28 May 2011

Feeding Clinic Update

Our week with Nana and Papa flew by. We are so sad they had to leave early this morning. We thoroughly enjoyed having them here. They were so helpful to us with the boys and particularly helped us pass the time away. We loved sharing meals with them, spending time in the room with them and exploring Dallas with them. Overall, we just enjoyed their presence.  They are generous to us in so many ways and we appreciate every bit of love and help they provide to us.

We are finally in a routine downstairs in our new room.  We do like it here.  We sacrificed a few important things to be down here but we gained easy access to the playroom, a much more laid back staff and more freedom to move about.  It seems like the floor upstairs is for more critical children, so being down here feels more like living in the dorms than being at a hospital, which is good.  I am having to work pretty hard to take a shower with my cast in a separate area down the hall.   But I'm getting in a routine so its less bothersome.

Bennett is still doing well with his eating.  He is still eating about the same amount as earlier this week but they are about to move him from thick liquids to thinner liquids.  This is because he is demonstrating he can tolerate and handle the thinner liquids without it spilling out of his mouth.  They start with the thicker liquids because it's often easier to handle at first.

Brian and I will start training next week so that we learn this behavior feeding method.  I hope that it will go smoothly.  I have really enjoyed being able to step back and not be so involved with his feedings.  It has been nice at the hospital to not worry about when he needs to take medications, getting his tube feeds set up or whether or not he's eating orally.  Cystic Fibrosis seems to be less of a focus here since he is not sick and maintaining his disease is relatively easy in a hospital.  It is the nurses' job to tell me to give him his meds (and make sure they are prepared to ready).  It is the nurses' job to check his poop and make sure his "output" is appropriate.  And it is the nurses' job to monitor his fever, which might indicate an oncoming illness.

My thankful moment for tonight #25.) is I am thankful for being able to be mom and not nurse to Bennett these past few weeks.  It's so wonderful to figuratively kick off my shoes and just be able to focus on enjoying the kids and where we are rather than worrying about the responsibility of keeping my son healthy.

We have hit the halfway mark for our time here.  I expect that within another week or so we will hear more about what day we will be discharged.  Another feeding patient leaves tomorrow.  And Tuesday, two more feeding patients arrive.  I often think about how much we looked forward to sending Bennett to such a wonderful program and I am reminded how thankful I am to be here.  As the time approached, I dreaded that our time here would be difficult, especially for me.  But God has been good and has given me both peace and comfort while I am here.  I am thankful.  (We'll call that one #26.)

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