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April 19, 2019
First of all, I would like to apologize for not being better about keeping everyone updated. Having two small children is a non-stop job and it has been really difficult to sit down and update. But, I appreciate you all so much and definitely don’t want to keep you in the dark!
We met with a wonderful endocrinologist in SLC who basically said, in a nutshell, that this is a very interesting case & without further tests cannot give a diagnosis. Although that was frustrating to hear, it helped to know that we weren’t missing something obvious and that we were on the right track with further testing. We took a few days to spend time together as a family in Salt Lake and it was incredibly needed. We have had an extremely difficult past few months & needed to reconnect.
When we got back to Boise we had an appointment with a metabolic geneticist in town. This was a HUGE gift, since originally there was a YEAR waitlist to see her, but we were able to get in within weeks. Probably due to some nudging from our Grandvocate (Grandma/Advocate 😂). Galen & I both really appreciated the insight from the geneticist, and feel very good about Berkeley being under her care. She had us meet with a nutritionist to see if we could gather more info about why this new lower fat, higher carb diet is helping so much. And she gave us a referral to get some genetic testing done on Berkeley.
Here is the tough part. And something we are learning a lot about. Anything involving insurance & blood work & testing takes TIME. And often a lot of communication between a lot of people. I can’t stress enough how much having my social worker mother-in-law as our spokesperson has been such an incredible gift. She has been able to advocate for our family in a way that I simply haven’t been able too. But we finally got the okay from insurance to do the genetic testing, so Berkeley had her blood drawn on Wednesday and it was sent in. The results could take up to two months, so we will most likely not discuss the results with our doctor until our follow up appointment in June.
Berkeleys blood sugar has been incredibly stable & so we are focused now on getting back on a relatively normal schedule. She started going to her little dance class again (we had to stop since physical activity was dropping her BS) and she adores it. She is such an active, cheerful kid, and I am grateful to see her be able to get out and play.
Thanks again to all of you who have been on this journey with us. It definitely isn’t over, but we are taking advantage of the calm, and are trying to catch our breath.
Love to you all,
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