Congenital Heart Defects Awareness Week

This year I posted some thoughts on facebook to spread awareness for CHD Awareness Week (FEb.7-14). Day 1 of CHD awareness week (Feb.7-14). 1 in 100 babies are born with some type of heart condition. Spreading awareness is the first step to increasing support and blessing the lives of thousands of kids and adults who live with a CHD....like my Tyler.

Day 2: Grateful for the surgeons, doctors, nurses, researchers, social workers, child life specialists, nutritionists and therapists. They helped beat the odds more than once for Tyler. They dedicate their lives to blessing heart kids and their families. They see loss, yet continue to care. They untangle lines, administer meds, explain things 100 times if needed, find better methods, give hope, comfort and support. Words can't express our gratitude.

Day 3: While Tyler is doing well, their isn't a day that goes by that we don't think about his heart friends who have lost their fight with HLHS. Their lives were too short. They will not be forgotten. Kylie earned her wings this week as she awaited a new heart. Love and prayers to her family during this difficult time! Help spread awareness!
Nearly 2x as many children die from CHD's each year than from all forms of childhood cancer combined. Spread Awareness!
Day 4: I was told to terminate my pregnancy several times at 26/27 weeks. When I said no, I was told that I didn't understand the severity and that most in my situation terminate. I want to spread awareness that a CHD doesn't mean your life will not be whole. In many ways my son lives a more full life because of his heart. Everyday is seen as a gift. I am thankful for everyone I have crossed paths with, both angels and survivors, who have taught me the real meaning of living a full life.

When you are told your baby has a heart defect you are surrounded with questions, uncertainty and fear of the unknown. In time, the fear and lost dreams are replaced with peace and new dreams. There isn't a day that goes by that I am not grateful for Tyler and his special heart. It truly has taught me so many wonderful life lessons, blessed my lives with heart kids and moms and made me grateful for all the medical professionals that help improve the lives of others. We are blessed!

Scott's birthday party

 Scott finally got the birthday party he has been talking about for two years.  Last year, Tyler was in the hospital so Scott didn't get any party.  This year, he invited over a bunch of kids for pizza, cake, and a movie.

Another one of Pop's masterpieces.

 I'm pretty stoked about this lot of 12 month clothes we got from craigslist.

 

 Movie night was pretty loud, even though they sat pretty quietly to watch Hotel Transylvania. The TV has a built-in DVD player and the audio output doesn't have a strong signal, so they had the PIONEER at half power.   He got a bunch of gifts.  Thanks, everyone, for making Scott's 7th birthday a success!

Scott's 7th birthday

Scott turned 7 today.  We celebrated with doughnuts and orange julius for breakfast and let him try his first gift:  hair gel.  He likes doing mohawks.  Later that day, he got a skateboard, helmet, a game, hot wheels car, and a trip to Chuck E. Cheese's with Grandma and Pop.  When I was done with work, we went to Buffalo Chicken Wings on Lone Tree for din-din.  

The food was good even though it took way too long for it to be delivered.  Scott was happy that they brought him some chocolate cake and ice cream.  

 One of my little didges has a broken lens mechanism, so this top picture is blurry.  Sad, but a bad picture is better than no picture.

 We were excited about this craigslist bin of 12 month clothes.  $25 for 48 pieces of clothing.  Yeah, craigslist!

I have ordered Scott a gift that hasn't arrived yet, but I'm pretty sure he'll like it.  Until then, this short post will have to do.

Heidi's bangs

Heidi got some clothes and shoes for Christmas.  I was working in the garage when she showed me her new acquisitions.  Then, out of the blue, she said, "I'm ready to cut my bangs."

Good, because I've been trying to get her into bangs for years.  I studied the google images for various styles and this is the result.  Scott goes, "Mommy, you look younger now."

"Oh yeah?  I don't look like an old woman?"

"Not anymore."

I am pleased with the result.  She has been with a center part for so many years that the bangs naturally separated like this, but in a few days we'll get them straight down.  This morning, we decided to cut three inches more off the back and make the anterior taper more aggressive, so we'll have to photograph that but I had to run off to work and she is visiting Grandma today.

Some people are shocked that Heidi lets me cut her hair.  Well, anyone can cut hair, with the abundance of how-to videos on youtube and readily accessible household items.

"But I can't believe she lets you do it!"  Is a common response.   Heidi doesn't care what other people think of her.

Even if this endeavor had ended in catastrophe, we could have gone to a real stylist to have her/him make it right.

And the difference between a bad haircut and a good one is just a few days--weeks at the most.

December

Santa Claus visited the Brentwood 3rd ward's Christmas party.  This might be the first time all the kids are in the picture and there are no tears.  

This list must be from kids club.  Where does he hear about these things?  Heidi and I are only responsible for the iphone.  Well, good luck, Tyler!  But I bet Santa is feeling the recession, too.

Scott got a certificate from school to Rubio's.  He wanted to go on the VFR, so last night we went, on the coldest night of the season.  I ordered a mahi-mahi taco and it was Taco Tuesday, so we each got a fish taco.  I was pleasantly surprised.  Fish tacos are kinda the niche for Rubio's.

Good old Taco Tuesday.  Dan-o, Hobble, Rummage and I used to go to Taco Time every Tuesday ever since we could drive.  Sometimes Tadeo, Neal, Benj and Justin came and it was something we looked forward to.    We'd say, "Only six more Taco Tuesdays until graduation."

In college, we had pizza night.  Before Little Caesars offered the $6 pizza everyday, it was $5 on Mondays:  Monday Night Madness.  Well, before everyone and their dog had cell phones, we coordinated who was in for pizza night and then one or two of us would pick up the appropriate amount of pizzas.  Usually, three fed six of us.  I took white lightning and Dan-o and I would bike together for many Pizza Nights.  Once, there was a pizza under the heat lamps.  I asked about it and the employee--who, after months of seeing us, never learned our names--said, "Oh, you don't want that.  It's old."

I said, "I'll give you two bucks for it."

"Three."

"Fine, keep it,"

Exasperated, she said, "OKAY!  Two dollars!"

Yeah, pizza night.  My record for eating pizza was five meals in a row.  There was one semester where I had doughnuts for dinner every night.  Man, those were the days.

Hospital Panel

I haven't done a teaching panel in a long time mainly because it is harder to get to UCSF with the kids in school. The course was for NICU caretakers.
I always learn so much from hearing other parents experiences and journeys. Each individual has such unique needs. A great nurse or doctor will take time to ask and find out those needs, listen and take time to respond. One parent might relate their pregnancy to an unborn baby while another might never want to face that reality.
Part of the day included a class on spiritual care. We were asked how our religions or faith played or didn't play a role in our journey. It was humbling to reflect on one of my greatest blessings. I am blessed with a knowledge of eternal life and a community that wherever I live provides any type of support our family might need. I simply can't fathom loosing a child without a faith.
A reality of these panels is that so often the families that speak have the coping mechanisms to deal with their very difficult journey. We don't represent, nor should ones journey ever represent another's experience.
If just one person came away realizing that, than I think it was worth it.

November

What happened in November???

Lots to catch up on....Here are some things I must blog about this week...

1. Was super Tired from Thyroid and now feeling MUCH better.
2. Krey awards assembly=1/3 done with the school year.  That is CRAZY.  The boys are doing amazing. So grateful!
3.  My mom was finally doing better from her radiation.  Starting to gain her balance and walk a little and then broke her hip on Thanksgiving morning.  No bueno!  Grateful for my wonderful family and her wonderful friends.  She is loved by so many people.  It is so hard to see her go through so much.
4. Trying to sell our condo and it keeps getting postponed.  Learning patience.
5. Danny's hip surgery went alright.  Nerve pain is doing better but his back still needs help.
6. Feeling very blessed for life.  It is a wonderful season of the year and I feel like our cup is overflowing with blessings.  Grateful!

I actually have a lot of pictures I would love to put on the blog but we have exceeded our limit so we need to decide to buy more space or start a new domain.  Any suggestions?