Sunday, June 27, 2010

I’ll take a Break for $500, Alex

You ever feel like you’ve about got your feet on the ground, only to have it split open and swallow you whole?

Okay, so maybe it’s not quite that bad, but, ya know, I really thought that after Piper’s round of doctor’s visits around her birthday, we were in the clear.

Eeeeenk- wrong answer.

So Piper had croup the end of April.  By her birthday appointment with the pediatrician, she was almost completely better.  But a week or so after that, she started getting a little cough; we just assumed that it was leftover from the croup, so we haven’t been too worried about it.  However, it’s still around, so I took her back to the doctor this week (holy cow- we made it a whole six weeks…).

We’re going to treat her as if she had allergies for a few days, and see if it helps.  We’re also going to start her on Prevacid, to see if it helps.  If those don’t help, we’ll start inhaled steroids (not what I want to do) to see if those help.  If not, we’ll go to ENT to find out if it’s her malformed epiglottis that’s causing all this, or something more.  My biggest fear is that it’s some kind of aspiration (although she had a swallow study done last August, when she was about three-and-a-half months old, which didn’t show anything), but it’s not at the top of anyone’s concern list, so I guess that’s a good thing.  She doesn’t seem to show any other symptoms of it, and never has, so hopefully we’re in the clear for that. 

I’m kind of bummed that we really don’t have a clue, so we’re just praying that it’s the problem with the easiest solution (probably the Prevacid- at least she’ll outgrow it, as opposed to the allergies…). 

But what I’m really bummed out about is that we now have another referral to the GI clinic.  Piper’s weight gain has really dropped off (weighed in at 13 pounds even, right before she pooed and right after she ate), so her doctor just wants to make sure that we’re not missing something that’s preventing her from absorbing her nutrients as well as she should.

Truth be told, I’ve always had this wonder in the back of my mind as to why my kid, my teeny-tiny kid, has to eat so many  more  calories than kids that are so much bigger than she is.  When she was in the NICU, she was eating about 50% more calories per day than she should have needed for her size.  And really, looking at what she eats, and what other kids her age eat, she still has a very high caloric need.  She very well could have a very efficient system, which could be a blessing in the future, I guess, as a very high number of individuals with Ds have tendencies toward obesity.  But, we do want to make sure that there’s nothing else going on.

So, I guess it’s a good thing that we went in- if I had waited until her 15 month check up and she was even farther behind…  well, ya know. 

And, to top it off, we have an audiology appointment next week, which I’m a little nervous about (but the nerves for THAT day are being squelched with a promised day of shopping with my mom), and we’re supposed to go back to the ophthalmologist next month (although they were supposed to call us when they started scheduling for that period, and I just realized this week that we’ve never been called, so who knows when we’ll get in….).

Yup, guess I’m just complaining.

On a cuter note, Piper got a stuffed Lion from the clinic (one of the benefits to being at Children’s- we get toys and books a lot when we go in), which she looooves.  She picked him out out of three choices- there was no doubt which one she looooooved! 

And then I sat her down on the floor, and she looked up at a new painting on the wall.  She just sat and stared, signing “pretty” over and over and over again.  Of course by the time I got the camera out, I didn’t catch the actual sign.  Surprise.


  1. Sorry to hear you have more appointments to figure out what is going on with her. But, I am thankful we have such great docs that know so much more about ds than they did even 10 years ago. Our kids get the benefits of that for sure.
    Hope all her appts go smoothly and you get some concrete answers to your questions.

  2. I can so relate to your frustrations about your baby having to see so many specialists at such a young age. In addition to his normal visits to the pediatrician, my little guy Joshua has seen 9 different specialists. This made for over 90 appts in all last year, not including his 2 week hospitalization for open heart surgery. I'll tell you what, that whole process can really wear on a mama. It's not only tiring to have to sit in all of those waiting rooms, but wondering whether or not a specialist is going to "find something" can be seriously anxiety-provoking. Thankfully, I have found that more often than not, my son's pediatrician has referred us to these specialists due to her desire to err on the side of caution. I know that it's difficult, but try not to worry too much. It will get easier! Hoping that Piper is feeling better soon. She is too cute!

  3. WOW!! you two are going to busy! I am sorry to hear this...Me and Maddie are sending you and Piper big HUG-G-ABLES! I am thinking about you...keep us updated...smiles

  4. Ugh - that does not sound like a fun schedule! I am so tired of going to dr. appointments - but if we haven't been for a couple of weeks (to some kind of dr. for at least one of the kids) it almost starts to feel weird and I swear I start getting paranoid and looking for things that are wrong.
    I will pray that all of your appts. go smoothly (with very little waiting - ha!). Keep us updated!
    Good luck with the appts and the weight gain

  5. Hope you get some answers soon :)