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Special Needs Sunday: Brief Update

21 Dec

christmas-balls

This one is going to be brief, because the three of us are celebrating our family Christmas today!

I wanted to give you an update on how things are going with encouraging Jenna to eat by mouth.  In a nutshell:  NOT WELL.  Boo.  She’s not interested in eating by mouth at all, unless it’s popcorn or a fruit smoothie, and she doesn’t want to eat those all the time.  She IS tentatively trying more things.  She petitely grasps the food she’s trying between her index finger and thumb and then nibbles off the absolute tiniest crumb that could possibly be called a taste.  Then, most frequently, she wrinkles up her nose and is finished.  Sigh.  Stickers, prizes, and every other incentive plan we’ve thought of so far just aren’t doing it.  She’s just not interested.  Sometimes, she REALLY wants a prize, but not enough to eat.  You can even watch her think about it.

She does TALK about eating more.  She just doesn’t do it.  Tonight, she asked me what I was doing and I told her I was fixing supper.  She said, “Mmmm!  I LOVE supper!”  If only.

She’s slightly more interested in drinking her formula by mouth, so I’m trying to especially encourage that.  Even if we only accomplish this right now, it would be HUGE, because she could come off the feeding pump and tubes.

The GOOD news is that she’s somehow maintaining her weight (more or less).  We started the weaning process with her at thirty pounds, and she currently weighs twenty-eight.  She seems to fluctuate around that weight, give or take a few ounces.  Unfortunately, she needs to keep growing and GAINING weight, so even though she’s not losing, we can’t have her just camp at this level.

So, we have an email message in at Children’s Hospital Boston and the team is going to get back with us the first of next week about what we should plan next.  We might have to increase her formula again, we might just hold here for a while longer, or, we might have to hook up with a therapist for teaching eating behaviors.  As always, I’ll keep you posted.

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5 Comments

Posted by on December 21, 2008 in G-tube issues, Jenna, Special Needs

 

5 responses to “Special Needs Sunday: Brief Update

  1. Kate Coveny Hood

    December 21, 2008 at 9:23 am

    I can only imagine how frustrating this is for everyone involved. Whether it’s a big issue or a small issue – kids just don’t like change…

     
  2. Awake

    December 21, 2008 at 12:45 pm

    Hopefully the team has some good ideas for you. Thinking of you.

     
  3. Mia of General Hysteria

    December 21, 2008 at 6:10 pm

    Little steps (or in this case crumbs) are encouraging. At least there’s one crumb more than there used to be?

    I hope you get a good plan to move forward with.

     
  4. iMommy

    December 21, 2008 at 6:50 pm

    Children’s Hospital has some of the best… if anyone can help, I bet that they can. Good luck!

    Do you think that having her help you prepare the food might get her more interested in trying it?

     
  5. psychmamma

    December 21, 2008 at 10:31 pm

    Thanks everybody! It’s so nice to have so much support!

    iMommy – We’ve tried having her help with food prep in the past, but she lost patience with the process. I should try again though! Thanks for the reminder!

     

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