Friday, March 25, 2011

The Big Boy at Music Class

Session two of our music class started last week.  We began when Joe was only 3 months old.  Back then I was grasping at anything to help with his development.  I'm still overambitious but feel like I have more control now.  Gotta say, it was nice to come back to class after a few weeks off and have all the moms comment on how much he's grown. I forget what he looked like only 2 months ago.  Skinny and weak - that's how I'd describe him.  It brings back memories of how hard we worked to get food in the kid.  Anxiety surrounded us when a feeding didn't go well.

How life has changed.  He eats well for 99% of his feedings.  If anything, Dr. Miller said he might be a bit too chunked. I no longer have the "oh, what's wrong with that kid" and into the phase of "he's too cute and wow look at that head control".  I want to savor these moments normalcy.

3 months

5 months

Friday, March 18, 2011

The Baby Whisperer

Last Sunday we started our pilgrimage to Shands to visit the infamous Dr. Miller.  After flight delays and a screaming baby - yes screaming.  For those of you who don't know Joe, he's a quiet kid.  Actually most PWS kiddos are quiet up until 6 months or so.  Well, he decided to have his first fit on the plane and I was that person.  Guess I've made one too many comments about screaming babies on planes in my past.

Our appointment was scheduled for 12 noon.  Dr. Miller was running around the clinic tending to patients and asked if we'd be willing to stay a bit later, she wanted to spend a couple hours with us.  Hours, I couldn't believe it. She was/is amazing.  Answered all our questions, gave us the hope we've been searching for and tweaked his meds/supplements. Said we'd better start saving for college because most of her patient attend.

She is genuinely a kind person and I feel lucky to have her apart of Joe's life.  That night we got to the hotel and guess what - he rolled over for the first time!  I tell ya, this woman is a miracle worker.

We're scheduled to see her in 6 months.  Maybe he'll start crawling :)

Monday, March 14, 2011

My new BFF - Medela pump

Most PWS kiddos can't suckle, so I get to become very good friends with my Medela pump.  Here are some random observations regarding pumping:

1.  People love to gawk at me when I pump in the ladies room.  Perhaps it's the adult sized flower bib I wear or the humming sound of the pump.  Either way it's impolite to stare.

2.  I have spent more time hiding in the corner of a ladies room and it's flat out nasty. You wouldn't believe how many people don't wash their hands.  Come on people - really?  WASH YOUR HANDS.  You are the ones that give my kid RSV.

3.  My wardrobe is now centered on accessibility.  Who am I kidding, it's also based on my new "motherly" figure, but still need to get to the girls with ease. 

I'm 5 months into pumping and I'm keeping the faith.  My initial goal was to make it 6 months, but think I'm finally finding my stride.  Can i go for another 6 months?  At this point I'm taking it one month at a time.  Or should I say, one stare at a time.

Sunday, March 13, 2011

Road Trip

We leave in about an hour to start our travels to Florida.  Tomorrow we see Dr. Jennifer Miller at Shands.  I can't even explain how excited I am that we got an appointment within weeks.  The local endo takes 6 months to get an appointment.  Someone that understand PWS - finally!  I need to work on all my questions, so many.

On an even happier note, Joe is almost rolling on his own.  He still needs a little nudge here and there but I'm confident that he'll be turning somersaults in no time.

Tuesday, March 8, 2011


I know I can have sharp elbows but I'm about done with dealing with incompetent people at CareMark (Joe's pharmacy).  They just denied him his 2nd dose of Synagis. (side note - Synagis is a vaccine for RSV.  PWS kiddos can get really sick with RSV). According to the ill prepared person on the phone, "his insurance show's that he was dropped last Dec."  Then how did we get the first dose of Synagis 5 weeks ago?  And how did he get his HGH last week?


Monday, March 7, 2011

Picture time

Our dear friend needed some practice taking pictures of litte guys.  Joe was more than willing to act as a model.

Hope you enjoy them!  Thanks again Ryan - you're amazing with that camera

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.