Monday, January 21, 2013

Life with Down Syndrome

Down Syndrome and all of it's "effects" has been lot more at the forefront of our household this past week or so.  I suppose you could say that any of this can happen to any child, and while that's true, in Tera's case it is in fact because she has Down Syndrome.  There really aren't that many days anymore when it bothers me, or even that I take the time to acknowledge the fact that life is different because of DS.  Most of the time I go through the motions of our lives and we just deal with whatever is currently going on.

Last week our schedule was even busier than usual with appointments.  Tera had speech therapy on Monday at daycare like she always does, Tuesday we had physical therapy at home, Wednesday she had a hearing test (which we do regularly to make sure her tubes are working properly and because some hearing loss can be fairly typical in kids with DS), Thursday she had occupational therapy at daycare like always, Thursday night we had to go to the orthotist to pick up her new orthotics, and then Friday we had to go to Babies R Us to pick up new shoes and socks to go with the new orthotics.  Then Saturday morning she had developmental therapy, and Sunday we went to sick call for what we believe is impending pneumonia.

I'll come back to the pneumonia in a minute, but of all the things that "affected" me this week, I think Tera getting her orthotics did it the most.  There are certain triggers Tom and I have both experienced that serve as reminders that Tera is different.  One of them is having to give her the nebulizer treatments because it reminds us of when she was in the hospital for pneumonia.  For me, this week, having to watch her with her orthotics in, was one of those reminders.  To be honest, I've been anxious for her to get them because we know it will make her a steadier, more confident walker and hopefully they will prevent a lot of long term damage to her ankles and knees.  But apparently just seeing her in them, kind of made me sad.  And again, I know there are a lot of kids that have these and I know they may not have to be forever (they might be or they might be a little different as she gets older), but in our case, it's because Tera has DS.  On the plus side, despite the slight hassle of trying to get them on an already wiggly, impatient toddler, she doesn't really seem to notice they're on and she's walking really well in them.  I'll just have to suck up my feelings and realize that it's for the best.

Now back to the pneumonia (well, not technically pneumonia yet).  Last week she woke up most mornings with a cough, but that was the end of it.  Then Friday afternoon, after picking her up from daycare, she started coughing.  And then the coughing continued at night, and into the next day and into to Saturday night. Sunday morning we had to bite the bullet and take her in to see what the doctor thought.  See there's only three other times that this cough has happened and all three times have resulted in her having pneumonia.  Fortunately the doctor on call was one that we really like and that has seen Tera numerous times (in fact she referred to her as her regular Sunday morning patient).  She listened to her lungs a few times and said that she sounded completely clear.  We're all hesitant to start her on antibiotics prematurely because she's already had to be on one so many times and we all know the time will come again soon.  So since there is no evidence of pneumonia yet (a virus of some sort yes) our only course of action is to try and increase her nebulizer treatments to try and keep her airways clear, and hope for the best.

It worked out well that I'm off today so we could keep her home one extra day and even though she sounded exactly the same last night as the previous two nights, I didn't think anything else was wrong.  Unfortunately as the morning progressed, she became tired much earlier than usual and felt mildly feverish.  she ended up going down for a nap at 10:45.

Now in an effort to try and make myself a better writer, I've been trying to keep my posts a little more focused, but today I just have to get this stuff out so I apologize for going astray here (it's also what happens when I write my posts in the middle of the day instead of that the end of the day; like today).

Tera only ended up sleeping for an hour this morning and after waking up, seemed much more herself.  I had originally planned on going to Costco today and decided since she was feeling better, we might as well journey out into the frigid air (she was heavily covered in a blanket) and get it done with.  In going along with how I started this post, DS has been front and center to me lately and so I'm not sure if this was the reason I was more conscious of the looks today or not.  Tera always gets a lot of attention when we go out.  She waves to pretty much everyone and I've never figured out (her being my first child and all) if the attention is normal, or if people know she's incredibly adorable for a reason.  But today especially, she seemed to be getting a lot more looks and almost sympathetic smiles.  I won't deny there is every chance in the world that I am overreacting and nothing was any different today than any other day and she just gets smiles because she smiles first and is so freakin' sweet and I'm being paranoid due to lack of sleep and general craziness on my part.  Whatever the actual case is, I left feeling somehow even more protective of her and just wanting to get her home and out of the world out there.

She fell asleep in the car again on the way home and while she was napping I was catching up on Facebook when I came across a story like so many others, but that of course touched me in a unique way.  I love and hate these stories because it reminds me that there are so many ignorant people that I can't protect her from, and at the same time gives me hope because I realize that even if I can't stand up for her, someone else might.  Here's the link in case you didn't see my repost on Facebook.

Then tonight we had another few ups and downs on the roller coaster that is Tera when she finally woke up from her second nap and was very clingy and lethargic.  She ate very little dinner, but as soon as we got down stairs, she was ready for our ritual dance party! She was almost completely herself until bed time when she went down at the normal time and with no struggle at all.  So we have no idea what to expect tonight.  It could be a bad night of coughing, a very bad night that results in wheezing and labored breathing, or a perfectly normal night in which she wakes up fine (I find this last scenario the least likely by the way).

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