At Sea

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Yesterday was just a beautiful day.  The weather was beautiful and the ocean was crystal blue.  We had 15 imediate family members and Ernest and his beautiful wife Lisa … and we laid sweet Wylder James to rest.  It was another NO REGRET moment … although, beyond sad … it was the most perfect and beautiful place for him.  We took […]

1 Week

Wednesday

(sorry I posted this blog yesterday … but it didn’t go through) It has been one week today … and we are in the most beautiful spot celebrating our Warrior surrounded by family.  We feel and see you everywhere Wylder James. SUNSETS FROM A WARRIOR  (Friday Night 7.20.2012) (same friday night from our friends house) […]

Celebration Of Life

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Wylder Jame Laffoon’s Celebration of Life has a date … Saturday August 25, 2012.  We wanted to get you all this date quickly so out of town family and friends can book reservations if necessary.  I have attached an invitation below and details and exact time will come as we get closer to the event.  It is going to be […]

Beautiful Words

What has been so strange and surreal  to me these last few days is that life is going on.  When I am on my patio … I see cars drive by and I think, life is happening isn’t it?!  When I am running around I am not only getting my barrings, as I have not been […]

Maui

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Wylder’s Memorial at Sea is all scheduled.  I have attached the invitation for you all to see … but it will of course only be immediate family traveling too Maui.  Our dearest friend and spiritual guide Ernest Puua has agreed to perform the sevices … and we wouldn’t want it any other way.  It will be so special and […]

Beach Dog

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Many of you have inquired how our beach dog Maddie is doing?  She is much like us … it just totally depends on the moment.  Her nights are completely restless and she certainly knows something is missing.  She seems somber too, but does go about her daily business.  Right after Wylder passed away Maddie was […]

Together

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It is surreal that Wylder is gone.  We have certainly had our moments of up’s and down’s in the last 36 hours (which I know is to be expected).  There have been moments of pure bliss for Wylder; and that he has no more pain, tubes or Niemann Pick A … and there have been moments […]

We Lost our Littles Today

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Our sweet baby got his Angel wings today at 5:15am.  We were all snuggled together in our big bed …. Steven holding is left hand, and me his right (all night long).  I woke up out of instinct and turned on a small lamp, I just knew he was getting ready to leave us … […]

GRANDPARENTS You Are Our Wish

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“I AM YOUR GRANDPARENT; YOU ARE MY GRANDCHILD.  IAM YOUR WISE FACE: YOU ARE MY NEW-TOOTH SMILE.” As you all know I like to keep the focus of our Warrior’s blog about him and his happenings.  I often wish I could blog about every family visit, friend get together, notes recived etc … but literally it would be too […]

Unconditional Love is Selfless Love

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We are really beginning to have a new found appreciation for Wylder’s new “baseline” … quiet and peaceful.  It has really started to settle in now (after over a full month of this new daytime sleepiness) that this is the new Warrior for now.  A few weeks ago we found ourselves anxious by THE QUIET, […]

Clean Up Isle 12

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First and foremost thank you all for the wonderful tips and support ideas from the power outage blog!  We have had many conversations with Public Service now …. so no one else will have to go through what we did The MONSTER CLEANING CREW has come to town this week.  With Wylder comfortably sleeping away in […]

Power Outage

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I cannot believe it has taken me two whole days to give you all this update.  Sunday night we lost power at our house.  No storm or anything … just lost all power around 6:15pm out of the blue.  Having our little Wylder and no power is one of our biggest NIGHTMARES.  When we came home from the […]

Courage Beads

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There is a really cool program called Beads of Courage available out there to help and support children with serious illness that I wanted to share with all of you.  They are growing every day, providing innovative, arts-in-medicine supportive care programs for children coping with serious illness, their families and the health care providers who care for […]

Living the Dream

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Living the dream… Sunshine.  Water.  Greet . Repeat!  There are no words …. just enjoying all these moments and this bliss.    BELIEVE!!!! #WylderNation xoxo

July 4th!!!

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Happy 4th of July!!!!  We are definitely feeling proud to be an America on this beautiful overcasty Arizona day.  We started the morning off right with little Wylder.  He was up bright and shiny at 5am and we spent over3 hours out on the patio, BEAUTIFUL. When I got him out on the patio it was still a bit dark out, […]

Another Beautiful Donation

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Another kind person has made a very generous donation to our family.  An amazing artist Diane Sanborn recently learned of our Warrior and generously donated a piece of her art to sell to one of you.  It is a beautiful painting titled SOMEWHERE OVER THE RAINBOW and is 36×48.    When she offered this piece […]

Fun Snaps

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Even with all the rest our Warrior has been getting  … it has been a very busy and fun filled last few days (and I’ve got the picts to prove it).  Wylder still continues to hold his oxygen by himself (in the 90’s, which is GREAT) and is heart rate is just where it should be.  His coloring […]

Loved

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As I lay and chat with my sweet Warrior as he sleeps today … I am reminded how full of love he is.  We reminisce about many things; all of our fun family adventures and trips (Denver 5 times, Cali north and south, NY, NC,  Maui etc)  and lots of fun memories we have made.  I was also reminded today […]

Hospital Bed

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Wylder’s hospice nurse Cherie came by for her usual Tuesday check in yesterday and she was doating over Wylder’s hospital bed … and its cuteness.  I was flabbergasted to learn that most people DON’T dress their hospital beds!  What?!  So today’s blog is about how to dress a hospital bed … and why they are not as […]

My Commitment to Wylder

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Mr. Wylder James has still been just as snug as a bug in a rug.  He is awake about 4 hours in the morning and totally enjoys bath and book time.  Then most of the rest of the day he sleeps, very coza-ly.  Wylder’s grandparents Grammy and Papa are in town for their monthly visits […]

Baby Trek Atlas

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Our hearts and love are flying over sea’s to the Chelsea, Jarret, Peyton and Conner who lost their sweet 15 month old baby Trek Atlas to Niemann Pick A today.  When baby Trek was born (in their driveway) this family’s life changed forever.  Dad Jarret quit his job and they just new their family was […]

Sleepy

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Not much change here at the Laffoon house with the Warrior.  He has been mostly asleep lately and we have been honoring his need for quite.  He has absolutely no discomfort and for the short moments he is awake, he is very attentive and his eyes are sparkling Warrior style.   You could here a pin drop […]

Father’s Day Camp Out

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Every father son should have a camping trip together,  right … even the non-camping type :).  So today … this fathers day, it seemed like the perfect thing for Wylder and his dad to do.  So the boys are on their first camping trip today!  I set up a surprise camp site right here in our living room […]

Learning Yourself

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It has been a very quiet week here at the Laffoon house.  Wylder continues to be quite sleepy and there is certainly a peacefulness around the house.  We continue to notice a few minor changes in our Warrior (some new and some he has had in the past) along with some of these respiratory symptoms.  One is […]

Sleepy Boy

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We had a very low key weekend with our Warrior.  He has been very, very sleepy during the day.  The mornings seem to be when he has the most energy and is the most alert … by about 11:30 is he totally poops out.  It is nice timing for our desert weather though … because we can […]

It’s Gone!

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It’s gone!  We took the Warrior to Dr. Notrica’s office this morning and GABE is officially gone.  Yes, we named the gnarly thing on Wylder’s leg Gabe.  Gabe is the scariest of all the monsters in one of Wylder’s favorite books … so we found it fitting to name that monstrosity on his leg after […]

Rainman

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As you have all come to realize by now …. everyone around our house seems to get a nickname … or two.  Well, that includes puppy dog Maddie … we often call her Rainman.  For those of you who have not seen the movie “Rainman” … it is a MUST!  Well our little Miss Rainman […]

Homebound

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I am dedicating this blog to the art of being housebound. If you had said to me a year ago that my family would be bound to our home 24 hours a day 7 days a week …. I would have said YEAH RIGHT, and you’d have to lock me up in a loony bin!  Well, SURPISE … here we are.  […]

The Count

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I apologize for the all quick and dirty updates this week . I have been very busy working on a super secret project (tee hee) while Wylder is so sleepy.  I will be sharing with all of you soon, but have found myself totally wiped out at the end of the day (even more than usual).  So I have […]

ReScheduled

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Wylder is still recuperating with his antibiotic on board.  He is mostly sleeping durning the day… and therefore comfy, cozy … but not too much to report too all of you.  We did get a call from Dr. Notrica’s office that we needed to reschedule Wylder’s mni-procedure … MAJOR bummer.  We were looking forward to […]

Mini-Grime

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We woke up bright and shining this morning singing “I am proud to be an American” to honor this Memorial Day … but my Mr. Wylder must have thought I was a bit out of tune.  He woke up grumpy, on the wrong side of bed.  This is so NOT like my usual morning time sunshine at all.  So we […]

Angels

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As Wylder is off in dreamland I began to download/start to put together all the pictures of the birthday palooza.  I could not help but notice white spots/lights in many of the balloon relsease photos over our house.  Angels?  I got goosebumps as soon as I really started looking at them.  We even got the photos […]

Daddy got THE GRIME

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It has been about 4 years since Daddy has been sick … but he officially got ‘THE GRIME’ this week.  Wiped him out.  He did head to the doctor day one to nip this quick, and they confirmed it is not strep throat.  He also got a quick dose of antibiotic to try and get […]

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The Warrior’s birthday palooza is officially over but will never be forgotten.  It was the most wonderful fun filled weekend with family and a very happy Wylder James.  We all thoroughly enjoyed our time with family poolside and even ended the extravaganza with an outdoor showing of the movie UP, where Wylder’s sweet cousins sat beside […]

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Wylder’s Thank You

The Warrior came up with a way to thank you all for his birthday wishes all on his own.  He allowed us to capture some sweet giggles on camera.  ENJOY!!  Love and Hugs from Wylder … http://www.youtube.com/watch?v=ld9QAU07Mpk

Birthday Palooza

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There is no better description of this week so far than a BIRTHDAY PALOOZA!!  It has been so much fun celebrating our Warrior with all of you.  He has been feeling so good and showing lots of smiles and giggles.  We just know that he KNOWS it is his birthday week and everyone is loving on […]

He’s 3!!!!

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An amazing day for an amazing Warrior!!!  Up Up and Away.  Lots more photos coming tomorrow … we were overwhelmed by all the love from all of you and we are compiling all the pictures too share with all of you!!!! Thank you xxoo

All Good

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I had a beautiful mothers day with my sweet Warrior.  It included lots of sleeping, snuggling and a so fresh and so clean clean bath time.  He even gave me lots of mothers day smiles …. just what I WISHED for.  These pictures capture how well he is doing and lots of amazing beautiful smiles.  Daddy also granted a […]

Here we go …

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Wylder James started his morning off right with giggles during morning story time with mommy and daddy, and a big smile for nurse Rachel when she arrived this morning.  It is so easy to tell he is feeling better … his eyes just light up.  Our house is happy happy happy. Speaking of our very […]

Stella Dot

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Wylder is having a very sleepy day today so I thought I would take this opportunity to send a reminder about the Stella Dot Jewelry fundraiser going on for Wylder right now through the 15th.  And in PERFECT time for Mothers day this weekend.  I know many of you are looking for last minute gifts and this […]

Magic

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We ended the weekend with a bang and started this Monday off right with two sweet smirks from our Warrior.  One for mommy and one for daddy as he headed out the door for work.  Our little Wylder seems to be doing what he does best … by making himself feel just a bit better each day.  This […]

Derby Day

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Wylder James dressed to impress for Derby Day … to cute not to share.      No big winner at ‘The Lucky” today, but a fun day as a family! xxoo

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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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Major Meltdown

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I had what we refer to under our roof as a major meltdown today … the ugly cry … the kind where your lips are quivering and the shoulders are bouncing and you can’t keep up with your own breath.  WOW, I know I will be in bed early tonight, after wearing myself out with that […]

He is Just Where he Belongs!

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Warrior Wylder James Laffoon is officially home sweet home!!  HUGE sigh, and BIG yeah.  He is so strong and making us so proud.  Hospice helped us coordinate a smooth ride home home for Wylder … where he could just sit back in his Wizard and relax.  It was perfect and the EMT’s were so wonderful.  I road with Wylder, closely followed by Daddy (in […]

It’s About That Time

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It’s about that time … click, click, click and HOME SWEET HOME. Pulminologist Dr. Legris came by to see Wylder James yesterday and we are going to keep Wylder on high flow nasal candular during the day and bi-pap for breathing treatments and overnight as tolerated by the Warrior.  He is beginning to get a bit grumpy about the […]

Not Quite Time for Home, Yet

Mr. Wylder is still at the hospital.  We had a two step forward one step back last 36 hours here.  His right lung has partially collapsed and is just not recouping like we had hoped.  So yesterday we tried a handful of back pocket ideas the docs here at Shae had … but this mornings X […]

GREAT-NESS

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Our sweet boy certainly continues to baby step in the right direction … with the help of all of your love and prayers of course.  The nights are when the Warrior pulls out most of his “tricks” like low grade fevers, seizures, fluid shifts etc.  But the days are relatively quite.  Don’t all kids always spike […]

Photo Ready

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Baby steps …. the bi-pap machine is officially off (around 5am)!!  So proud of you Warrior Wylder James.  You persevere in ways we could have never imagined.  It was a hard adjustment at times for Wylder throughout the day to have his body re-adjust … but those beautiful brown eyes were open a lot today and […]

Go Baby Go …

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Wylder has been tolerating this bi pap machine now for almost 36 hours and it is making a HUGE difference.  What a good boy!!!  His X Ray this morning was much improved from the last two … yeah.  It looks like our Warrior finally has the upper hand on this pneumonia … KNOCK ON WOOD.  […]

The Days Fly By

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The days have just been flying by … never a dull moment around here.  Wylder is doing a bit better in my opinion.  He got fresh sheets this morning and has been snuggled into his bed and cozy blankets all day.  He is resting away. I was even lucky enough to enjoy a nap with […]

A New Part of the Journey

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Hi All.  It has been yet another rough 24 hours for our Warrior.  The nights really seem to be the toughest.  It has been confirmed that Wylder does in fact have Pneumonia.  It looks like a bacterial pneumonia from all of the junkiness off and on that he has had the last few months (vs. […]

On the Road Again

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Another big change for our Warrior, unfortunately not for the better.  Wylder had another very rough night … his fever spiked to 104.8 and his heart rate was in the 150’s and 160’s even with all the medicines and when he appeared somewhat relaxed.  It was evident that his body was working very hard.  Around […]

WOW

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I could come up with no better title for today’s blog other than WOW.  Things really changed around here overnight for Wylder.  The Warrior’s flips and flops have always been quick … but this one really caught us off guard.  He had a very restlesss night last night and was vomiting and coughing a horrible cough.  I guess that […]

Nothing Gets Him Down

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Mr. Wylder and I have been battling a small cold or allergies … or just a little something something.  I was horribly nervous on Sunday, but am beginning to realize that it’s nothing horrible or scary, just a yucky cough and very run down.  I think it may just be allergies, to be honest with […]

A Plan Stan

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I am so excited that I am typing this post.  I hope my fingers don’t get to flying too fast and make a smorgasbord of spelling and grammar errors (again, tee hee).  Wylder’s THIRD birthday is one month from today … MAY 15th!!  Wylder James Laffoon is turning THREE!!!  I am so excited … I am squeaking […]

Zzzzzz

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The last few days have been sleepy for Wylder.  When he is sleeping his junkiness is usually more quite and it breathing is more relaxed.  It is beyond wonderful to see him comfortable.   He has even been doing this little sucking thing when he is in a deep sleep.  It reminds me so much of when he was little and […]

TREK-king with a Warrior

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The youngest member of our Niemann Pick A family turned 1 today.  He is a tiny but mighty little guy named Trek Atlas who is spending his days with his family traveling the globe.  I know most of you all follow his blog too … but in case you don’t, you can find a link on the […]

Soaking It Up & Remembering

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The morning news said 94 degrees in the valley today … YIKES … so we went for an early morning walk with Mr Wylder (around 7am).  Wylder runs warms as is … so to take him out in the heat is almost impossible.  So this morning the weather was wonderful and he enjoyed the beautiful breeze while […]

Hippa-de-Hoppa-de

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Chalk up the blood transfusion as a success …. Wylder had the best weekend!   He rested most of the day on Saturday and was up bright and shinny (4:30am) looking for that Easter Bunny.  Easter was such a fun day and Wylder REALLY enjoyed himself.  He started the day by opening his Easter baskets … […]

Mini Transfusion

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Gran, Wylder and I are here at Scottsdale Shae Hospital … what a wonderful place.  We were greeted with open arms and lots of lovn’ for Wylder James.  They are so kind here and always understanding of our wishes … like not doing blood pressured on Wylder.  We want to do nothing that causes him pain, and they […]

Bunny Bait

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Well, unfortunately the ‘junky-ness’ continues for our Warrior Wylder.  It is so darn hard to listen too … he sounds a bit like Darth Vader at times.  We are continuing forward with the ‘pulmonary cocktails’ (8 breathing treatments a day), trying to position him as best we can, giving a bit more morphine at times to […]

Busy Bee’s

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Long stretch without an update from us … so sorry!  It has been very busy around here.  It is officially a NO GO on the new medicine Robinul.  Wylder’s system is just too sensitive … and although it was worth a try we certainly did not see enough benefit to out way side affects.  We only tried the […]

Beach Boys ‘Barbra Ann’

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We want to start this blog by thanking all of you so much for your outpouring of support in regards to the article on our family in AZ Images Magazine.  We agree that the writer (Amanda) did such an amazing job and to say we our proud of our Warrior … well, there really are no words.  Here […]

Spreading the Word

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The article came out today “Meet the Laffoon Family” by AZ Images Magazine.  Wylder is the most amazing little boy … raising awareness and reminding people what is really important in life!!  You make us so proud little Warrior.  HUGE thank you to Amanda Larson for capturing our family so beautifully with your words … […]

Easter Beagle

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While Wylder was napping yesterday the Easter bunny hopped by … and left a few eye candy treats for the Warrior to enjoy.  Lookn’ good. Lots of kiddos run around and do not really apprecaite holiday decor/trinkets … and maybe even take the time to rip a few pieces down as they run by (like they should :)).  […]

Aloha

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It was a pretty good weekend for our Warrior …. a bit of pain on Saturday, but manageable and Sunday he was back up to snuff.  The best part of our weekend (BY FAR) was hearing from Ernest.  Ernest is from Maui … he is not only a friend but a spiritual guide for both Steven and […]

A Day of Reflection and Appreciation

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Wylder had another sleepy day today … off and on.  His labs this week looked very good and he seems comfortable.  As Wylder was off in dreamland I sat beside him and decided to start our Easter projects … and I needed ONE picture.  Well, I became seriously distracted and flipped through all the amazing photos of Wylder James […]

Angel Wings

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Sweet curly haired Kaitlyn passed away peacefully this afternoon … with her mommy and daddy right by her side, and a big blue bow in her hair. (click on the pict below to read Deanna’s Blog) Our house was sad and somber today … felt like something was missing.  Although Wylder slept most of the day, I […]

A Lil’ Bubble Trouble

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Wylder James finished up his Saint Patty’s day weekend with a bang.  He truly enjoyed his time with grandparents and friends around and even let out a BIG smile after a warm sponge bath.  Wylder’s days were sleepy … but comfortable.  Overall we continue to count our blessings. Have you ever been in mid conversation […]

It’s Me Day

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Happy Saint Patrick’s day from our little Irish Warrior!!  An Irish blessing from our home to yours … MAY YOU ALWAYS BE BLESSED WITH WALLS FOR THE WIND. A ROOF FOR THE RAIN. A WARM CUP OF TEA BY THE FIRE. LAUGHTER TO CHEER YOU. THOSE WHO LOVE YOU NEAR YOU. AND ALL THAT YOUR […]

A Regular Ol’ Update

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It’s Thursday already?!  This week has just flown by.  Wylder and I have been starting our mornings each day by reading this special prayer hanging from one of Wylder’s wishing trees.  It is such a wonderful way to start the day … and a great reminder of the right thing to ask for each morning time sunshine (click below). We […]

National Drug Shortage

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Our motto in our home is information is power … so this is the information as I know it.  I just felt I had to share with all of you.  Steven and I live day to day in the wonderful world of medicines, and even we did not know the extent of this CRISIS our Nation has on […]

Haircut 101

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Have to start this blog by saying the best news …. Wylder laughed, that’s right LAUGHED on Sunday morning!!! It does not get any better.  And he was so delighted with himself after the first chuckle, that he did it again.  Two amazing, breathtaking laughs … oh how i soaked it up.  What made him laugh?  We […]

Success

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Another successful blood transfusion for the Warrior yesterday!  It is so hard to believe we have been doing these every 4 weeks (or more) for almost a year now.  Yesterday I was a little apprehensive, as I did not think Wylder was “very symptomatic” of needing the transfusion … but boy was I fooled.  As I […]

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Looks like it is blood transfusion time for our Warrior again … has it been 4 weeks already?  We are taking the little vampire tomorrow …. but this time we are going to Shea Hospital.  We are hoping this will make for an easier and shorter day for Wylder.  We have nothing but good things […]

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Teaching

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Other than a very gurggaly start to our week … our Warrior is on the up and up still.  Well, literally.  I have been propping a million and a half pillows under his back so he can sit as upright as possible to help with the gurgles.  He is tolerating the position better than I had suspected he […]

We’ve Got Morphine

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We’ve got morphine!  The response and outpouring of support and ideas on how to get Wylder his medicines was overwhelming from all of you.  We thank you all so much for your research, connections, ideas (on other med options) and resources.  We were able to get our hands on a couple of viles that we can […]

Up Up and Away

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All good news to report on how Wylder is feeling this week … hip hip hurrah!  We stopped the antibiotic after only two rounds as it was causing tummy upset … but we have continued forward with pulmonary cocktails (8 breathing treatments a day).  The junky-ness in his throat still comes and goes, but the breathing treatments do seem […]

World Rare Disease Day

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Today is World Rare Disease day … that’s  us … Niemann Pick A!  Please give someone a hug from Wylder today, tell a friend about The Warrior and his journey … please just keep raising awareness like you always do.   Click on the picture below to see Wylder and daddy giving a SQUEEZE from the National […]

Explination

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Sunday was a GREAT day for our Warrior and he decided naps aren’t for big boys … so he went ALL day without a nap.  7am to 6:30pm.  I had to remind him he is only 2-1/2 and naps are very important (tee hee).  Actually, if I am being honest … we totally enjoyed having […]

A Pulminary Cocktail

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Our week seems to have turned around for Wylder … yeah.  It has not been without “hiccups” but pain management seems to be more on the up and up.  What a relief (for now).  I was reminded this week about the true TEAM of people it takes to get the Warrior and our family back on track.  WOW oh […]

Appreciate!

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Love and apprecaiting today so far.  I woke up to the cheery-est boy feeling better (no more fever) … and smiling;   He had a long walk, a nice bath, and an afternoon nap.  LOVE today!

Heavy Stuff

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This has been a very rough Wednesday on our Warrior.  Lots and lots of pain medicine to attempt to keep him comfortable.  So many unknowns … and what and where the pain comes from continues to be multifaceted and unpinpointable.  This make a “fix it” … impossible.  It has been a hard day.  Have any […]

Butterfly Release

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Happy Presidents Day all.  We enjoyed a wonderful day at home today … which included daddy having a day off of work.  Wylder was sleepy most of the morning today … but we did do our butterfly release this afternoon. We really enjoyed doing this project.  It was a fun thing for Wylder to check […]

Ying and Yang

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This week has been all about trying to find a balance … a ying and yang if you will, of medicines for comfort without altering Wylder himself.  Our little Warrior continues to have these pain “episodes” that are not only unpredictable in terms of WHEN … but they are clearly very very painful for him.  We feel like […]

Valentine’s Surprise

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Finished up a magical Valentine’s Day with a bang … BIG smiles from Wylder!  Daddy wasn’t thrilled about the heart face paint (tee hee), but our Warrior was happy.  These pictures are just too cute not to share with all of you!  To top the day off the butterflies emerged … yeah.  Waiting for one more […]

Happy Valentine’s

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“How do you spell love?” Piglet “You don’t spell it … you feel it.” Pooh (a quote from Wylder’s wishing tree) We are sooooo feeling the love this Valentines day with our sweet Wylder at home sweet home.  This time last year we were at Phoenix Children’s Hospital where Wylder was having a hernia removed (outpatient).  […]

Sympathy Pain

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It has been a while since I have written about ‘sympathy pain’ … and if you are newer to Wylder James’ blog, you must know there is a special bond between puppy dog Maddie and Wylder.  In the past with hospitalizations and health issues etc for our Warrior … Maddie has always followed suit.  I thought […]

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“Unless someone like you cares a whole awful lot, Nothing is going to get better. It’s not.” ― Dr. Seuss, The Lorax I though I would start today’s blog off with this OH SO TRUE quote.  I was reminded of this yesterday (once again) with another successful blood transfusion for our Warrior. We talk about blood transfusions like […]

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Not Up to Snuff

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Poor little Wylder James has just not been feeling up to snuff since Monday afternoon.  He is very irritable, sensitive to light and having some pain episodes.  He has been resting a lot the last few days (with the help of medicine) … to give his little body a rest.  Gotta love the meds!  He […]

Date Night

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We stirred it up a bit this weekend … it was really fun.  Although we always have our business as usual with story time, walks etc … Saturday night we heard that Dr. B’s band (Champagne Tap) was playing at the Phoenix Open (golf tournament) after hours tent.  That’s right … he’s in a band […]

Fro Hawk

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We started this wonderful Friday morning with a bit of tub time for Wylder James, that ended with a fro hawk and a little snooze.  Not a bad way to start the day :).  Wylder was more comfortable this morning and enjoyed his usual daytime walk and patio book time.  He did have a bit of […]

Medical Marvels

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Well, we watched the NBC report here at our house on the Apes and Medical research and we were a bit disappointed.  Really wish they would have touched a bit more on all of the people that this sort of research helps … boo hoo.  Some news is better than no news though … got […]

Fresh Perspective

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We finished out our weekend on the up and up.  Wylder enjoyed his very bubbly bath time and a few long walks in our beautiful 75 degree weather … and smiles galore that we continued to just soak up.  NPA is a progressive disease, as you all know, and as Wylder lost certain abilities (like the ability to […]

Best Gift

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Wylder gave me the best birthday gift ever today … how does he always know just what to do? Click on the picture below and enjoy!  xxoo  Thank you all for the amazing birthday well wishes.  

A Well Oiled Machine

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Have to start this blog with the BEST news … 6 smiles from Wylder yesterday ….YEAH!  Our enitre house lights up when he shares those.  So happy he is feeling better and back on his basline regiment.  Speaking of baseline regiment … We have what we refer to as restock Tuesday’s at our house.  This […]

Angels Among Us

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After a few hours under the magic of the Wishing Tree’s … surrounded by your love … Wylder James is feeling much better.  We are so reminded the delicate-ness of him and his little system with all the flips and flops.  We are back on his baseline regiment and hopeful he will continue to feel better and […]

Flip-a de-Flop

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Okay, so I spoke a bit too soon.  Although pain episodes continue to be gone at this point … what a rough sunday, sunday night and monday morning for Warrior Wylder.  He flipped on a dime again … soooo Warrior Style.  Loads of gags, chokes and projectiles … and even a fever this morning and high […]

Back On Track

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Wylder has started his antibiotic and so far so good.  We are preventing sodium issues (that landed him in the hospital in December) by watching ‘in’s and out’s’ even more carefully then usual.  Making sure he is getting all his TPN … even if it is a bit more daily fluid then he is used too … this is […]

Fighting Little Something Something

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A sleepy note from Warrior Wylder James today … who is getting plenty of zzzz’s under the sun outback today.  Those baby brown legs are getting browner by the minute.  We had an appointment this morning with Wylder’s Geneticist Dr. Aleck … but we canceled last minute.  Given the ups and downs this week has […]

Twinkle Twinkle

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Wylder enjoyed a very relaxing and sleepy sunday.  He spent most of the 24hrs sleeping … except for about 3 hours of book and bath time.  This extra sleepy-ness may have been because of the change in medicine I was telling you about … or could just have been one of those days.  He was very content […]

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Happy Saturday.  Our usual morning time sunshine Wylder has turned into quite an afternoon delight.  Mornings have ALWAYS been Wylder’s best time, but lately he has had bit of agitation and morning pain (manageable) … but come about 3:00 in the afternoon he perks right up and offers smiles and even a few giggles.  What […]

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The Count

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Count Dracula had another successful blood transfusion today and is snug as a bug in a rug tonight with very pink cheeks.  Monday was a very sleepy day for Wylder after a bit of pain and 2 rough night sleeps in a row.  After hospice nurse Cherie came took check on the little guy yesterday […]

Random Act of Kindness

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Good news … no urinary track infection for Wylder James, which means no rocking the boat with medications etc.  HUGE relief.  No defiant answer on the exact cause of pain … but it may be bladder spasms.  He has been symptomatic of ‘bladder spasms’ before and it did eventually go away on it’s own (not […]

CHEEEESSSEE!

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Gotta chalk this up as another good week for Wylder.  We had quite a bit of down time together and spent a lot of time outdoors tanning those baby brown legs.  I got HUGE SMILE and even a small laugh this week … loads of smiley eyes and Elvis grins too.  I was able to capture […]

WN Tee’s

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Wylder’s daddy has decided to start this new year off right.  He has really outdone himself and ordered beautiful Long Sleeve T’s for all of you ‘WYLDER NATION WARRIORS’.  They are bautiful.  They are a very high quality shirts made by the same manufacturer as The Whale Foundation Shirts you have all often seen our family cruising around in.   http://www.pacificwhale.org/content/unisex-long-sleeve-research-team-shirt […]

Happy New Year

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2012 is off to a pretty darn good start.  Wylder had a great weekend and had a very relaxing time with mommy and daddy.  We all enjoyed good family time grilling and pool side in our 80 degree weather.  We even relaxed infront of our ‘lion king tree’ and looked at beautiful change in leaf color.   We did notice starting […]

Top 10 of 2011

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Time Magazine … you have some stiff competition over “THE WARRIOR’S TOP 10 MOST MEANINGFUL HAPPENINGS OF 2011″ Coming in at number ten … 10. WYLDER’s 2nd BIRTHDAY … surrounded by family 9.  Learning the Impact of a Warrior RAISING AWARNESS … school fundraisers,  jewelry party,  1st birthday parties that raised funds instead of presents for their […]

Family Photos

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Got some great pictures back from Darrin Goodman Photography of the Warrior with his mommy and daddy.  HUGE thank you for capturing our family, we will cherish so very much forever!  See more photos (and family if you want to order prints) … click on the link below. https://vando.imagequix.com/proof.html?id=49MPG9G&eventid=1067-9040-0060 Password: 1219fn   Almost 2012 … […]

Christmas Wish

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Well our Christmas wish came true and Wylder had the most amazing day.  He felt so good and enjoyed all the time with his family and opening all his goodies from Santa.  Santa Clause definately came to town and Wylder must have been at the top of his ‘good list’ because the Warrior made out […]

Merry Christmas

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Merry Christmas to all and to all a good night. xxoo

Ho Ho Ho

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Almost Merry Christmas time all!  We didn’t quite make it to zoo lights with the Warrior …. but we did have a wonderful outing to Kierland Commons where Wylder LOVED the Christmas lights, a GIANT Christmas tree and even got to meet Saint Nick.  What a wonderful time and Wylder did sooooo good. Grnadparents Gran, Grammy and […]

A Beautiful Way to Live

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The holiday cookie bake off on Monday with Gran was a big success … and those cookies sure do slide right down the hatch very easly … and are being thoroughly enjoyed.  Yesterday (tuesday) was the BEST day.  Wylder was having a great day so we took a trip in the car to deliver some Christmas treats to […]

Bliss

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Another wonderful blissful weekend.  As Daddy prepared for the Company Christmas party on Saturday … Wylder and I ventured out on a long walk.  We walked all the way to our good friends house where Wylder saw his first LIVE Christmas tree … beautiful.  Our adventure out even included a bit of desert four wheeling […]

Holiday Prep

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This week has just flow by! With the hustle and bustle of the holiday season we have found ourselves even busier then usual. Wylder has had a really enjoyable week. Simple … and comfortable. We have noticed a BIG change in The Warrior’s hair … that’s right, I said hair. His crazy hair-do is M.I.A […]

UP’S and downs

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The roller coaster of love continues.  Wylder’s day on Sunday was a definite case of the blues.  The poor little darling had a lot of pain throughout the day and our walk even got cut short because of it.  Walks and being outdoors is usually the Warrior’s best thing.  The origin of the pain is […]

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Hi all … I have a weekend update for you.  Wylder has had a fairly enjoyable weekend …. including BEAUTIFUL weather that made for wonderful long walks.  Wylder has been very tired this weekend, but we have enjoyed watching him look so snuggly as he cuddles in for naps.    The only downside to the weekend has […]

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Full-Filling Day

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The transfusion did it’s job … it really perked up Wylder James.  It really is AMAZING how much better he feels after receiving them. I new it would help, but was taken back at the difference it made in his energy, head pain etc.  His white count is still very low so he is fighting every […]

A Day In The Life

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This morning was off to a bit of a rough start with a fever and a rash that reminded be of baby acne on Wylder’s little face and neck.  It has now moved down to his tummy too.  It doesn’t seem to make him itchy or agitated … just a new manifestation?!  Without a working […]

Labs Tomorrow

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Not as great of a day for the little Warrior today … very tired and cranky when awake.  His eyes also seemed extra sensitive like it hurt to open them all the way, maybe a bit of a headache?  We were prepared for fluid adjustments but this seems awefully quick for a big shift in sodium??  Also the […]

Good Day

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SO SO SO grateful for a lazy day Sunday at H.O.M.E.  We know that we will continue to have another management /balancing act on our hands but day one was a success and so we continue to count our blessings.  After a crispy cool afternoon walk, Wylder snuggled in for a very long afternoon nap under […]

Where the Heart Is

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WYLER IS HOME!!!  We got home around 3:45 today and it felt so good to walk through our door and see that sweet maddie shaking that toosh away with happiness.  It was not as simple of a check out as just paperwork … it always takes much coordination with home health and turns out Wylder needed another round of […]

Still Chilln’ Here

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No click of the heels to head home today … but soon.  We want to get it right and take our time balancing Wylder while he is in good hands here … so when we return home the Warrior can feel his very best and not turn around and need something adjusted.  So slow and stead still … […]

Hopeful

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I am so happy to report that so far things are going better then expected … big sigh of relief for today.  We are comforted by the fact that Wylder is becoming more interactive again and the blank stare is leaving his sweet face.  He has been though  a LOT in his 36hrs here at […]

Those Noticed Changes=Something

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We got Wylder’s labs back last night and they did not look good at all.  Not as simple as needing a transfusion, as we had hoped.  As The Warrior headed off to dream land last night Steven and I started looking at the labs with worry … and just as our eyes were scanning the […]

Communicate

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I have seen a few new gradual changes in our little Warrior.  Although he seems comfortable, it seems to be a bit harder for him to communicate his needs to us.  We used to say … if Wylder could walk he would be the easiest child EVER to potty train.  At the first sign of a wet […]

Pure Enjoyment

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After the successful Turkey day that included a MOST delicious fried bird … we heading into a relaxing weekend, just the three of us.  Our weekend was full of rest and relaxation … our best thing!  Wylder will be finished with antibiotic Monday, and it kept him safe through the busy week, YEAH!  The Warrior […]

Thanksgiving

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 Happy Thanksgiving to all of our sweet darlings supporters!!! We are so so so very grateful for each and everyone of you.  xxoo    

Sleeping Beauty

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Wylder James has been thoroughly enjoying all of his family and festivities … he just loves the action and of course can just feel all the love.  We had a busy Tuesday which included Chaplin Don (with hospice) coming by for a family prayer.  It was just beautiful… we have said it before and will say […]

Antibiotic

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Today’s task for Warrior Wylder was to get him an antibiotic.  He is having a wonderful day … awaiting his family to arrive … but we want him  to have the protection.  He had a racing heart rate Saturday night (160’s-170’s) and his meds only gave him a bit of relief, dropping the rate into the 140’s.  That […]

Delish

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Happy Saturday all.  Wylder’s weekend is off to a good start.  We have all been enjoying some evening golf course walks and our weather is just out of this world.  The sunset tonight was the kind that makes you just stop and stare.  The Warrior has also been enjoying his daily stretches and his range of motion seems to […]

Breathtaking

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The Warrior continues to just enjoy.  The Christmas decor is a HUGE hit with him, it brings on loads of  ‘smiley eyes’!  Other then a horrible bum rash … that “content-ness” continues for Wylder.  We are soaking it up!!!   After watching and enjoying some of Wylder’s friend Kaitlyn’s (NPA) videos … it sparked a conversation in our home.  Steven and […]

Appreciation

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The 11-11-11 challenge is officially over.  Thank you all SO much for the participation … we  just know Wylder Nation Warrior’s came through in a big way.  We wish we could thank you all individually … but please know that your support continues to keep our family strong.  We are CERTAIN Wylder Nation and it’s Warriors will […]

Content

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As we began to put up our Christmas decor for the season … I cannot help but feel this level of peacefulness around the house.  I just love it.  Although Wylder always keeps us on our toes, our home has always been quiet and comfortable.  But this week Wylder seamed to have a new level content […]

Love Wednesday’s

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Wylder and I just love Wednesday’s.  We clean the house on Wednesday and don’t usually get our of our cozy’s.  Wylder has ALWAYS loved to watch me scrub away … I am not kidding, he used to laugh so hard.  Especially hosing down the patio … I know he’s thinking … “put your back into it […]

Burrrrrrr FUN

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We got an Arizona cold front … yeah!  The weather was so crispy and cool.  It was AWESOME ~  Even including a quick hale storm.  Wylder James usually runs hot, so he appreciated the cool weather too.  It will help with his night sweats.  He had many jaunts around the block snuggle in his hoody, and […]

Stats

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I took this picture of Wylder lounging on Saturday morning … and when I went back and re-looked at the picture … I noticed … HOLY BIG BOY!!  When did this happen?  (Tee hee).  Wylder’s current stats are 30lbs and 35″ long … what a big boy!  Good weekend for the Warrior … lots of […]

11-11-11

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Hello Hello.  Wylder James has had yet another busy week.  It has felt a bit like grand central station around here with load of friends, family and supporters in and out.  But that has been a good thing … really keeps the energy up … and the Warrior loves the attention.  He has been tired from […]

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Sad news to share in today’s blog.  We learned of the passing of two children with Niemann Pick Disease over this last weekend. Mia Walts, Type A, 2 1/2 years old and Gavin Lopez, Type C, 7 1/2 years old … heartache.  Words cannot express.  So as you head off to dreamland tonight please send […]

http://wylderjames.com/archives/4786

HAPPY Halloween

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Happy Halloween Warriors!!  Another successful CREEPY EEKY here at our house.  Wylder’s day was filled with allot of sleep …. but that doesn’t mean their wasn’t time for fun … meet JAWS!    We also did a bit of pumpkin carving including a spooky ookie rat condo (just what every house is missing).  Wylder’s pumpkin was […]

Weekend Wonders

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The weekend was off to an early start with a visit from Wylder’s Auntie Jaymee.  It was a quick trip … but enjoyable for captain Wylder James and our whole fam.  The day to day was about the same, but with a few new “tricks” from the Warrior … like a horrible case of tummy upset […]

Songs Of Love

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Today was a very special day.  Not as smooth sailing of  a morning for Wylder as yesterday …. but an enjoyable afternoon where he also received a very special gift in the mail.  Back in May … after The Warrior’s longest hospital stay (about a month), I emailed a company I learned about from our Hospice […]

Dragon Mom

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We got it … the Carmel chocolate day we were hoping for that is!!  What a wonderful day the Warrior had today … here’s to hoping there are more to come.  It started with a great nights rest … he basically slept through the night. It is amazing what sleep does for all of us.  Full nights rest […]

Chocolate

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Gump was right …. our “life IS like a box of chocolates … you never know what you are going to get”.  This definately best describes Wylder’s days lately … it’s not a bad thing … we just sort of take what what we get, and roll with it.  Saturday he really enjoyed the morning (even snuggling in for a nap […]

Halloween Fun

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Pictures of the GREAT pumkin! 

Loved

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Chalk yesterday up as one of the best days ever!  This happened; I am SOOOO happy to be able to share a smile picture with all of you.  So special.  It was a great moment!  I know you are wondering what prompted this big CHEESE … it was a darling picture of his newest cousin […]

Camping

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Last night we went camping … okay … so sort of.  We camped out in our family room.  After a cranky afternoon for Wylder James, around 6pm last night we set up a marvelous pallet for him on his trust tempurpedic mattress on the family room floor.  He got so comfy … there was no way […]

Wind In His Hair

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Good Monday All!  Wylder still has some signs and symptoms of a little cold.  Definitely seems more viral though … vs. infection-like??!!  That is not a big surprise seeing how low his white blood cell count has stayed … he is very susceptible to anything.  I did chat with gal pal Dr. Gerlach though, to confirm […]

Allger-GEEZE?

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It’s Saturday … YEAH!  We just love the weekends.  I know that sounds silly … we are always home and are days are so similar to weekend days … but just the fact that it’s a weekend, it always feels more relaxed … hurrah!  Wylder woke up with a few cold like symptoms that I am hoping are […]

Do You Believe in Magic?

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When you wish upon a star Makes no difference who you are Anything your heart desires Will come true   If your heart is in your dream No request is too extreme When you wish upon a star As dreamers do   Like a bolt out of the blue Fate steps in and sees you […]

Over the Moon

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   Tonight I was over the moon to have some good quality family time after dinner.  The three of us relaxed on the patio and took Wylder for a few laps around the pool in his Wizard.  We watched the sunset and then came across the most beautiful full moon and stopped for some shots.  […]

Lazy Sunday

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Looks like it’s going to be a lazy day Sunday.  Wylder has been catching up on his zzz’s this morning and looks so comfortable.  He enjoyed a few short books on the patio and has been having a lounging casual Sunday.  He had a great nights rest last night too … we hew hew~  You […]

Roll’n

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It is hard to believe we will have been home for a week tomorrow … time flies when you are having fun.  We continue to adjust to Wylder’s new “baseline” and are getting used to what we call his new tricks.  Some days are better then others, of course.  Some days he has pain and […]

Awareness Month

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We just recently learned that The National Niemann Pick Foundation has named October …. Niemann Pick Awareness Month. Aren’t we all feeling more aware then ever about this disease with all that Wylder has been through recently?? There is an 11-11-11 Challenge … and I know The Warrior and his followers will contribute in a […]

Groove

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We were a bit overwhelmed our first few days at home … but now we are getting in our new groove and just enjoying all our moments at home.  This was my favorite moment yesterday (by far).  SLEEPY TUB TIME; Wylder is adjusting well to the medicine too and he is not as tired during the […]

No Place Like It

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Day one at home was wonderful … there is just no place like it.  Wylder spent most of the morning napping and so Gran and I set up home base for Wylder in his bedroom.  We re-arranged so his room could have everything at our finger tips.  It is super cozy and now there is a […]

Wishing Tree

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We are home.  It is the most amazing feeling and stressful in the same breath.  The amount of medicines, equipment and care requirements is a times overwhelming … but we know we are just where we are supposed to be.  We know that you all are with us every step of the way … you laugh and […]

Click, Click, Click

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Morning Warrior Supporters. We got a piece of very good news this morning.  The culture was negative (for 48hrs).  They will continue to watch the culture for 5 days … but today Wylder James will go home sweet home. Last night The Warrior gave us quite a scare with dipping heart rates and rising blood […]

Final Pitch

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By far the best news to report is that Wylder was much more himself today. YEAH YEAH YEAH.  He was tracking toys and balloons in his room and enjoyed all his books.  He was looking right at me during our snuggle time today.  He enjoyed a trip to the courtyard with Mommy and got a bit […]

Teeter Totter

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Teeter totter … the best way to sum up today so far.  Where shall I begin?  Good news is the blood culture from yesterday and this morning have not grown anything so far.  This is HUGE … it means the antibiotic fighting the line infection is doing it’s job.  Wylder continues to have no fever and […]

Vanco

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Thank you all for your most amazing notes to our family today … you all really lifted our spirits!  Wylder is much more comfortable today.  The fever is staying away and heart rate is “normal”.  He also had another successful blood transfusion … so his coloring and blood counts are much improved.  The Warrior is […]

Unthinkable

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Even after the wonderful home care Wylder received from hospice yesterday and after receiving his first dose of antibiotics around 5pm,… unfortunately things took a turn for the worse.  Around 6:30pm Wylder’s pain became un-managable at home and he began to become quite distressed and had an increase in vomiting and seizure like activity.  With our nerves […]

Spike

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Just as we were beginning to put our guard down a bit …. Wylder spiked a fever last night around 10pm.  We were up with him with cool rags, tylenol and room temp baths.  We seemed to manage it over night … but in the morning he just looked like he felt so darn yucky!  […]

Some Relief

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Wylder is feeling a bit better.  We have be giving him his pain meds on a regimented schedule which helps with letting his little body rest and stay comfy cozy.  When he is awake he is very alert.  He was even up for a bout 2 hours in a row yesterday where he enjoyed books […]

Bug in A Rug

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Today was a little rough around the edges.  Poor Wylder just had so much gul-darn pain again.  We do have it managed at home … but it is difficult to just keep giving and giving him medicine.  As a mom, it is against all natural instinct.  Nothing natural about having a sick kiddo though, so once […]

You are my Son-Shine

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Weekend Wonders

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Sorry it has been a few days since our last blog … we have been busy busy.  Friday I sort of had a case of the ICK’s and became overwhelmed from all the stress, information and episodes from the last week or so.  The appointment with Dr. Berger went well, not to much not to […]

GR8FUL

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In the News

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Better day today.  Hospice came by this morning and was a big comfort about comfort for Wylder.  We are going to try a new night medicine before jumping to removing the GJ tube and go from there.  On Friday we are going to have a home visit from a new doctor (to us) Dr. Burger.  […]

Cramps

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‘No Pain No Gain’ … whoever came up with that one … well, I’d like to find them and have a chat.  We have absolutely no tolerance for pain in our home.  It is the one thing that really pushes us all over the edge.  Yesterday the Warrior had a bunch  of those cramps again.  Why oh  […]

Warrior Blood

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Wylder has been enjoying his weekend.  Uncle Puppy is in town visiting the Warrior … and with new books in hand, the Warrior was soooo happy to see him.  He even snuck out a few Elvis grins to show his excitement.  Spent a bit of time poolside with friends today (Saturday) and overall he had a great […]

Rock the Boat

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We have had a busy couple of days.  We had a few doctors appointments … which we haven’t done in a long time.  Yesterday we saw Wylder’s liver specialist Dr. Miloh.  Wylder did great at the appointment and we are going to cut back on the amount of lasix (diuretic) we are giving him to […]

Stand Up

Sugarland Performs At The Greek Theatre

LOVE this song right now … makes me think of of our families journey!  Click on the image below and ENJOY  

Beautiful Snaps

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The best thing happened last night … another GIGGLE!  Wylder was all snuggled into his big boy bed for the night … then about 20min in … his darn toe alarmed.  This is what checks his heart and oxygen levels and alerts us if anything goes wrong.  In this case it had just come loose […]

Snuggle Time

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Just enjoyed my favorite time of day … snuggle time.  I held the Warrior in my lap for about 30 minutes in my favorite leather chair, where we chatted.  It is the best!  It is complicated to get him comfortable and untangled from all the wires … but oh, so worth it!  SQUEEZE SQUEEZE SQUEEZE We […]

Dr. Adelson

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As you all know we have such an appreciation for Wylder’s neurosurgeon Dr. Adelson.  A major moment for our family was the moment we rushed Wylder to Phoenix Children’s hospital last December where we learned he had Hydrocephalus.  As Steven and I waited in a dark waiting room at midnight for Wylder to get out of emergency […]

WEW HEW HEW

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Wylder has been feeling so good since his transfusion … it was just the boost he needed … our little Vampire baby.  His little body is not having to work so hard so he is full of energy.  The Warrior was up from 6am to 7pm yesterday with just one 20min nap.  He has had […]

Perspective

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Success!  Wylder, Rachael and I headed to PCH early this morning where the Warrior received his 4th blood transfusion.  It was ready to go when we arrived and ran over about 4 hours.  He looked better instantaneously.  Cheeks reddened right up, skin was less modeled and energy was up … oh, and heart rate was […]

Hiccups Hurt

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The Warrior ventured out and about a few times in the last few days.  Yesterday we hit Target for some fresh blankies and today we went to an appointment at Phoenix Children’s.  Target was fun … we even browsed the toy aisles for a new toy or two … where I realized The Warrior has […]

Blown Away

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Just wanted to send out a HUGE thank you for all of the votes you have all sent my way for the Momination!  It literally takes my breath away … 728 votes and counting.  We are raising awareness with every vote … THANK YOU! I can feel the LOVE … THANK YOU, THANK YOU!  http://mom.babble.com/mom/mominations/mominees/charity/shannon-laffoon […]

Quick Trip

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The Warrior enjoyed his last few days!  Had GranPops and Uncle Campbell and Jason in for a quick visit.  Enjoyed some pool side time and we even got some great pictures.  My favorite photo is a toss between Wylder hand in hand with Uncle Campbell or the crew in the pool with Wylder  in the middle […]

Tribute

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Watching Maddie swim back and forth as Wylder sat under the umbrella pool side today I thought of the perfect blog for today … a tribute to Puppy Dog Maddie.  You hear all those stories on TV where dog’s have a sixth sense and things they do for their families that take your breath away … well […]

Relax-sation

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Much, much more relaxing day today.  Wylder’s heart rate was a-okay and even though he was tired today … we managed to fit in yet another much needed haircut!  Look at that little darling …. awwwhhh! It was 115 here in the valley so we didn’t even crack a window or hit the pool.  We […]

Bill Murray

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I totally felt like Bill Murray today … groundhog day all over again.  Wylder’s heart was racing all through the night … 160’s and 170’s yikes … like he was running a marathon … only he was totally peacefully asleep.  We were just watching … worried … how long can his little heart tick tick […]

Piano Man

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Looks like we have ourselves a little prodigy people!!  Playing all by himself … he is watching the light on the piano that lights up each time he pushes a key.  Too sweet … http://www.youtube.com/watch?v=GPE9ViPYu7Q    

Angels

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Shark week is over so we are back in the pool again … Wylder and I were afraid for a while that those beast might be lurking in our pool too!  YIKES   Pool time is our favortive time of day … breaks up the day and really perks up The Warrior.  Captured this great shot of him snuggled […]

Spread It

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As the famous Mr. G (HBO’s Summer height height) would say … it’s time to ‘SPREAD IT’.  Can you all please send this to everyone you know?? There are amazing mom’s competing … but I think we can win this thing! It will really help in bringing awareness to The Warrior’s story and create awareness where there is a lack of it!  Let’s […]

Good Amo

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The weekend has been very relaxing … family has been around and lending a helping hand.  Loads of laughter and good o’ family time.  We even went through some old photos of Wylder’s daddy … too sweet!!  I looked for some good amo and this was the best I could find (old then new); We spoke with Dr. Shaw on […]

Going Strong

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Wylder Nation is still going strong … Artie Clear is putting together some awesome sports paraphernalia for an East Coast auction he is doing for WYLDER NATION.  WOW, oh WOW!  Thank you Artie.  https://www.facebook.com/#!/profile.php?id=1407727592  Details to come. It was another day in paradise here.  Rachael (RN) was here today so I found myself getting loads of […]

Full Submerge

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Wylder had a REAL dip in the pool today!!  That’s right … the full submerge happened.  Pool chemistry was perfect … so off we went.  You would not believe how peaceful he was … calm as could be … and even did some back floats.  Not a cry or a wince … a little water […]

Deep In Thought

WandMaddie

No news is good news.  The days are quiet …. Wylder is still pretty lethargic.  No pain, and happy when awake … just so sleepy.  We are waiting for the Warrior’s lab results now … hopeful to have them all by tomorrow.  We have also decided to step back from the labs a bit, we are hopeful to go to […]

R & R

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The weekend was filled with rest and relaxation … much needed.  Also, stress comes with territory … but to counter balance that with pool time, family and friends … NICE!  The Albumin worked pretty well for Wylder, didn’t see the improvement from it we have seen in the past, but not worse either.  We were so […]

Stressed … But It’s All Good

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Well the constant stress and decisions to be made are waring on me … but the Warrior is doing well.  Still a bit lethargic a bit off and on … but overall looking a-okay!!  Blood Work didn’t look great and another blood transfusion may be in his future.  We are evaluating the patient though, not […]

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 […]

Monica Kisses

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Got the best video sent from Steven at the conference … Wylder’s friend Monica (NPC) blowing him kisses!!  Too sweet.  Monica lives in Canada and we have spoken to her momma on the phone a few times.  Monica has NP type C and her parents were told by doctors she only had months to live when she […]

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 … […]

Baby Connect

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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 […]

Special Gift

Hermans PLatter

Wylder James made a special gift for some special friends.  We wanted to somehow thank The Herman’s for flying The Warrior to Denver Children’s Hospital in June … but what to do, what to do?  Something memorable … a conversation piece for them to share their goodness with others perhaps?  And then it came to us.  So we […]

Lemon Stick

lemon

The Warrior had a nice weekend.  Ran around a bit and enjoyed some family time at home.  He seems to be feeling more and more like himself.  He was even sucking on a lemon glistering today and put it up to his mouth all by himself!!  He hasn’t done that in a LONG time.  So fun and […]