Pages

Life with a boy and his Hypoplastic Left heart Syndrome, now Heart transplant and partial Liver from Aspergillius. Also, a girl and her Tethered Spinal Cord Syndrome, Neuro Endocrine Cell Hypoplasia, Lumbar Hemangioma, asymmetrical gluteal cleft, Pectus Carinatum and two Super Sisters and one yummy baby brother.

Tuesday, September 25, 2012

Octoberfest in September!

We headed up the mountain to Snowbird. I love that we live so close to so many neat things. Papa served and LDS mission in Germany and so we visit Octoberfest to eat some food, listen to music and dance a little. The company is always in good spirits since most of them aren't there for the food and music.. Haha in fact they are there to enjoy a good brew... The funny thing is... when they asked for volunteers for the orange/egg dance there may have been a few that were a little tipsy to begin... You had to dance and keep an egg between your heads. The egg had to stay above the chin... Grandma and Papa won the dance and free tickets to ride the tram up to the tops of the mountains. They were great.  
I was worried that this little guy would have a hard time because of the altitude but he was just a little tired...  
But then again... so was she!
 
They looked so cute!!!
 
She had fun walking circles around everyone!
 
 
The tram ride up to the top was fantastic. The colors of fall are so beautiful... We are so lucky to have all four seasons to experience in Utah!
 
"this is freaky dad"
 
Our whole gang!!! I wish I was standing by my boyfriend in this picture but I wasn't getting that close to the edge....
 
G And G and the kiddos
 
Awesome mountains. It was way hazy to get any other shots of the valley... 
On the way out...
. 
Posted by Picasa

Ry's Birthday party

Ry had her big wonderful birthday party.... Every even number birthday she has a friend party and odd number birthday she has a family party. During the planning process Ry decided on lots of themes. There was a cake party, an art party, a mystery party, and so many other things. She finally settled on a late night party. This is very cool at the magical age of eight! She is so funny. It is basically a slumber party, Homer family style. Since we don't have sleepovers/slumber parties. I know, I am a mean mom. It totally ruins Saturday for everyone involved. The kids that stay over and the the family of where they stayed... Because let's be honest, who really sleeps at a sleep over?
Ry really wanted to tell spooky stories. So I looked on line and everything was way too spooky in my opinion. I would have hated to have them go home and not be able to sleep because they got freaked out at a birthday party. Besides, the stories the girls tell don't have the detail that the stories on the computer had... So I started off with an old one I remembered that I thought would be okay because it ends kind of funny instead of scary... You know the old "Gotcha where I want ya, now I am gonna eat ya" The girls all giggled and grossed out when they found out it's a little boy with a booger! Eeeewww! Then they told stories that they either made up or had heard before. All the while Daddy is sneaking around trying to make little noises to spook them. He only succeeded in scaring them once when he jumped out from behind the shed... In panic some of the little girls ran inside....Found out it was Ry's daddy and tried to give him a good smack... We also played 'Spin the Nail Polish Bottle' and the M&M game. I made a mistake and bought mini m&ms thinking the girls had little mouths and the big ones were a choking hazard.. The mini's just melted faster then the bowls could get back around to the girls. It was still fun. I planned a craft... Pom Pom pets... A great idea until I realized I would be the master gluer with the hot glue gun. It was going way too slow for them. I still have three sitting on my counter to run to girls I had to glue up later. We made banana splits... a huge hit... and with five minutes to go, hurried and opened gifts. Parents were coming and we hadn't done the birthday song and candles.... We rushed as they girls were leaving ... I would nix the craft.... Let each girl tell a spooky story, while eating small treats... Get rid of one other game and let them just be together. I was really glad to have all 17 little people there..18 including Gator, Munchie snoozed through it all. It is always a challenge to make sure we invite everyone and not leave out any friends. Ry is squished right in the middle of two age groups. In church she is with an older set of kids that are in third grade, and in school she is the oldest in second grade because she missed the deadline by 7 days. So, we try hard to include kids from both groups... There will always be friends we leave out. Just numbers alone is a hard thing. In our neighborhood she is blessed to have around 19 little girls that fall into those two categories... That doesn't include school friends at all. Whew!   
Because I was on entertainment committee I totally did not get any pictures of the action. Just a before of the kitchen and cake... Zebra theme!!! My cake decorating skills are lacking, but taste rocks and that's all that matters.... Besides little girls don't care that it's lopsided!
I am so thankful our daughter felt spoiled and loved. She had a great time... I am also thankful to have had daddy there to help manage the troops... He did have to "hide" for a little while because that much estrogen is clearly suffocating! Gator is already planning his big party... Do you throw a friend party for a two year old??? I think no... 
Posted by Picasa

Thursday, September 20, 2012

Mouth mess, resolved!

A few months ago we decided to take Gator in to a dentist to be checked, after he complained that his back molar was bugging him. Come to find out he needed some extensive dental work. Some of his problems can be blamed on me. I let him have a sippy cup forever and I didn't nurse him... Plus I never knew how long we would have him in this life, so at a young age I let him explore with sweets.. Pretty sure his daily chocolate milk was a contributor. There was much that I had no control over... The fact that his heart meds and his oxygen for so long played a part in the break down. Then there is his genetics, plain and simple crappy teeth... Boo:( So we set up a date for his work to be done... It was tricky to nail down a time because we wanted our health insurance to help cover some and they were fighting with us just a little. When we were finally approved things went pretty fast. We had to be up and out pretty early this morning. Check in at 7:30 am.. Which means leaving an hour earlier, plus our girls were going over to be with our wonderful friends and neighbors. It is pretty disturbing we know the hospital so well and know directly where to go, how to get there and just what to do once at the destination. Gator is at ease most of this time. He played with toys that our friends the England family donated to the hospital. It is funny that something as familiar as a train table can make things smoother/easier. The Barbie house was there too, but he didn't really care too much about it. When the nurse called him back he knows to jump on the scale and then check to see how tall he is. In our room we do red finger (pulse ox), arm hugs (blood pressure), ear beeps (temp) and listen and look for lions.(listen to his heart and tummy, peak in his ears). He told the nurse she was silly for looking for a lion. Then he had to change into his hospital Pjs. He isn't a really big fan of those pjs. There was some resistance but in the end he decided he would change. Plus he got to wear the hospital socks that actually fit him, like one of the three kids those socks fit. They are cool cause they have rad grippers on the bottom. He played WII while we talked with Dr. Hannon. He is a cardio anesthesiologist who has been with Gator since he was a baby and knows him pretty well. Then Dr. Reading our pediatric dentist!!! He was a little hesitant to go into the room. I would be too! He is my brave little man! Everything went as planned except that darn tooth in the back that has bothered him from the beginning was just too far gone. It looks like it just crumbled apart. So he had three extractions.. Those two in the front along with the back guy. A spacer placed to hold open the spot in the back. Two silver caps. And five little cavities filled. He woke up in a fit bit settled back down when I got there and just explained he was tired.... The first thing he wanted me to do was take a picture of his new smile. The second thing he wanted to do was go over to Debbie Girls to show off! When we got him home all he wanted to do was nap. He wanted ramen for lunch which I made and he couldn't eat because he was so tired. Then he soaked in the bath for a little while and slept some more. I made him another bowl of ramen, this time he made it through four bites and was super full. He is planning on school tomorrow and it should be a fun filled morning because the tooth fairy is visiting our house tonight!

Wednesday, September 19, 2012

The perming of Munchie

I did it!!! I took this little girl and I permed her hair. I guess that is what you get when you have a hair dresser momma.... I have no idea how to manage her unmanageable hair. Her hair is straight, I am curly, it is thin, it is also cotton candy in the back.
 
 It took a few minutes to roll... Fastest roll ever!
Then she waited while we got the solution ready... 
We let her have a few sips of Grandma's baba
 
And she survives with hair that is way more like what I am used to.... 
She also get a few treats for being such a great little client....


Yesterday the girls got flu shots!!! Just another day at the home front!!!
Posted by Picasa

Thursday, September 13, 2012

Sidewalk=1, Gator=0

Gator was just playing hard like he normally does... Riding his scooter. I am pretty strict about helmets. If you are on wheels you must wear a helmet. Gator hit one of those rises in the sidewalk. You know, with the water and freezing and melting... He describes it as stopping suddenly and flipping over. Well when he bit the sidewalk it bit him back. He mushed in his already damaged front teeth. Because of his heart we have to call in a Rx for antibiotic... We have the most awesome pediatric dentist, Tyler Reading! He didn't even get mad that I called him on his personal cell! Gator wanted to try school the next day too. He made it through... He constantly keeps us on our toes!!! The girls haven't been exempt from stuff. Ry started having a sore throat last night . This morning I took her in to see her doc.. Munchie and Ry both have Strep. Gator probably is saved from it by the fact he was already on antibiotics. So we have three kids on meds!! Awesome!

Crazy hair day

Yeah that is pretty much everyday for her.

Uncle Chase and the Trucks

Uncle Chase invited Gator to see the trucks at his awesome job! Gator was a little star struck at first. He wanted to see everything. Good thing Chase was so cool. Gator held his hand and they talked guy talk. They walked all around the yard and looked at some of the loaders and semi's. 
Then Chase took Gator to his stall where he washes the trucks... He let Gator try the spray gun. It nearly knocked him over... As you can see from the look on his face it was so awesome! 
Sprayer + crazy hair day from school = a very happy boy! 
We also learned how to scrub the truck clean. Gator said it was a lot of work.. But he didn't want to quit. I didn't even know I had dressed Gator like Uncle Chase till we got there. Gator felt like he fit right in with the same uniform and everything.
 
He got to ride in a real live Peterbuilt, like on Cars...  
And a truck with bunks... I am pretty sure he was in heaven. He talked about how amazing it was all the way home. Thanks Uncle Chaison!!!
 
Posted by Picasa

Ry's official Birthday and the walk for Healing Hearts

Ry shared her birthday with the Heart Walk... I didn't do anything for planning or managing it so I just got to enjoy with my family... We had a pancake breakfast to start things off. The kids thought the sausages rocked.  
 
 
I actually walked the course this year. Well, walked/Waddled, it was all relative... Grandma and Papa walked it with us. Daddy and Ry ran the mile together. Gator managed half of the course.  
Then we played with our little heart friends a ton... 
Ry loved the Angel celebration. A part of the walk we look forward to because we remember all our little friends who live with Jesus. Instead of balloons, they release butterflies. Ry was able to hold one of the butterflies. 
Lovely 
Posted by Picasa

Pre birthday lunch

For Ry's birthday we decided to bring her her favorite lunch and have it with her at school. She loves Subway so we brought her a sandwich. She kept changing her mind on her school treat but finally chose suckers. It was a great day for her!!!

Gator's first day of Kindergarten

A week later Gator started Kindergarten... He was so excited. At his assessment the teacher asked him a few questions that went like this...
Teacher- We are going to talk about rhymes. What rhymes with hat? Is it cat, dog, helmet?
Gator- Helmet...
T- Ok, what rhymes with boat? Is it trailer, coat, fish?
G- Um trailer, you have to have something to pull your boat with.
T-Let's see, what rhymes with star? car, house, pig?
G- easy car
T- What rhymes with rat? cat, pig, dog
G-easy cat, right?
By this time I am laughing loudly... I know what he is doing... anything vehicle/engine/wheel related is what he wants to say... I have to excuse myself until he is finished..
T- What rhymes with sale? pail, tire, house?
G- Tire
T-Really listen what rhymes with pig? wig, truck, fish?
G- Truck
I had to explain later what he was doing... He knows rhymes just fine... He just wants to say what ever goes with his LOVE.... Then she would say lets look at letters and he would reply... "um Jordy already knows all the letters" Then she would say lets read a little and he would say..."Jordy already knows how to read". It's good he has Jordy!!!!
  
On his first day he woke up at 5 and said "is it time"???...I had to tell him nope... Poor guy had to wait forever!! 
Ry is all prepared to walk her little bro to school... Now that they are both in school, Munchie and I spend a little time together... Sometimes we just sit in quiet and snuggle... It's nice to have our time before baby sister gets here.
Posted by Picasa