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?"

Wednesday, December 25, 2013

10AM Christmas Day Update

10AM Update: They want to run a 12-14 hour drip for his IVIG, because of the higher dosage; they can run it faster, but the possibility with side effects increase (headaches, nausea, etc-although they are going to give him meds for that before they start, just incase). So its not set in stone yet on him coming home tonight; I am uncomfortable running a faster drip, so we are still waiting to see on a decision. Jordan really wants to come home badly, even if its to sleep in his own bed for one night; but they haven't even started the treatment yet, because they are figuring out how slow/fast to do it. So the possibility of them being home tomorrow, instead of tonight, is probably very likely.

 However, on the bright side, he looks a lot better than he did on Monday.
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