All in all, things are again slowly winding down for us. You can’t imagine how busy we were in Florida; we were up at first light and stayed up way past our normal bedtimes every night. We literally needed a vacation after our vacation, so we headed down south to check on things and relax for the weekend. Our neighbors have been mowing the lawn for the past couple of weeks, which has been so helpful and greatly appreciated! So, this trip we finally got to sit back and relax!
Last week, the girls spent most of the week at home with Brian. No, he’s not pulling his hair out……yet! We dug the pool out of storage and filled it last week so the girls could spend their days in the backyard swimming or playing on the play set. Boredom has not set in thus far, but we are only into our third week of summer vacation…
On Friday, Hannah went to Riley for a chest x-ray, an x-ray of her little leg and labs. After about 4 hours of sitting in a small room without windows, full of scanxiety, word finally came back that they were CLEAR! It seems that the doctor was busy and had assumed that the Nurse Practitioner had told us, while she assumed the doctor had been in and told us, so it all basically amount to a miscommunication and a whole lot of stress. Blood counts showed a slightly low reading in her hemoglobin, so we are to start her on a multi-vitamin. We’re continuing Septra for another two months. Hannah has been referred to an Endocrinologist for some additional testing. And finally, a decision was made as to Hannah’s follow-up schedule; she will be going back monthly for scans – alternating chest x-rays and CT scans monthly for the next 8 months. Blood tests and x-rays of her leg will, I think, be continued monthly, too. In two months, at the 6 month marker, she will get an echocardiogram and another one at the one year mark. She will also get a GFR and audiogram at the one year mark as well. Sounds like a plan!
While at Riley, we stopped in to visit the nurses and a few friends. It’s always nice to go back and visit with everyone, but it is also hard to see so many kids suffering from this horrible disease. Please remember the children at Riley on the 5th floor in your prayers.
