Dr. Levitt

So the week is coming to a close. We have allot of mixed emotions.
We are thrilled that Maddie is cleaned out and probably the emptiest that she has ever been in the last 3 years. We can not believe how soft her tummy is. Ever day she continues to eat and eat and still empty so that is great! We are still not able to even think about “big girl undies” which is a really bummer. We probably had to high of expectations for this week as we were hoping to be coming home in underwear. We are having about 1-3 accidents a day and are not sure if that will change. After talking to the nurse today I have a better understanding of what is going on. They said that she was clean again this morning on x-ray so that is great. They feel like she could just have no sensation at all in her rectum and that is why she is not knowing that she need to go. They said that if that is the case it will not change. It will take a few weeks to see how she reacts once we are back in a normal routine. Lyndsey said that typically an x-ray will show in a week or so that we need to up the laxatives. If that is the case with her we will be at 5-6 squares. To high of an amount to continue for long periods of time.
We will just take it day at a time. Tonight they had me double the amount of pectin to see if we could “bulk up” her stool to possibly allow her to feel more the urge to go to the bathroom. That will take 24 hours to kick in so we will know by Saturday if that will help.
Also, her urine sample came back clear which stumped us as she is still miserable. They said that she could be dealing with mild dehydration and that if her urine is thicker it can cause some pain. We will make sure that she is drinking lots and see how she does tomorrow. If she still is miserable we will probably look into what else could be causing it.
It has been an exhausting 10 days but overall we feel like we have a much healthier daughter then when we started and a clear direction as to where we are heading, something that we have not had the last 3 years. Please pray that Jed and I will make all the right decisions for Madison in the months to come.
We meet with the Dr one more time tomorrow before we go and then he wants to have a conference call with us next week to touch base. We will keep updating the blog as we travel home and get into a routine. Our plans a re to drive to Akron tomorrow to get Olivia and then head home on Sunday!
We love you all and appreciate you!
Nikki