Another few days at Children’s Hospital of Philadelphia

Happy Memorial Day!

We had a very busy weekend. We spent the days putting up a pool.

This week we make the trip back to chop again. We will be there for two days. Addyson has appointments with hematology/oncology and her neuro Gi. We already have three appointments scheduled for August 6th as well (neuro Gi, rheumatology and hematology/oncology).

We are trying our best to stay hopeful but anxiety always runs high leading up to these appointments. It’s always so hard to leave one child behind for a few days to tend to the other. It’s hard to leave your spouse and make on the fly medical decisions never knowing which is right. It’s hard to provide addyson the comfort she needs during test / procedures yet be tough and let her know we are doing it to try and help her. It’s tough trying to juggle work and a chronically ill child. It’s tough but we do it because we are her family, her friends, her parents Co workers, her coaches. We have this tribe behind us that answers the phone when we need them too and they send support. They surprise her with a cute text, an inspirational text, a small gift, tickets to something fun. They remind us that during the tough days we have a group of people rallying to show her how tough she really is.

Dr Boyle is very knowledgeable so we hope he has some recommendations for getting Addyson to stay hydrated better. Even w the ng tube we have trouble unless we keep her pumping daily. We tried this weekend to see how she would do—she didn’t do that great with her fluid intake. I’m curious to see if he agrees with the ng, g or to try a nj tube. Hoping he can help w the functional abdominal pain disorder better. Hopkins really has no help when it comes to that piece of the puzzle. Their only recommendation was to put her through a feeding clinic which psych completely disagreed with.

Fingers crossed for progress and Sibo test results.

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