Getting Ready

I started making a list of everything that Naomi and I have to bring and can we just say OVERWHELMED!  I cannot believe the amount of stuff we need nor can I believe the generosity of my friends who are loaning so much to us.  I have never left home for a month before other than when we were moving cross country and those times I had a Suburban and a trailer and no medical supplies other than a basic first aid kit.  Knowing I won't be able to just run out and get whatever I need makes packing so much more challenging and trying to keep it all manageable for airplane travel, the hospital and then the Ronald McDonald house makes my head spin.  We've been getting calls almost daily about the program, yesterday was the nurse practitioner, today the psychiatrist, who will call back two more times and we still need to speak to the social worker and the teacher at the hospital.  We're working things out with Naomi's school, trying to plan a birthday party for her and making sure all my other responsibilities will be taken care of while I am gone.  I am beginning to believe if you looked up insanity in the dictionary it is illustrated with my picture or maybe just my to do list.  I've almost got the care calendar for meals, child care and rides for the kids done and I know I'm missing something somewhere but I just have to let go and let James take care of whatever it is.  I would welcome prayers for Naomi and I and also for my father in law.  He fell off a ladder a week ago and is still very sore and unable to do just about anything.  My mother in law had planned on coming and caring for the kids most of the time I am gone but I am worried about her leaving my father in law if he is still in pain and having a hard time getting around.

16 days until we fly out.....17 days until we start the program

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We are finally on that path we began to doubt we'd ever get to.  We are getting ready for the very real possibility of saying good-bye to Naomi's tubie.  Naomi has been tube dependent for greater than 50% of her nutrition for two and a half years and in less than three weeks we will start an inpatient feeding program at CHOC (Children's Hospital Orange County) that has the real likelihood of Naomi leaving with no g-tube feeds at all!  I am a huge bottle of nerves and emotions as we plan for this big metamorphosis in our lives.  I do a happy dance when I think about not having closets full of syringes, extensions, pump sets, surgical lube, button kits, and more.  I would love to have my laundry room for laundry instead of formula storage and it would be pretty cool to live in a house without an IV pole.  Then there are the nerves, can I make it through the program?  It won't all be fun and games.  Naomi is going to have to eat foods she currently refuses and eat at times that are close to impossible to get her to eat now.  I have to stick to the program and not cave when she has one of her first class fits.  And there is the ever present nagging feeling of what if I fail?  Although I've worked through the feelings of I failed at feeding her three years ago and that is why she has the tube, they still surface from time to time, and right now they seem front and center.  What if I fail again?  I know I have to trust Naomi and myself that this time will be different and this time she will eat, she will succeed and this time we will have amazing support to make it happen.

So the countdown begins...18 days until we fly out....19 days until we start the program.