Tuesday, May 13, 2008

Day 6 - Part 2

Todays Special!
5 squares of ex-lax (at least it taste like chocolate!)
and 1 TBL of pectin

UUUGGGHHH.... Got a call from our nurse at about 4PM. There is stool still in the colon so we have had to up the dosage to 5 squares of ex-lax a day. We will have another x-ray in the morning. She has had several accident today. It does not seem like she is moving as much as she is eating though... we will see how it looks in the morning. For now we will just follow instructions.
Emotionally I had one of my roughest evenings tonight. We tried to stay low key today as Madison has been so exhausted. It was absolutely beautiful out so we decided to take her to a Cincinnati Reds baseball game tonight! All was well, we had gone to the bathroom 2 different times and sat for long periods on the toilet hoping to “catch” a bowel movement. No results either time. About the 5th inning she got restless so we went walking around. We came across a large playground (inside the ball park!) that had a ton of kiddos playing on it. There were probably 20-30 kids and then 3 times that in adults watching. She said that she should play so that she could “get all of her energies out”! We had been watching her play for about 15 minutes when a little girl probably 3 or 4 years old came over to the top of the slide and yelled at her dad “dad it smells like poop in here”. The dad busted into laughter and started telling all the other parents that he was with about it. I immediately panicked. I got Jed who was across the playground (we split up so that we could see her from both sides) we got her down and could tell immediately that she was indeed the culprit. It was all I could do to not cry when I was in the bathroom with her trying to get her cleaned up. It was the first time that I had seen and heard for myself – what she probably deals with more often then I am aware of. I felt so bad because she was standing close to the little girl that yelled that out into a crowd of people. I did not ask her any questions as I am praying that maybe she just did not connect all of the dots. She is 6 though... I know that we are hitting a stage where kids will be mean and notice that she is different. I am anxious because it is Wed tomorrow and it seems like we would need a miracle to get this all figured out by Friday. It seems like she is still clueless as to when she needs to have a bowel movement.
So we will increase the ex-lax and see what happens. Thanks for keeping us in your prayers! It has been a long week so far but we can feel the prayers that are being said on behalf of our family! Olivia is doing great! Danielle and Ted are keeping her so entertained that I am afraid she will be bored stiff when we get home! It has been so great to not worry about her and know that she is doing great! I called today and she was “to busy” to talk to me!! O'well...at least I know that she is having fun!
Off to bed...

Day 6 - May 13th

Still waiting to hear from the doctors today. We had the x-ray this morning and we are hoping that it will show good results! Madison has complained a little bit about having tummy aches today. We unfortunately have had 3 accidents since last night. She says that she does not know that she is going, which has always been the case in the past. Dr. Levitt believes that will get better as her body has time to adjust to not being totally impacted all of the time. He said that in the past her rectum and colon were so enlarged that she physically could not feel the urge to go the bathroom.
She continues to eat really well! The picture above is at lunch.... it is her with all of her empty zip-lock bags! Never does she finish all of her food! It has been so cute to see her anticipate the coming meals!
We will let you know after we hear about the results of the x-ray today.