Emma Noel's Journey

07/09/2025

Medical question. Is there a condition that makes someone itch all the time? I find it hard to believe low Zinc can make someone itchy! I’m her sleep she tries to take her bandages off. We have a vest now to protect her Broviak but only 1 so it’s in the was daily. Every night for weeks she takes her osttomy pouch off in her sleep. I don’t understand how she can be sleeping but working them hands in her sleep.. 😪 so any itching disorders? She does have a secondary diagnosis of autism. Ps can you pray for her cough..

07/09/2025

💜

07/08/2025

UPDATE JUST CANCELLED IT CANT AFFORD ALMOST 900. I just pray for my stomach!! 😭

This is for me not Emma.. I’m trying to raise funds to get my colonoscopy and upper egd. I had pre cancer cells 4 yrs ago. My stomach is sick 80% of the time.. please consider helping. I tried to see if they had charity but this is my copay and no one helps with that.. I would be forever grateful for help..
this yr our Emanuel syndrome group lost two parents who cancer journey started with colon cancer. I’m not sure if they were carriers like me or not.. 😭💔 So I’m a tad scared and would like answers..

I'm desperately trying to raise funds for my colonoscopy and upper EGD. I had pre… Joy Caffrey needs your support for Help Cover Medical Costs for Colonoscopy

07/03/2025

06/26/2025

I tell you this!! I created a monster!! She gets upset if we don’t twin. Like laundry doesn’t add up to matching Jammie’s, then I’m in some trouble!! 😅 completely obsessed she is lol 💝

06/26/2025

💜 Hey there! I’m reaching out because we're facing a tough time, and I could really use your support to save our home from foreclosure while we fight for Emma’s health. Every donation makes a huge difference for our family, and if you're unable to contribute, sharing the link would mean the world to us. Thank you for considering helping our miracle girl! https://www.gofundme.com/f/help-for-emma-noel-and-family?utm_campaign=fp_sharesheet&utm_medium=customer&utm_source=native_options&lang=en_US&attribution_id=sl%3A55639f47-ec6b-47ae-929b-665e7775c77b&ts=1750957309

06/23/2025

So I guess it’s good we got our foot in the door to nursing! We hired the nurse she seems very kind and is also a caregiver and autism mom.. Emma really enjoyed having two people giving her drinks lol The last two hours the nurse was there I started feeling bad. Like small shiver shakes, ive been fighting gastristitis for over a month(now thinking its been pancreas.I’m like ok my social anxiety is really on fire.. woke up every couple hours with my head pounding. Took an aspirin and a shower.. well while in shower felt like something kicked me. My back and stomach hurt like heck. So after it getting worse and worse. Went to Er and diagnosed with acute pancreatitis. Honestly have never been in pain like this.. my Gi dr seems to do one test a month. They think my diabetes med made me sick.. nothing like adding more problems to a struggling house/family!! So if you could say a prayer for me and for emma. That when dad goes to works my body doesnt reject it.. I feel like I’ve slept for days.. 🙏🥲 https://gofund.me/290533ca

06/18/2025

Today’s the day!! I CAN DO THIS!! 😭😳😅🥲😂😭

06/17/2025

Today I step outside my comfort zone!! My oldest is 25 and emma is 18. Me and my husband have always taken care of our kids, no babysitters, to many bad people in the world..
I realize although we’re protecting our kids there so isolated from not having friends and family and it’s to hot out!!
I have trouble excepting help even in the hospital I’m changing the diapers, ileostomy etc.. we need to to a least for Emma try a nurse!! I’ve had a million panic attacks and crying over this.. but Emma deserves a new face, a possible friend. Please pray for us.. this has been such a huge heart attack for me.. we meet the nurse later today can you pray it goes well.. this is something I’ve been keeping to myself, don’t even know why I’m sharing!! Sometimes life feels very alone and sad, with health and money struggles, it’s hard to find happy!! Please pray for us as we go through things that make us uncomfortable, so maybe we can find happy again!! PS HIRED HER!! 🙏💙

06/14/2025

I would just like to say outloud that spinal fusion has been a miracle for her.. if you could’ve seen her mangled little body.. my girl is the strongest person I know! So ileostomy plus spinal fusion the severe pain she was in for years is very mild, and is mainly her intestines/stomach!! 💜💙🙏

06/11/2025

So for a couple weeks I was happy, I thought our help has finally come!! But Nope!! There’s a new bill in Florida we’re a parent can get be paid to be the nurse!
You know like me! I do all her nursing, TPN, bandages, ileostomy, GJ tube, drain bags, etc.. but there’s income guidelines and because my spouse works we don’t qualify! So we wait for social security, we’re told up to 280 days..
I don’t even know why I’m posting this!! I really thought this would help me mentally, feel like I’m helping my family, like im worthy and have income, that I wouldn’t have to beg strangers for help! That i could buy my daughter the bed she needs!!
This life, intestinal failure is not easy! We love our girl, our kids more than life! Just feels like if it’s gonna go wrong it has.. 🥲❤️‍🩹🙏or heck even groceries!