Cincinnati Children's Hospital - Summer

 

A hospital day for me can be exhausting. I never have just one appointment, it is always a full day and sometimes even two or three days.  We travel quite away to get there and even though Tibbs is a great travel buddy the car ride is long and I get tired traveling.  I know it is important, and I am going to see experts that know both me and my rare condition as much as is possible.  They do their best to listen to me, and find solutions to help me feel my best. This trip was different and even a little bit exciting.  I got to take by best friend Tibbs along to meet all of my medical team.  

  

Tibbs was a champ at x-rays and Pulmonary Function Testing, he did great on such a long couple of days and helped me through all of the challenges.  He helped me open doors, get on and off the elevators, and navigate around the hospital, supported getting ready to see new doctors and therapists.  I get exhausted from listening to and talking with all the team.  It is hard to hear what has gotten worse, even though sometimes I know what they are going to say before I go.  Every time I know they are going to tell me "do more stretching, or try this new equipment."  I hope my doctors and team do not read this, but if I did as much stretching as they tell me I need I feel like I would never have any time left in the day😅.  

   

I do my best and I know they all want to help me.  I know Tibbs helps me so much every day.  I notice when I tell people about Tibbs especially doctors and how I do things with him, how great he has made my life and given me independence. This was my best trip to Cincinnati ever and Tibbs made it that way.  We did get to bring the rest of my family and explore Cincinnati and a few extra places.  Stay tuned to hear about our traveling adventure.