Welcome to Holland A fellow Holland mom & friend I met in college shared this poem with me. Her son also has a very rare genetic condition and they are…
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The 5 Stages of Grief No matter what a person is mourning, they typically cycle through the 5 stages of grief. For me, I have an internal struggle with saying…
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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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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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Monday, 7/19 EEG is on. Neurologist came by and told us all good from his end – keep on the Phenobarb because it’s working and she’s not seizing! EEG is…
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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…
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Wednesday, 7/14 The frustration begins. At 1:40 in the morning, I texted my mom, “The medicine isn’t working. She’s still seizing, and no one seems to know what the fuck…
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It’s just so frustrating. Sterling and I wouldn’t trade Izzy for the world. But we could have prepared if we had known. We could have had her treated from birth…