Search Results for: Niemann Pick Conference

Niemann Pick Conference

nashville

The National Niemann Pick Disease foundation’s 20th annual family support and medical conference is in Nashville Tennessee … and starts tonight.  Steven and I very much wanted to attend, but with all our happenings and Wylder’s celebration coming up on the 25th … we just could not make the trip.  It is a conference loaded with information and […]

Niemann Pick Conference

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August 2011 Daddy (Steven) and Uncle Puppy (David) went to Virgina for the Annual Niemann Pick Conference. Video of Monica (NPC) http://www.youtube.com/watch?v=88yFbCkZ9G4 Pictures with Kaitlyn (NPA)  

NNPDF Conference

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We have made it home sweet home after the Niemann Pick Conference in Baltimore last week.  It feels good to be back and to have another “first” under our belt.  It was a beautiful weekend that encompassed an overwhelming amount of emotions.  It was so beautiful, wonderful and fabulous to meet and squeeze other families […]

Conference

Kaitlyn&S

Wylder and I got an update that the Niemann Pick Conference is going well.  Steven and Uncle Puppy have been attending all the sessions which they have enjoyed … and meet some friends along the way.  I got a darling pre-view photo of of the boys with Kaitlyn below. Wylder and I have been enjoying our down time … […]

A San Fransisco Treat

Our families all together

Steven, Koa and I were at the National Niemann Pick Conference in San Francisco last weekend (I guess it was really 2 weekends ago already). It was a BIT easier then last year’s conference emotionally, because it wasn’t our first, and because we were surrounded by a few other Niemann Pick type A families. That […]

A long over do update

koa's eyes are the exact color of the ocean, no accident

How does the time fly between writing these days? Oh I know, travel, the foundation, a bout of mastitis that had me down and out for days, trying to figure out how tend to my clients with a baby that only wants to breastfeed, very real grief and a little one I just want to […]

Tile Project

SkyonAngelversary3

Thank you all so much for the incredible well wishes last week and messages of hope. It helped us through another difficult week. We continue to feel so blessed by the family and friends in our lives, and everyone who surround us believing in all things Wylder. This was the sky Wylder gave from our back yard […]

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Wylder had the best day yesterday (Thursday) which means of course my day was MUCH better too, yeah.  It almost felt like business as usual at the Laffoon house.  The Warrior’s coloring looked great, his junky-ness was under control, he was so alert and into his books and watched as every bubble just pop pop popped right by […]

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Sluggish

sluggish

A few changes around here … big surprise.  Change one: we have decided to use our home nursing only 3 days a week instead of 5.  The nursing is a HUGE help … but downtime is important too.  Our house is very quite and peaceful … but we have a lot more company then ever […]

Baby Connect

baby connect

We have restarted feeds again … yeah!  Really keeping our toes crossed for this again.  So far so good, but don’t wanna jinx this one.  Slow and steady … okay, VERY slow and steady.  We just know that every little drop is helpful … so we shall take what we can get.  The Warrior has […]

Wylder’s Journey

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Click on Each of the Photos to learn about Wylder’s Journey From his first hospitalization to his memorial at sea July, 2012. Click here to watch ‘REMEMBERING A WARRIOR VIDEO” To read Wylder’s entire medical journey from his birth to being laid to rest at sea, click here;  MedJourneyWJL FIRST HOSPITAL STAY (3 months old) LIVER BIOPSY […]

Success of Rare Disease Day 2014

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Well, little “Bruiser” has not made his big appearance yet.  He seems to be comfy cozy and given all that we have been going through the last couple of days, in some ways I am glad he is still snuggled up tight.  As anxious and excited as I am to see his sweet face, I […]

Newport Weekend

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Steven and I had a remarkable time at the Global Genes Conference.  It was informative, powerful, connected and an inspirational group of people.  We are so appreciative we were able to attend.    Friday was a day packed from start to finish with information and panels of the best of the best to inform us (the […]

Information Overload

wylder on his trip to meet Dr. Wasserstein Jan 2010

This has been a tricky blog to write.  There is much I want to share about what is happening in terms of research for Niemann Pick A currently, but it is both complex to explain and early stage research that is not yet published so I have to be thoughtful about the researchers privacy.  That […]

Lots of WN Updates … Lots!

HOPE baby!!

Hi Wylder Nation!!  I feel like I haven’t blogged, I mean really written to you all in a while.  Well, I am making up for it today … there are so many amazing things to share with you.  Where to start … we have been so busy.  We have been working to set up our plan of […]

New York

NewYork

I know you have all been waiting patiently for updates on Wylder’s New York trip.  Here is the latest … Dr. Wassertein at Mount Sinai,and the team at Genzyme have been working on the protocol.  They have had many conference calls … including a few with Wylder’s neurosurgeon here in the valley about just how to use Wylder’s shunt […]