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, March 25, 2014

Quick Weekly Update-3/25/14

Just a quick update, nothing to really report on. Counts are still stable, not yet comfortable with the "R" word yet (remission), but getting there.

Hemoglobin is 13.6 (two weeks ago it was 13.3)
Platelets are at 190 (two weeks ago it was 216)

Those are the only numbers I have, Diana said that his counts looked really good.

I YET AGAIN mentioned about having his PICC removed. She asked when we were going on vacation (told her in 19 days), told her we wanted him to be able to enjoy himself, his veins are healed, he will be okay (and I also told her I was sick too death of stressing about the blood backflow in his line). She said its a very reasonable request, Dr. Gold just wanted to make sure his counts are good (great doctor, love him too pieces, but he is way too overprotective); which they have been for the past month. So she said she would email him right now, and get some answers for me. At this point I will drive 2½ hrs to Chapel Hill to get it removed, I don't care. So hopefully I hear something about that in the next day or two, or I am going to have to turn into a bitch, call up there, and raise hell myself. Rather ridiculous if you ask me.

But like I mentioned above, Jordan is doing great, feeling great, back to his old self. Have noticed though with the past few PICC dressing changes, he has lost some muscle tone in his left arm, from lack of usage. So once that is taken out, and he gets clearance, he wants to start lifting weights (he starts high school in the Fall-enough said, LOL).

Until next week...
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