MRI day

Today is the day. Yuck..... We got up around 6:45. We decided to go ahead and pack everything up so we wouldn't have to load it up later. Cayden and Ryland were staying with the ladies today(Grana, Aunt Sandra, and Aunt Barbara.). Just thought that would be easier. We were hoping for a short day but you just never know. Keelie kept asking for her milk but she couldn't have anything. We got to Lebonheur around 8:45. She was put in a holding room pretty quickly but the wait was horrible. They did not come get her until 11:48. Ugh!!! The nurse came in several times and apologized. I told her Keelie was very hungry. In fact, Keelie got weak and ended up falling asleep in her Daddy's lap. Josh and I had to go to a waiting room and we were there for 1 hour before they came to get us. Longest hour of my life. We went to the recovery room where she had to stay for 15 minutes just to make sure she was going to be ok. Whew....glad that's over but now nervous for the results. Let's eat. We went to the cafeteria and ate. We decided to stay close and go to Dr. McVicar's office early hoping to see her early and not be so late getting home. Well that didn't work. Actually it did a little but not very well. We luckily were the first ones there so we were the first ones to see her. Unfortunately we didn't see her until 3:15. We got there a little before 2:00 but the appointment wasn't until 3:10. We didn't leave until a little after 4:00. I can't imagine what time we would have gotten out of there if we had gotten there at our appointment time.

Dr. McVicar looked at the MRI and she said the myelin sheath on her nerves in the frontal lobe still looked like it was missing and the space between her subdural spaces of her brain were larger than they were supposed to be. She couldn't tell us if it had stayed the same, gotten worse, or gotten better because she couldn't compare the MRI from July to this one and the report from today's MRI had not been read yet. So another waiting game. She did seem pleased with her speech. And she is talking more. She did recognize that her joints have a good bit of laxity in them. She did sign the letter for the braces for her legs and she wrote a prescription for them so hopefully the insurance company will pay for them. Lastly, she was very thankful and excited we had gotten Keelie in a research study. She gathered lots of paperwork for me to take to Kentucky. Now we head home. We will follow up in 6 months.