Final Mayo Up-date & Happy Father's Day!
Our final appointment with Dr. Jones on Friday at Mayo went well, but there were still some unanswered questions. She re-capped all of the notes and test results from the week. |
The unanswered part—the genetics doctor did a great job this week of explaining our chromosomes are like an encyclopedia with each chromosome having its own volume. |
If Ryan and I aren’t missing the page—then it will be “medically significant”. The doctor mentioned that would prompt a further look into the full picture of what Ainsley is experiencing. |
Ainsley’s CK level remains slightly elevated. The high end of normal for kids 6+ years old is 391 or below (our local hospital uses 150 as the high range for normal). |
Ainsley’s most recent levels were 532. |
Ains has learned how to roll her eyes which makes us laugh so hard now...but we probably won't be laughing as hard when she does this during her teenage years--ha! |
So our new plan is to keep moving... |
and realize this isn't a sprint with an easy finish line. |
It is a marathon that is gray as can be and we need to pace ourselves. |
We are going to google medical things less and enjoy the present more. |
Although the next few months may be a little up-hill and rocky at times... |
we have so many things to be thankful for. |
We have a beautiful, curious, energetic and loving 2 1/2 year old! |
We have loving and supportive friends and family. |
And a new team of doctors to help us determine next steps. |
We have much to be thankful for--including the world's best dads...Ryan, Papa Bob & Papa Larry! Happy Father's Day! |
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