Chronic Immune Sensory Polyradiculopathy

(CISP) -- Find out what you mean to me.....NOTHING

-- absolutely NOTHING

--found some really fun, comfortable flower power pillows (for Baby Joy, of course) in an effort to get ready for receiving IV treatments at home - plenty of reading material, music, and even a relaxation tape - a gift from the Mayo folks!!

All sytems are GO - just need to get through that minor technicality of being admitted to the hospital on Monday and receiving the initial treatment

-- then once a week for 4 hours, I get to lounge at home while receiving the remaining treatments

-- which should continue throughout the summer

-- I love summers --and I hope you enjoy yours :-)

And here are our beloved little white fluffy puppies -- I am sure any of them would be willing to snuggle :)

                                                                      

                                                                 piper

                                                                              sebastian

 

                                                                       and our bear

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 :-)

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.

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

We Are On Our Way -- Day One

Looks Like We Made It

Can you believe it -- 70 degrees

Incorporating the Event Into the "Story of My Life"

MAYO CLINIC OR BUST