6 August 2013

Corrigan has had his feeding tube for three years now and it has, quite literally, been a life saver.  His eating skills haven’t improved much since my last update but his teacher did call me from summer school (giving me a heart attack when I saw her number on my phone!) last week to tell me that Corrigan ate every last bit of the lunch I packed him!  It marked the first time, in eight weeks, that he had eaten a single bite of food during his summer program.

(Corrigan is tube-fed by a registered nurse during his school day)

That same day, during his long afternoon tube feeding, he hopped onto the couch with an apple that he had snagged off of the counter earlier, and had been carrying around for awhile.  I spotted him feeling brave enough to try a bite and once I sliced off a little bit for him to have a section to sink his teeth into, he happily sat and ate his very first apple!

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I was very surprised that he seemed so interested in the fruit since he still has a strong aversion to chewing with his back molars, and apples require some chewing, but he worked and worked on that thing until he had apple juice streaming down the front of his shirt and it had soaked his Kindle.

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Because Corrigan has had very little experience with foods that require chewing, his gums bleed a lot when he eats firmer foods and the gums are still nearly to the top of his molars in the back. I’ve read that this might mean that he would need dental surgery to remove his baby teeth when his permanent teeth are trying to erupt, so his recent love of apples makes me happy that he is working those gums!

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His current solid food favorites are still waffle fries, bananas, any sort of spicy potato chip, strawberry PopTarts and now apples. It isn’t much, but it is at least something. I had high hopes for summer school to help with his eating because of the length of the school day and that he would be participating in “lunch” with his peers for the very first time. I was hopeful that he might see his peers eating various foods and it would spike an interest in Corrigan to do the same, but that hasn’t really been the case.

Corrigan eats when he wants to eat, and not a single bite otherwise, no matter what.

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(look at him holding that apple so casually, as if he has been doing it his entire life)

Many of the doctors that poked and prodded Corrigan during his last hospitalization remarked at the size of his tonsils, and my instincts tell me that removing those huge tonsils might relieve a little of his fear around swallowing, but anesthesia is always a risk with Corrigan and his team hasn’t seemed enthused about the idea of surgery for something not really medically necessary. His tonsils are not infected in any way, just really really big. I took him to a pediatric ENT, gave the ENT advanced notice of Corrigan’s disorder so that he could research and when we showed up for the appointment, the guy seemed terrified of the idea of removing them for Cor. He promptly assured me that they were fine “as is.”

Citrullinemia can scare even the best doctor away…

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Most of Corrigan’s nutritional needs are met through these two products…

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…and while I am certainly thankful that they exist, and that Corrigan is growing well while taking them, it makes my stomach turn to see that the first ingredients are corn solids and that they’re so full of sugar. Canned nutrition is a Godsend but it is certainly not ideal.

I’ve researched Blenderized Diets, and it does intrigue me, but Corrigan’s volume tolerance is not all that great, and blending up fruits and veggies requires a good amount of water in order to thin it enough to be administered through a feeding tube. This would tether Corrigan even more to to his feeding pump than I would like. My solution for now? (I’ve mentioned these before)

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Organic powdered beets ($22.58/1lb), spinach ($16.00/1lb) and carrots ($14.33/1lb)! The powders are so concentrated, I was researching blueberry powders because I have been reading about their super-food properties, and a one pound bag of blueberry powder contains TEN pounds of blueberries! That must be why a pound of powdered blueberries is $65.00- more than the spinach, beets and carrots combined!

These powders dissolve well in his special formula, do not provide any real increase in volume and do not clog his tube, so he is getting his veggies without needing to be hooked up an extra feed or more!

One day, when my magic money tree sprouts in my backyard, I plan on adding the blueberry powder ($65.00/1lb) and pomegranate ($33.95/1lb) to his daily intake. Both are so rich in antioxidants, which are of great benefit to his brain. These powders are also great for healthy folks too, they are delicious in smoothies and mixed into yogurt as well!

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I am not affiliated with any of the following businesses at all, nor have I been provided with anything to review (disclosure laws!) but I wanted to share in case the idea of organic powdered fruits and vegetables appeals to you too!

My spinach, carrots and beets come from Starwest Botanicals.

You can find powdered blueberries at Sunset Valley Organics and powdered pomegranate at SuperOrganicFoods.com!

And, as always, please remember that if you, or your child, has a metabolic disorder (or heck, any medical issue!) to please take your information to your child’s doctor. I carefully weigh out everything that Corrigan eats and have taken these to his dietitian for approval. His diet was adjusted..calories and protein…to allow for this product.  Making even the smallest changes to a UCD diet could have major implications and should only ever be done under the strictest of supervision from the metabolic team!

5 thoughts on “6 August 2013

  1. These sound great to have on hand. A note on pomegranate – it sometimes interacts with medications (decreases the effectiveness) so check with your doctor first.

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    • Good advice, Katie! Our team approved us to use the pure POM juice in his special formula a year ago, and we kept that up for awhile but it got so pricey, the daily amount he needed so I think that the pomegranate powder should pass muster, but I will definitely ask again this month!

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  2. Yay! So glad he is eating so well by mouth now. Wow, eating at an apple is very impressive!! We had our own miracle of eating/drinking this past week also! We have not used the tube for calories for 10 days now! Until this past week we were using it for about 95 percent of her daily calories for the last 4 years. Abbey just up and decided to drink all her formula by mouth and really had never had very much by mouth at all. Now she is taking in 35-40 ounces a day. These kids are so amazing!! Thank you Lord for answered prayers!

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    • Holy moly Jennifer, that is HUGE HUGE HUGE News!!!!! News I can only DREAM about sharing on this blog someday! What a tremendous breakthrough for Abbey, I’m so proud of her! I need to start introducing his special formula back to him, by mouth…the tube will never be a goner as long as he refuses to drink that stuff. These kids ARE amazing, and your comment has given me tons of hope! Amen!

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  3. We are using flavoring straws called got milk Magic Milk Straws. I buy them in bulk on Amazon. There is no dairy or protein just carbs from sugar and flavorings and coloring from veggie juices. And we have some different fun cool gear cups that we put the formula inside. She is drinking unflavored infant Elecare… Very awful tasting stuff!!!

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