Friday, October 30, 2009


Cartoons & Breakfast


We went for Anna's GI appointment with Dr. O today. I was thrilled to find out we were indeed there on the right day this time. Anna had gained a pound since the last visit which was 2 months ago. I have never been so proud of a pound in all my life. Dr. O and I discussed Anna's progress a bit and then I just finally told him that Kenneth and I are not opposed to the Gtube and are actually ready for it if he feels it is appropriate at this time. We have fought long and hard but we have lost this battle. We have tried everything we know how to do but things are just not getting any better. His response was, "then let's get it scheduled." It seems so strange but I have nothing but peace about this decision. We have spent almost 2 years now obsessing about every calorie and every bite and every ounce that we could get Anna to take and we can finally take a deep breath and let that go. If she chooses to eat, great, and if not, that is fine too. I can go to bed at night not fearing what will happen if she gets sick or have to listen to her little tummy growling and yet still not be able to get her to eat. It is kind of like that by surrendering we are actually gaining some control. Dr. O and I discussed the new feeding plan and decided it will be to let Anna eat whatever she wants during the day and put her on a pump at night. We will start slow and increase her feeds until she is tolerating the right amount. She will be using a formula called Peptimen Jr. It is hypoallergenic since she still does not really tolerate milk products. They used to put a Gtube in first and then weeks later go back and place the Gbutton but Anna will get the button right from the start so there will be no need for another surgery in the near future. We will have to just stay overnight at Cook's for one night for pain control and to make sure all is working well. It is hard to put into words how I feel about all of this. It isn't that any of this is what I wanted but it is the best thing for us, right now, given the circumstances. It is our prayer that this Gbutton will allow us to get Anna off of all of the meds she is on and allow her to sleep naturally because she will no longer be starving. It is so hard every night to load her up with adult doses of adult medications and know that they are really not so good for her. So what some might feel is devastating we are smiling about because we know it has to get better from here...

1 comment:

  1. I think that's very brave of you!! I'm still trying to avoid a Gtube...scares me to death. I can't see Katie ever leaving the button alone and picture lots of gross scenarios of her opening it. :(