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?"

Thursday, October 9, 2014

Moving Right Along-10/9/14

Jordan's school counselor called, she said they have never had to deal with a student that has medical issues like Jordan before, one week okay to go to school, the next week not okay...etc. I have a meeting with her and the Homebound Coordinator next week, to see what we can draw up, as far as a plan goes for Jordan, so he doesn't get behind with school.

She reassured me that although his attendance looks bad right now, they WILL BE excused and he WILL NOT get an attendance failure, because its due to medical reasonings; that they will do everything in their power to get him caught up and work with us from here on out.

She said that I have no idea how pleased and refreshing it is for them, to see a parent be so advocate with their child's education, because once kids get into high school, the involvement of parents is lessened dramatically (which is so sad on a parent's part); so she thanked me wholeheartedly on that issue.

So, I am pretty pleased with Laney, and glad that they are so understanding about Jordan's medical condition and are willing to work with us, instead of just brushing it under the rug. My hard work is paying off, by spending hours and hours in emails and making phone calls to be Jordan's voice.
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