who wants a bowl full of happy?

  Dinnertime in our home is sooooo exciting. Can you tell?

June2009 022copy

Today is day #47 of Corrigan’s eating strike (solid food, he still drinks formula no problem) .  Each day feels like another day closer to a g-tube.   I keep explaining this to Corrigan but I am pretty sure he only hears, “mwa, mwa, mwa, mwa, Corrigan!”

We have had an OT come out and evaluate the situation and work with us on ways to encourage him to take food by spoon again.  The consensus seems to be that something happened that Corrigan associated with a spoon during his April 29th hospitalization. The last that Corrigan took food, by spoon, was the day we went into the hospital and hasn’t agreed to take a bite, by spoon, since.

 I was going with the theory that he was refusing to eat as a sort of control issue. In other words, he has no control over his life, and experiences such stress and pain, that clamping his mouth shut and avoiding solid foods was his way of taking a tiny bit of control of his life. Apparently, I watch too much SuperNanny.  They tell me that 12 month olds do not have the ability to think of something like that and then carry it out over days and weeks. Duh. It sounded good though, right? 

I am told that, more than likely, I must have tried to feed him by spoon immediately following something painful when he was in the hospital.  The stress of that hospitalization and then whatever happened shortly before I innocently tried to feed him…he now associates, without reasoning, the spoon with pain/stress/anxiety.   He seriously will NOT lay quietly on the therapist’s couch in order to get to the root of the situation so we are forced to play ridiculous games to re-integrate the spoon into his life without him throwing himself from the highchair in terror.

Also, I never knew that, in theory, the thought is that the sensitivity of the palm of your hand is almost identical to the sensitivy of the inside of your mouth. If you hate the way jello feels in your hand and it makes you want to pee your pants…then jello in your mouth is going to flip you out too. huh.  In the course of evaluating Corrigan’s food situation the therapist did some touch testing and we have learnd that Mr. Corrigan has a slight texture aversion issue.  Also, did you know that a baby’s brain associates the safety of a situation with the number of what is placed in front of him? huh. Me either.

  The therapist shook a big box of Cheerios in front of him. He was VERY interested in the box. She poured out a big pile of Cheerios on a towel and I kid you not..he immediately crawled away at about 77MPH.  When she covered all but 10 pieces of Cheerios with the towel and placed them in a cup, he returned and comfortably played with them in the cup only. When she placed a single Cheerio in the palm of his hand he became visibly anxious and stressed until he managed to shake it off of his palm.  That would explain why it took over a week for Corrigan to even consider crawling into his little inflatable ball-pit. The therapist said that 50 balls was too much for his brain to feel safe…and had we placed 5-10 of the balls in there at first he would have been more willing to play in it sooner.  The fact that it only took a week for him to feel safe indicates that his anxiety can be overcome relatively easily.  Shocking that a kid that has been poked with needles hundreds of times and never knows when someone is going to “hurt” him would have anxiety issues, right?

This would all explain why Corrigan will not grasp small pieces of food and place them in his mouth. At his age he should be on mainly table food and not the jar stuff either.  For Corrigan, the idea of a small piece of fruit on his tongue is awful and he will not even consider touching the food let alone trying to chew anything.  Turns out that we need to do all sorts of ridiculous “play” with Cheerios and lima beans and other larger textured items…and then work down to more “scary” textures such as ground up graham cracker and sand…until he will be able to learn to eat solid foods.  *sigh*

We also have to fuss with his face a lot more…tickle his cheeks in play-like behavior…more sloppy, over-dramatic cheek kissing…eventually working our way into slipping our fingers into his mouth in play…the goal being that he will eventually allow us to tap the top of his bottom teeth in a silly game or play “got yer tongue” while trying to pinch it with our fingers.  

Have I mentioned that we only eat out in restaurants once a month or less because he will not tolerate a high-chair?  In fact, we tried to go to Denny’s, last weekend, and had to leave before the waitress even took our food order.  That was after a nearly 6 week break since trying the last time. Soooooooo, we are also doing high-chair desensitizing. *sighing again*   Several times a day I place him in the highchair for no reason associated with food. Regardless of whether he sits well for 10 seconds or 60 seconds I let him sit there until he fusses, actually I am to anticipate the exact moment that he is about to fuss, and then swoop him up gleefully, kissing him copiously and telling him how HOLY MOLY YOU ARE AWESOME FOR SITTING THERE 15 SECONDS!!!!!! woooo hooooo…again…and again….

He is to sit with us for all meals but NOT eat. For now, he is simply to play…oh, and play now includes spoons..spoons EVERYWHERE around the house so that he gets used to them being in his life.  At the dinner table I am not to FEED him. Just let him be.   Which, for Corrigan, means stretching his body in order to try and make himself Gumby and attempting to slide out the legholes onto the dining room floor. Often, he enjoys whining and yelling too…all the while we are to exaggerate our eating sounds and show him how much FUN it is to eat.

Can you sense my frustration in all of this?

I am frustrated because he ate perfectly well for months. Because I doubt he has a sensitivity issue because while, yes, he will not let me put food in his mouth, he has no problem chewing on the corner of the endtable, licking the side of the metal bowl that the DOG drinks out of…because he lets me brush his teeth for goodness sakes.  I am frustrated because months ago his Hopkins doctors predicted that my chunky, Buddah-belly baby boy…the baby boy that has never, notonce, NOT gained weight…the baby boy that has thighs that are proof that he was eating well….because before he ever had a single feeding issue…they said that he would need a feeding tube. 

I told them he wouldn’t.

…and if this keeps up, Corrigan will be getting nutrition from a bag. Like life isnt already hard enough.

I don’t know what the answer is and to be honest, I don’t think OT knows what the problem is…so how can we fix it? All I can really do is offer him food, by spoon, several times a day and pray that one day it will all click again. One day he will let me shovel tons of greenbeans into his mouth and he will swallow it happily without horfing it all back onto my feet.  

Until then, we pretty much all look like the photo above. Our lives revolving around  food…eating…mealtimes…practicing…”playing”…eating again…until Corrigan decides that the spoon is no longer an implement of torture.

*sigh*

3 thoughts on “who wants a bowl full of happy?

  1. Yikes. Good luck with this one. I have no idea what to tell you except to keep at it. They say almost anything can be relearned. I hope his little spoon switch in his brain goes back to on very very soon! xoxox

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  2. Oh how I can relate to your frustrations. I have been following your blog for some time, reading about Corrigan’s ups and downs, along with the struggles of your famly in dealing with such a situation. Many times I had thought how good it was to read that Corrigan would still eat, that you did not have to struggle with the medical equipment of a child with a food adversion, how he always looked so good on his pictures.

    Reading this makes me want to cry for you. I remember the same thing happening with our son James (who had a urea cycle disorder called LPI – Lysinuric Protein Intolerance). James was a bit different in the fact that he never did take solids … but he would drink his dear bottles and survived off of then. Until one hospitalization, just like Corrigan, where he decided he didn’t want to touch the bottle again. The sad part is I’m not very encouraging in saying that he never did touch that bottle again, one day he turned off any desire to any form of food, solid or liquid, and that was it. First an NG tube and then we had to accept that a G-tube was the only way.

    Food adversions are so stressful no matter what the circumstance. Like you explain … the mind games that we have to play in order to try get our child to eat. I remember be so thankful for the g-tube as we could finally stop those games once we realized that at that point in James’ life we were not going to get anything into him orally so we would just work on the proper diet through the g-tube and not continue to stress him out with the whole food issue. I just am so struck by how Corrigan has done the exact same thing … one day decided that it and so far no turning back.

    My only question with Corrigan is … why do they want to put a G-tube in? You mention that he is still drinking, he just refuses solids. A g-tube is used for liquid foods, such a formulas … so if Corrigan is still drinking he can get the same thing that a g-tube would provide through his drinks/bottles/cups. And as long as he sucks those back he will be no different then the child who has the g-tube to get his liquid nutrition. Just my thought.

    I pray that the therapy that you are doing will help Corrigan and he may indeed turn back to eating. You are also in my thoughts and prayers as I follow along your blog and the challenges that come with having a urea cycle disorder. When I follow UCD blogs I am always struck by how thankful I can be that James’ ammonia levels remain stable once we put him on a proper diet … now he had many challenges still, but I cannot imagine what it would have been like if his ammonias were also unstable.

    You faith is strong and I pray that this will continue to help you through these challenging times.

    Stephanie
    http://www.lysinuricproteinintolerance.blogspt.com

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  3. Thanks for stopping by and commenting Stephanie! I have often heard numbers quoted at near 90%…the percentage of children with UCD’s that have food aversions. I was so hoping that Corrigan would be in that tiny 10%. I agree with you, though, that if he is taking what he needs by mouth why on Earth a G-tube? I will fight it as long as I can as long as it doesn’t jeopordize his health. I know once he gets busy with walking and stuff taking 6 bottles a day is not going to work for him…so I am anxious about that but I am praying that he will simply decide to eat again and everything will be fine.

    Today, just minutes ago, he sat and took 3.5 ounces of apple/blueberry baby food..not a lick of gagging, not once did he push my hand away..and all because I finally thought to stick the stupid highchair in front of the TV with his favorite show. *sigh*

    I know that it might have been a fluke…but I will try it again in a few hours and maybe it will work again!!!!

    We have been stable since May 19th ( they dont count May 29th as real hyperammonia…prob. lab error) so we are approaching 4 weeks! The longest we have had is 9weeks of stability…I am so jealous (but also thankful!) when I hear that there are so many UCD kids that have only a handful of ammonia issues over the years..some none at ALL! Its a blessing for their families but I wish it could be us too…but thankfully Corrigan responds to well to medicines when ill.

    Thank you for commenting!

    Mindy

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