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, April 29, 2014

Quick Weekly Update-4/29/14

Sorry its been so long since I have updated, not much to really update about, which is great.

Last time I updated, it was about 10 days before we left for vacation. We had a blast, kids really enjoyed themselves, especially Jordan, which was so heartwarming to see. It even snowed on the second day we were there, which was crazy! I think we saw all four seasons that week.

Jordan's counts are still stable, not much change there either, his Hemoglobin has stayed around the 13.2 range, platelets go back and forth from 140-170, still in the normal range. Liver enzymes look good. All in all good counts so far.

We saw Dr. Gold last week, very quick appt, in and out., everything is fine, spleen is still not normal, but its slowly unswelling back to normal size. We have to remember it was severely swollen, all the way down to his waist, so its going to take some time getting back under those ribs. At the present time, its about 6 inches from his ribs, so we have awhile to go. So Jordan is still pretty restricted to what he can do, because we have to be careful of any impact on his left side (and of course him having that PICC in place also).

We go back to see Dr. Gold on May 19th, so I am once again, going to mention removing the PICC line, especially since we have only 33 more days of school left. I dont want Jordan to be too restricted to what he can do, as it stands now, he can't swim in any pools, or go to the beach, because of the PICC. And I dont want him to not have a good summer, especially since the kids want to go to Myrtle Beach for a weekend in July, for their birthdays. So we shall see, again, I am so over it (flushing and dressing changes).

Until the next update.
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