Tuesday, December 27, 2011

LO of my men, and an inspiration/SL from Renea at Scraps of
Darkness.  This is from the Winters Eve kit at SOD.  Loving the
versatility and beauty of this months kit!!

this is a LO from the wonderful winters eve kit over at scraps of
darkness.  the photo is that of a gravestone i found in denver
when caden and i were on our trip.  the stone is of a little girl
named emily.  she was so breathtaking holding her little doll.
the marble work was still stunning even after being in the elements
for more than a hundred years. tfl!

some of my stash along with a dusty attic chandelier chippie,
Doily, bo bunny trinkets, and flowers from the
scraps of darkness winters eve kit.  the hallway pic is one i took at the
stanley outside room 217.  love the creepiness, even in december.  tfl!

Thursday, December 22, 2011

We are home after a delay at the airport in Denver due to snow.  It could have much much worse but we were able to get off the ground about an hour and a half after we were scheduled to leave.  We finally got to bed about 3am and are now getting back to reality.  Caden is working on his first soak and seal and Anna and Rachel are entertaining him.

We were surprised by Daddy and all his hard work while we were away.  He laid tile in Caden and Sam's room, painted the girls and boys room, had the carpets professionally steam cleaned, among MANY other things.  The list just goes on and on and it made coming home less stressful, with the hard work done, I can continue to focus on Caden's daily regimen and.....scrapbook yea!!

I came home to a Christmas gift of Scraps of Darkness, the December kit is nothing short of fabulous and I cannot wait to dig in.  Especially with lots of new pics from our adventures the last two weeks.  With my semester over and the holidays among us hopefully I will get some "dark" time!!

Wednesday, December 21, 2011

We are at the hospital this morning for Caden's discharge. Lots to do before our flight back home. We are happy to be going home and scared at the same time. Yesterday went good with the soy so it's back in!!

Monday, December 19, 2011

December 19, 2011

Tuesday we are giving Caden a food challenge for soy products.  It is believed that he had a false positive and that he is indeed NOT allergic to soy.  This would be amazing so we could give him soy milk, soy cheese, ice cream etc....fingers and toes crossed, come on angels line up.

Sunday, December 18, 2011

it's official, i am getting weirder.....

December 18, 2011

We have had a full weekend of adventures.  Caden looks amazing and is full of energy.  We started our Saturday with a trip to the hospital with a check with Dr. Covar, then a soak and seal.  Then we went to the amazing Fairmount Cemetery here in Denver.  Afterwards we went to the zoo, where Caden finally got to see the giraffes.  I am posting pics on his page and on the statuary page.

Caden's zyvox med is going good with no problems and he is sleeping peacefully at night after his last soak and seal for the day.  I am amazed at how we don't need antihistamines anymore and am hopeful that this will continue when we get home.  He is not having any open sores, cracking, bleeding or crusting whatsoever.  Even more amazing is that he is not digging at himself and his skin is still healing so great.  Since he has had so many years of intense scratching and cracked skin his extremities will take quite a while to begin to look normal, whatever that may be only time will tell.

We return Monday morning to the hospital for the final 3 days of treatment and then hop on the plane to home to celebrate Christmas.  Caden got to meet Santa tonight here at the Ronald McDonald house, and I was able to convince him to get a picture only after I agreed to sit on Santa's lap too.  Too funny, but hey, it worked.  Poor Santa....Until tomorrow, sweet dreams!

Love to all,
Jenny and Caden

Friday, December 16, 2011

Dec 15, 2011

It's late and we are just settling in.  The zyvox is going good and we are going in Saturday morning for a skin check and Caden's first soak and seal for the day.  Then we are off to the zoo!  Caden has decided he wants to see the elephants first and then the giraffes.  The giraffes were first originally, but he has changed his mind.  Sunday is snow boot and cemetery statue picture day.  He is excited to play and explore, I think he is starting to get my warped sense of adventure......

We are homesick and missing everyone, but I think Rudy and Jerry are missing us more...Mom thinks Rudy would be happy with a little face time with Rudy, but since he's almost deaf I am wondering.  Maybe seeing our faces will make him feel better, poor furry friend.  We may get snow on Tuesday, hoping it doesn't hinder our escape back to Sooner land.  I had hoped to post pics today, but we are just exhausted, so I will do it this weekend, especially since we will have lots more goodies from our adventures!!

Dec 15, 2011

We just had a  chest x-ray to hopefully rule out lymphoma, it's been a long day, and looks to be longer. We are reintroducing the zyvox to see if Caden flares. We just gave 4cc, wait for an hour, evaluate and then administer the last 3.5cc. If his skin doesn't react we will then consistently give the zyvox for the full round. We are experiencing a flare on his face, legs and back today. No one really knows why, but the most important thing is that no one is giving up either. I have pics to post later when I have my laptop. See you then.

Wednesday, December 14, 2011

Dec 14, 2011

We learned today that Caden is allergic to Garlic and Onion.  He woke up redder than usual this morning, which sent us looking for what could be going on.  We did a CBC and his eosinophil counts are higher than they should be, which could be due to the antibiotic we began yesterday, zyvox.  So, we are skipping this afternoon and evenings doses to see how he looks in the morning without it.

We have begun a vitamin D supplement since he cannot have dairy and his counts were a bit low.  His dietitian also started him on a supplemental formula type product for 1+year old children.  It has a prebiotic and amino acids that will help supplement his diet.

All in all, things are going very well and we are making great progress.  He is a challenge, but the whole team here is very progressive and aggressive.  We have a variety of doctors, from a to z, many wonderful nurses, a dietitian, psychologist, the list goes on and on.  The research in this hospital is AMAZING, and the whole team never gives up.  When something does not work one day, they are on to another idea the next day.  We are busy none stop from sun up to sun down and then return to the Ronald McDonald House and share our experiences of the day with the other families here for the same program.  It is a wonderful support system and we are holding each other up, no matter the trials of the day.  I posted new pics on Caden's page, along with allergy testing from yesterday and today.  Stay tuned!

Love to all, Jenny and Caden.

Monday, December 12, 2011

December 12, 2011

Day 4 of treatment for Caden here in Denver.  I posted new pics on his page along with description about the allergy testing.  Tuesday morning we start 1 bleach bath per day to begin the next phase of treatment.  Since he is positive for MRSA we are now applying Bactroban into each nostril since this is where it colonizes.

The doctor is having the lab test the strain of MRSA to determine an antibiotic that will react to it.  As of now Clindamycin is out.  The clinda worked last time, but the strain has changed and become resistant to it.  Last but not least, his IgE levels are at 98,000, the highest I have ever heard of it being if I'm not mistaken.
See you on day 5.

Love to all, jenny and caden

Sunday, December 11, 2011

Allergy testing from friday 12-9-2011

Quick update.  Friday was Caden's first round of allergy testing which consisted of 7 sticks to the back.  He tested positive for soy, milk, egg, peanut, shrimp and scallops, with soy and shrimp being 2 of the worst.  This would have been helpful to know before I gave him soy for the past 4 years since we knew of the milk allergy during his infancy. He did not test positive for gluten, thank God.

This week is more testing, including environmental and more foods.  Since he has IgE levels so high, the blood work will not be accurate, so the skin testing is required.  The weekend has been very busy, with 3 baths,and the same wrap/ointment regimen.  He is looking more and more amazing day by day, so my hopes are high.  Hopefully I can maintain this success and never see him suffer as much again.  Visit his page to see new pics and stay tuned, there's more to come!!

Will check in tomorrow or the next to update.  Love to all.

Our Adventure at The Stanley Hotel, Estes Park, CO

room 217 
Looking up, next to 217.

Entrance at The Stanley

Main Staircase at the Stanley

Front View of The Stanley

Mr. Stanley's Car.  Very Cool.

Staircase next to 217
hallway at the stanley.  funny thing, this is the carpet
my mother and I chose in our office years ago.  although
the original wasn't filmed here, it is easy to see King's

Monday, December 5, 2011

Jerry's Maternal Side Of The Family

Sweet Baby Caden

SL From Karen over at Scraps of Darkness.  Doesn't Hold A Candle To Hers!!

Another SL.  This is Similar to Nancy's Over at Scraps Of Darkness
Hers is prettier of Course.  This was at The Biltmore in Oct 2010 on the Set of Marry Me.

Sunday, December 4, 2011

Caden 2010
Rudy The Rooster, Buddy Lee Tough As Nails

Caden and I leave for Denver on Tuesday for his 2 week stay with National Jewish Hospital.  We are hoping for the best and I will be try to post often about his progress.  He will endure lots of testing but he is so brave after all he has been through that I know he will do great.  This will be his first plane ride, so wish us luck!!!  Hopefully the angels will all line up and help us on our little journey.