Tuesday, April 4, 2017

Blog update and Anna

This blog is long due for an update!  I am picking this back up to write about what is going on with Anna's condition and help me process it all!!!

 In January of 2017, Anna was diagnosed with scoliosis at an exam in town.  An  x-ray revealed a curvature of the spine and we were referred to an orthopedic surgeon/scoliosis specialist at Children's Hospital.  Her spine had a curve of more than 50 degrees, it basically looks like an S.  We noticed changes in her posture and the appearance of her back made us suspect something was wrong, but we didn't realize it was so severe until the x-ray at her general practitioner.  Anna has never been sick, complained of pain, had any developmental difficulties other then the fact that she is very small.  She has always barely been on the 1% of the growth chart, but that has been steady and not sudden, so it really didn't raise any red flags for us and we still don't know if that is related to her condition.  In February of 2017, we made our way down to Children's and met with the doctor.  Anna had more X-rays.  We really didn't get any answers but were told we needed to get an MRI to see if there is a cause for the scoliosis or if it is idiopathic (no cause).  They did take some more X-rays at this visit.  In March of 2017, we were back to Children's for the MRI.  She had to be sedated as she would be under the machine for over 2 hours.  Anna was very nervous but she did well.  The staff was wonderful at Children's and we were glad to proceed ahead and find out if there was any reason for her condition.  About a week after the MRI, I received a call from the Orthopedic office telling us they had found a syringomyelia in her spine between vertebrate C6 & C7.  This is basically a cyst or fluid filled cavity within the spinal cord and was the cause of her scoliosis.  We don't know what, if anything, caused the syringomyelia.   At this time we are being referred to the only pediatric neurosurgeon in our location, as this condition must be addressed before we can proceed to treat the scoliosis.  We are not able to get into this doctor until June, so again we wait and pray.