Monday, September 10, 2012

Our LITTLE girl and some serious issues

Boy, two posts in a row about feeling bummed.  What a depressing blog, huh?  I swear I have a half dozen half-written posts that are much more upbeat but I need to add photos and finish them so in the meantime, I'll just be a Debbie Downer and write yet another depressing entry.

I have had Audrey evaluated by Early Intervention, based on recommendations from her pediatrician and Cleft team.  I have been concerned with her, shall we say, extremely petite size and her reluctance to eat and babble so the medical teams and I decided this was something I should pursue.

I met with a developmental therapist, a physical therapist, a nutritionist and a speech therapist over the last few weeks.  The news was mixed.

Physically, our Audrey Kate is doing great.  She's sitting, crawling, reaching for objects, etc.  But the other information wasn't so positive.

As expected, she's little.  Like really little.  Like 4th-percentile-for-weight little.  Everyone is surprised to hear that since she looks so proportional but she is falling off the growth curves.  She's 8th percentile for height.  In the last month or so, I've started adding 1t of formula to some of her bottles but clearly that's not enough.  So now I'm adding formula to all her bottles in an effort to bulk her up.  Barrett is small, there's no doubt about it.  He's routinely in the bottom 20% of the growth charts, which is still surprising to me.  Tim and I are not small people are neither are the majority of our family members.  I don't know where he got his little stature from.  But he's not alarmingly small like Audrey. 

Secondly, her vocalization is just not where it needs to be.  She's making sounds that a two month old might make.  Pretty much all she's doing is cooing and making "ah-ah" sounds from the back of her throat.  Occasionally, we do hear a "mamama" sound but this is rare.  I had assumed first that her sounds would be delayed because of the cleft but her speech pathologist at her Clinic told me that the cleft shouldn't influence her sounds.  Then I assumed it was probably due to her inability to hear well until she got her tubes placed, but it's been 6 months now and she still hardly makes any noises.  She is just a quiet little thing.

Based on preliminary recommendations, the developmental & speech therapist that I met today suggested that the next steps would be to see a medical diagnostic professional to assess her more thoroughly.  They thought this might be a endocrinologist or geneticist to see if there are further issues at play here.

I am terrified.

Clefts can come by themselves as just an isolated fluke or they can be a part of a much more serious syndrome.  I'd been thinking all this time that we were in the clear and that her small size was just due to her difficulty and reluctance in eating.

Now I am being told that it may be much more than that.

I am trying to get through the day and hope for the best.  I will hear the final evaluation of the Early Intervention Team tomorrow and then we'll have to figure out our next steps.  I cannot even fathom the thought of my little Audrey having more serious medical issues than we knew she already had.  All I can do is hope and pray and try to keep it together.


  1. I just saw this tonight. My thoughts are with you right now! If you ever need to talk or just go out to grab a drink let me know!

  2. Thanks, Kim, that means a lot to me. Hanging in there and trying not to dwell on discouraging news but to be optimistic.
    I hope you guys are doing great!