Julien's Update 7/21

Today Julien had the rest of his hearing test and everything appears to be totally normal. They do want us to still do a follow up in a few weeks just to make sure nothing has changed but everything looks very good. He is getting better at feeding from a bottle but he still coughs sometimes and they are watching his suck swallow reflexes. Since he was on a feeding tube and got a later start, he needs a little bit more work with feeding and they won’t send him home Until he does better. We tried breast-feeding again today with the lactation consultant and he’s having a hard time with it. They want us to focus on bottle feeding him breastmilk for right now and once we get settled at the house work more on the breast-feeding with the consultant that can come to the house when he is in a more relaxed environment. He is scheduled to have his circumcision tomorrow… Poor guy. They said the goal is for him to go home at some point next week but they are not sure when that will be yet… Possibly mid week. He is still on phenobarbital to prevent seizures and they will keep him on that for 1 to 2 months and then hopefully wean him off when we go back to see the neurologist.


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