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January 23rd update from Ginger
Ginger: “I don’t think it’s likely that we’re getting discharged tomorrow, since I feel like we would have gotten a commitment on that by now. However, I’m okay with that because I don’t want to leave...
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Back to “Normal”
The family is adjusting to life back home…with a sick baby. Sweet Ian is still weaning off of his drugs, has multiple dosages of different meds a day, and is incredibly weak and shaky. His little body...
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easy does it…
One of the important things J&G do with Ian at home (besides medicating, feeding and keeping him from pulling on his PICC line), is physical therapy! Before the babies got sick, Henry had been...
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Little by Little
Caid and Henry ran around the yard blowing bubbles the other day, Ian was content to sit with mama and watch. The hardest thing right now is the physical and emotional toll the treatments are taking on...
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Test Results…
Thought i would go ahead and let everyone know that Ian’s final test came back negative on Friday, meaning they haven’t found the gene mutated with HLH. The hope was to find the mutation, and test...
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this week’s report…
So sorry for the lack of updates. Things are just moving along day to day, not a lot to report, which is really pretty great! The boys are doing well, their colds never progressed to anything...
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day of rest
rest day & scooter ride…how much better does it get? Ginger writes: Last night Ian had a low heartrate while sleeping, which had been happening the last three nights. Everyone thinks it was likely...
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Day +10…numbers looking better!
Ginger writes: Today was pretty eventful. Ian’s ANC (absolute neutrophil count – the number that means when we can come out of BMT isolation to our room) was 450, up from 207 yesterday. Once the ANC is...
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Day +15, playroom time, and lots of monitoring
Ginger writes: Ian’s ANC counts have been dropping the last couple of days, yesterday the count was 1539, today it is 910. That is not unusual, there is a drug they give (GCSF – which stands for...
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Day +24 big changes coming…almost home!
Ginger writes: masked babe Very eventful day here at CHOC, in a good way. Tonight is Ian’s first night without IV fluids running overnight. He received more platelets today to try to prevent further...
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