Tate has Mosaic Trisomy 8

Day 10 was a tougher day for Tate. She didn’t sleep well last night, more pain today, and just feeling too crummy to want to do much of anything. I did come back from doing laundry to find Dr. Nakano, Tates hematologist, building sand monsters with Tate. He’s one of the very best!

Water g tube feeds restarted as Tate didn’t meet the requirements for her 3 day calorie count-which wasn’t a surprise. Formula feeds will start probably Monday.

Looking forward to a quieter weekend with some good sleep and and a more relaxed schedule. You’d never believe how busy the hospital days are until you experience them. Outside Visitors are extremely limited, which makes me that much more thankful for our “internal” friends. Today I was able to hug the geneticist that first told me Tate has Mosaic Trisomy 8 and what that would look like and Kerrie Anne Green who was here for her sons appointments. Both have become fast friends and keep my time at the hospital from feeling so isolating. I wish the kids were allowed to hang out as Tates peer world is pretty small, but her nurses, PT, OT, Art therapists, Dr’s and child life specialists work so hard to make her days feel full.