Our Redirected Flight

Our Redirected Flight

Wednesday, April 10, 2013

30 Month Visit to CHOP

We returned to Philadelphia last week for Grayden's 30 month follow up as part of  the MOMS Study. It feels like just yesterday that we began this journey, yet it seems like a lifetime ago that our lives were forever changed.  What an experience it has been so far!

We left on Easter Sunday on our first family road trip outside of Michigan.  We made a stop in Pittsburg to stay for one night to break up the drive and then headed on to Philadelphia Monday.  We were so excited to be back in one of our favorite cities that we now consider our home away from home.

We spent the first night walking through the Campus at UPenn and then hit up our favorite restaurant for dinner.

Tuesday and Wednesday were busy days filled with appointments.  Tuesday, we spent the morning with a GI doctor (who we had requested to see) to discuss bowel management for the future.  I don't want to share too many details on here (for Grayden's sake when he is older), but this is our biggest area of concern/frustration for the future.  We are still exploring our options and gathering as much information as we can.  We left the appointment with a plan, but are now second guessing that plan.  We would like to try options that include as little medication to no medication first if possible, just not sure how this is all going to work.  So frustrating to say the least!

Tuesday afternoon, Grayden had an ultrasound of his kidneys and bladder and then a  physical exam and developmental testing by a pediatrician   Austin and I also had to fill out questionnaires and answers lots of questions about us and our family. During the testing for the study, the examiners don't really report much of what they are seeing or observing.  We are allowed to ask questions, but they don't give us scores.  They are also not allowed to know what part of the study we were in or where the location of Grayden's lesion. Even though we weren't told a lot during the testing it was still fun to watch Grayden interacting with all of the professionals and to hear the little comments that they did make about his movement and language!

Tuesday evening, we rode the Subway downtown and spent time at a local park that we frequented while we were there three years ago.  It was so much fun to watch the boys play. During the summer of 2010, Zander and I spent a lot of time at that park.  Much of that time for me was spent sitting in the wheelchair watching Zander play, and wondering what our lives would look like in the future.  I don't think I could have painted a better picture then watching my boys playing on that playground together. We are happy, life is for the most part "normal", and those boys bring us so much joy.  If I had only known back then...

Wednesday, Grayden and I returned to the hospital for more appointments, while Zander and Daddy had a special day in the city.  They went to Smith's Free Playplace in the morning and then walked around downtown in the afternoon.  Grayden had developmental testing all morning.  It was exhausting  but very fun to watch.  By the end, I thought he might fall asleep because he was answering questions with his head on the table.  He got a little slap happy towards the end as well, and started saying some pretty silly answers to the questions he was being asked. Just a tad frustrating for me, because he wasn't answering some of the questions that I knew he was capable of, but I couldn't really blame him after 3 hours of testing!

The afternoon, was spent with the Urologist, Dr. Carr doing Urodynamics testing. Grayden was cracking me up during the tests because while he was being cathed he told the doctor multiple times, "I don't want that decoration on my penis.".  Grayden continues to have healthy kidneys and his bladder looks good as well.  This is another area that a game plan has been started, but we will continue to work out the details as Grayden gets older.

We had the opportunity to meet another family who had fetal surgery while we were there, who had their beautiful baby girl on Monday. It is always fun to meet other people who are on this same journey.  We also had the chance to see the doctor who delivered Grayden as well as some of the other professionals that we had the opportunity to work with.  And as always, it is so nice to see Jamie, the study coordinator who is pretty much extended family!

Thusday was a day just for our family.  We started the morning at the Market for breakfast and then rode the city bus to the Please Touch Museum. The boys had a blast!

Friday, we woke up super early to travel to New York City to see an orthopedic doctor, who is highly recommended by our ABM team.  I'm going to save a whole post for our visit so stay tuned!!

The MOMS study received a second grant to follow up with the participants between the ages of 5 and 8, so we will again be traveling back to Philadelphia in the future and we can't wait!!

And lastly, check out this boy doing the stairs at the park!