Friday, April 5, 2013

It could be worse

I come across a lot of information in my readings about Down Syndrome. I have mentioned on here several times the DS board I belong to on Baby Center and how helpful that information has been.  But it's helpful for more than just information.  Each day I get an email with some of the new posts from that day.  I catch up on these emails about once a month and then I just scan them to see which ones might apply to Tera at the time.  I learned early on that reading about potty training when she was six months old was kind of a waste of time because it didn't apply to us and I wouldn't remember it.  Plus people repost the same topics over again when they become relevant to them.  Each person can include whatever they want in their signature and many people include information about their kids (both with and without DS) like what health impairments they suffer from.  Anyway, last week I found an opportunity to try and catch up on some and a topic caught my eye and I read through it.  One of the moms that responded had such a signature and had listed about five different health issues her son with DS has.  I don't even remember the topic I was reading about, but I do remember stopping to think about how incredibly lucky we really are.

When we got Tera's diagnosis I felt like my whole world had just been turned upside down and that we were suffering.  And in a way we were because we weren't expecting it and while it's not a lifetime sentence of misery, it's definitely a life with its fair share of trials and tribulations.  But when I read something like that list of ailments, all I can think about is how lucky we got.  With all of the complications that can go along with DS, we got off really easy.  I know I don't always feel that way and I'm not saying our life is easy, but in comparison to what it could be, I feel like I should just never complain again (but that's not really human nature and unfortunately, to a fault, it's not my nature either).  And so I'm grateful to that post to remind me about perspective.

Ironically, Tera got yet another diagnosis yesterday herself.  It seems we can add acid reflux to her list of (seemingly mild) issues.  The really ironic part is that it's either being brought on or at the very least aggravated by her second nebulizer treatment of Albuterol, which helps keep her airways clear so she doesn't get pneumonia again.  She's had some episodes of throwing up various amounts (see my last post) and I was starting to worry it was because she was aspirating more.  Fortunately we have a fantastic DT who wondered if her nebulizer treatment might not be irritating her throat and causing reflux.  Yesterday Tera had her follow up appointment with the pulmonologist who pretty much confirmed the suspicion.

As far as her lungs and the aspirating situation go, we need to be thickening her liquids as it seems to help reduce the coughing and choking when she's drinking.  We need to keep her on sippy cups and also her nebulizer treatment of Pulmicort twice a day (which does not aggravate the reflux).  There's not much we can do to make it any better and when I asked him if it could get worse he admitted that it could, not that it would necessarily, but that it could.  The most significant sign would be more pneumonia.

For the reflux, we will be taking her off the Albuterol unless it's absolutely needed to help her breathe and she'll also be starting a prescription of Prevacid to help control it.  Unfortunately for her, it's one of the many things that kids with DS can have due in part to their low tone (it always comes back to that damn low tone).  The pulmonologist wants to see how she does with this treatment, but she will more than likely have to see a GI doctor at some point as well.

In case you're keeping track, her current list of specialists are:
Regular pediatrician
Cardiologist
Endocrinologist
Ear, Nose, and Throat specialist
Pulmonologist
Allergist
Eye doctor
Four therapists and a coordinator
And a partridge in a pear tree

In the next few days I'll share some of the current therapy strategies we're working on and what issues have recently come up.



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