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Our new normal
April 17, 2020

Good morning!

Yesterday is a quiet day at our house, treatment takes alot our of the kids.

It’s quite the process, shaving their heads, so there is a sterile access, making sure the room and everyone is sterile, with gowns and masks and gloves. We have to hold them down them down while they insert the needle into the port so that they precious enzymes go directly to their brain. Then taped in place for the four and half hours that it slowly drips in. So now you can understand why the day after is a day we take to relax and recharge after an early morning and long day at the hospital.

But then then the following day we have our little star back, alert and happy, ready to start her day at 6:30 am.

More News

A hard anniversary
April 30, 2020
Some special moments
April 24, 2020
Nana’s Birthday
April 15, 2020

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