Thursday, May 13, 2010

Planning Ahead

I haven't taken the time to sit down to write a blog post all week but I have been busy making plans. The NIH has invited Qavah back to be seen by Immunology and we've been asked to stay an extra day to have an MRI of her head and neck. She'll have to be sedated for that. We'll be heading back to Bethesda the first week in June. I've also had to wrestle with Qavah's insurance again and that always takes time. I have a great respect for families who have to care for really sick children while fighting battles with insurance. Qavah is relatively healthy so I can take time away from her to handle difficulties as they arise, but it is still annoying.

Kathryn has made a change in her medical team and is seeing a new endocrinologist. At her first appointment today, the doctor focused on her bone loss. She has now lost over two inches in height, and that troubled him more than anything. He is going to try to adjust some of her medicine to hopefully improve her bones. The calcium she takes faithfully every day is not making its way to her bones to build them up. She had some labs drawn and will see him again in a month.

In between the planning and doctor appointments, we have been missing Ellie, cooking, cleaning, and catching up on spring projects. I fixed a nice dinner and Qavah stood at the window waiting for Paul to drive up after work this evening. She flew out to greet him and jumped into his arms. Kathryn greeted him cheerfully at the door and he ended up in the kitchen where I had dinner waiting for him. He said, "I love coming home to my girls." We girls do love to have the castle ready before the King comes home!