Well Caleb had his muscle biopsy on October 1st....he is such a trooper! He was so strong...not a tear!
They cut a 2 1/2 inch incision into his upper thigh 2 " deep. OUCH!
He didn't even want any pain meds after!
They finally called me on Friday Oct. 10th @ 1 :40 to tell me they had the results in and I would have to come in to get them @ 3:30 on Mon. Oct 13th. That was the longest weekend of my life!!
The Dr came in and told us that Caleb is a "medical mystery". His blood results and physical exam point to Congenital Myopathy (which means born with muscle weakness...the mild form of MD we were hoping for) which is non-progressive. BUT...the muscle biopsy showed muscle deterioration which indicates a progressive form of MD...which is worse news. Since the 2 didn't "match" they want to take another muscle biopsy next summer to get more conclusive information. This time from his arm.
I was so bummed....I wanted answers...we have waited 8 years for an answer!!
But on the bright side...we didn't get bad news!!!
So we are trying to go with the "no news is good news" attitude!
Please keep sweet Caleb in your prayers!
1 comment:
I had NO idea. Where have I been?! I am so glad that things turned out okay and kids are so resilient. I am sorry that I let this go unnoticed.
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