Posts By Hope

HopeMy name is Hope. I have amazing children that I'm lucky enough to spend my days with. I'm also a molecular biology major, which I really love. I'm a Neuroblastoma Stage IV survivor still dealing with the effects of that not only with myself, but my children as well. My youngest daughter is medically fragile. She has a metabolic disorder, airway problems, and many more issues. My blog has turned into a way to chronicle these problems, but I do pray for a day that she has no medical problems to write about! Welcome to my life!

My baby is 3

Yesterday, Ava turned 3 years old!  It’s crazy to think about all she’s been through since she’s been born.  What an amazing girl she is… (I hope you don’t mind, but I left out all PICU photos. )
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Band-aids

I’ve been sitting in this chair holding my sleeping toddler for 2 hours.  I can’t help but looks down at her long eyelashes.  Such long eyelashes…. For the past few days I’ve been really struggling.  Maggie lost her battle with Mitochondrial disease.  This was a huge blow.  Reading about Eithene, Cooper and Samantha also fighting…
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I hate this

This disease is terrible.  So many children are suffering from it.  Please pray for Maggie and Cooper as they fight end stage Mitochondrial disease.
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Update

Ava has been getting a veeg since Tuesday. I havent seen any episodes yet. She had a fever all day yesterday, vomiting last night. Fever is gone today, but hypoglycemia is an issue today. The neurologist came in today to tell me there are times her EEG slows considerably. This is also when she has…
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Neurology floor

It’s always interesting to see how different each floor is. We are on the neurology floor, we checked in yesterday. A few of our 6th floor respiratory therapists and nurses came to visit this morning. We love them bunches. Ava has been getting fevers today and just being sleepy. I hope it’s nothing that will…
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Valentines Day Video

Here’s a sweet video Cincinnati Childrens did for Valentines Day.  Ava is in it towards the end (around 3:16, I think).  I love this hospital and all the small things they do to brighten the days of their patients.
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She Needs a Beak

I’ve been a terrible blogger lately. I’m sorry. Ava had a week of appointments this week. We have successfully restarted G tube feeds again. She is continuous 21 hrs a day with one mini bolus. The trick is keeping her blood glucose up, and we are still walking a fine line with that. Some of…
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updates

It’s amazing what you become gratefull for when you have a medically complex child. I was against (and terrified of!) G-tubes for over a year. I didn’t think I’d be able to figure out the feeding pump, etc….. I can say now with all honestly that it was one of the best decisions in my…
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Updates

Ava spent 9 days in the hospital and is finally home.  She had an MRI of her brain, which showed some scarring from past brain injury and delayed myelination.  We knew about the brain injury, obviously.  There are a couple concerns there with changes due to her Mitochondrial disease. She had an endoscopy, colonoscopy and…
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