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Wednesday, May 12, 2010

Does it ever end?

Tuesday Bailey had a GI follow up appointment, she gained a little over a pound in a month which is good but unfortunately not good enough. Bailey's eating hasn't picked up enough for them to consider taking the tube out completely. Dr. Sehgal is afraid if they take the tube out or lower her feeds we will be in the same boat we were in again with weight gain and lack of calories. So they would like to place a G Tube for a more long term type of help. We have to get an x-ray of her stomach before we can get a date but it will within the next 2 to 4 weeks and she will be admitted to Children's for 2 days.

Her choking has continued and she has had more blue episodes, we've seen every team to address the issues except pulmonolgy. We have an appointment for May 24th to see the Pulmonologist that she saw after she was released from the NICU. I hope to god he can find us some answers because it is the scariest experience we've ever gone through and we are so afraid of a bad outcome. There has to be something SOMEONE can do.

We will be heading back to Shriners in 2 weeks instead of 3 months to check out her braces, they've been leaving sores and Dr. vB just wants to do a brace check to make sure everything is going okay.

This month is ridiculously busy but I am thankful for every single day that I wake up to my beautiful angel.


"Fall into me, my arms are open wide and you don't have to say a word cause I already see that it's hard and you're scared and you're tired and it hurts and I wanna be the one you reach for first."