Monday, March 17, 2014

Cincinnati...Here we Come

Is it really March already? Believe it or not, it has taken us from October until now to get into Cincinnati's  Pediatric Gastroenterology Program. In my September post, "A Blow to the Gut", I shared results of  an MRI and bladder procedures Mia had, both of which indicated problems that are impacting her toileting. With this new information, we are trying to piece together what may or may not be working for Mia and how we can help her gain independence in her toileting. With issues in both bladder and bowel, we will need to look at each system independently. We, along with her doctors, have decided to focus on bowels first. Mia's current GI doctor referred us to Cincinnati Children's Hospital in order to take a more thorough look at Mia. Our visit is scheduled for May.

Dave and I are very grateful that Mia has a full time aid helping her to manipulate her school and assist with her brace and toileting. Mia remains in pull-ups and is on a daily combination of Mira Lax and Metamucil. It is a less than perfect system. She has an average of three to four diaper changes during her school day and a daily average of eight. She is pulled out of class to get changed in the Health Office and also receives her Mira Lax there. This means more time out of the classroom. Thankfully, this has not negatively impacted her peer relationships. We do fear, however, as she gets older this will begin to set her apart from her peers.

Although we try to regulate Mai's bowel movements, they are extremely inconsistent. There are times when she is just a runny mess and times when she is extremely constipated. It is such a tough balance and daily struggle. Much like an infant, we have to track Mia's bowel movements, how many and what kind.
In addition, we have the added issue of Mia's eating and slow growth. At five years old, she is only 27 pounds, 36.5 inches tall.

All of these things have led us to Cincinnati Children's Hospital, which is one of only five hospitals (Strong is not one of them) that do an extensive motility study of the GI tract. A colonic manometry will determine how well her colon works. She will also have an  upper endoscopy to examine the lining of the esophagus, stomach and the first part of the small intestines and a water soluble contrast enema to help identify continence issues. This week long study will be a combination of inpatient and outpatient. She will have to have anesthesia and be on bed rest for the colonic manometry.

To make this very unpleasant visit a little more tolerable, we are bringing all four kids. My mother has graciously volunteered to come with us and help us out. We have decided to make a mini vacation out of it seeing Mia will hopefully have 4 days outpatient. We plan on going to the Cincinnati zoo, aquarium, museum and other attractions.  Dave and I know the reality, this week will be unpleasant for Mia and difficult for us to watch her. It will be a lot of new information on top of a very emotional week. We are hoping the presence of Mia's siblings will help her and us!

As usual, we are asking friends and family to keep Mia in their prayers as she braves another medical challenge.