Monday, March 7, 2011

From 5 days to 5 months

Last week we visited Michelle from Pinkletoes to update Joe's pictures.  He's 5 months now and it's time to capture his new chunkiness.

Michelle visited us at our home when Joe was just 5 days he's 5 months!  I love the that he's finally filling out.  The general public now guesses his correct age. A little old man at the coffee shop last Saturday said, "what is he 4 or 5 months?"  I was so excited that he guess right. For so long I would fib about Joe's age.  I was just tired of people saying, "he's so little, was he a premie?"  NO - he has PWS and doesn't eat well.  Probably not the most PC response. I'm still working on my elevator pitch...

My thoughts on why he's doing so well
1.  We're rocking on the therapy.  As a supplement to his normal OT, PT, XT we've been experimenting with ABM.  Joe loves the therapy

2.  HGH arrived last week.  I actually haven't noticed any significant difference in the last few days but i'm hopeful. Thanks to Pfizer for the bridge program.

3.  The haberman nipple saved our life.  Joe never needed tube feedings but like all the others, a very poor feeder.  We've had him on a strict feeding schedule of every 3 hr (except nights).  He's been packing on the oz's ever since we started with the haberman.

4.  Lots of loving from friends and family.  I'm constantly amazed with all the support.  We're super lucky to have so many people lovin' on baby Joe.


  1. Amber,
    What is the XT therapy? Is that speech? And do you have a local practioner who does the ABM or do you do that yourselves?

    We ended up on a gtube with Olivia - I've never heard of the Haberman nipple unfortunately. Did your hospital let you know about it?


  2. Laurie

    XT was my way of explaining all the "other" therapies. He currently has speech & music added into the mix.

    Yes, we have a local ABM practitioner, Chris, we've been working with since he was 17 weeks or so. I mimic some of the technique at home but he usually see's Chris a few time a week/every other week.