He was officially diagnosed in 2006 with ITP when he was just 6 years old, after almost 2 years of showing symptoms of what we now know, were low platelets. In December of 2013 his diagnosis was changed to Evans Syndrome, after almost losing his life, and battling a month in the hospital.

In "English Terms" with ES, this basically means his immune system will kill off his red blood cells, white blood cells, and/or platelets. Sometimes it can be all three at one time, or just two, or one.

In October 2014 he was also diagnosed with an underlying immune deficiency called CVID. Which means its a disorder that impairs the immune system and you have low IG levels. People with CVID are highly susceptible to infections such as pneumonia and other illnesses.

There is no known reasoning at this time to why either of these occur and their is also no cure at this moment; we treat with medication, blood transfusions, and infusions when his blood counts are low.

Only 1 in every million people in the world will be affected with Evans Syndrome; and only 1 in 25,000 are affected with CVID, my child is one of them and this is our journey.

For a more detailed and in "English terms" wording, please refer to this post "What is Evans Syndrome?"

Friday, October 3, 2014

Getting Admitted-10/3/14

Got a phone call this afternoon from Diana, up in Chapel Hill. Dr. Gold & Dr. Wu want Jordan to be admitted into Hanover tonight to get some IVIG and IV steroids to give his platelets a boost. No news yet on the Rituxan treatment, where/when we start that. Hopefully I'll know more next week on that.

Hopefully Jordan won't be in there past the weekend (hoping no later than Monday). Brian is taking him tonight, and will be with him overnight. I'll come up in the morning and spend the day with him; I have to leave around 2PM, because Brittany has plans, so Jordan will be by himself for a couple of hours, until Brian gets off work at 4PM. Brian will again, stay with him overnight, and I will come up there on Sunday, once Brittany gets home from her slumber/birthday party (which I told her to come home early if possible).

Will update when I get news....
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