4 days short of 11 months

Hello all! We hope you had a good Memorial Day weekend. Our thoughts go out to all who serve(d). Madeline got released from the hospital on Saturday afternoon. We went home, dropped everything, got a picnic basket and went to the park for a quick and quiet BBQ. We had a really good time, played in the grass while dad made fire from small black rocks. :-)

Sunday was great, Madeline got a very warm welcome back to church, she was so excited to see everyone. Afterwards, we went to the Zoo and got to see all the animals, including my family! It was very fun and a desperately needed break from all of the needles and stethescopes. We went home in the afternoon and played on the front porch with her uncles, while dad once again made fire from small black rocks and cooked fresh cow on them.

Monday was pretty hot, Maddie hung out down the street while Dad and I cleaned up the basement and organized everything up into the attic. We had another BBQ down the street with our pastor and some friends but unfortunately during the course of the last few days, Maddie was starting to feel pretty ill again. During the day, dad youtube'd and learned how to tune up the gears on our bikes, pumped up the tires and fixed up a two seat bike trailer Savannah's grandparents donated to us, he hooked it up to my bike and after the BBQ we took Mad-Belle for a ride as we took care of some errands before finally going home and putting her to bed.

Tuesday Madeline went to day care, she was steadily going downhill, her nurse came and got labs from her, and her sitter reported that she was having trouble keeping her awake. Dad tracked down her Nephrologist and went over her condition, and the labs concurred, she was once again dehydrated. We left work and took her to the ER at Rainbow Babies once again, and she was admitted for dehydration and feeding intolerance... again.

I'm not going to go in to all the details, but it's been a very tough road still, sitting in the ER with Maddie and watching as she pukes up blood and stomach acid is not a very encouraging experience, we keep having the same issues, and even with the G/J-tube we're still having feeding issues. They had us try going up on feed volumes to over-compensate for Madeline's water losses, but every time we've tried, she begins to have severe abdominal discomfort, screams, and pukes up stomach acid and now blood. Dad had a thought on Tuesday night and did some research yesterday, he thought given her past, perhaps the issue is neurological, some quick research showed that there have been links proven between neurological disorders and feeding intolerances, he brought this up with GI yesterday and the doctor agreed that this is a well known issue and that while it will not change the treatment plan, he is going to hook us up with Nationwide Children's Hospital in Columbus, OH, they have a specialized GI motility clinic there that can do some tests to figure out exactly what the issue is and then lead us to (hopefully) the source of the issue. Additionally Nephrology is doing a more precise GFR test to determine Madeline's exact amount of kidney function, this should give us some sort of idea how much the kidneys may or may not be influencing the feeding intolerance.

Anyway, thanks for all the prayers and donations that keep coming in via the link on the right. Remember that Madeline's birthday is coming up July 4, we've got a big party planned at the metropark located at Memphis and Teideman from 12-2 all are welcome, gifts and donations should be given to Providence House in Cleveland, OH in Madeline's name as we will not be accepting any for Madeline at the event. We hope she'll be out of the hospital for it, if she's inpatient, we'll try to get a nurse or someone to bring her, or get permission to bring her, otherwise one of us will be there for sure!