Tuesday, January 29, 2013

Desert Dove Tea Room

Check out the Desert Dove Tea Room website in St. George, Utah.  Miss Haven was a featured story.  She had a great time there with her dad on her last trip out for Chemo.

DESERT DOVE TEA ROOM


Sunday, January 27, 2013

HAPPY 9TH BIRTHDAY HAVEN!!!


Happy birthday to my beautiful baby girl!!!!  Can't believe you are 9 years old today.  In your short 9 years you've managed to overcome cancer and survive some of the scariest surgeries and have taken control of ROHHAD Syndrome.  You amaze me and your father and we couldn't be more proud of you!!!!


Saturday, January 26, 2013

Paria, Utah


 This is one of our favorite exploration areas in Utah.  The city is Paria.  It is a ghost town on the Paria River in Grand Staircase-Escalante National Monument.  It was settled in 1865 and abandoned by 1929.  After that Hollywood came in and made many movies - couple of them - Outlaw Josey Wales and Buffalo Bill.


 The landscape is just amazing to stand in the middle of.

 It's a deep canyon and you can see the many years wearing on the rock.

 My girls strolling through the movie set

Of course Deez had to chime in!

Amazing place if you are ever out there and need some great photos and memories.


Monday, January 7, 2013

REMINDER......

Must remind myself to update the main photo......missing a kid in those pics!!!

Busy.......now back to it

Well - I decided to give myself a break on this little diddy I started writing up over 5 years ago!  WOW......5 years since cancer diagnosis..............and 5 years since ROHHAD diagnosis.

Goodbye 2007 and hello 2013!!!





Miss Haven is doing AMAZING!!!



Little updates:

August she had a round of IVIG and had an IGG level of a little over 100 (normal again is around 1000)

October she had a round of IVIG and had an IGG level of a little over 270

November she had one more round of IVIG and had maintained a level of 590!!!!!!

GO HAVEN!!!

So she has been given a reprieve and does not need chemo again until the end of January!  Which is only about 2 weeks left but it's been a long time.  She will be getting some new doctors and hopefully schedule a sleep study since it's been a year.  Possibly get in to see an Endocrine doctor.  I never hold my breath but I will be getting in touch with some friends soon and collecting doctor names.


Not only is Haven doing amazing with her treatments but she has been doing this amazing diet since the end of October.  Her grandma got her on it.  Since starting she has lost 11 lbs (and to be truthful she hasn't weighed in for 2 weeks).  She is very strict on herself and she knows everything about what she can and can't eat.  I love it.  We are super proud of her.  She has gone down a few sizes in clothes and definitely has more energy.

She has been faithfully attending church over the past few months.  She absolutely loves it plus she enjoys getting dressed up each Sunday.  She reads her bible daily and is just really enjoying it.

Miss Haven will be turning 9 years old in a couple of weeks....I still can't believe I have a 9 year old baby girl!!!




On to the Rohnin

Rohnin is my crazy wild child.  She is always ready to go.  She is amazing to see everything through her eyes.  She is definitely following her sister with the electronics but Miss Rohnin is the active one.  She should be in gymnastics soon.  She has already tried to skateboard her wagon through the house many times.  Reminding her grandma of her uncle out in Hawaii.  She is always climbing or doing something nutty.  A few more months and she will be turning 2 years old.  Which is also crazy.




My baby boy Weston

Oh he's spoiled.  He's almost 7 months but he holds his own against his two sisters.  Especially Rohnin.  They are already best friends but ready to fight as well.  He is already crawling and he LOVES his food.  At 6 months he was 25 lbs.  He now has 6 teeth and he's a big big boy.