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josh’s Story

Welcome to our CaringBridge site. We've created it to keep friends and family updated. We appreciate your support and words of hope and encouragement during this time when it matters most.

Josh was born on August 23, 2004 8 weeks early weighing only 2lbs 14oz.  He did great in the NICU, only needed to feed and grow.  At 1 month old our precious bundle of joy was able to go home with us weighing 4lbs 4oz.  Although Josh was small, things continued well until his 3yr check-up where the doctor noticed that he was falling off his growth curve.  Honestly, Josh hasn't grown much at all since then.  We have been followed by Endocrinology since then but have not started using growth hormone yet.  At Josh's 4yr check-up the doctor noticed that his white count was low.  It was re-checked over a couple of weeks and continued to remain low although he showed no sign of illness.  At that point we were referred to Hematology-St. Jude clinic in JC.  For two years Josh's blood has been tested monthly for almost every immune disorder imaginable and has undergone 2 bone marrow biopsy's with still no definite diagnosis.  All the doctors we have seen continue to say Josh is a mystery but they are all continuing to work diligently to find a reason for his weakened immune system.  Despite how ugly Josh's labs have looked for 2 years and his obvious growth disorder, he has been a happy, fun loving, playful little boy who will make your sides hurt with his hysterical since of humor.  In August 2010 it seemed like we went to sleep and haven't woke up from a horrible nightmare.  On Aug. 13 we went to the St. Jude clinic in JC because Josh was swelling and having trouble breathing.  After a urine check the doctor told me they had called a kidney specialist because Josh had a high amount of protein in his urine.  I remember how scary that day was not really understanding what was happening to our little boy.  This is when I met Dr. Wattad, a kidney specialist.  He diagnosed Josh with Nephrotic Syndrome-a kidney disease where his kidney's are functioning normally except they are spilling all the protein into his urine.  So much that he looses all the protein in his blood and that is when he begins to swell.  Josh was given Albumin transfusions to replace the protein in his blood and lasiks to pee out the swelling.  We went home on Sunday, Aug 15 on 7 new medications, one being Prednisone.  This drug is used for 4 weeks to see if it will stop the kidney from spilling the protein.  So far it has not worked.  We were re-admitted to the hospital on Aug. 25 for more albumin and lasiks for swelling but this time Josh did not respond to treatment.  Dr. Wattad told us that in 25 years he had never seen a patient not respond so he contacted Dr. Hunley at Vanderbilt for assistance.  We were transported to Vanderbilt on September 7 and have had very aggressive treatment here.  The swelling is much better here.  The prednisone has caused his face to swell and his tummy is still swollen but we have improved for sure.  Josh is scheduled for a kidney biopsy/bone marrow biopsy on Monday, Sept. 13 which will tell the doctors what type of Nephrotic Syndrome Josh has and what treatment he will need in the future.  Please continue to pray for our sweet little boy and for wisdom for the doctors to be able to diagnose and treat this disease.  We know our God is in control and we lean on Him daily and the prayers and support we receive from you.  We are already thanking Him for the good results we will receive from these biopsy's and we ask that you do the same. 

Update:  Josh has been diagnosed with Schimke Immune-Osseous Dysplasia-an extremely rare form of dwarfism resulting in short stature, kidney failure, bone marrow failure, seizures, strokes and a shortened life expectancy.  Thank you for praying for our family and for Josh.

Josh gained his angel wings on 5/9/2013, surrounded by his family at Monroe Carrell Jr Children's Hospital.  Please continue to pray for our family as we continue this journey in life without our precious little man.  "Stay on the Wall"  Neh 4:20