Pic of me with Dr. P.J. Dyck and Dr. Rami Massie who have given this foe a name. They are sending us back to SA with a diagnosis -- FINALLY -- and a treatment plan!! It appears to be a rare disorder of the central nervous system that primarily affects the sensory nerves. Treatment includes physical therapy and IV immunoglobulin administration to suppress the autoimmune response and allow repair and regeneration to improve and regain the ability to walk, run -- and an occasional cartwheel :-)
Friday, June 11, 2010
Wrapping Up Chapter 1 --- Mayo Clinic Experience
Pic of me with Dr. P.J. Dyck and Dr. Rami Massie who have given this foe a name. They are sending us back to SA with a diagnosis -- FINALLY -- and a treatment plan!! It appears to be a rare disorder of the central nervous system that primarily affects the sensory nerves. Treatment includes physical therapy and IV immunoglobulin administration to suppress the autoimmune response and allow repair and regeneration to improve and regain the ability to walk, run -- and an occasional cartwheel :-)
Wednesday, June 9, 2010
Counting It All Joy -- Days Two and Three
This is a pic of the wall across from the Mayo cafeteria (sub-level) -- it always reminds us of Baby Joy because she likes to wear flower power onesies :-)


These other two pics we often see as we are rushing to get to the next apppointment! It is a busy, busy pace we are keeping -- days start at 6:15 a.m. and we finish up around 12 hours later!! Definitely NOT complaining -- this is what we came here for -- still so incredibly exciting to be here!!
Tomorrow we meet with doctors beginnnng at 7:45 a.m. (Department of Physical Medicine and Rehabilitation consultation with physician). By then, we will have completed the following diagnostic exams/procedures: Initial Consultation with Neuro Doc (3 hours!), Specimen Collection, Venipuncture Specimen Collection, Skeletal Bone Survey, Fat Aspiration, Thermoregulatory Sweat Test, Lumbar Cervical MRI, Electromyography Exam (nerve conduction study and muscle exam), Autonomic Reflex Testing, Quantitative Skin Sensation Tests, Lumbar Puncture, and Sensory Evoked Potential Testing.
Tomorrow we meet with doctors beginnnng at 7:45 a.m. (Department of Physical Medicine and Rehabilitation consultation with physician). By then, we will have completed the following diagnostic exams/procedures: Initial Consultation with Neuro Doc (3 hours!), Specimen Collection, Venipuncture Specimen Collection, Skeletal Bone Survey, Fat Aspiration, Thermoregulatory Sweat Test, Lumbar Cervical MRI, Electromyography Exam (nerve conduction study and muscle exam), Autonomic Reflex Testing, Quantitative Skin Sensation Tests, Lumbar Puncture, and Sensory Evoked Potential Testing.
By Thursday afternoon, return visit with Dr. P.J. Dyck, Department of Neurology, who will then have all of the reports -- AND we will go from there :-)
Thanks again for all your prayers and support!!
xoxoxox
Monday, June 7, 2010
Sunday, June 6, 2010
Saturday, June 5, 2010
Sunday, May 30, 2010
Monday, May 24, 2010
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