Hooray, hooray, the 1st of May!

We have a busy two weeks ahead of us, but if everything goes as planned, we will be home by the 1st of May! After a long week of feeling very fatigued and weak, Erin had a great checkup today. She walked over 3/4 of a mile in PT (not bad considering 2.5 months ago she could barely walk 25ft some days), her lung function test was at 60%, and the doctor said her lungs sound amazing! She can also permanently stop her nighttime feeds as long as she can maintain her weight (Thank you Arby’s Beef and Cheddar!). New life and new beginnings await us. Happy Easter everyone!

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