While Izzy was hospitalized, all medicine was given to her through her NG & NJ tubes, her IV, and her PICC line. Once the talk started about discharge, we had…
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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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Sunday, 7/25 Results came back good on the CT scan – no sling thank God. Finally someone gave us some clarification on Izzy’s heart “abnormalities”. Apparently hers is built differently…
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Saturday, 7/24 Last night was really hard. After getting the positive DiGeorge results, I couldn’t relax my mind. “no cure” … Stop googling. “likely to be diagnosed with Autism” ……
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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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Thursday, 7/22 Izzy is doing good this morning. The amount of formula through her tube has been increased enough to completely get rid of all the extra fluids through her…
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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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Tuesday, 7/20 After morning rounds, we waited for Izzy’s swallow study around 1 pm. She passed it with flying colors. This test was done in x-ray with me feeding her…