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Claire’s Third Infusion
June 13, 2019

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Infusion #3 done!

I know it’s too soon to start seeing results, but I swear we are starting to see the sparkle in her eye that we have been missing.

Her little brother joined us for the morning for pre-op bloodwork, all ready for brain surgery on Monday. Hopefully Mark and I will be somewhat ready by then, we both wish this wasn’t their new normal. These 11-hour days are long, so I try to just appreciate that we have access to this drug and focus on the positives.

Claire is still suffering from soo many seizures a day, and we are waiting for a second opinion from some doctors in the states, hopefully as a group we can come up with a more successful treatment plan.

Until then she continues to just keep getting up everytime she falls and runs around the house, laughing as she chases the kitten and cuddles with Boo, so we will take it.

More News

We got a trampoline
June 30, 2019
Infusion four is complete
June 27, 2019
Josef undergoes port surgery
June 17, 2019

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