We finally had one of your schools today, the one in the afternoon. I was so excited, as were you, to see your friends and get out of the house, and I assumed your nagging cough meant you were at the end of a cold. I did think it was strange that you were so tired, but I ignored it because (mom of the year award here!) I wanted you to go to school and play with your friends...and I selfishly wanted to get some work done.
To make matters worse, I had cracked the cover of my iphone6 and had to take it to the istore for some iservice (sorry- Apple makes me cranky sometimes). So I didn't have my phone when your teacher called, and Daddy didn't have reception, and by the time I got to your school, you were running a high fever. I took you to the doctor's because you were having trouble breathing, but not before you threw up all over me, the car seat, yourself...
The doctor thinks you have pneumonia. Because you get pneumonia so often (you had it three times last year), she's prescribing a steroid for you to take during the cold and flu season.
People often say that being a "special needs mom" is difficult, but honestly, the only "difficult" part of it, for me, is how often you get sick. You are sick a LOT, which is, I know, normal for some kids, but it makes it even harder for you to learn and get ahead on speech and OT stuff. When you were born, you had low blood oxygenation, and so you had to be in the NICU just so you could get oxygen delivered to you. Then, when you came home, so did the oxygen, but just for a short while.
(tangent- I can't believe you were that tiny and that you looked like that!!). I don't know how parents of kids who are often hospitalized for cardiac issues even do it. You did have an atrial septal defect, which means a hole in your heart, but we are so blessed that it healed up on its own. If kids are constantly in the hospital, of course they can't focus on school and on therapy and on getting the services they need. And this, more than anything, is what makes it "difficult" to be a special needs parent. Not to mention that very few work schedules allow for a parent to spend extensive time with his or her child in the hospital, and friends of mine have lost jobs over this. So all in all, I'm lucky, but it is frustrating when, coming off antibiotics for an ear infection, you're on another round for pneumonia.
One of my friends told me that people with DS get sick more often because of "lazy leukocytes," but I'm not really sure what that means (white blood cells that don't want to protect you against infection?), so I tried to look it up online, and this is what I got:
"The abnormalities of the immune system associated with DS include: mild to moderate T and B cell lymphopenia, with marked decrease of naive lymphocytes, impaired mitogen-induced T cell proliferation, reduced specific antibody responses to immunizations and defects of neutrophil chemotaxis."
So according to this article (Ram, G., & Chinen, J. (2011). Infections and immunodeficiency in Down syndrome. Clinical and Experimental Immunology, 164(1), 9–16. http://doi.org/10.1111/j.1365-2249.2011.04335.x), it's not that leukocytes are "lazy," but that there is an "abnormally low level of lymphocytes in the blood. Lymphocytes are a white blood cell with important functions in the immune system." According to Wikipedia (which you must never let my students know I'm using!), "a mitogen is a chemical substance that encourages a cell to commence cell division, triggering mitosis." Okay, so then the T cells, when are a type of lymphocyte, don't actually divide as often as they are supposed to, which is why there are fewer of then. There are also fewer "naive" lymphocytes, which are white blood cells that haven't been exposed to an antigen (something that will elicit an immune response). I think we can all understand the reduced responses to immunizations (alas), but I did learn that neutrophils are mostly in our bloodstream and our our body's first defense against infections:
But in people with DS, there is something wrong ( a "defect") with the way that these neutrophils respond to infection (chemotaxis).
Now it's important to realize that this is a list, like those crazy lists of side effects that appear on medicine commercials. These "may" be associated with Down Syndrome, but it actually does help me understand why you get sick so often.
That being said, and like I wrote before, I am lucky. I'm lucky that your illnesses are mostly a few days, usually alleviated with antibiotics, and haven't required hospitalization.
I'm lucky that your heart defect has healed and that (fingers crossed), you haven't developed any of the more serious illnesses, like leukemia, also associated with DS.
I'm lucky that I am a teacher, and that I get to come home early or skip office hours if you are sick!
I'm lucky, this year, that I'm on sabbatical.
I'm lucky that I have a partner who pitches in. Tonight, he made dinner so that I could take you to the doctor.
There are many things I am lucky for, but man...it sure does suck when you are sick.
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