fact, has already started).
There is a lot of research and therapy approach philosophy blah, blah, blah but all boiled down.... we are going to slowly stop feeding him through the tube... in a controlled environment... with the support of therapists... and introduce food, often and in a variety of ways... to push Jacob to make the connection that....
That's the scoop.
It would be unauthentic to finish the post there as if that's all there is to say about that. Our anxiety as it approaches would beg to differ. We are both excited and terrified. Jacob needs to learn how to eat. Eating is such a fundamental part of the human experience. He can do it, we know he can. We just have to get him there. (Excited!) At the same time. If you didn't catch it in the description above, we are about to intentionally stop feeding our child - who doesn't know how to feed himself. (Terrified!)
So. The first week and a half of December. Prayers, happy thoughts, emails with pictures of kitties hanging from a branch with the saying 'Hang in There!' emblazened.... all will be very much appreciated.
And chances are, given his track record, he will likely do better than we will and be teaching us a thing or two.
We will try to post as many updates as possible during the wean. All to include charming happy pictures of Jacob and tired frazzled pictures of his entourage covered in food.
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