Day 157

The last 24 hours have seemed really really long. Ryman is doing great but she has 29 doses of medicine a day right now. Its a full time job for Jeremy and I to get her fed and get all those medications in her. She is loving being out of the hospital though, at least it seems that way. She is pretty content until we are trying to force her to eat. We end up pushing some down the NG but she is still taking the majority of her formula by mouth. We are trying a very expensive formula to see if she does better with it. Funny thing is that it will taste more like her metabolic formula so maybe she will like it. The team suggested we try it since high levels if Prograf can cause a dairy allergy. We shall see. I think it will mainly be us having patience and when she is ready she will eat.
I have to give a big thanks to our team at children’s national. Kristina and Erin spent their own time today helping us work on meds and a feeding schedule. They are amazing!
We have our first clinic visit on Monday so hoping we get in a routine by then.
Feeling lucky to be in a home atmosphere with our little girl and her getting some normal life activities. Bumbo seat, momma roo, outside time, car rides, BATHS!!
Hope everyone has a great weekend! Love you!

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2 thoughts on “Day 157

  1. Praise The Lord that Ryman is getting better! Prayers for continued healing, a healthy baby and strength and patience for you all as parents.

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