Holidaze??

Yeah, you know the holidays are coming up, and that means parties (with lots of food), and gifts, and seeing all your friends and family. Well, right now, our focus is still on Micah and his feeding troubles and his Neutropenia. If his numbers don’t go back up a little (his Neutrophils/WBC), we will have to go to extreme measures and possibly avoid it all for him. I’m looking for a reusable medical mask for him at this point, but it’s hard to find baby/toddler size. We are also having to budget like crazy because at the rate his food is costing us, we are now trialing Rabbit (and it is 30$/piece), we are ending up taking from our Gift Savings pile for the older 2 boys 😦 I hate doing that to them. They deserve a happy Christmas. They deserve their own spotlight too. We always focus so much on the baby and all his medical appointments and such, they feel left out. Then the one time where I can really spoil them (I mean, SANTA can, shh!), now they might not get to. I was talking to a good friend of mine and she suggested I create a GoFundMe page for all his needs. What a great idea! So I went to work yesterday and created his page. If you’d like to donate or go read up on comments and donations (lets reach our goal! go go go!), the updates and such, please go to: https://www.gofundme.com/micahs-fpies-22q-medical-fund

I want to say a very very big thank you for all those who have stuck by us trying to help out in any way they can since we started on this journey! I don’t know what we’d do without you!

THANK YOU!

 

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7 thoughts on “Holidaze??”

  1. Hello. So sorry to hear about Micah’s major health issues. I found out about him from my father in law who lives in Montreal. (I am in Seattle.) I apologize that I don’t have time at the moment to thoroughly read your whole blog. I just want to make sure that Micah has been tested for Eosinophilic Gastrointestinal Disease (EGID). Testing requires endoscopy and *specifically-done* biopsies of the GI tract. It is a “new” Disease and many GI docs don’t know about it. The APFED website, CURED website, and CEGIR website have information. My daughter, Noémie, has EGID and a lot of her symptoms and food restrictions match Micah’s. Please take care. I welcome an email from you if you have questions. I also hope that this has already been tested and that it is negative….you don’t need another diagnosis. Blessings to your family.

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  2. Please look into something called BiAloe – a derivitive of the inside gel of Aloe. It may help your son with some of his gastrointestinal conditions and his immune deficiency, you can buy it by the kilo, raw. If he can consume it, it will likely benefit him greatly. Good luck with your little guy!!!

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  3. Hi Sarah. My name is Mical and I’m a mom of a wonderful kid with multiple food allergies (not FPIES). I have been in a very similar situation for the past 5 years where I have been home trying to figure out what my child is going to eat and how to help her gain weight with zero help from her doctors and nutritionists. It’s been economically, emotionally, mentally draining, as well as, a very lonely experience.

    I have a neighbor with a grandson with FPIES allergy and we’ve discussed meal plans for our kids for the past few years as we learn about each other’s kid. Both of our kids can eat sweet potatoes and I didn’t see that on the ‘unsafe’ or foods your considering, lists. Sweet potatoes was the only food my daughter could eat for almost 4.5 years. She can also eat a fermented bread I make with just teff flour and water. Please let me know if you would be interested in discussing possible foods/meal plans to work towards. If you need someone to look into things for you, I’ve been able to get good at research.

    After working with 5 hospitals and 20 different doctors/specialists, forcefully having a g-tube inserted into my daughter’s abdomen, the doctors could not figure out how to help us and gave up on trying to help my daughter. I have been able to get my daughter well through doing tons of research. Any doctor you work with will not know much about what causes allergies, outside of the immunesystem responding to non-threatening particles/proteins that enter the body. Please consider holistic doctors as they are more aware of the relationship between food, the gut, and allergies. Holistic doctors are able to offer options for actually healing the body from allergies versus giving formula and meds that actually aggravate allergies and the gut.

    I looked up how to naturally heal children from FPIES allergies after reading an article on Micah, and this is a book I found: https://www.amazon.com/Journey-Through-FPIES-Protein-Induced-Enterocolitis/dp/1975978986/ref=sr_1_fkmr0_1?ie=UTF8&qid=1512024487&sr=8-1-fkmr0&keywords=how+to+cure+FPIES

    As a result of all the allergic reactions my daughter had starting early when she was a baby, she ended up having Sensory Processing Disorder (SPD). Your son most likely will have developed that as well, because instead of taking in normal developmental input that help his body make normal connections in the brain, his brain and body are probably making misassociations to food and other sensory input. Please have him evaluated by an occupational therapist (an OT) if you haven’t done so already. I really wish someone had told me that. None of my daughter’s doctors had ever heard of SPD and how many children with food allergies and consistent bad reactions end up having it, causing them to have a severe food aversion. Almost impossible to get a baby/child with a severe food aversion to eat foods their not allergic to, without help.

    I will be letting people in my world no about your Go Fund Me page.
    Again, please feel free to contact me. I do want to help.
    I know how hard it is as a Mom to have hope for your baby with all that he has going on and then continue to care for everything and everyone else. But please know that all we will be well for Micah and the rest of your family. My neighbor’s kid is able to eat more food now than before. He has gained weight and is no longer FTT. Same for my daughter. The doctors had very little to do with it. His body just started healing itself and my persistence for my daughter has given her the chance to start preschool. We still have hard days, but I do celebrate the good days. Please remember to do the same.
    Be strong. From one Mama to another.
    Peace, Love, and Good Health to you:)

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  4. I wanted to make sure that I clarified that Sensory Processing Disorder is basically when your kid gets easily overwhelmed by sensory stimuli, mainly because of some overwhelming health issue early on in childhood. Examples of sensory sensitivities due to SPD: loud sounds like people talking boisterously, fast moving things/people, visuals like a having several plates on a table or having too many people in the room, the sensation of touch or clothes on the skin, the sensation of food temperature, appearance of food and texture which can cause gagging and vomiting, and a high sensitive to smells even if they’re not offensive.

    The Out of Sync Child is a book that pretty much saved my sanity and my daughter’s life.
    One more thing: I also highly recommend getting Micah’s comprehensive panels done to find any nutrition deficiencies which he most likely has and if you know what they are, I can help you look for vitamins with minimal ingredients or hypoallergenic brands like Klair Labs.

    Anyway,
    That’s it from me!

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  5. Hi, Caroline! My name is Char Adams and I am a reporter with PEOPLE Magazine in New York City. I am contacting you in regard to your son Micah. I read his moving story about his food allergies and I’d love to share it on our website. Would you be willing to answer a few questions for me?

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  6. My son was anaphylactic to many things and allergic to everything else, for several years we were essentially quarantined between ER visits and it was awful. Check out Alpha DMX, it’s a complete protein/nutrition source without anything else added and it seriously helped keep him alive for about five years before we could begin adding in other foods again. Good luck! I know how hard this is on you guys.

    http://www.nutramed.com/alphadmx/index.htm

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