Learning sustainability for our family and taking care of kids. Becoming a chicken mom in 2020! Our oldest- Haven, 17, was diagnosed with Neuroblastoma Cancer and ROHHAD Syndrome at age 3. We continue to battle these today.
Sunday, June 24, 2012
Enjoying summer break
Deez ready to go swimming at the lake!
Rohnin all about chilling!
and eating daddy's special made chocolate chip pancakes!
Haven hanging at Grandma and Grandpa's!!!! Beautiful summer day!
Ordering her food.....her first real restaurant....
This is not my B (pacifier).....
Exhausted after our first ever yard sale!
Rohnin helping to clean the patio....
Rohnin helping to destroy the patio...
My beautiful Roo.....I love when she wears this blue -- her eyes glow!
Daddy's home grown squash.....and these are the small ones!
Haven enjoying her purse and 20 bucks from Aunt Candy
Rohnin and Grandpa at the hospital to check out her new brother...
Grandma Sing spending some "stolen" time with Weston....she has to sneak in between diapers because Grandpa loves to hold him
Sisters......
What can she possibly be thinking...
Weston doing what he does best....sleep!
Does not like diaper changes.....definitely has his daddy's legs!
What's up everyone! Mom asked the doctor about me starting to wear 3T clothing and I'm only one....he said he guesses my height will be close to 6 feet....so I'll be looking down at mommy some day!
Just being a goofball.....thinking of ways to drive my sister crazy!
Got caught doing something!
Haven dressed up but not sure where we're going....as long as she has her purse and money the stores better watch out!
Rohnin sweetly asking Haven if she can have her water bottle to throw across the patio and then run away laughing.
Packed in....we couldn't get any tighter!
Haven loving her brother.....she is an amazing big sister.
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.......
Memorial Day - Gunlock State Park
We had some friends come out from California for a family weekend. That little spec at the top of the hill is Kayla.....they got to play on some of the red sand dunes at Gunlock State Park.
Just a few views from Gunlock.
Dads taking the kids down to do some climbing in the rocks
Even the dogs came. Deez is leading with Doug right behind.
Rohnin was not a fan of the red sand on her toes. She immediately ran to daddy.
Just a few views from Gunlock.
Dads taking the kids down to do some climbing in the rocks
Even the dogs came. Deez is leading with Doug right behind.
Rohnin was not a fan of the red sand on her toes. She immediately ran to daddy.
Lab work....IVIG
On May 15th we headed back in to the hospital to get Haven's lab work done to see if we would need more IVIG any time soon. Her normal IVIG schedule is every 8 weeks.
She has always done her own flushing of the port and helping with all the needles.
This time was a much better visit and Haven did much better with Jason - her nurse. We received a call from SLC the next day that Haven was amazingly up from below 100 to over 500 and has maintained it. Her next scheduled IVIG would be May 29th.
She has always done her own flushing of the port and helping with all the needles.
This time was a much better visit and Haven did much better with Jason - her nurse. We received a call from SLC the next day that Haven was amazingly up from below 100 to over 500 and has maintained it. Her next scheduled IVIG would be May 29th.
Last Day of School
The day before the last day of school was the "clean out your desk and get any thing else" from school day. Haven is so proud of herself for such an amazing year at school. Even switching schools in the middle of the year. She received her completion certificate and came home with the biggest smile.
The very last day was Hawaiian day. She was completely decked out with her skirt and flowers...not to mention all the flowers in her hair she got from her uncle Kevin who lives in Hawaii.
Congrats Haven.....it's time for 3rd grade!!
The very last day was Hawaiian day. She was completely decked out with her skirt and flowers...not to mention all the flowers in her hair she got from her uncle Kevin who lives in Hawaii.
Congrats Haven.....it's time for 3rd grade!!
Cool stuff in the desert
We love exploring the desert and some days we just drive and drive to find something cool.....Here are a few photos Haven has taken during some drives....
One of our favorite cacti plants. Beautiful pink flowers
Random goats on the dirt road in to town.
Another prickly white flower of the desert
Bones....
We're not sure what skeletal remains these are...but it was a super cool find.
Such a beautiful view and I love how the house is so hidden that you aren't missing any of the land.
My favorite plant....just recently found out it was called an Ocotillo plant. Now I know what to buy!
One of our favorite cacti plants. Beautiful pink flowers
Random goats on the dirt road in to town.
Another prickly white flower of the desert
Bones....
We're not sure what skeletal remains these are...but it was a super cool find.
Such a beautiful view and I love how the house is so hidden that you aren't missing any of the land.
My favorite plant....just recently found out it was called an Ocotillo plant. Now I know what to buy!
Subscribe to:
Posts (Atom)
ROHHAD in Ireland
I received this story in my email today. It still shocks me that my daughter has ROHHAD. It's a horrible disease that destroys a child...
-
Hi everyone. It's been a long time since I sat and wrote about our daughter's extremely rare disease diagnosis. Literally 15 years a...
-
I received this story in my email today. It still shocks me that my daughter has ROHHAD. It's a horrible disease that destroys a child...