Long story short, we never heard back and then there were issues with records. We lost track of this for awhile because we were dealing with other Gavin health issues.

Anyway, Gavin’s case manager from Akron Children’s Hospital called the other day and wanted to see if there was anything he could do to help. I asked him about the hematoligist and he checked into it.

While we still can’t see the original person we were referred to, he got us into someone and that’s huge progress. At this point, we just need to see someone and now we have an appointment for early September.

We still have to get into genetics and Gavin’s case is under review to see if he needs to be seen before 2019.

Anyway, these are big steps forward and I’m so grateful we managed to get the appointment. We need to know what’s going on with him and whether or not we can do anything to help.

We are still working on rheumatology for Gavin as well because his joints are so loose, they keep popping out of socket.

I didn’t want to take on too much too fast because at this point, I can’t take the car very far until we figure out what’s wrong with the brakes.

For now though, I feel like this is more than enough to be grateful for at the moment. One step at a time is still moving forward.