Comprehensive Clinic

We got back last night from our trip to Seattle for a comprehensive clinic for the boys. Good news is they look good. Both boys have full range of motion in their joints. Hooray!! They also think since we haven't had any breakthrough bleeding on Ezra we can try to back off to 3 times a week and see if that works for him. The fewer pokes the better for that guy... as long as he doesn't have any bleeding. So now both boys will be on the same prophy schedule. Hopefully that is easier to keep track of. Otherwise I guess we are doing the best we can and the boys are doing really well so a big pat on the back for the parents.

We had the worst time getting our travel approved to go to Seattle. It was just the weirdest combination of things that made it horrible. First off getting the appointment scheduled early was easier said than done. This month was the first comprehensive clinic that our clinic has done so it took them longer than normal to get it all set up. Then insurance thought that one parent was plenty for both boys... after all the only time they were scheduled to be in two places at the same time was when they were being infused... no need for a second parent then. Even though they were in the same place at the same time we had two providers in the room at once each asking questions... so one parent handled one provider while one parent took the other one. It was super wild and crazy!! Anyways back to the craziness of getting our travel approved... Ian did some major work to get it all together. He spent a ton of time on the phone finding out what the hold up was and making sure the right people got all of their stuff. In the end a letter of medical necessity was what got both of us approved to travel. It was an anxious couple of days around our house leading up to our visit not knowing if we would even be able to go to our appointment. Luckily Ian is persistent and patient.