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, April 30, 2015

Feeling Defeated-4/30/15

Growing very impatient with the high school.
Jordan received an attendance failure in one class, and an INC in another class last semester (yet both classes have a final grade of an 88 and an 89-which are B's); which means instead of him receiving 4 credits last semester for four classes, he only received 2 credits (why he received these in only two classes, instead of all four, I have no clue). Emailed his counselor early March about this, said she would look into it, but in the meantime to fill out the appeal attendance failure form. Which I did, including attaching all of Jordan's doctor notes, hospital discharge notes, a letter from his hematologist (stating that Jordan cannot attend school if his counts are below 25,000 and that there would be days he would miss due to treatment to keep his counts out of the danger level), and a personal letter from myself stating why Jordan should receive credits in those two classes, and explaining his condition. Haven't heard anything since. So I sent another email this morning to his counselor, asking for an update, and if the appeal was approved, if not, what actions do I need to take. Waiting on a response from her....
Pissing me off, I understand about the county attendance policy. Whether its excused or unexcused absences, its an automatic attendance failure in that class if its 10 or more absences. I don't agree with it, especially if it pertains to a medical condition, but it is what it is.
Back in October, I had a meeting with his counselor, the school nurse, those four teachers, assistant principal, and a homebound school teacher, educating them on Jordan's autoimmune disorder, and got him started on a 504 plan. I was under the impression that the point of the 504 was to protect him from receiving attendance failures if he missed school due to medical reasoning. But was told in March, by his counselor, that the 504 plan does not protect him from that, because its a county policy. That the 504 plan is in place, incase he misses an extent amount of school again, that the homebound school will kick in, and help him keep up with his school work, also allowing him more time to make up any missed work (which in the 10 years he has had ITP, he has never had an issue keeping up with this schoolwork/making up any missed work; and has always remained on the A/B honor roll).
I just do not get it. Jordan's autoimmune disorder is chronic, there is no permanent remission period for him. Our experience is he gets a few months out of the year with good counts, before they drop in the danger level again, and he misses school due to being hospitalized for treatment. It baffles me that I have to deal with this, every single school year, to make sure he graduates on time with his class in 2018. We have considered pulling him out of the school system altogether and homeschooling him, to receive his diploma, but he doesn't want to do that; he wants to be able to walk the stage with his friends in 3 years, and I do not want to take that away from him. But as a parent, what do I do, when I tell him to keep doing what he is doing in school, keep making up the work, stay on the A/B honor roll to prove to the staff that you can still keep up, even with missed school days; and they turn around and punish him with not giving him the credits for the classes he has so rightfully earned.

Update 6/1/15

 The school finally revoked the Attendance Failure for his classes and he has received the well earned credits for his classes. 
Posted by at

1 comment:

Subscribe to: Post Comments (Atom)