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. )
About our blogger: Hope
My 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!
Visit Hope @ http://hopeandava.blogspot.com/
Posts by Hope:
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 so hard. This is the same disease my baby has. I can’t wrap my mind around this.
I check Ava’s blood sugar at least 6-8 times a day. Sometimes more. She never cries. Never whines. Never whimpers. All she asks for is a band-aid. Yes, there have been many times all her fingers were covered in band-aids. She doesn’t mind. She’s very proud of her band-aids. She will happily tell you how she got them. “Mommy checked my blood sugar”. How brave she is. How I wish a band-aid would heal her Mito!
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 low blood glucose. This isnt usually seen with hypoglycemia. Ava is writting her own book. Endocrine thinks she has dumping syndrome. We are going to try acarbose and a few other things. Hopefully outpatient!
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 interfere with her stable blood glucose. I don’t need anything to keep her here longer than we have to be.
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.
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 her GI biopsies came back. Ava has been diagnosed with Eosinophilic Esophagitis. She has eosinophils in her colon as well. After her special needs and gastro doctors discussed it, they decided not to treat it right now. We are watching it. Our first priority is glucose levels. She’s on Peptamin Jr, which is a good EE formula anyway. We can’t afford to lose the complex carbs.
I had a heart to heart with genetics. They fully believe there is something more than her Mitochondrial disease going on with Ava. They have voiced this several times. She is constantly being poked and prodded. Her results are always “weird”. I’ve asked them to put further testing on hold for 6 months. Ava needs a break.
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 life to sign those surgery papers! The feeding pump? A piece of cake. She’s now continuous GJ tube fed and her weight is great!
She continues to have low glucose all the time. 40-60 is her norm. Occasionally she will shoot to 300 with no real cause. This is a new problem. She also drops LOW (below 20). All these can happen on or off feeds. There’s no rhyme or reason to it. She keeps me on my toes.
Her mitochondrial disease is slightly effecting her body’s ability to regulate her temperature. This is new to us. I’ve learned that things can change so very fasy with this disease.
I’ve decided to put her in a toddler gymnastics class. I know she won’t keep up with the other 2 year olds, but this disease can be devastating with no warning. I don’t know when she’ll progress, so I want her to enjoy being a toddler while she can be. Making friends! Playing! She can wear her backback with her pump in it. I will be with her the whole time. I’m so excited to see how she does!
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 biopsies done. We’re waiting for pathology results. Her doctors and I are working on a plan to keep her outpatient for longer periods of time. She’s spent almost 6 wks in the hospital just in the last 3 months. She’s averaging half her life at Childrens and that’s not okay in my opinion. This is time I’m also away from my other children. I’m hopeful that the changes we’ve made will keep us home more.