Dave and I have decided that we need to start keeping everyone updated on the latest "Katherine" news through our family blog. This will help us share the news on a timely basis without repeating ourselves over and over.
At her neurology appointment on Tuesday, the Dr. decided to do further testing based on his observations of her. They are completing 2 DNA blood tests to test for Prader Willy and Myotonic Syndrome. We won't know the results from these 2 tests for a few weeks. She will also be having an ultrasound on her head/brain this coming Tuesday as they are concerned with the increase in size of her head and lack of closure of the soft spot. We should get the results from this test relatively quickly. On a positive note, she has continued to gain weight.
In the meantime, she will continue her weekly physical therapy appointments and her bi-weekly speech (feeding) therapy appointments. Poor Charlie thinks that every time we leave the house, we are going to the doctor. We are trying to live one day at a time, even though our parental instincts push us to google for the latest information or take our thoughts to what the future might hold for our little baby and our lives. We have taken a couple of vacations with our families this summer and are attending as many playdates as our schedule permits, so that Charlie gets to have a little fun.
Please know that while many of you will ask us "how are you" or "what can I do to help" our general response will most likely be that we are "ok" right now. This is only because we are just trying to live life the best way we know how right now...by continuing to be a family and spend as much time with our children, friends and family members as possible, hoping to find some normalcy to carry us through this stage of our lives. This roller coaster ride has been full of ups and downs and it has been very helpful to know that we have so many caring family members and friends surrounding us with love, prayers and support. We ask that you continue to pray for baby Kate, wisdom for the doctors, and peace for Dave, Charlie and I.