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Hope

middletown, Ohio
I am a stage 4 Neuroblastoma survivor and a mother. My youngest daughter has many health problems, including Cerebral Palsy and multiple birth defects. Please join us as we navigate through this "special needs" journey.
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It's been so long since I've u ... by Hope Posted in: Blog Posts in Children's Health It's been so long since I've updated.  June was a rough month with Ava being inpatient 3 times.  We switched up her home hypoglycemia/illness protocol.  We still have IV  D2 ... Read on »
Rocking the boat by Hope Posted in: Blog Posts in Children's Health I'm a terrible blogger.  School is out for the Summer.  Dakota is an 8th grader, Christian is a 3rd grader and Ava in Kindergarten.  Dakota got a Presidential award For Aca ... Read on »
Finally an update by Hope Posted in: Blog Posts in Children's Health I know I'm the worst blogger ever. I'm sorry. This blog has turned into a health blog about Ava and I really don't want that. I'm not sure what I'm going to do with it. ... Read on »
Time flies by Hope Posted in: Blog Posts in Children's Health I try not to get too hung up on the Mitochondrial Disease diagnosis and what that means for Ava's future, but this week was hard. Our Mito community lost a beautiful you ... Read on »
Homeschooling by Hope Posted in: Blog Posts in Children's Health Since my last post Ava has been admitted twice. Her special needs ped thinks it's time to take her out of preschool for a while. Ava doesn't handle illness well. Today i ... Read on »
sleepy hero of mine by Hope Posted in: Blog Posts in Children's Health Lately we've had a lot of sleeping, which is par for the course with a Mito fighter. But she's still a goofyball and look at her Beads of Courage collection ... Read on »
Hello there by Hope Posted in: Blog Posts in Children's Health I know I'm terrible at posting.  We are trying to enjoy our Summer.  Kings Island, movie theaters, Cincinnati Zoo and whatever else we can find to do.  Doctor appointments ... Read on »
Since my last post Ava has bee ... by Hope Posted in: Blog Posts in Children's Health Since my last post Ava has been admitted and discharged 3 more times.  It's been a rough month for illness for her.  She's been out since Thursday and is on antibiotics. Imm ... Read on »
Spoke too soon by Hope Posted in: Blog Posts in Children's Health Ava has been inpatient for 2 days for her usual issues. Her glucose was not responding to anything I was doing at home and remained in the 30's. After much needed glucose a ... Read on »
There's really no excuse for n ... by Hope Posted in: Blog Posts in Children's Health There's really no excuse for not updating my blog.  Life happens and I just run out of time.  Ava turned 4 and Dakota is 12! Ava had her Angry Birds party which was a huge a ... Read on »
Ava finally got discharged yes ... by Hope Posted in: Blog Posts in Children's Health Ava finally got discharged yesterday. We learned what Red Man Syndrome is and that was interesting. It took a few tries to wean dextrose while on feeds, but she finally ma ... Read on »
Ava has a UTI and developed re ... by Hope Posted in: Blog Posts in Children's Health Ava has a UTI and developed red man syndrome from the Vanco. They are giving her benadryl and extending the infusion time to 2 hours to help. She is also on zosyn until her ... Read on »
I hate this by Hope Posted in: Blog Posts in Children's Health Ava was admitted today for hypoglycemia and feeding intolerance. Her blood sugar was in the 30s. I gave D25 via port and took her in. Shes been sleeping all day. Tomorrow g ... Read on »
We met up with Ava's spe ... by Hope Posted in: Blog Posts in Children's Health We met up with Ava's special needs pediatrician last Friday at a symposium. He told me he got some communication from Ava's endocrine Dr that she wanted to try a wate ... Read on »
Doing great by Hope Posted in: Blog Posts in Children's Health Everyone is doing great lately. Ava has had a few appts this week with her special needs ped and neurology. We are going to put her on Amitriptyline for her headaches and ... Read on »
Just to let everyone know that ... by Hope Posted in: Blog Posts in Children's Health Just to let everyone know that I'm not sure what to do with my blog right now. I've had over 100 requests to be added to keep reading and the limit is 100 readers. I'm jus ... Read on »
Home with updates by Hope Posted in: Blog Posts in Children's Health Ava is now home and back to her normal, goofy self. She has a new emergency protocol for hypoglycemia. In case of blood sugar below 45 that will not come up (due to vom ... Read on »
wednesday update by Hope Posted in: Blog Posts in Children's Health Things have settled down here a little. Glucose is stable on dextrose. Neurometabolics came in earlier and they want Ava to see Dr Cohen. He is a Mitochondrial specialist ... Read on »
In the hospital by Hope Posted in: Blog Posts in Children's Health Things have settled down here a little. Glucose is stable on dextrose. Neurometabolics came in earlier and they want Ava to see Dr Cohen. He is a Mitochondrial specialist ... Read on »
Going private by Hope Posted in: Blog Posts in Children's Health Someone has stolen some pictures of Ava and is using them without permission. For this reason I am making my blog private. I'll leave this up for a few days so that every ... Read on »