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Special Needs Sunday: Jenna Update

30 Nov

dsc_0007Reading the mail in my “sunny day” hat

Thought you might be interested in a brief update about how things are going with Jenna.  After our visit to Boston last month, the doctors agreed to begin to try to wean her from her formula, and she’s been getting only 2 boxes instead of three every day.  It’s been great to be liberated from the pump even that little bit more during the day.  Now, she doesn’t have to be hooked up to the pump during her nap time, which was the worst battle we were having with her disconnecting the tube and creating a huge mess.  Hallelujah!

The hope was that she would be more hungry and start increasing her eating by mouth.  It worked for about a week and a half, and then she got double ear infections.  Ugh.  She was on antibiotics for 10 days and just stopped being interested in eating by mouth.  I thought it might be related to the antibiotics or not feeling well, but the antibiotics have been done for over a week now, and she hasn’t picked back up with the eating.  Weirdly, she lost a pound and a half, but has maintained ever since that initial loss.  We’re working on finding an incentive system that works for her to be motivated to eat by mouth.  It’s so weird to think that you have to TEACH and ENCOURAGE someone to eat!  We just take it for granted because it’s always been something rewarding and reinforcing for us.  She just doesn’t have all those happy eating memories and associations yet.  And she still hates anything sweet.

We saw her pulmonologist last week and he was thrilled with her progress and lung health.  She still works harder than most to breath, gets out of breath easily and has allergy issues, but she’s not working QUITE as hard, and she’s staying healthy (knock on wood).  He didn’t mention when we should plan for another CT scan or chest x-ray, and we’d rather avoid it as long as we can anyway.  A chest CT (which we did last year) means she has to be sedated, and it stresses me out a little bit.  If she’s doing well, we won’t ask about it.

We’ve got hand sanitizer strategically placed at every door and throughout the house, and we’re pestering guests (and each other) about handwashing in a desperate attempt to stay healthy this winter.  Last year we made it until March, and then she got slammed with pneumonia and ended up in the hospital for four days.  We’re hoping for a complete season of health this year.

Here’s hoping that your Thanksgiving weekend was a wonderful one!

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7 Comments

Posted by on November 30, 2008 in Jenna

 

7 responses to “Special Needs Sunday: Jenna Update

  1. Kirsten/Mama Ginger Tree

    November 30, 2008 at 11:25 am

    She looks so cute in that hat. I hope you can stay germ free this year. I know that can be quite a challenge!

     
  2. Issa

    November 30, 2008 at 12:45 pm

    I hope she continues to stay healthy. Hopefully she’ll get back to eating a bit.

    Love that picture. There is something about B&W photos.

     
  3. Heather of the EO

    November 30, 2008 at 2:22 pm

    Eat, Jenna, Eat! I hope she stays healthy too. So many ups and downs!
    She’s so cute. I love that hat too.

    Here’s to a germ-free winter!

     
  4. iMommy

    November 30, 2008 at 9:08 pm

    Oh, thanks for the update. Hand sanitizer is your friend for sure. Next time you’re in Boston, we should meet for a meal or a quick playdate. I’d love to meet you and that lovely young lady! (That picture? Precious. Soooo precious.)

     
  5. anymommy

    November 30, 2008 at 10:03 pm

    What a pleasure to read that she’s doing so well. I will have all fingers and toes crossed for a nasty bug free winter and lots of positive eating experiences for your little beauty! Thanks for the update, I had been wondering about her eating.

    Sorry I’ve been MIA. My kids need to nap more, and I need to nap less!

     
  6. jen

    December 1, 2008 at 12:19 am

    kiddos are constantly throwing loops at us, aren’t they?
    you are amazing parents. germ free through march huh? wow.
    i am truly inspired by you and what you do for your daughter. but i guess we all do, don’t we?
    i’m sorry i ended in all questions.
    should i leave now?

     
  7. Kylie

    December 1, 2008 at 8:49 am

    I hope you can all stay well this winter.

    Keeping you in my thoughts! And Jenna looks adorable in that photo!

     

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