On the road again....

Wow... how time flies when your havin fun! ok... not so much. After 7 years w/out a DX for Hannah, We have experienced several different way to provide her nutrition, from NG tubes, g-tube, mic-key button, to G-J button. Now, after an extremly rough month in the Hospital, she is on TPN. 24 hours a day. We were so spoiled to the adaptable backpacks that came with her feeding pump, that I'm real bummed about this new system. She now has to carry around a 2270 ml bag around, which is impossible for her. ( she is a 35lb 8 year old) and all the new rules that come with a central line are disheartening. no swimming pools, running through sprinklers..., yada yada yada. Then they say things like go home and have a normal summer!? HELLO!
Cincinnati has been contacted now, and we will be heading their way when we get the call. Hopefully they will be able to provide us with some long awaited answers, that neither Omaha or Denver has been able to find. It would so be nice to know what we are actually dealing with, instead of bandaiding all the side affects... anyway, come over to our site http://copleycrew.blogspot.com/ to read more about Hannah and our crazy life! God Bless everyone here!!