February 4, 2011

Just thought I would update about Hope's feeding program. I found out that Seattle Children's runs a program much like the ones in Austria and Germany. They have done the rapid wean for the G-tube for a while, supposedly, but made a few changes once Markus from German came over and worked with them. They don't wean calories and fluids down to 0% like Austria/Germany does. Hope will more likely be getting 20% calories right before bed and 80% fluids. I felt more comfortable with this, and also felt more comfortable doing a wean with professionals by my side, considering Hope's medical history. It takes a little bit longer than the European program because the body remembers that it will still be getting food, but it is enough for the children to start feeling hunger and feeling enough motivation to eat. So, we will be going to Seattle for two Weeks on March 28. Peyton will be staying with with Justin and we are working out the details for her care during the day while we are gone.

All of Hope's doctors are on board, and her cardiologist was saying that his doctor friend took their child (100% G-tube fed) to Seattle and was successfully weaned.

This particular program has only weaned a little over 40 children and it has been about 80% successful (in comparison to the 95 % success rate of Austria/Germany) The OT told me, though, that the other children who did not wean had specific reasons, like getting sick or having other developmental problems that affected their progress. So the chances of this being a success are fairly great.

I am going to be going up with a friend of mine who also has a child that is G-tube fed. We are sharing costs of traveling so it will be great to have someone along!

The program is two weeks, we will come home on the weekends, and hopefully stay at the Ronald McDonald house. If the house is full, we will stay in a nearby hotel.

I plan to keep fairly detailed updates about Hope's progress while we are there, because many of the mom's blogs that I have read about their children's progress is the reason that was able to find out about these programs and learn about how they work. I know the hopelessness and frustrations that comes with having a child who does not eat, and the success stories that I have read of kids who were just like Hope, have given me that "light at the end of the tunnel" that I wanted.

There are no guarantees of how this program will go with Hope, because she is in control, as well as God, but it's really nice to know how well other kids have done and I am excited for both Hope and our little friend as well. Anyway, just thought some of you would want the update :)