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, September 5, 2014

Major Growth Spurt-9/5/14

Well now I know why my grocery bill has increased so much the past month or two.

Diana just called me from Chapel Hill. She said looking through the paperwork and labs the past 3 months, Jordan has grown 3 inches and gained 10lbs since June (5'6 and 110lbs presently). So its obvious that he hit a growth spurt this summer, and due to that, the CellCept needs to be upped according to his weight/height.

So we have increased it to 850mgs a day (it was at 750mg). We will do labs on Wednesday, just to make sure his counts are still good (due to the increase of the CellCept, it will lower blood counts). She said if counts are still holding, we will do a decrease on the steroids.

So fingers crossed this is why his counts dipped in July, and that its not something else going on.

Prayers and continued thoughts please.
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