Wednesday, August 22, 2012

I'm back

This title is appropriate for many reasons:
1.       I feel like a normal person.  Strange statement for most, but PWS rocked our world for the first year.  I’m now confident, not afraid of PWS, and might have figured out this parenting thing.
2.       I’m exercising consistently again.  I forgot how good I feel when I sweat.  And it’s fun exercising with Joe.  He loves to wave at the runners and say hi.  Side note – if a cute baby waves at you, I don’t care how dedicated you are to training, wave HI back.
3.       I fit in my pre baby clothes. It may not look as pretty but I’m in.
4.       I’m dedicated to updating this blog on a regular basis.  Since I’m horrible and never did a proper baby book for Joe, this is my supplement.

Update on Joe – he’s turning into such a little boy!  I love all his new words: “I like that”, ball, MOMMA (really loud)!  Tomorrow is his 3rd week of pre-school and I’m so happy to see him play with typical kids.  Ok, it’s not really a pre-school but more like a mother’s day out program.  None the less, he enjoys it and I’m sure picking up habits I’ll be battling for the next 6 months.

Now off to answer the cute little momma whimper I hear at 2 am.  Pat, pat and he’s back to sleep.  Or I just might crawl into bed with him and snuggle.  He’s the best snuggler…sorry daddy.

Snuggle Joe

Sunday, December 4, 2011

Christmas pictures

Our photographer, Michele Anderson, is amazing. We did a mini session with her and got some great shots.  I especially love the one of him standing on his own!  If you could only see his toes, they had a death grip on the floor.

Thanks Pinkle Toes!

Saturday, November 19, 2011


A few weeks back I had a consult with Melanie Silverman
 to reassure me I'm on track with our meal plans.  As many of you know, because Joe has PWS the food we choose can be tricky.  Tricky because our society is so focused on food.  Not good clean food but junk food.  BTW - I'm going slap the next person that offers to feed my 13 month old a piece of cake.  NO 13 MONTH OLD SHOULD BE EATING CAKE! Even if they don't have PWS.

Back to the consult...Melanie is great.  She gave me some good tips that I already knew in the back of my mind, but just needed that confirmation.  Melanie said that we need to feed Joe what we eat.  OK, guess that means momma is going to be eating better.  Here's an example of dinner last Thursday

Salmon & Pea Puree
1  Wild Alaskan Salmon fillet
1 bag of frozen peas (defrosted)
1 garlic clove
1/4 c mint
Salt Pepper
olive oil
Parmesan Cheese

Heat olive oil in med/high pan.  Rinse salmon, pat dry, salt & pepper (i didn't salt/pepper Joe's piece).  cook skin side up for 5 minutes, flip and cook for another 1-2 minutes.  Fish is done!

Add peas, mint, garlic, salt/pepper (optional for baby) to food processor.  Add olive oil while pureeing.  Remove and add Parmesan cheese.

I put a big dollop of the pea puree on the salmon - yum!

Thursday, November 17, 2011

Mommy therapy

It's been months since my last entry.  A friend reminded me recently the therapeutic benefits of writing.  It's half therapy and half my responsibility to document our lives with this amazing kiddo.  I want recently diagnosed parents to see a happy and strong kid that happens to have PWS.  I want us to remember how skinny he was and how far we've come in 12 months.  All of a sudden my tiny little baby is a full on kid.  That's why I need to write.

It's strange but I get excited to learn about a new PWS family.  Now don't get me wrong, I pray for a cure and that no child ever experience PWS.  But since we're not there, I like helping families through the haze of the first months.  Maybe it's a pay if forward thing?  I was lucky to have great people help along the way when we were so green to this crazy syndrome.  Perhaps helping is like writing and becomes a therapy.

Monday, June 27, 2011

One Small Step

It takes a village is either an ancient African proverb or the title of Hilary Clinton's book.  Either way it's true.  I'm constantly amazed at the love and support surrounding this kiddo. His one lucky squirt and his Aunt Stephanie is leading the charge.  This fall we'll be hosting a fundraiser for the Foundation for Prader Willi Research.   Here's the cool part - Aunt Steph runs the IB program for Stony Point High and her students are organizing the event.  We're going to have a 5K run/1K walk and tons of fun.  But wait there's more...if we're successful this year, our little fundraiser could become a legacy project!

Shout out to Aunt Step - same nose, mouth and hair?

So many friends are helping out.  One is a race director and will meet with the students to help organize the run.  He's also working the sponsorship angle for us.  Maybe an in with HEB!  Another is only 7 and she's created her own fundraiser page.  Her girl scout troop may work our water stations. Some friends from Houston have already raised $300+ and are coming into town for the event.  Even my super creative pals are pitching in by helping with the brochure and setting up a trapeze demonstration.  Aunt Ash from Corpus created a page and made a BIG donation today.

The event is Oct 2nd - one week before his 1st Birthday. Mark your calendars to celebrate Joe and wipe out this ugly syndrome we call PWS.

One Small Step Event

Monday, June 6, 2011

We're making progress people

WOW - how he's grown.  It's hard to believe that this kid was failure to thrive only a few months back.  Tomorrow he'll be 8 months!  He's already talking back in his squeaky, fussy, don't mess with me way.

Here's a quick chronicle of his development

Newborn - can you say bird legs

2 months - Merry Christmas

3 months - I love my chango

4 months - Happy Valentine's Day

5 months - I think I found my toes...or at least can see them

6 months - Sleep study

7 months - With Grandpa Harkin.  His hands are so big

Now for his new tricks
Mouth action

Eating with my hands


Mother's Day 2011

This post is a little late but we've been busy.  Mother's Day was more like Mother's Day weekend.  My parents drove in from Corpus on Thursday and we had three full days together.  Luckily for my husband, the in-laws got a hotel ;)

Saturday was Grandma's day.  She wanted to venture north of Austin to visit Inner Space Cavern.  Gotta say, I wasn't all that excited about it but in the end we had a blast.  Very campy.

Joe exploring Grandpa's face.  What is all that white hairy stuff?

He's also big enough to sit in a high chair.  For the most part i think they're germ infested but isn't this how little guys build their immune system?  Here's Joe with Grandma at breakfast

If mom made me go to Inner Space cavern, then I got to stop by the winery...a few bottles were added to the wine fridge.

Mother's Day breakfast with the guy.  Chad (the husband) is conspicuously missing from all these photos.  I promise he exists and participates :)