Not at all what I expected to hear....

We finally heard from Kira's doctors at Mayo Clinic on Monday and did not get news that we were expecting.....not even close.  The first thing we were told was that the lumbar puncture, skin biopsy and muscle biopsy did not give us any diagnostic answers. They weren't normal but there wasn't enough "wrong" to give any answers.  That was very difficult to hear but what they told us next, blew our mind.  The first time we went to Mayo Clinic they looked at the frozen muscle sample that gave Kira the diagnoses of Congenital Fiber Type Disproportion and while it's not a primary dx in most cases, it was still a starting point to look for answers.  The biopsy that they took in June did NOT show Congenital Fiber Type Disproportion and they ran the test 2x to be sure....so that dx has been removed and we are back to no dx at all.  I'm not sure which piece of new was harder to hear.  It never even entered my mind that dx may not show up this time.

So now we have a child who still has no diagnoses but we also have one that apparently disappeared.  Nice.

We obviously asked them if they had any further recommendations or "ideas" and the only thing they suggested was repeating an EMG and Nerve Conduction study since the lack of results from the biopsies points to a stronger possibility of a neuro-muscular "something" than anything else.  They offered to set us up with with the neuro-muscular clinic at Mayo but we already have an appointment up with the neuro-muscular clinic at UW so we are going to start there.  We will share with them the recommendations from Mayo and go from there.  We have no decided if we will go forward with another EMG and Nerve Conduction study or not.  Now is not the time for us to make the decision.

So that is where we are right now.

It's a hard place to be.  We want answers and in a lot of ways we need answers.  But there are 2 questions that I keep asking and I don't think there is a right or wrong answer....

Is it fair to keep putting Kira through tests that upset her (rightfully so) when clearly answers are not going to come easy?

And the other side of the coin.....

Is it fair to Kira and to Kira's health to NOT keep looking for answers?

My head and my heart have 2 very different answers to those questions....very, very different answers.