Oh my gosh! I cant believe we have hit 1,100 followers!! We are so blessed by every single one of you! This is going to be a longer post because I will be explaining a little more about this trial and how it helps Sawyer! So, heres an update about Sawyer! She had a busy weekend! She spent most of the day Saturday with her Nona who watched her while Michael and I went to a family wedding! We had a blast but man we missed our little girl! Sunday was spent out shopping for new winter clothes for Pittsburgh but we just might have to wait until we get there because there arent many coats here in New Mexico that will withstand the winter in Pittsburgh!! Sawyer has done well with her vomiting but we are still waiting on a call back from her GI doctor to see what they would like to do as far as medication goes! Most of this week will be planning and packing for our trip next week. This is the first week in a long time that we dont have an appointment of some kind! Its really weird but so welcomed! Sometimes a little break is nice, especially when we have so much traveling coming up in the next two years! A lot of friends have been asking what this trial is for. The trial is for a new medication that helps stabilize blood sugars and to keep her more metabolically stable. Its a type of medium chain fats, which Sawyer can break down, which helps her body somewhat metabolize like normal. Because these fats are shorter in length, they dont normally last very long in the body because they get broken down so quickly, but this new oil is a longer, medium chain of fat but is still short enough that she is able to break it down. This oil has worked wonders for a lot of people so we are hoping and praying that it works well for her. We will be traveling out there every month for the next 6 months and then every 3 months for two years until the end of the study. If she does well on the oil, they will transition her to an extended study where she will be watched for years to help gain research and knowledge about this medication. The thee very cool thing about this study is that they are going to keep samples of her blood work and urine samples to do more research and testing on to help further research about these disorders. Because Sawyer has one mutation in her gene that has never been seen before, this research could go to helping diagnose more people and to saving other lives!! We are so excited to be a part of this study and all that comes with it!! Thanks so much for rallying around us and showing us love and support through this journey! We are so thankful for all of you!!
Posted on: Mon, 29 Sep 2014 15:40:04 +0000
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