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!

Dinner

A few weeks back I had a consult with Melanie Silverman http://www.feedingphilosophies.com/
 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!

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.

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

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

Standing

Eating with my hands

Dancing

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 :)

Month 6

Whew, this month has been BUSY.  Lets count the activies of the Harkin clan.
1.  Baby joe eats solids!  He's a champ, good eater and no major issues.  He loves kale, unlike his father.

2.  We visited the TX Children's PWS clinic. Got our gold star and will see us in 4 to 6 months.  Yes! we get a small break from the doctors.
3. He's rolling and sitting.  Still working on the sitting as he fatigues quickly.  His therapist Anna does a great job of tricking him into sitting.

4. He's found a new love - a red stick.  This kid goes crazy.

5. Sleep study #2.  This one was much harder.  Still waiting for the results and praying for good outcomes.

6.  Easter 2011.  He loves the Easter Bunny and his basket

7.  Daddy's getting into film.  Check out his latest short

Hope

Dear Mr. Healthcare Company,

I want to thank you for all the amanzing research you do everyday to help us - the sick. You help the doctors make modern medicine, well modern.  I live and breathe healthcare for my job and at times I get discouraged by the system.  However, every now and then I see a glimmer of hope.  Hope for people that face an uphill battle with a disease, illness, or.. a broken chromosome. 

Thank you mr. health care company for helping people with Parkinson's.  In January 2011, FDA approved DaTscan for non-invasive visualization of striatal DaT while differentiating between essential tremors and tremors due to Parkinsonian Syndrome (which includes idiopathic Parkinson’s disease, multiple system atrophy and progressive supranuclear palsy).  In english, we can see the brain better.

I hope for a drug or device to see my baby's brain better and offer him a future of independence. Keep up the good work.

Amber

PS would love more PWS focus!
http://maiedge.com/blog/radiotracers/datscan/

Fun Run

Everyone says motherhood changes you.  I honestly haven't felt much different except for the new bags under my eyes and expanded waistline.  But this weekend it hit me like a ton a bricks


Sunday was our first race together. I got up early and started my pre-race ritual - vitamin, oatmeal, and lube in all the right places.  Got the kiddo ready and headed downtown to the race start.  Drove past my old apartment and recalled when I use to "walk" to this race.  As I turned the corner to park the car in my super secret free parking spot, I got a rush of nerves.  Yes, I had the pre-race jitters.  We unpacked and I hurried over to the start line.  In typical Amber fashion I was an hour early for the race; need to mentally prepare. Because I had a jog stroller, I was forced to be in the back.  We literally were the last people to cross the start line.  No worries, I can catch all those non-stroller pushing people.  We weaved and bumped a few people along the way.

A friend of mine was kind enough to stay with me and help with stroller navigation.  She was great and I loved our conversation.  One thing she said stopped me in my tracks. My friend is a new mom and she pointed out that her baby has forced her to slow down.  No longer are we in the second or third wave competing for time.  We are now at the back of the pack in the "fun run" division. 

Joe has taught me how to make my life a daily fun run.  At first I was overly concerned with him lagging behind the other babies.  Now I know that he’ll go at his own pace and that’s the perfect pace.  I’m so proud of my little boy and his first 10k. As my friend said, “guess that makes it a PR.”

Baby Joe at the Cap 10k

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

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 :)

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.

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.

Really?

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?

idiots

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

http://oneflameinthefire.smugmug.com/Portraits/Baby-Joe/16108715_wPAc3#1209271601_yVZa4

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.  http://pinkletoesblogstalker.com/2011/03/a-little-visitor.html

Michelle visited us at our home when Joe was just 5 days old...now 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 http://www.anatbanielmethod.com/

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.