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?"

Tuesday, February 4, 2014

Quick Weekly Update-2/4/14

Jordan's doctor called me a couple of hours ago, everything looks great:

Hemoglobin: 12 (up from 11)
Platelets: 195 (same from last week)
WBC: 4.2 (up from 4.1)

So he has OFFICIALLY been placed in stable condition (they wanted at least a month's worth of results, before placing him in this area). We are NOT decreasing his steroids this week, will see how the lab results are next week, and will decrease again. Right now he is on 85mg of Prednisolone a day (along with his other med's, including 750mg of CellCept). In two weeks we see his doctor again, and Jordan is going to request for his PICC line to be removed; he told me last night, his veins have healed, he can stand being poked once a week again, with a needle. So hopefully having that removed will be an easy task, and not something we need to travel to Chapel Hill for.

We let Jordan stay at his best friend's house all weekend, they were our old neighbors (no pun intended LOL) for 8 years; so they have been basically on this journey with us, since they are like a second family to Jordan. Been best friends for 10+ years; he came home for a short moment Saturday night, so I could do his flush, but other than that, took his meds with him and had a ball. He definitely needed to be out of the house, he has been stuck with us for the past 2 months. 

Until next week =)
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