DESERT DOVE TEA ROOM
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
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.
Amazing place if you are ever out there and need some great photos and memories.
Monday, January 7, 2013
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.
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.
Sunday, June 24, 2012
Enjoying summer break
THANK YOU FROM WESTON!
Thank you to everyone that sent Weston "stuff" for his birth!!! Although we did not have a baby shower I felt the love coming from across the US and S. Korea!!
Mom and Dad --- thank you for the crib, changing table, double stroller (because I have two that need strollers!!!), and the monkey vibrating chair (as seen above)!
Aunt Candy and Grandma --- Thank you for all the clothes (and there was a lot of clothing), toys, blankets, and first aid kit for babies. The girls thank you for their gifts as well!
Grandma Sing and Grandpa Beard-off --- Thank you for the handmade blankets (as seen above) and all the clothing. Thank you for making dinners for mom and dad after I was born!!!
Valarie Emery --- a friend of mine from high school that I have enjoyed reconnecting with over facebook....thank you for the HUGE box of clothing!!!
S. Korean Grandparents --- Thank you so much for the clothing and beautiful blankets!!!
My mom's friends --- thank you so much for the huge box of clothing!!!!
My boy is definitely not running around naked!!! Thank you to everyone on FB for your well wishes as we birthed this baby.
We are definitely having fun. Haven is an amazing big sister and is helping to take care of Rohnin while Weston takes most of our time. Rohnin is having fun learning about her new brother and trying not to poke him!
Mom and Dad --- thank you for the crib, changing table, double stroller (because I have two that need strollers!!!), and the monkey vibrating chair (as seen above)!
Aunt Candy and Grandma --- Thank you for all the clothes (and there was a lot of clothing), toys, blankets, and first aid kit for babies. The girls thank you for their gifts as well!
Grandma Sing and Grandpa Beard-off --- Thank you for the handmade blankets (as seen above) and all the clothing. Thank you for making dinners for mom and dad after I was born!!!
Valarie Emery --- a friend of mine from high school that I have enjoyed reconnecting with over facebook....thank you for the HUGE box of clothing!!!
S. Korean Grandparents --- Thank you so much for the clothing and beautiful blankets!!!
My mom's friends --- thank you so much for the huge box of clothing!!!!
My boy is definitely not running around naked!!! Thank you to everyone on FB for your well wishes as we birthed this baby.
We are definitely having fun. Haven is an amazing big sister and is helping to take care of Rohnin while Weston takes most of our time. Rohnin is having fun learning about her new brother and trying not to poke him!
Saturday, June 23, 2012
Tuesday, June 5, 2012
Pioneer trek weekend
While we did not join as we are not LDS, we do enjoy learning about it. We saw the "kids" (I put it in quotes because although they are kids some are teens) walking down the street from the church and I immediately had to contact my sister-n-law back in NY to find out what was going on. It was the coolest thing ever.
We had to stop and wave to all of them. Such an amazing thing they do to help the kids to understand the history. We really do love being out here in our mountain area. :)
We had to stop and wave to all of them. Such an amazing thing they do to help the kids to understand the history. We really do love being out here in our mountain area. :)
Saturday, June 2, 2012
Chemo day and Baby Boy day
Haven and I actually had doctor appointments on the same day at the same time. So on the 29th we all spent a little time at hospitals and doctors offices.
Haven had to do her chemo - which will keep her up to date for the summer. She did amazing this time. I left her with dad and Rohnin while I went to my appointment. She does not have to see another doctor until the end of July when she will head back to SLC Primary Childrens to get all her lab work done, not just IGG levels.
Haven had to do her chemo - which will keep her up to date for the summer. She did amazing this time. I left her with dad and Rohnin while I went to my appointment. She does not have to see another doctor until the end of July when she will head back to SLC Primary Childrens to get all her lab work done, not just IGG levels.
This is the new port access needle they use here. It has taken Haven a few times to get used to it but this time was a much better access and no blood.
As for the baby boy....I have been suffering severe pregnancy induced carpel tunnel syndrome. Randomly at any time my arms and hands will begin to burn and go numb. I can't move them and I can't relieve the pain. It doesn't matter what position I'm in or what I'm doing. So I went in to see the doctor and after 2 weeks of about 2 hours of sleep each night I was not in a mood to not get something done about it. I am now wearing splints on each arm and he gave me some amazing sleeping pills. Due to the severity of the carpel tunnel he will also be inducing me early so I will stop swelling so bad. We will find out the exact date and time on Monday morning. I really wanted June 21 since it is my grandpa's bday but it doesn't seem as though we can make it that long. But we'll see....we are definitely excited to meet our new little baby boy.
NAME NOT CHOSEN YET! We get this all the time...even if we have a name you won't find out until we deliver.......
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