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!

Rocking the boat

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 Academic Excellence for having at least a 4.0 gpa all year.  So proud of her! She’s trying to grow up way too fast! She’s auditioning for our…
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Sleepy hero of mine

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. She’s earned every bead and she’s proud of them all!
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Hello there

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 and therapy visits round off our weeks.  We’ve seen Endocrine (nothing new, rediscussing GHT), Pulmonary (started a couple new meds, discussed BiPap and IVIG), Gastro (started…
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Ava was discharged

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 managed to maintain blood sugar levels. Got her GJ tube switched out. She’s lost about 4 pounds so her tube size is now 1.5 instead…
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Summer medical update

I thought it was time to do a medical update, keeping in mind that we don’t know more than we know. Here’s what we know right now: We know she has a Mitochondrial disease (ETC1), and many doctors feel she has multiple Mitochondrial deficiencies, including MNGIE. Her diagnosis was made with a muscle biopsy. A…
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Long time no post

I took some time off blogging, but I’m back Ava’s medport went in just fine.  With the exception of strep colonization at the port site, all is well.  She doesn’t love being accessed at all, but she’s getting less terrified.  Her Mitchondrial disease is starting to progress.  Her liver is enlarged, her motility is terrible,…
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Catch up

A lot has happened since my last post.  Ava has been inpatient twice in the last month for cyclic fever and hypoglycemia.  She also had to fast for an echo (she’s been having tachycardia), which didn’t go well.  She can’t fast with her blood sugar plummeting.  Pedialyte doesn’t help, it doesn’t have enough sugar in…
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Dakota Brooke

Happy Birthday to my beautiful, smart Dakota.  What a joy you are.  You are growing into an amazing young lady.  A perfectly understanding sister to a medically fragile young child.  A perfectly bossy sister to a younger brother.  And a perfectly annoying sister to all your older siblings.  The way it should be.  You have been on…
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Discharged!

Ava was discharged from CCHMC   Her EKG showed sinus tachycardia, and she now has to go to the cardiomyopathy clinic regularly and get echos every 6 months. She has to have an echo within the next week or so.  The cardiologist explained that since she has Mitochondrial disease, she has to be followed closely by…
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childrens

Ava is back in the hospital.  She’s febrile and tachycardic.  We’re waiting for an ekg to see if we can find a reason for her high heart rate, which is high even when her fever is down.  She’s on feeds and maintenance fluids (D10 H.N. saline).  Blood sugar is good, for once.  Hopefully we can get…
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