Tag Archives: Crohn’s

Printables for dressing up towers!

Towers Together
In my few short years of experience with Allergies and GI I have been so surprised to learn there are kids out there (and not just babies!) on NO food. Kids with Crohn’s or Ulcerative Colitis whose intestines need to be healed, and the best way to do that is with Enteral Nutrition (basically formula). There are also kids with food allergies so severe they effect the gut, and leave these children no choice but to also go onto the same types of formula until the food allergies can be tested one food at a time and sorted out carefully. Many of these children take these types of feedings through tubes (there are different types of tubies, and I do not claim to understand the differences). I am not an expert on this type of treatment at all, but I revel in complete and total amazement at the bravery of these children and their superhero moms and dads!

Can you imagine your 3, 4, 5 or even 9 year old having only formula — tube fed — and that’s it? No food, none at all, for 6, 8, 12 weeks or longer? And some kids with Eosinophilic Gastrointestinal Diseases will never get to eat but just a handful of foods at all. It is totally humbling to think of these children and what they’ve done to get better — to be healthy, and to sometimes avoid other meds like prednisone. It is only SUPERSTAR families that can take on this type of treatment.

I recently “met” a friend online whose little one has BOTH of these diseases. The IBD (Inflammatory Bowel Disease) AND the EGID. On her recent 4th birthday she had a beautifully wrapped box for a birthday cake. No food — no ice cream, no pizza and especially no cake. And her extra-brave mama says she’s happy and she’s feeling just a bit better, and not asking for food — at all!

They had a great idea to decorate her tower (used for her feeding tube) with princess stickers to make it a bit more Rapunzel tower-like. I though that was darling and offered to create a tower graphic she could add to the tower to spruce it up a bit. I of course decided to share it here so any of your kids or anyone else you know can have one, too! (And by all means, feel free to use them on the fridge, on the back of the bedroom door, anywhere! They aren’t for towers only!)

Here are the free printables to download: Rapunzel’s Princess Tower and Pirate’s Lookout Tower

(A note on printing: I’ve created the PDF as 2 pages that are 8.5 x 11, since I know most people can only print an 8.5 x 11. The 2 pages need to be taped together at top/bottom to make one long vertical poster.)

If you would like one personalized (like I did for my friend’s princess), I would love to do that for you, too! I just ask that you sign up via email for my blog updates, so I have your contact information. And then leave me a note in the comments below!

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A food pyramid we can get on board with!

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Lately I’ve been really interested in anti-inflammatory foods. With Posey’s intestinal inflammation (which we really do not know is IBD, but she seems to respond really well to Sulfasalazine, a drug typically used for IBD) and for my own health, I did a little research.

I came across Dr. Andrew Weil’s anti-inflammatory food pyramid. I love the really specific, yet really doable and understandable information. The online pyramid is interactive, but there is also a printable version. And we already know how much I LOVE printables! I am putting one right on my fridge! (Next to Posey’s weekly Take Your Medicine Chart, of course!)

It really leans toward a largely plant-based diet, which I’ve been transitioning to over the past couple of years. Posey has always leaned vegetarian, too. (Millie and her daddy still like their meat, though!) So that’s another nice thing about Dr. Weil’s chart — there is room for a couple of chicken or meat servings a week. And even more room for fish. I think it is something our family can subscribe to. What about you?

Hi, I’m Posey’s Mommy

Hi, I’m Patricia! I’m Posey & Millie’s mom (all names have been changed to protect the sassy & somewhat innocent). Over the years, we’ve had health challenges with the girls. Some heartbreaking, some frustrating, and all took me by surprise! Several years ago I went to lunch with a friend and her daughter. The little girl had a peanut allergy and wore a medical alert bracelet. I remember so distinctly feeling sorry for her. It was only a few months after that lunch that Posey had her first taste of a cashew nut. Disaster. The anaphylactic reaction that followed set off a whole new normal for our family…and it has been quite an adventure ever since! We’ve also dealt with GI issues, and now our latest: asthma. And I’ve said time and time again: I should’ve gone to medical school! I love researching the latest and greatest information on Posey’s challenges. I am keenly curious about how diet plays into childhood disease. Why are allergies and other ailments are on the rise? How do I protect Posey from too much prodding and poking. And how do I work with the medical community when mommy’s instincts are hard to explain? How can I ensure Posey’s childhood is happy and productive and that people (like me) don’t ever pity her or feel sorry for her situation?

One of the hardest things about having a kiddo with medical challenges is thinking you’re the only one. I mean, all the other children can just pop into an ice cream shop and order whatever they want, right? And no one else needs a star chart to keep track of daily medicines! And you must be the only one who has ever been blown off by a doctor who can’t see your child’s pain. But, I know there are other parents out there! I cannot be the only one up at night, tossing and turning, wondering if you’ve done enough? I know that all parents of children with allergies, asthma, celiac, diabetes, arthritis, Crohn’s, and everything else kids deal with on a day-to-day basis have felt the way I do.

I am here to tell you: yes, you’re doing a great job! Your kids are great, too. You are the super moms (and dads!) of super hero kids! And together, we can do what we could never do alone. Thank you for coming! Posey says thanks, too!