During our inpatient stay, we learned just how important it is to have good healthcare workers. While Izzy was hospitalized at Akron Children’s, we worked with countless individuals – doctors,…
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Wednesday, 7/28 Met with speech today and that went well. Just finished another bottle so currently trying to hold that down. And finally someone actually spoke to a cardiologist. Not…
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Tuesday, 7/27 Today, Izzy will have an ultrasound of her kidneys to make sure they are anatomically correct since kidney problems are a possible symptom with DiGeorge/22q. We’re also checking…
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Monday, 7/26 14 days in here & maybe we’re getting somewhere? Neuro is taking Izzy down from 2 daily doses of Phenobarb to 1. This change will last for 1…
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Friday, 7/23 Reflux is a bitch. I can tell it’s really bothering Izzy. She’s fussy and making gasping and choking noises which are pretty alarming. She’s trying to figure out…
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Wednesday, 7/21 Sometimes I wonder why I share anything positive because it seems like those glimmers of hope just get ripped away from us so quickly… like we can start…
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Sunday, 7/18 When Izzy got her initial nasal tube placed, I asked if there was any way she could pull it out. They said no. So, Izzy pulled out her…
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Friday, 7/16 Sterling is over it. He wants to transfer to Cleveland Clinic if this hospital does not hear us out today. Because they messed up the second spinal yesterday…