Cincinnati July 2011 Day 3 First day of Doctors Appointments

Today was the first day of Brayden's appointments. He had 4 appointments to go to today. We started off at 9:30 with a Dexa Scan. They wanted to scan Brayden's bones to tell how "old" his bones are and give us an indication of how susceptible he is to fractures. We got there early and we were done before his appointment time!

Brayden and Alvin! In the Childrens Hospital garden!

We walked to the next appointment, which was scheduled for 10:30. Again, we got there early and was taken right back! This was for an X-Ray. They X-rayed Brayden's back and hand. This was another quick and easy appointment! Again, we were done before 10:30!

Brayden's next appointment wasn't until 11:00 so we walked to the gift shop and he picked out a puppy for Nathan and Caroline. Then we walked to the Guest Relations, who are WONDERFUL! They gave us free tickets to the zoo (for yesterday), discount tickets for the Aquarium (Saturday) and Entertrainment Junction and they also booked our room for us before we came and gave us a great discount! This hospital is VERY accommodating!

This afternoon Brayden was supposed to see the Neurologist at 11:00 and the Nutritionist at 1:40. We got to our 11:00 appointment early and everything went downhill from there. Dr. Wong (Neurologist) was running behind schedule so the plan was to have the Nutritionist come see us, then we would head downstairs for lunch and back up at 12:35 with Dr. Wong. We were excited because we thought our appointments would end early and my mom and Todd's mom were at the hotel with the kids waiting for us to get them for lunch! Didn't work out like we had planned!

The Nutritionist was so nice and we learned a lot from her! Basically we are going to watch Brayden's diet and try to get some of the weight off. He wasn't too happy, but as a family we are going to work together on this! After she left, they thought Dr. Wong would be right in, so we waited. She took longer than they thought and we didn't leave til 3:15! I felt awful that everyone was waiting at the hotel for us, with no restaurants in close walking distance (with the 2 kids and the heat!).

Waiting for Dr. Wong!

Anyway, we are very pleased with Dr. Wong. Brayden's doctor in Rochester hasn't ordered half the tests that Dr. Wong ordered and we are learning a lot of things that we should have learned 3-4 years ago! Brayden's hamstrings and heel cords are VERY tight. He is on the road to an early trip in a wheelchair if he doesn't start stretching more. BUT she is very pleased with his strength and she said he looks like he could be one of her "model" patients that stays on their feet longer! All we have to do is really push the stretching and diet and Brayden should be looking great when she sees him in 6 months or so! We can do this!

It was a lot of information. Todd and I are very overwhelmed with information (new information and old information that was readdressed). We are very irritated with the level of care that we received in Rochester and probably won't go back there again. It is worth it to bring Brayden the 8-9 hour drive to Cincinnati! We are switching him to Deflazacourt, which is another type of Steroid but is purchased from London. Hopefully with this, we will be able to curb some of his weight gain and his crankiness! She also added in an MRI tomorrow as well as bloodwork! He has not been getting enough Vitamin D so she is most likely going to increase that as well!

We went to Ruby Tuesdays for dinner and then went to the HUGE mall that is right down the road from our hotel! The boys found Mario and Luigi hats from FYE!

Tomorrow, it is MRI at 6:30, bloodwork right after and then 4 appointments from 9am to 1pm! Time to get some sleep!