Friday, July 17, 2009

Good News!

We finally received the call we have been anxiously waiting for since Tuesday....and good news- Kate's brain scan was normal, so no surgery needed. Hooray! We also received news that the DNA test for Prader Willy came back negative, so we are very relieved. Kate's therapists also feel like she has shown some improvement in her feeding skills as well as her muscle tone. She got her new orthopedic shoes and brace yesterday, so she is now sporting a new fashion trend (well, I don't think anyone will want to copy this trend) and she doesn't really like wearing them. We are now waiting on results from the DNA test for Myotonic Dystrophy (which we don't expect to get for at least a few weeks) and her thyroid blood test.

Our BIG celebration at home has been that Kate has become a little more alert and active and even gave Mommy 3 smiles in a row after her 5am feeding the other day. Mommy was so excited, she cried! Oh, Katie-bug, we have been waiting to see that beautiful smile...thanks for finally sharing it!

We are getting a true lesson in the virtue of patience! For now, we will continue to go to Kate's weekly therapy appointments and doctor appointments, swimming lessons and playdates for Charlie and try to be a normal family. We have such supportive friends and family, which makes this journey we are on right now go a little more smoothly. Thank you all for your love, support and prayers! We are hopeful that we will continue to share only good news from now on!

Wednesday, July 8, 2009

The Latest on Katherine

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 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.