Family Life

Our Disney Cruise

2011-02-13T08:48:00.000-08:00

We just returned from our dream vacation on a cruise to The Bahamas on the Disney Dream. The ship was absolutely amazing! Sydney was in total heaven. Payten had fun too as long as Mom and Dad were right there with here. I have way too many pictures to post and not even sure where to begin to write about all the fun that we had.

Fun in a Box

2011-02-13T08:37:00.001-08:00

Forget about presents just give my kids a large box and they'll be entertained for hours.

I love these two!

Drive-In Movie

2011-02-13T08:33:00.001-08:00

Daytime Adventure

2011-02-13T08:24:00.000-08:00

One of the best things about living in Southern Utah is the mild winters. These pictures were taken over Christmas Break. We had beautiful weather and it was just warm enough for us to take a little picnic and a hike at one of Sydney's favorite spots.

Christmas

2011-02-12T21:47:00.000-08:00

I know I'm two months late but here it is finally- Our Christmas 2010
It's also a little peak of my new hobby- digital scrapbooking. I'm just a beginner but so far I am loving it!

Dicken's Festival

2010-12-19T08:09:00.000-08:00

One of our favorite Christmas traditions is to go to the Dicken's Festival every year for a picture with the real Santa. The original plan was just to have Sydney & Payten in the picture. But Payten of course wanted nothing to do with sitting on the old guy's lap. I didn't care if she was crying in the picture- I just wanted her in the picture! We couldn't even get a shot of her screaming. She was too fast! She bolted the second I let go of her every time.

The result was to have mom holding her in the picture and I thought if I have to be in the picture then we better put John in the picture too. Can you tell how thrilled he was about that?

Merry Christmas Everyone!

Thanksgiving

2010-12-19T07:59:00.001-08:00

Here is Sydney's version of our Thanksgiving:

"I had a great! Thanksgiving at my house.

My favroit pie is benna.

My Grandma and my cocins and my aunt was there.

We had a cucin (cousin) week.

On Saturday I went to my ether cucins house.

We played in the snow. It was relly fun.

And we went to toaghcon (Tuacahn) on Saturday.

October 2010

2010-12-17T23:27:00.000-08:00

October is always a busy month for us but always lots of fun too. I feel like we try to jam as much fun as we can into one month. This year was no different and here are our pictures to prove it!

1- Sydney danced at The Huntsman World Senior Games. They danced with hundreds of other dancers from all over the world. The event was supposed to be held outdoors but got moved indoors at the last minute due to inclement weather. Phew! Can you imagine all of these little girls out there in the pouring rain?!

2- We made a trip up to Grandma's house.

We got to play with my cute little nieces.

And Sydney got to do some shoppin'

3- We went to the Ward Fall Festival- planned by me :) We had a soup and salad potluck and games and activities for the kids. It was lots of fun but lots work! But I have to say I have the best ward ever. We always have such a great turn-out and lots of support & help from the members.

4- Halloween! Everyone who knows me knows that I love Halloween!
Sydney was a rockin',cute, little disco girl

Payten was Minnie Mouse

I was a witch & John was a "Moon" Man

Disneyland- September 2010

2010-12-14T04:42:00.000-08:00

We took a fun family vacation in September to the Happiest Place on Earth. It was a perfect time to go. The weather was warm, the lines were short and a great time was had by all. We took Aunt Lisa with us and met up with my Mom and Morgan there.

We spent three days visiting the Disney parks. Sydney was finally tall enough to go on most of the rides. She was really brave and went on Tower of Terror twice even though she hated it the first time. She loved the Big Thunder Mountain Railroad the most. She rode that ride at least a gazillion times. Payten wasn't too sure about most of the rides and she definitely preferred the outdoor rides compared to the indoor rides (they were a little too dark for her.) Payten was mostly content to just sit in her stroller and chill.

Here are a few more of my favorite pictures. (Sorry for the picture overload!)

One of the best parts of being in Disneyland was watching Sydney act like a kid again. She acts so grown up all of the time. Before we left, I asked her if she wanted to see all of the princesses again. (The last time we went to Disneyland, it was all about the princesses.) Sydney informed me that she is "way past" that now and didn't care if we got to see princesses or not. We still ended up eating lunch at Ariel's Grotto with all of the princesses. The food was spectacular and Sydney sat there the whole time like this:

She was still completely amazed by all of those princesses! :)

Payten didn't care about the princesses but loved the food! After every bite she would say "Ummy, Ummy, mmmm!"

This is one of my favorite pictures ever! Pay Pay totally adores her daddy.

On our last day we drove out to Laguna Beach. It was a gorgeous day. Payten hated the sand and Syd was disappointed that she couldn't find any seashells but we had a fun time. We ate on Johnny Rockets for lunch and I swear that is the best hamburger I have ever had. Yum! I was also able to get some of the best pictures ever there! ;)

August- Catch up!!!

2010-12-13T15:31:00.000-08:00

It's a bad sign when you can't even remember your blog password! I decided I can not let the year end and not be caught up on my blog. I will do the best I can and sum it up with pictures.

Sydney started the 1st grade in August. She loves it! She is a little smarty pants and is an awesome reader. She loves recess and thinks it's pretty cool to pack a lunch.

Payten is so funny. This was her favorite summer outfit: Her swimsuit and her beloved boots. She wants to wear these boots with everything everyday. So we usually let her . . .

She also became a fan of having her picture taken. I have so many random shots of her "cheesing" it. She has always had her funny little quirks that she would do when she's shy. First it was poking her eye, then it was covering both eyes and now it is showing her belly. I think she wants you to look at her belly and not at her face. Once again, she is so painfully shy but such a cute little stinker bug.

Sydney worked hard and saved her money all summer long to buy an ipod touch. She had a lemonade stand and bake sale in August to earn a little more. It happened to be the windiest day of the year but she came out successful and was finally able to buy her ipod.

This is Payten's new best friend Macee. She comes over once a week to play with Payten. It has been the greatest thing ever. Payten loves her sooo much and talks about her nonstop. They are the cutest little buddies. It makes me so happy that Payten has a friend.

I saved the best picture for last. For awhile Payten wanted to always sleep in "Sissy's" bed. This is how I found them one morning: Syd had her leg comletely over Payten's head! This picture makes me giggle everytime I see it! :)

Breakfast with Friends

2010-08-15T14:34:00.000-07:00

During the summer Sydney thought it would be fun to invite some of her friends over for breakfast. Both Payten and Sydney adore these two girls.

BINGO!

2010-08-15T14:10:00.000-07:00

A couple weeks ago John went to Vegas to ref a basketball tournament. Lisa watched the kids one night for us so I could go down there and we could spend some time together minus the children. We get to go to Vegas often but this time John and I had so much fun doing things that we don't normally do. We went to the seafood buffet where I sampled sushi and actually liked it, then we wandered around for awhile and ended up playing Bingo. Neither one of us won although we were both just dying to holler BINGO!

We played some video blackjack and ended the night dancing to a fun 70's disco band that was playing at our hotel. The next morning we lounged by the pool, read our books and didn't have to worry about any children drowning. It was splendid!

Silly Sydney

2010-08-15T13:54:00.000-07:00

Sydney just being silly . . .

Sydney now loves to play on the computer. There are lots of games she likes to play and cute little websites she likes to visit. While I work on our home computer she will sit next to me and play on the laptop.

Of course Payten wants to do everything that her big sister is doing. Sometimes Sydney will let her join in.

She looked too cute in her hat and her pigtails. She didn't want her picture taken but Mom just had to have one!

She found a kit at the craft store to make the glasses. She told us she making her own 3-D glasses and she actually wore them while watching an entire episode of Hannah Montana.

And I had to throw a funny picture of Payten too. She is learning how to remove her clothes and whenever possible she likes to run around without her shirt on. Oh, and she likes to wear big sunglasses and call them "eyes."

Payten's Eye Patch

2010-08-15T13:28:00.000-07:00

Payten's Eye Patch- Payten's left eye is getting lazy again and she is not seeing too well out of either so her eye doctor recommended that we patch her "good" eye to make the other get stronger. I was very doubtful that this would work for Payten. She is 2 years old after all and I couldn't imagine what it be like trying to keep these things on her eye. We had to do the patches before when she was just 6 months and it was very difficult. But this time she has surprisingly tolerated it very well. She wears it with no problems at all for a couple hours every morning and within the first week we could already see improvements. Of course her baby doll wears a patch too.

Uncle Cary

2010-08-15T13:17:00.000-07:00

These pictures were taken on the 4th of July when John's brother, Uncle Cary, was visiting. Cary was easily smitten by Payten and he was loving that she finally warmed up to him. These pictures were too cute I just had to post.

My Garden

2010-07-20T21:06:00.001-07:00

I have to brag just a wee little bit and show you how proud I am of my garden. I truly have a "black thumb" and manage to kill even fake plants ;) Somehow my garden I planted this spring is actually growing! This is a picture of my very first harvest a couple of weeks ago. So far that is the only zucchini I have gotten but it was huge! We have lots of tomatoes too but I eat them just as fast as I pick them. I love garden tomatoes. We have cucumbers and squash too. Sadly, the string beans didn't make it. I have to say this is a learning process. This is only our second garden. Last year it didn't go so well. This year we decided to relocate the garden to a spot that gets more shade from the evening sun and it seems to be helping. Neither John or I know exactly what we're doing but with the help of YouTube tutorials (you seriously, can learn just about anything on YouTube) and advise from wise neighbors, we are learning!

Groundbreaking for the new Learning Center

2010-07-08T20:16:00.000-07:00

I've mentioned before how fortunate I feel to have the Learning Center for Families serving the special needs kids in our community. Having them work with Payten has made all the difference in her developmental progress. The current building that the Learning Center is located at is very small for the amount of children that they serve. For the last 15 years they have been working towards a new building and the time is finally here! Last week Payten and Sydney were able to participate in the groundbreaking ceremony for the new building that will house the Learning Center. It was so cute! They were given their own buckets and mini shovels and they really did break ground.

Of course it was a super hot day so what better way to cool of than with an ice cream cone!

One just won't do so I better have yours too mom!

I have to admit that during the ceremony I got a little teary eyed. Next month will be Payten's two year anniversary of being enrolled in their program. I think back to that time when Payten had her first home visit with our new therapists. I was just a scared mom who had just received devastating news about my newborn baby being diagnosed with a disease full of "what-ifs?" Over the last two years they have filled me with hope and brought me lots of encouragement. I am so thankful for Miss Loralee, Miss Ashley, Miss Lisa, Mr. Trevor and all of Payten's other therapists who have come to our home to work with us. They have truly made a difference in Payten's life and they are each so special to us.

Grandpa Jack

2010-07-06T05:40:00.000-07:00

John “Jack” Parker Hammond, 69, passed away peacefully at his home in St. George, UT on June 22, 2010 with his family close by.
Jack was born on December 31, 1940 in Pioche, NV to John Edgar and Muriel Hammond. His family later moved to Las Vegas, NV where he attended John S. Park and Las Vegas High School. He was a member of the Church of Jesus Christ of Latter Day Saints.
Jack married Judith Naseef in 1959. They had three children. They were later divorced. Jack married Rowena Mitchell in 1973. Along with her two daughters, together they had two sons. They were later divorced.
The family lived in Las Vegas where Jack worked at Nevada Ready Mix and Nevada Rock & Sand for many years. Jack, a retired Teamster, then moved to Summit, UT and worked at Quality Concrete in Cedar City, UT. He was happiest living in Summit at the Three Chimney Ranch.
He loved yard work, finding places to pour red concrete, reading daily newspapers and coming home with unexpected “treasures.” He loved visiting his family and friends. He was a wonderful father and will be dearly missed.
He is survived by his brother, Bill (Diane) of Las Vegas, NV, his 7 children: Cary of Santa Rosa, CA, Kevin (Shelly) of West Valley City, UT, Lisa of St. George, UT and Erin Hammond of Henderson, NV, Jill Alexander of Washington, UT, John (Ammie) of St. George, Brian (Kristie) Hammond of Paragonah, UT, 18 grandchildren and 17 great-grandchildren. He is preceded in death by his parents.

Two weeks ago John's dad passed away. John and his dad were very very close. Jack had struggled with his health for the last 5 years and the old man sure put up a good fight! Him passing away was bittersweet for us. We are relieved to know that he is in a better place where he no longer has to suffer but oh how we miss him! Dad became such a part of John's daily routine. John used to stop by his house every morning on his way to work to take his dad some hot chocolate then would come back and visit again at lunch time and again on his way home from work. There were endless phone calls from Dad sometimes it was only to get you to come over to his house to change the t.v. channel back to channel 5 for him.

John's sister, Lisa moved in with Dad 4 years ago to help take care of him. Lisa is amazing for doing this. She did such a wonderful job caring for him. Thanks to Lisa Dad was able to remain at his home for the last 4 years. Thank you, Lisa! We love you and appreciate you more than you know!

On Father's Day we knew that our time left with Dad would be short. We spent that evening expressing our love and saying our goodbyes to him. The next night he died peacefully in his sleep. No matter how much time you have to prepare for one's death it is still hard. We are so thankful for the last 5 years that we did have Dad.
We were able to cherish every moment.

I wish my girls would have had the opportunity to know the real Grandpa Jack and not the sick Grandpa. Even still he loved them very much. Payten won't remember him but I'm sure Sydney will. Grandpa used to dance with Sydney and Aunt Lisa and Sydney would just giggle and think he was so hilarious. I know she loved him.

For the funeral I put together a slide show of Jack. These were just a few of my favorite pictures of John and Jack. By looking at these pictures you can see how much of a bond these two had together.

I love this one because even as a teenager John was still holding his daddy's hand
The funeral services turned out very nice. It was a beautiful day. It was so nice hear all of the good memories we all have about Jack. He had the biggest heart and truly loved his kids. A friend of ours who attended the funeral said that Jack sounded like the kind of guy she would have liked to have known better. He really was a good guy. Thank you to all of our friends and family who have offered your support and expressed your kind words of sympathy.

We love and miss you Daddy!

"Shuffle along, Old Timer. Shuffle Along."

Trip to Grandma's

2010-07-05T22:23:00.000-07:00

Here are some pictures from our trip to Grandma's house. While we were there my mom wanted to take all of her grandkids to the Children's museum at the Discovery Gateway. Both of my kids love this place. Payten would have been content playing with all of the balls located right by the entrance. Sydney loved everything but had the most fun playing in the pretend supermarket. She also loved playing in the real helicopter.

Eagle Valley

2010-07-05T22:15:00.000-07:00

For Father's Day weekend we went camping in Eagle Valley, NV. John's family has a lot of ancestors that lived there and this is where John's dad spent a lot time when he was a kid. A few months ago John took his dad out there for a little road trip. John noticed that cemetary where many of his ancestors are buried was in poor condition. So John made arrangements to go back and make a weekend out of it. John's brother, Brian and his family camped with us and we had a good time. Sydney and her cousin Parker thought it was pretty cool to visit the cemetary where so many people had the same last name as them. It was a neat experience to visit that old place and to be able to do some service while we were there.

Sydney turned 6!

2010-07-05T21:30:00.000-07:00

Sydney turned 6! However she might as well be twelve. I already feel like those dreaded teenage years are creeping up on me sooner than I'd like. My darling girl is growing up so quickly on me. She loves reading, playing house and anything that involves being with her friends. Her favorite shows are ICarly, Good Luck Charlie, Hannah Montana and Wizards of Waverly Place. She is a fantastic big sister. Sydney calls Payten "Nucklehead" or "Chunks" but Payten doesn't seem to mind as long as she gets to play in Sydney's room with her. Sydney has a fantastic memory. This kid remembers EVERYTHING! It is amazing and sometimes scary! She is so cautious and even starts to panic when her daredevil sister starts to do something crazy. And my favorite thing about Sydney is that she still loves to play with mommy's hair! This is a habit she developed when she was a baby and something I hope she'll do at least until she's 20! We love you, Syd!

For Sydney's party we went to Paul Mitchell hair school where each of the girls got their nails, toes and hair done. Being the little Diva that she is, Sydney totally loved it. At the end they had the girls walk down the runway for a mini fashion show. They were shy at first but then they started getting into it and it was so cute. Who knew these little girls had so much spunk!

The day after her birthday party Sydney also lost her very first tooth! For some reason she thought the tooth fairy was going to leave her with a whopping $50. Needless to say, this didn't happen and Sydney was just as excited to find even just $1 under her pillow the next morning. Did I mention that my six year old is saving her money for an Ipod Touch? Saving is a tough thing for her but she's learning. She might actually have enough saved before she really does turn 12!

Happy Birthday John!

2010-06-07T13:21:00.001-07:00

Today is John's Birthday. He is getting super old so I won't mention his exact age. But let's just say he's getting a lot closer to 40 than I am and he's getting the gray hair to prove it! (Just kidding, babe! You know I think your hair is sexy!) This picture is one of my favorites of John. He was approx. 3 or 4 in this picture. He is holding his favortie Cookie Monster "blankey" and his bb gun. Isn't it just adorable?

In honor of the Birthday boy I thought we could get to know him a little bit better. Here are is answers to silly random questions.

1. What was your high school mascot? Rams

2. What was your favorite music in Junior High? Country

3. Name one thing many people don't know about you? I Am a cryer at movies, stories, etc.

4. Where would your dream vacation be to? Cruise to Panama Canal

5. Do you have any phobias? Claustrophobic. HUGE. Heights, if I have to look down.

6. What was your favorite childhood toy? Does Cookie Monster count?

7. What TV shows did you grow up watching? Matlock, Scooby Doo, A-Team, Macgyver.

8. Song or Artists you can't get enough of lately? Dig Brad Paisleys stuff.

9. Favorite perfume/cologne? Hugo Boss

10. Do you hang your toilet paper to unroll over or under? OVER!!! OVERRRRRRRRRRRR!

11. What is the best concert you have attended? The Fireman or Chicago!

12. Favorite TV show right now? Greys Anatomy

13. Can you drive a stick shift? Does a bear s**t? (yes, this really was his answer)

14. Favorite movie right now? Shooter!

15. What is your favorite cereal? Frosted Flakes

16. Favorite book right now? Teddy Kennedy

17. What is generally the first thing you notice about people? Smile/Teeth

18. What are you listening to right now as you type this? Fan Blowing!

19. What word describes you best? Odd

20. What would your stripper name be? (the name of the first childhood pet you can remember and the street name you grew up on) Winston Roundup! Love that one.

What these questions don't tell you about John is that he is an such an awesome guy. He is a great husband and friend and he really is the greatest Dad. Both his girls dote on him and he would do anything for them. He is a great son. His Dad has really poor health and for the past 5 years John has been there to care for him. John is charming, funny and smart and lots of fun to be around. Happy Birthday Boogs!

Wii did it!

2010-05-21T01:12:00.000-07:00

Wii dit it! I gave in to Sydney's begging and pleading. I was so strongly against ever owning any type of game system and then I caved! We broke down and bought a Wii. So what made me cave? Well there were lots of selling points for us. Sydney wanted it for the obvious reasons, John wanted it so he could play Big Game Hunter, and for me it was fact that you can now instantly download Netflix right to your Wii. (I tell ya, I am in love with Netflix!) I'm looking forward to trying the Wii Fit but that might have to wait until a Birthday or Christmas rolls around!

Our favorite game is Just Dance. It is so much fun & a good workout. John & his nephew Travis are going to kill me for posting this but I just had to share. They have no idea that I recorded this. They thought I was just trying to get a picture. I'm not sure what's funnier- John's singing or his dancing? It is just hilarious!

Payten's Peeps

2010-05-11T06:48:00.000-07:00

Here are pictures from the TSC walk on last Saturday. Payten had lots of "peeps" come out and walk with her around Liberty Park. We had lots of fun. The event was a huge success. The Intermountain chapter of the TS Alliance was able to raise just over $16,000 at this event!

I am so glad we were able to attend this event. I met some fantastic mothers who have children with TSC. It was so great to hear their stories, see their children and be able to relate to them. They are the few people who really get what it's like. It was also really neat to see volunteers there who have never heard of Tuberous Sclerosis before but they just wanted to come help out with our event.

Thank you so much friends and family for your donations and for your support. On Saturday I talked with a mom who has a son with TSC. Her son is 14 and is now taking a medicine that is actually shrinking his tumors! Tuberous Sclerosis has come such a long way in the last 10 years. I can't help but to think where we will be in the next 10 years if we keep fighting for this cause.

Warm Fuzzies

2010-05-05T21:02:00.001-07:00

I have warm fuzzies all over! I have been so touched by those who have gone to Payten's webpage and donated so generously. Every single donation really means so much to me. I am so amazed by the love and support that has been given to us and to Payten. Even from people who don't know us, or know just how special Payten really is. Words can not express just how thankful I am. The walk is 3 days away so if you haven't had the chance to sign up or to donate there is still time!

I have to say, this walk-a-thon is not just about raising money. For me, it's more about raising awareness. I remember the day that Payten was given this diagnosis of Tuberous Sclerosis. The day before that we were told she had cancer. So when we were told that all of these tumors were caused by Tuberous Sclerosis of course we were relieved that it wasn't cancer but then the fear of the unknown quickly sank in. I had never heard of Tuberous Sclerosis and the more I read about it the worse it became to sound. Then more tumors were found all over Payten's body. Suddenly we went from worrying just about her eyes to worrying about her brain and her heart too. Part of me felt guilty because at this point I felt that cancer would have been better than this. Everyone has heard of cancer. There is billions of dollars spent on research. There is a treatment. I felt like Payten had more of a fighting chance.

Tuberous Sclerosis is a lonely disease. I wish more people knew about it. I wish there were more treatments so when that first diagnosis comes you feel like you have a fighting chance instead of feeling so helpless.

I realized that Payten does have a fighting chance but it is up to me to be her advocate. Yes, Tuberous Sclerosis is something we can live with. But if there is a way for Payten to have things be just a little bit easier, you bet I am going to help her find it.

Thank you, Thank you, Thank you everyone for supporting us on our journey!

TSC Walk-a-thon

2010-05-02T04:53:00.000-07:00

Okay guys it's that time! To all our friends and family (and even you blog stalkers) We are asking for your support!

This coming Saturday, May 8th we will be at the Tuberous Sclerosis Walk-A-Thon in Salt Lake City.We would LOVE for you to come out and support our cause and join our team, "Payten's Peeps."

As you may know our sweet little Payten has been diagnosed with the disease Tuberous Sclerosis. What makes this cuase so important is that it is the only organization that is dedicated to finding cures and treatments for TSC which also leads to cures for autism, epilepsy and cancer.

So here is the low down on all the details:

What: A 2 mile walk to benefit the Tuberous Sclerosis Alliance

When: Saturday, May 8, 2010
10 am- Registration begins
11 am- Walk begins

Where: Liberty Park
600 East 1000 South
Salt Lake City, UT

How much: There is no minimum requirement to participate. Any size donation is welcome.

To register for the event, to just donate or read more about Payten clickety click
HERE
*We will be wearing t-shirts that have our team name: Payten's Peeps so let me know your T-Shirt size if you plan on walking.

Weekend Getaway

2010-04-19T21:25:00.000-07:00

Besides being on the High School Cheer Squad, my little sister Morgan also is on a competitive cheer team and was able to compete at the U.S. Nationals Cheer Competition in Las Vegas last weekend. So we loaded our luggage one more time to join my family for a quick little mini vacation. We had so much fun!

We stayed here:

Tahiti Village (sooooo highly recommended!)

*We lounged here:

and here:

*We got to visit John's sister, Erin, who hooked up with some sweet new furniture. Amazingly, John was able to pack it all in the back of our car and still have room for our luggage. That guy has some mad skillz!

*Had Sydney's cousin Kelly sleepover with us at our hotel. It's always good to have a little boy around so John and I know what we're missing out on by only having two girls. Payten loved Kelly. It was so funny to watch her try to copy Kelly doing jumping jacks.

*We also got to go to Kelly's soccer game. He is really good!

*Good shopping.

*Good food. Of course there was a trip to Macayo's Anyone who knows John knows that we never drive to Vegas without stopping at Macayo's TWICE. Once for dinner and again another time to purchase chips and smooth salsa for the ride home.

*And cute cheerleaders!

My First Blog Award!

2010-04-19T20:54:00.000-07:00

My dear, dear friend Lacie has given my very first blog award! Although I feel somewhat undeserving of such an honor, given my past history of complete blog neglect, I will accept! Lacie, I {heart} you!

I pass this award on to Julie, Mrs. M, and Tonya)

This award asks for………

Ten things that make me happy:

1. Watching my two girls play together in the bathtub

2. Watching our favorite tv shows with my husband (Greys Anatomy, Amazing Race, Desperate Housewives, & Brothers & Sisters)

3. Hugs & kisses

4. Game Night

5. Comments on my posts

6. Good food that I didn't have to cook

7. Receiving a new Netflix

8. Listening to Sydney read

9. Watching Payten dance

10. Having a husband who folds the laundry & does the dishes

Run 4 Kids

2010-04-15T05:14:00.000-07:00

Last weekend we participated in the annual Run 4 Kids 5k Race at Coral Canyon. 100% of the proceeds of this race went to the The Learning Center, a charity that is near and dear to our hearts. Payten is part of the TLC family and having this local organization be available to us has been a huge blessing. Payten has benefited so much from having their therapists work with her.

So last Saturday we laced up our sneakers and headed out for the race. It first started with the 1K race for kids which we ran with Sydney. It was great to have a way for Sydney to be involved. Then luckily John's sister lived nearby and was able to watch Syd while John and I participated in the 5k.

This was John's first race that he has ever competed in and the poor guy threw his back out half way into the race! Amazingly, he still ran the race and finished in a decent time. He can't stand up straight and can barely walk now but he still finished! John has been hobbling around like an old man ever since.

I pushed Payten in the stroller who was happily entertained the whole time with a laffy taffy.

Let me just say that we are NOT runners. Hate Running. But this event was really fun! I think we will do more 5k's in the future. Once John recovers that is!

L-O-V-E

2010-04-08T01:39:00.000-07:00

Sydney has been on a spelling kick lately. Almost a hundred times a day she spells to me "L-O-V-E Y-O-U, Mom." It is so sweet!

I volunteer in Sydney's school class once a week. I love that before I leave every week she wants to give me the biggest hug in front of her whole class. Someday she'll be embarrassed by her old mom but for now I'm soaking it up!

Syd the Science Kid

2010-03-30T22:32:00.000-07:00

Sydney participated in the school science fair yesterday and won 3rd place in the Kindergarten division. She was thrilled to win a medal and went around everywhere today telling people that she is "An Award Winner!" She even wore her medal to school again today. I love that she is so excited and proud of her big accomplishment. We are super proud of her too!

Her project was to see if you could blow different shape bubble using different shaped bubble blowers that she made out of pipe cleaners. For example, a heart shape blower would make a heart shape bubble. It turns out that all bubbles are round but we sure had fun trying.

Spring Break

2010-03-28T21:06:00.000-07:00

Our good friends, Chad & Mindy came down for a visit over our Spring Break. We had such a fun time with them. Sydney and Lillie are each others BFF. Syd loves playing with Max too and all the kids had a blast. We love having friends come visit.

While they were here we took the kids hiking on Dixie Hill. It was gorgeous day to be outdoors. Everyone had a good time, even John who hates hiking. It has become one of our family's favorite activities and even went back last weekend for another adventure and a picnic.

Billy Jean

2010-03-20T15:57:00.001-07:00

"Billy Jean" by Michael Jackson is Payten's new favorite song.
This kid has always loved music and loved to dance. Her new favorite thing is my Ipod. She carries it around everywhere. It is so funny to watch her dance.
Turn your volume up for this one!

Happy Birthday Payten!

2010-03-15T13:08:00.000-07:00

My little Payter Bug turns 2 today! She is growing up so fast. In my last post I mentioned good news. The good news is that my little girl is doing so incredibly well. We all are doing well in fact. I feel like that is the first time I have been able to say that in the last 2 years. We have had so many ups and downs- major downs- recently, that I'm almost afraid to even speak it out loud afraid that I will jinx ourselves. But oh well, we are doing great!

Seizure FREE!

A few months ago Payten was been blessed with a mighty miracle. This sweet little girl deserves it to. Since she was 6 months old she has suffered with complex partial seizures. We have tried several different medications over the last year and a half yet her seizures would continue on. She had these seizures every day up to 3-5 times and they would last anywhere from 3-5 minutes long. Her seizures were not scary but they did break my heart each and every time. Developmentally these seizures began to take it's toll on Payten. Her last evaluation indicated that she was at about a 12 month old ability on everything except her gross motor skills (this girl likes to run!) The seizures were becoming longer and more frequent so John and I knew we were at the point where we needed to do something. We discussed different medications with Payten's neurologist but here is where it gets complicated. There are several different medications available but which one is the best for your child? Very few of them have actually been studied on small children and they all have side effects. Some which are major and could effect your vision, or your heart, or your kidneys. All of these are already areas of concern for Payten. So how do we decide? Over Thanksgiving weekend Payten was prescribed a new medicine that seemed the "safest" as far as side effects go but was not FDA approved for kids under the age of 17. Yikes! And since it was not FDA approved it was considered "off-label" and insurance may not cover it. I had a VERY uneasy feeling about this medicine so I decided to not start her on the new medicine until after we returned home from our Thanksgiving Holiday. Then I accidentally forgot the medication at my mother's house and she had to ship it to me. In that week that we were waiting for the new medicine to arrive Payten completely stopped having seizures! It is just amazing and there is no explanation for it other than our prayers have been answered! We never did start her on the new medicine but she does continue to still take Trileptal twice a day. She has been on Trileptal for the last year and half and has never had any side effects from (good or bad.) That we can live with!

Surgery

In January Payten had another surgery to exam her eyes again and to remove the cysts that were growing on her vocal cords. The surgery went well. She had a very quick recovery, the eyes looked good and the cysts were removed from her vocal cords without any problems.

Development

Payten is still showing development delays but is catching up with great strides. Not having any seizures had made a huge difference in Payten. She has a whole new personality emerging. I am so thankful for the Early Intervention Program at The Learning Center and for their team of specialist who help Payten. Payten regularly sees a speech therapist, an occupational therapist and learning specialist.

Our little Payter Bug has blessed our family so much. She has such a special little spirit and a unique little personality. She spends most of her time in her own little world and definitely marches to the beat of her own drum. I have to admit though it makes me sad to see Payten get older. I feel like the older she becomes the more her differences will stand out and the harder life will be for her. As a mother it is so hard to not compare your child to others. My good friend, Carly posted a fantastic story on her blog about a boy with autism and his mother always told him that he may be different but he was not less. . . not less. This story really moved me and I feel the same way about Payten. It makes me so happy to know that there are so many people who understand her differences and who love her just as much. Happy Birthday my sweet little Pay Pay!

What happened to February?

2010-03-02T14:41:00.000-08:00

Oops! I did it again. How did I let another month go by without a single blog post? Where did February go? Yes I realize that it is the shortest month of the year but it really went by too quickly. I have lots to catch up on. There's even good news! (No, I am not pregnant! Let's just get that out of your mind right now.)
However, my news will have to wait at least another day. I have a mountain of work to do on top of my desk and it needs immediate attention. I can not sit here and blog while it glooms over me. I will be back. :)

December 2009

2010-01-25T12:18:00.000-08:00

Ward Christmas Party
Just like every year, December went by in a whirl wind for our us. The month started out with a lot of time and preparation for our ward Christmas Party. I am the activities leader for our church. It is a great calling to have but every 3 months I get super busy. Instead of the traditional ham dinner, we had a Night in Bethlehem which included transforming the gym to look like O Little Town of Bethlehem and all the ward members coming dressed in biblical attire. It was a very big production for me and it turned out awesome. I definitely couldn't have done it without the help of so many ward members. Sadly I only took a few pictures before the event and they turned out really dark. The rest of the evening I was too busy to be taking pictures. It was a very fun night though and something we won't be soon to forget.

Sydney's Dance Recital
Sydney is in a dance & gymnastics class with her best friends & she loves it! The class had a little dance performance before Christmas. Sydney had a big case of the giggles that night. She giggled through the whole performance. So cute! We're glad to know she's having fun!

More Monkey Trouble!
Another one of our Monkeys (This time, Payten)
Decided to fall off the bed.
Boy, did she bonk her head!
Another trip to the Dr.
And the Dr. said,
"Payten needs 2 staples in her head!"

(Next time we better have a different story or they might turn me into DCFS!)

Christmas Traditions
Visiting Santa Claus at The Dicken's Festival

Making a gingerbread house.

Going to Tuacahn to see the lights and watch the live performance of the Nativity. I have seen this so many times yet for some reason watching it again that night I got so choked up. The spirit there was so amazing that night!

The End of Our Monkey Trouble (knock on wood!)
2 days before Christmas Sydney got her cast off and Payten got her staples taken out.
Sydney got so used to using her left hand that by the time she got her cast off she forgot how to use her right hand!

And the arrival my little niece, Stevie Jayde. Born on December 18th. She is so precious and so beautiful. Sydney adores babies and couldn't get enough of her new baby cousin. It was a war between Sydney and I to see who got to hold the baby first. Of course, Sydney won.

November 2009

2010-01-23T14:27:00.000-08:00

The Turkey Tri
In November I competed in my very first Triathalon. It was something that I have always wanted to do but never thought that I would actually do it. It was a great learning experience and a lot of fun. For me the hardest part was the biking. I was surprised. I really didn't do much pre-training on the bike because I thought it would be a piece of cake for me but it wasn't. There were a lot of hills. I was so worried about the running part because I hate running but that was the event that I actually did the best in. There's another triathalon coming up in April and I'm looking forward to doing it again. Next time I will do a lot more training and hopefully will be in better shape for it.

Five Little Monkeys
We've all heard the story of Five Little Monkeys jumping on the bed. Well one night at Granny's house our story went like this:
Five Little Monkeys (Sydney and her cousins: Avery, Ashten, Austin & Dylan)
Jumping on the bed (And over it, under it, and all around the house)
One fell off (Sydney)
And broke her arm! (The right one. Did I mention she's right handed?)
Mommy took her to the ER
And the Dr. said,
"No more monkeys jumping on the bed!"

Nikki's Baby Shower

This is my cute sister, Nikki. We threw her a baby shower over Thanksgiving weekend.

October 2009- The Fun Stuff

2010-01-23T13:41:00.000-08:00

My last post was all about Payten's surgery & I didn't post any of the fun things we did in October.

First there was Sydney's half-time performance at the high school football game. The high school cheerleaders hosted a cheer clinic for the little kids. Sydney loved it. She told me that when she grows up she wants to be a cheerleader, a doctor and a mom.

Finger painting with pudding

Movie night with friends

Payten sharing her treat with her best friend, Chloe (the dog)

Halloween

Sydney was a rockin' Hannah Montana

Payten was a duck. She didn't think it was too quacky to be in her costume however.

Aunt Lisa was a hippy.

And John and I were just lame. This was the first year that I didn't go all out for Halloween. I just wasn't up to it this year but I'm already dreaming up some good ideas for next year.

October 2009- Payten's Surgery

2010-01-22T11:00:00.000-08:00

It started out with a normal visit with Dr. Nuero. . . until the Dr. heard Payten cry. She had developed a cry that sounds like an animal dying. It is an awful sound. Words just don't describe it.
"Does she always sound like that?" The Dr. asked.
"Well no," I replied. "But she has been crying like that for the last month or so. I haven't really thought much about it."
"Hmmmm," The Dr. says "You might want to get that looked at."

And so we did.

It turns out that Payten has two cysts growing on her vocal cords. This is very rare in young children and they say NOT related to Tuberous Sclerosis. What? Really? What are the odds? I have this baby who has "things" growing all over her body because of TSC and now you're telling me this has nothing to do with it?

"Oh and by the way, " Dr. ENT says, "Her tonsils and adenoids are really large. Does she sleep well at night?"
"No she doesn't actually" I replied.
"Does she snore?"
"Yes, in a cute baby sort of way, but she does snore."
"She must have sleep apnea then. We need to remove her tonsils and adenoids. While she's under we'll get another look at her vocal cords too."

This was all a shock to me. I thought kids only had their tonsils out when they had strep throat and such. I was there to discuss the vocal cords and suddenly we're scheduling surgery for the tonsils & adenoids. I wasn't prepared.

"Are you sure?" I questioned the Dr.
He said, "Go home and watch her breathe for a few minutes during the middle of night. Her snoring will get bad enough that she stops breathing. Then she'll gasp for air which will startle her, which usually wakes them up." "That's why she wakes up so frequently during the night."

So for the next few nights I set my alarm and I snuck into her room to watch her sleep. Sure enough I watched her watched her snore, stop breathing, startle herself and then wake up. As a mother my panic button was pressed! I called the Dr. the next morning to find out how soon we could do the surgery.

The surgery got scheduled for October 16th at Primary Children's Hospital. Normally the tonsillectomy and the adenoidectomy is a same day procedure and they send you home. But because of Payten's other health concerns they told us to plan on staying overnight at the hospital.

These are pictures taken that morning before the surgery

While we are getting used to the surgery routine at PCMC it still is nerve racking. I can't help but to always feel so guilty when we get there. Here we are painting smiles on our faces, playing with her and trying to have fun. While John and I are both terrified inside. This particular morning Payten was so cheerful and full of smiles. Little did she know, she was about to go to sleep and then wake up in so much pain. It always reminds me of sending a little lamb to the slaughter house. Bad analogy, I know, but poor Payten had no idea what she was getting herself into.

The surgery went well. The Dr. did not want to remove the cysts growing on her vocal cords. He thought it would be a good idea for his partner to see them first. So another surgery is on the horizon for Payten.

While Payten was in surgery the eye dr. also came in to get a good look at the tumors in Payten's eyes. His report was a little unsettling. He once again told us that the tumors look almost identical to something he would see in someone who had Retinoblastoma (cancer.) Payten was first diagnosed with Retinoblastomais before we discovered she had Tuberous Sclerosis (TSC). He was 98% certain that the tumors were just from the TSC and that it most likely wasn't retinoblastoma. He needed to be 100% certain in this situation so he wanted to do an exam on Payten while under anesthesia again in two months. The next two months were a little worrisome for us. Hard not to be. We tried to not think about it too much. John and I felt very certain that she did not have cancer but there's that 2% chance and in the back of your mind you can't help but to think what if?

Now here comes the recovery part:

What was supposed to be an overnight stay turned out to be 4 days in the hospital. It was ironic to me that with all of Payten's other health concerns it was her tonsils that put her in the hospital for four days! Payten had a very hard time recovering from the surgery. She would NOT drink or eat anything. We really couldn't blame her for that. But then she started running a fever and coughing up blood. This was not a good sign.

John and I spent the next four days wheeling Payten up and down the halls of the hospital in a wagon. It was the only thing we could do to comfort her. Notice the pinwheel in all of the pictures. This is Payten's favorite toy. She carries it with her everywhere.

(Payten was actually having a seizure at the time this picture was taken.)

By the 4th day we were so desperate to leave the hospital we started squirting liquids down her throat with a syringe. This was the only way we could get her to drink. This way Payten was finally able to reach the required amount of fluid intake so they could remove her i.v. and we could take her home.

Once we were able to get Payten home from the hospital she started to make more improvements. Overall it was about 2 1/2 weeks before she started feeling like herself again. It was a very long 2 1/2 weeks.

Yes, Payten now sleeps soundly and all through the night so the surgery was worth it. I just hope we never have to go through anything like that again.

September 2009

2010-01-21T11:47:00.000-08:00

Miley Cyrus Concert

My friend Jessica and I took our girls to Las Vegas for the Miley Cyrus concert. It was a blast. Sydney absolutely loved it even though she had to fight hard to stay awake. It was a late night for a little girl but so worth it! Sydney has been a die hard Hannah/Miley fan ever since.

And other than the Miley Cyrus concert this is the only picture that I took in September and it was only taken because Sydney needed it for part of a homework assignment. :)

So I thought I would add an old picture that was taken in September 2008.

Can you believe Payten's bald little head?

August 2009

2010-01-20T19:18:00.000-08:00

At first I didn't think we did too much in August and then I remembered how momentous this month was for us. We were busy after all.

For starters, my little Sydney (who happens to not be so little anymore) started Kindergarten! Like all moms say, it seems like just yesterday I was bringing her home from the hospital. Now she is off to Kindergarten and she LOVES it. Her most favorite thing is riding the bus but she also likes recess too. She said she likes to have the boys chase her around the playground. Oh dear!
In these pictures she wanted to make very sure that I was able to get a good picture of her new iCarly backpack. (I think we got one, Syd!)

Payten had her first haircut! Just a trim really to even it all up.

Another EEG. Payten still having seizures. They are always in clusters and I start to wonder if they are really seizures or infantile spasms?

Test results show that they are complex partial seizures. So what do the dr.'s say? Let's increase in meds! Frustrating.

We took a little road trip to visit Aunt Erin and swim in her pool

And to Lagoon

To the lake with our fun neighbors

Sydney & Payten traded rooms. What a lot of work this was. However, I was so glad when it was done. This was a great way to get their bedrooms organized once again. Sydney got to create her own masterpiece on the walls before the painters arrived to transform the walls in her new room to pink and brown. I always hated the pink and green when it was Payten's room. The pink was just way too bright.

Like I said, it was a busy month. It just wore us all out!

July 2009

2010-01-19T12:45:00.000-08:00

4th of July = Family Reunion = Camping . . .(sort of)

San Francisco
We decided one Thursday afternoon in July that we were in desperate need of a vacation. So the next day we were on a plane to San Francisco. It was thrilling to be so spontaneous and it turned out to be one of the funnest trips we have ever been on. Sadly, it was the one time that I forgot to pack my camera! ARGH! Luckily we were able to borrow one from Cary & Tersea and we were able to buy one of those handy disposables.

While we were in the area we also drove to Santa Rosa to visit John's Brother & girlfriend. They were kind enough to watch our kids for the night while John and I drove back in to the city for some alone time. John had made reservations for a quiet dinner down on the pier after a tour around Alcatraz. The next morning we took a private helicopter tour of the city. It was one of the most amazing things we have ever done. Not only did we fly over the Golden Gate bridge but we also flew under the bridge as well. It was breathtaking!

Finally catching up- Starting with June 2009

2010-01-18T19:46:00.000-08:00

Yes it's true! I am back! After a very long hiatus from my poor neglected blog I am back! Thank you, Tonya for pestering me about my blog and giving me the motivation to get caught up. If it wasn't for you inspiring to print my blog journal I probably would be letting this go to the way side.

We have created many memories over the last few months but I failed to write them down or post them on the blog. I don't want these things to be forgotten so I will be catching up as best I can.

My goal is to have 7 months caught up in 7 days.

Starting with June 2009:

Payten starts walking!

Sydney falls in love with Seven Peaks water park

And has the best Hannah Montana 5th Birthday party ever!

She also learned how to mow the lawn

(This picture WAS taken in June, not January. But the extra layers did add to her cuteness, I must say!)

And gives her dad one nice pedicure while he was fast asleep on the couch.

Father's Day . . .

We love you Daddy!

Twinkle Twinkle Little Star

2009-07-02T13:20:00.000-07:00

I am alive! We have been having lots of fun and I have lots of pictures to post but no time now. It'll have to wait. I came across this video taken a year ago and it made my heart smile! My babies have grown so much in the last year. I forgot how bald Payten was as a baby. Luckily, her hair is starting to grow now!

Going Private

2009-05-11T23:13:00.000-07:00

I'm going private. Sorry folks, I swore I would never do it. However, recent events in my life have changed my thinking about this so please send me your email if you'd like to keep reading my nonsense.
Thanks, Ammie

Shake Your Booty Girl

2009-04-27T10:18:00.000-07:00

We have fun with this one. Pay's got the rhythym and Syd loves to shake it. They both LOVE this song.

Holland

2009-04-23T12:41:00.001-07:00

I met someone the other day who has a son with epilepsy and a brain tumor like Payten. She shared this poem with me and I was so touched by it, I just had to share. For anyone who has had a child with special needs I think you will be able to relate.

It is truly the people around you that get you through you through lifes ups and downs. I've learned that somewhere, someone else is always facing even bigger challenges and I wouldn't trade mine for anything. I never imagined "Holland" but I'm so glad we're here.

Welcome to Holland
by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome To Holland".

"Holland?!?" you say, "What do you mean "Holland"??? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy"

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around…and you begin to notice that Holland has windmills...Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy...and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes that's where I was supposed to go. That's what I had planned".

And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very significant loss.

But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things...about Holland.

Payten's First Birthday!

2009-04-08T20:27:00.000-07:00

My sweet little Payter Bug turned 1 on March 15th. I am a lousy blogger and waited more than a month to post this on here but I didn't want to miss it. I can't believe how quickly her first year went by. Mom's always say that. But seriously, time went by way too fast. I just want Payten to stay my baby forever. Part of me dreaded her turning one because it meant she is closer to growing up and with that comes even more challenges that life will bring her. Right now she is just my perfect baby and no one knows that she is any different.

In Payten's first year she has taught us so much about life, showed us a different view on the world and brought us a special kind of sunshine with her smile. She is the sweetest little girl and I am so lucky to be her mommy.

Payten's birthday fell on the same weekend we were at Primary Chilren's. Luckily we got to take two days off from all of the medical hoopla to celebrate and play. On Saturday we had a little party with lots of family and friends. Everyone had fun except Payten, who was extremely tired and a little overwhelmed with all the people. She is going through the mommy only phase and is starting to become very shy. She wanted nothing to do with all her grandma's who wanted to give her loves. Payten wasn't too sure about her darling little cake either.

Her actual birthday was on a Sunday. After breakfast I let her have a cupcake and she loved it! It required a second bath but was absolutely worth it.

After that we headed to Salt Lake and checked into a hotel and went to Disney on Ice. Sydney was in heaven with the indoor swimming pool. Payten was just happy to explore a new place.

It's no joke

2009-04-01T21:21:00.000-07:00

It's no joke I'm actually putting another post on here FINALLY! Today was April Fool's Day and I being the usual jokester in the house completely failed on my pranking responsibilities today. Next year I'll think of something really good though! :) I did manage to call my mom today to tell her we are moving to Lehi. She was so excited she started to cry and then I felt terrible because it was just a joke. See what I get? Some things are not meant to be joked about!

Here are pictures from our ward 80's party last Friday. I am the new activities chairman for our ward and had a lot of fun planning this party. It was the raddest ward party I've ever been too. Now that I have all the stuff I think I need to throw another 80's party that's not at church so people can really unleash their inner 80's self. The coolest party for me was getting to wear those gigantic hoop earrings my mom would never let me wear.

I am guilty of still owning a hot pink scrunchie but the rest of my outfit (except the skirt) and all of the jewelry was bought last week at Wal-Mart. The 80's are back! And did you know that if you have any 80's memorabilia you could probably make a killing by selling it on Ebay.

John won the award for the Best Dressed Dude. I think it was the fake hair we taped to his chest. Easy ladies! This man is taken!

Warning: John's short shorts and those white legs may not be appropriate for children under the age of 99. Viewer discretion is advised.

And I have to say thanks John and his posse for performing their Risky Business skit. I wish I would have had my camera ready to capture you guys sliding across the church floor in dress shirts and boxer shorts. Most of you biffed it but it was HI-larious! You guys ROCK!

Payten's MRI & Echo

2009-03-31T20:30:00.000-07:00

On my last post, we were on our way to Primary Children's Hospital for Payten's follow up MRI and Echo cardiogram. Everything went well and Payten did great with the sedation both times. Coming off of the sedation, Payten was pretty funny. She acted like a little drunken sailor! She had the biggest smile on her face yet she could barely keep her head up and her eyes open. She had no balance and she kept toppling over every time she tried to sit up. It was funny because she was sooo happy. Payten slept for most of the day after that and was fine after a couple of hours. I was concerned about how she would react after the sedation especially after doing in twice in one weekend but she did great.

It seems like we waited forever before getting started. Luckily Payten was happy and played with just about everything we could find in the room.

Sleeping so peacefully in the recovery room. She looked like an angel.

Our little drunken sailor

Here comes all of the medical mumbo jumbo:
We also had an appointment with Payten's nuerologist while on our visit to Primary Children's. We were expecting to review her MRI results and to discuss the seizures Payten has been having. When we walked into the waiting room the receptionist informed us that our doctor was sick that day and we needed to reschedule. Uh, kind of a big deal here! Considering the fact that we live over 4 hours away rescheduling is not that simple. We ended up seeing the on-call Resident. They were nice to get us in immediately but I was not the most comfortable seeing the new resident but what do you do? The resident told us that the MRI showed the tumors in Payten's brain are the same size and he increased her dosage of Trileptal again to treat her seizures.

Later that week we saw our Pediatrician for Payten's 12 month well child exam. He gave me a copy of Payten's latest MRI report which indicated that her tumors in her brain had in fact grown but probably due to the fact that Payten has grown also. There is also an unusual mass of veins in the back of her head. Not sure what that means. We are still waiting for a follow-up from our real Dr. Nuero who called in sick! The increase in Payten's seizure medication seems to be working. There are times when I notice she is acting a little strange and doing the blank stare thing but no more eyebrow twitching so I don't know what to think. Sometimes, I think I think too much. She has also been a sick this past week and had her done so that may have something to do with it???

There is good news in all of this and I saved the best for last: Payten's cardiologist told us that her Echo cardiogram indicated that the tumors in her heart have gotten smaller! Mysteriously with TSC, the tumors in the heart are usually the largest at birth and get smaller from there (Oh, how I wish all of the other tumors were like that.) Like I said though, usually is the key term. With TSC you never know what you're going to get. We could only be hopeful that the tubers in Payten's heart would get smaller and so far they are! Payten is doing great.

2009-03-11T23:13:00.000-07:00

We got a new television and in the processing of moving the tv we had it sitting on the floor. Payten loved having it down on her level. We put on a Baby Einstein for her and it was so funny to see her get as close as she could to the tv and sit there so intently. She was in total awe. She is such a little cutie!

We are headed up to the hospital tomorrow for her MRI on Friday and Echocardiogram on Monday. Both of these tests require sedation but they wouldn't do them on the same day. So it will be a long weekend for us. Payten is continuing to have seizures everyday even after doubling her dosage of medicine. We get to see Dr. Neuro while we are there so I hope we will be able to find a better treatment plan for her. This has been pretty stressful.

And . . . Payten turns 1 on Sunday!!!! So in the midst of our busy weekend we will also be celebrating! I can not believe how fast this time has gone by. We have lots of fun planned so there is sure some great pictures to come!

The Low Prices

2009-03-11T23:01:00.000-07:00

The other day we were out shopping at the dreaded Wal-Mart. As we were walking out of the store into the parking lot Sydney and I had this conversation:

Sydney: "Man, Wal-Mart is sure busy!"

Me: "It is, huh."

Sydney: "Yeah everyone likes to come here cause they've got the Low Prices."

Me (laughing hysterically): "Where did you come up with that?"

Sydney: "TV"

Who knows, she may be a bargain hunter after all!

More Seizures

2009-03-04T10:38:00.000-08:00

Now a medical update on Payten. For awhile she was doing great. We saw the eye doctor again and he told us to not have Payten wear her little eye patches for a few months to see if her lazy eyes got any worse without the patch. This is great news because patching her eye became very difficult. She would rip the bandage off just as soon as I got it on. So far without the patch her eyes still seem a little off but I've seen other kids that have it a lot worse than Payten does.

We started Payten on Trileptal in September and she went 5 months without having any seizures. Then Payten started having absent seizures everyday. They are not grand mal seizures with the shaking and convulsions so it is not terrifying but it is still heart wrenching to watch. Her eyebrows start twitching, her eyes roll back and then she goes into these blank stares. Sometimes she screams after they are over and sometimes she goes right back to whatever it is she was doing. We started doubling her dose of anti-seizure medication so I pray that it will be the solution.

Payten is scheduled for her second MRI and echocardiogram next week followed by her check up with the neurologist and cardiologist. It seems like we just had her last one I can't believe how fast the time goes.

Despite all of her challenges Payten is still the sweetest and happiest baby ever.

P.S. Thank you, Auntie Erin for our cute little surprise Payten got in the mail yesterday.

Payten

2009-03-02T23:27:00.000-08:00

My sweet little Payten . . . so much to say about this darling little girl.

* Last month we had Payten's 6 month review with TLC and she is doing so well. When we first started Payten in the early intervention program she appeared to be months behind in her development. She is still a little behind but is catching up quickly.

* Payten can belly crawl now and she is pretty darn quick too. She does not like to be left alone so whenever I leave the room she is always right there behind me. She hasn't started crawling on all fours yet but we think it's close. We set a goal to have her crawling by the time she turns one and walking by 18 months.

* She loves cruising around in her walker. She is quite precocious in that thing too. On Wednesday's we take the walker to Shanna's so she can cruise all over her house with the wood floors. Now she has figured out how to empty drawers and started tearing the leaves off of the plants. With the help of her walker she has also become an excellent helper of unloading the dishwasher. She loves to take the silverware out and then runaway with a sneaky grin on her face like she knows she's being naughty. You can't help but to love it.

* She loves snuggling with her silky blanky. From the time she was just a newborn baby she has always loved to have this blanket snuggled right up to her face.

* She is fascinated with eyelashes and tries to pull mine out! She does the same thing on Sydney's baby dolls.

* She now has eight teeth! She eats any baby food we give her except for squash. She's starting to be a big kid and eat table food too. She loves to drink from her sippy cup and Cheerios is still her favorite treat.

* She discovered popsicles and now she's in love! She'll take it over completely if she sees you eating one in front of her. Daddy still hasn't figured this out and she devours his every time.

* She can wave bye-bye and say "dah." To Payten "dah" could mean Dad, dog or duck. Watch how cute . . .

Sydney

2009-03-01T14:30:00.000-08:00

Sydney-
My little sassy pants! Boy this kid is sure giving me a run for my money lately. She is so full of drama and there is no middle ground with her. She is either as sweet as can be, or as sassy as can be. I am dreading her teenage years!

* Everyday she comes to me tells me that she has 3 secrets for me. Then she whispers in my ear, "I love you today, I love you tomorrow and do you want to play house?" Of course I say yes and so everyday we play house. We always pretend like we are both moms. Payten gets to be my baby and Sydney gets to have sets of multiples. She likes to have eight kids (sometimes more) just like on her new favorite tv show, "Jon & Kate plus Eight."

* Sydney is trying to save all of her quarters, pennies and "diamonds" so that she can buy a sparkly pink Nintendo DS.

* She went on her first field trip with her preschool last month. They went to the pet store. She was so excited to go and had lots of fun. When she came home she told me all about the cool animals they saw but told me she hated the way the pet store smells. Personally, I agree. This picture was taken after the field trip. She was completely conked out on the couch.

Well here it is

2009-03-01T01:48:00.000-08:00

Well here it is. Finally, another post! Where to start? Hmmm . . .

Me-
* For the last 6 weeks I have been taking a photography class just for fun. I have learned so much about my camera and all those buttons.The only bad thing about the class is that it has made me want a new camera and ironically, since taking the class I have taken very few pictures of my kids.

* I lost my keys. Days ago. It is making me crazy! I remember seeing them in a weird place and thinking "you'll never find them there." Why I did I not remove them at the time? I don't know but I'm kicking myself now!

John -
* Has been refereeing high school basketball games again this year. He loves it! It has kept him really busy almost 5 nights out of the week for the last few months. John had his last game yesterday. It will be so nice to have him home again!

* Had to say bye-bye to his old truck. (Finally!) This happened at the end of January and I should have blogged about it sooner.
This old truck we nick-named "Ol' Faithful" because it is the truck that will never die. Even though John got a new & much nicer truck in September he still practically cried at the thought of selling this old thing. He has owned this truck for the last 12 years. It was very much a part of him and it even smelled like him (and not in a good way either!) Anyway, John loved this thing and would not sell it to just anybody, so he sold it to his brother who he knew would love it and take care of it as much as he did.

For the sake of keeping posts short and not to mention that is 3 AM, I am going to end here and post about the kiddos later today. Hopefully after my long Sunday nap that I never get. (Thank you, my dear sweet Sydney, for waking me up in the middle of the night. Since I could not go back to sleep at least I got one thing off of my "To Do List." Hopefully, tomorrow night you can go to the bathroom all by yourself.)

Sydney's got a new do

2009-01-27T15:22:00.000-08:00

No more pigtails. No more ponytails. Sydney's got a brand new do!
It was all her idea to cut it so short and she loves it. She thinks that now no one will recognize her.

(She took this picture all by herself and insisted on puttin it on the blog)

And Payten has a new tooth! That makes three now and more are on their way. Right now she looks like a little hillbilly with that toothy grin of hers. We love the smile but we don't love the grouchiness or the massive amount of boogers and snot that teething has brought on.

I'm Baaaack! And with the longest Christmas post ever!

2009-01-16T22:07:00.000-08:00

It has been over a month since I have posted. Sheesh! This is going to be a LOOONG one. I've got a month's worth of pictures in store and you betcha I'm gonna surprise you all with yet another infamous Christmas post. (Just for the sake of keeping good records, right?)
So without further ado, here's what we've been doing for the last month:

Sydney's Christmas Dance recital

What a bunch of "Happy Christmas Trees" (in case you couldn't tell what their costumes were supposed to be. Yeah, it took me a minute as well.) Sydney loves dancing and there is nothing shy about this little girl. We loved watching her up on the stage dancing away and having the time of her life.

But boy, what an evening this turned out to be. Payten had not been feeling well that day. Luckily we made it through the entire dance performance without an incident from her but then when we went backstage and sure enough she covered me, herself and just about everything else within 2 feet in vomit. Yuck! Poor baby. Good thing that only lasted for one day.

Following the dance recital I arrived home (remember I'm still covered in throw-up) to find our laundry flooded. Not with water - but with laundry detergent! I wish I had taken a picture of that scene. Laundry soap was dripping down the cabinets, puddling up on the floor, it was everywhere! It's a lot more humorous now than it was then. It was totally my fault too. Note to self: Always check to make sure the lids are securely on new bottles of detergent bought in bulk before you tip them on their side for easy storage on the top shelf of the cabinet!

Work Christmas Parties
My work Christmas parties are always a big thing. I have the best boss who loves to make it a big production. We started the day off with smoothies and a lot shopping. Here is a picture of JUST ONE of the pit stops. This was our shopping spree at Costco. Did I mention, I have the best boss?

We also had dinner party later that evening at a local golf course. For dinner, everyone had to dress in their ugliest Christmas sweater for a contest. John was a good sport and wore this white trash Santa Suit that I had found at the D.I. It was seriously hideous. I could not stop laughing all night. What you can't see in this picture is the fact that the pants on this lovely Santa Suit were elf size and barely went past John's knees and he wore his sneakers and socks pulled up with it.

John had his work Christmas party at the same place the very next night. No crazy sweater contest this time but we did have a good time. John was in charge of putting his work party together and he did a great job.

Snow Day in Dixie
I have never seen it snow so much here before. The funniest part is that after 2" of snow they actually cancelled school for the day! Sounds crazy, I know, but we live in a town that does not have the equipment to handle this much (if any) snow! I myself don't even own an ice scraper let alone a snow shovel. The kids loved the snow. Instead of building a snowman Sydney settled for a snowball fight. Then there was also an awesome sledding adventure up at Pine Valley with friends. We had a blast. I wish I had taken more pictures. Sydney was not about to let me takte her picture that day. It has been a while since we have purchased any snow gear. The only pair of snow pants we owned for Sydney were a size 2T but somehow we made them work!

Christmas Eve with Neighbors
Our neighbors invited us over to their house for dinner on Christmas Eve. After dinner the kids put on a Nativity show for us. Sydney was a wise man. Before dinner I told her that the kids were going to do a nativity. She said, "But Mommy, I don't know how to play that game." Trust me, she learned quickly! The kids did an awesome job and it was so much fun. We are so lucky to have such great neighbors.

The evening with our favorite tradition of opening our Christmas jammies presents. Sydney has been in charge of picking out the pajamas for everyone for the last 2 years. We think she does a pretty good job.

Christmas Day
Our little Sydney was quite the little stinker for most of the month of December. I kept telling her that she was going to be stuck on Santa's Naughty List. Fortunately, on Christmas Eve she was really, really, really good. Santa must have found out how good she was because he did come to our house and brought us lots of cool stuff.

Our family slept in til 8:00 that morning and it was killing me to not wake them up. My parents are still talking about how I would always wake the whole house up at 4 a.m. every Christmas. But this year I held back. The funniest part of Christmas morning was watching Sydney wake up. She went and looked in the piano room where our Christmas tree was and she saw nothing. "Dang it," she said. She was seriously distraught and thinking that Santa had not come since she had been so naughty. But then she walked into the living room and her whole face lit up when she saw the load of new presents and she started screaming, "He came! He came! He really came!" I wish I would have had that moment on video. I love seeing how excited kids are at Christmas.

Payten was most excited about playing with the paper and the boxes. Sydney's favorite present was her new bike and the new diaper bag she got for her babies.

Grandma's House
After Christmas we went to my mom's house for a few days. It was a busy week of visiting with lots of family. It was Christmas all over again and our girls got majorly spoiled by everyone. They always do.

How can this not make you smile!

2008-12-12T14:33:00.000-08:00

This kid makes me laugh! I LOVE to hear Payten giggle and squeal! It's funny to watch her kick her little legs and paddle her arms as fast as she can when she is excited. How can it not make you smile?

Payten will be 9 months old next week. This first year is going by soooo fast. Her favorite things are Cheerios and her puppy Chloe. They are best friends. When Payten is laughing it is usually because Chloe is in the room. I was never a fan of dogs but I love this dog because she loves Payten. Chloe takes very good care of Payten and it is very sweet.

About two weeks ago Payten realized that if she rolled over and then rolled again she could actually get somewhere. Now she's happy to be on her tummy and wants to roll all day long. She has turned into a little busy body. We also just pulled out the baby walker. Baby girl loves her new set of wheels!

Payten now has two teeth with more on the way. I love her new toothy grin. She also has been going through a growth spurt. I'm having a hard time keeping up with her. Okay friends, any tips on increasing milk supply? I really could use the help!

Payten had another mini seizure right before Thanksgiving while she was with a babysitter. It breaks my heart. I don't want to go back to the drawing board of medications and I am worried that she is building up to the "Big One" as far as seizures go. She hasn't been herself lately but it's hard to figure out what exactly is going on. Other than that Payten has been doing well with her development. I can't say enough good things about early intervention. I am so thankful that Payten is able to be in a program here. We have therapists coming to our house every other week to work with her and it is paying off. She is still a little behind but is catching up quick. On their last visit they were surprised to see how well she was getting around with her rolling. Who knows crawling may be in our near future!?!?

Genetic Counseling

2008-12-12T14:30:00.000-08:00

We had a lengthy appointment with Dr. Genetics on Wednesday. John and I both had mixed feelings about receiving genetic counseling but we went anyway and the visit went well. I was impressed with the doctor's knowledge however we didn't really learn anything that we didn't already know. I'm not convinced that we need to have a complete genetic test on Payten at this time. It does cost a lot of money and is not always covered by insurance but the biggest reason is that I know it will not change her diagnosis so what is the point? There is no way to tell if Payten has TSC because of genetic mutation or because either John or I are carriers without having the genetic test done on all of us. At this point it is not something we are concerned about. We would like to someday have another child but not anytime soon by all means.The doctors was very friendly though and spent a lot of time going over everything with us and gave us hope for a brighter future. He said that the disease Tuberous Sclerosis has come along way over the last 10 years and there are new studies out there finding ways to treat these types of tumors especially ones in the brain. There may someday be a cure!!!

The Cookie Man House

2008-12-09T21:27:00.000-08:00

We have been very busy this Holiday season but not too busy to keep up with some old Christmas traditions. One tradition is to make a gingerbread house. This year Sydney referred to it as the "Cookie Man House." So cute! About half way through the decorating Sydney decided she'd had enough and left me alone to finish by myself. By the time I was done I had frosting everywhere and my cookie man house only looked somewhat like the picture on the box. (Big Shock- it was very hard for me!!!) However, I had no choice but to improvise because somehow we lost both the gingerbread tree and the gingerbread snowman. I think the dog ate it.

Another one of my favorite traditions is to drive around in the car to look at Christmas lights. We have done that a couple of times already and Sydney has loved it. I love Christmas through the eyes of a child. It is so much fun.

And just like every year we attend the Dickens Festival. The real Santa is always there to visit with the children. Isn't he great? Sydney tried very hard to be patient while waiting in the long line so see the big man. For her, it was all worth it though. Once she had her big moment on Santa's lap she let him have it. She gave him a very long and very detailed list of all the things she would like him to bring her. (We'll save that for another post/another day.) As for Payten she didn't know what to think but at least she wasn't screaming!

Thanksgiving Report

2008-12-01T13:24:00.000-08:00

To Grandma's house we . . went! We had a great Thanksgiving. We went left town and went to my mom's house for the weekend. We took the term "stuffed" to a whole new level as we were invited to 3 different Thanksgiving dinners! They were all fantastic and we had a great time visiting with so many relatives. My mom even made an extra turkey at home just so John and I could have turkey sandwiches the next day. Isn't that the best part about Thanksgiving???

My sister Nikki was in town visiting from Texas. We hardly ever get to see her. She had a great time spoiling all of the little kids and boy, does Sydney know how to work it. Nikki made the mistake of taking Sydney to Target with her one day. Of course Sydney wanted everything and poor Nikki couldn't tell her, "No." Sydney does the same thing with John's sister, Lisa. She is a lucky girl to have two Aunts that love to spoil her.

This is a picture from our first dinner at my Grandma's house. Pictured from left to right are: Unique (a cousin), Sydney, Payten, Me, My sister Nikki, Brooklyn (my brother Zac's baby), and my youngest sister Morgan.

My friend Mindy convinced me to go shopping with her on Friday morning. She picked me up at 3:30 a.m. and went to Wal-Mart . . . of all places! The good news is that we didn't have to wait outside in any line in the freezing cold. First we did some shopping for our "price match" items. Then we stood guard by the crates with the hot door buster items. I thought I was going to have an anxiety attack by the time 5:00 a.m. arrived and the mad dash for all the bargains started happening. Standing in line next to the barbie cars amongst a bunch of crazy women had me pretty freaked out! It wasn't as bad as I thought though and the hardest part was getting to a check-out stand and out the door. I only suffered a few sore ankles by some psycho lady running over the back of my feet with her shopping cart. Ouch! But we couldn't call it a day without a good war injury right? We went to a few more stores after that and stopped for some breakfast in between. I had a lot of fun!

I didn't really have anything in mind that I wanted to buy but boy I sure bought a lot! We barely had room in our car to get it all home. Mad props to John for organizing it all in such a fashion to do so. Picture us driving down the highway, our car loaded to the hilt with just enough room in the car for our heads to peek out. That was pretty much how we rolled!

Luckily our kids were angels in the car both ways. They both slept most of the way coming home. I'm sure it was due to the lack of sleep they get at Grandma's house. There is just too much excitement for them to sleep. We had a great time and I am so thankful to have spent this holiday with all of my family. I sure love them. I am also thankful for my dear husband who goes along with whatever and for my two sweet girls that bring me so much joy and happiness. I am so blessed!

Twilight Movie

2008-11-21T02:24:00.000-08:00

Call me crazy but I saw it precisely at 12:01 a.m. this morning and I LOVED it! It exceeded my expectations for sure. I didn't expect to like the movie as much as I liked the book so I was pleasantly surprised. I also loved the music. I will be downloading this soundtrack for sure.

Thank you Cheryl and Nikki, I had so much fun waiting in line with you and freezing our nee-nees off just to be one of the first crazy people to see this movie. It was awesome!

Fried Ice Cream

2008-11-21T02:14:00.000-08:00

Here is my recipe for Fried Ice Cream. It is just way too delicious and way too EASY! I just had to share. It will remind some of you of Los Hermanos for sure :) It is sure to impress so enjoy!

1/2 gallon Vanilla Ice Cream
4 C. Corn flakes, crushed
1 C. Coconut
1/4 C. Margarine
1/4 C. Brown Sugar
1/4 C. Cream

Combine corn flakes and coconut & set aside.
In a saucepan mix together margarine, brown sugar and cream. Bring to a boil then remove from heat and pour over cornflakes. Mix well.
Scoop ice cream into balls and roll in corn flake mixture. Put scoops in a plastic cup or muffin tin and freeze.
Serve with favorite topping and whipped cream.
Makes about 12 servings.

Happy Birthday to my Mom

2008-11-17T13:27:00.000-08:00

Happy Birthday to my Mom! I am so lucky to have her for my mom and friend. She has the biggest heart, is always so giving and has the ability to make friends every where she goes. She has overcome so many challenges in her life and she makes me want to be a better person. My girls are even more lucky to have her for their Grandma. Sydney absolutely adores her.

My Mom and Morgan came down to visit us over the weekend so we could help celebrate her birthday. As always, we had so much fun. There's always shopping involved and Mom's good cookin' that we love so much. This time we were able to start a new tradition of attending the temple together. Yesterday Morgan and I made Fried Ice Cream for my mom's birthday while my Mom made Navajo Tacos for dinner. Yum-O!

After dinner we dug through a box of my mom's old pictures. It is shocking to see how much my mom and I look alike.

Sydney and I are always sad to see them leave. John is too even though he would never admit it. We wish they lived closer so we could spend more time with them.

Early to Bed, Early to Rise

2008-11-13T21:05:00.000-08:00

Other than the fact that it gets dark so early every night, I am loving the time change. My kids have been going to bed so early and I am feeling a little spoiled. The old saying is true though, "Early to bed, Early rise." My kids have also been waking up with the chickens! Good thing I'm a morning person.

Poor Sydney plays so hard all day long and she recently stopped taking naps so by the time 7:00 rolls around this kid is pooped! This picture was taken a few nights ago. Sydney was sitting at the kitchen counter waiting for John to get home from work. The next thing I knew she was out for the count and it wasn't even 6:00 yet!

I love the sweet innocence our children have when they are sleeping. It really makes you love them so much more.

Eye Patch

2008-11-09T13:05:00.000-08:00

I've said it before and I'm saying it again, Tuberous Sclerosis is like living your life on a roller coaster. We go up and then we go down. It has taken me days to be able to write this post because I was so far on the 'down.'

Payten has had problems with her eyes drifting, especially her left eye. It seemed to be getting more and more noticeable. We had an appointment with the eye doctor in December but they had us on a cancellation list and we were able to get Payten in on Thursday. It's never any fun to take Payten to these appointments. They always have to dilate her eyes and she screams as they pry her little eyelids open for the exam. At first the doctor thought that the tumors in her right eye had grown. When she first mentioned this my heart sank. After taking a second look she decided that they are the same as before. I pray that she is right.
The doctor was not sure if the problem with Payten's eyes drifting is due to weak eye muscles or if it is a problem with her brain not corresponding the movements. The easiest and non-invasive thing to do first is to place an eye patch on the good eye to strengthen the bad. The first day with the eye patch did not go so well. She immediately wanted to rip the eye patch off and put it her her mouth! Since then she has already gotten used to it and the other good news is that the patches come in cute girly designs.

I know that wearing an eye patch is no big deal and that it could be so much worse. But for awhile there I felt like we had just had enough! I've had enough of going in and out of doctors' appointments. Enough of putting Payten through test after test and enough of worrying about every organ of her body. I was an emotional wreck after Thursday's appointment. I couldn't look at Payten and not cry. I feel so bad for her! Sometimes it doesn't help that she is the sweetest baby ever. I just feel like she shouldn't have to endure so much! John told me that I needed to toughen up and he's right. This is what it's going to be like for the rest of her life. Payten is going to need us to be strong and I'm going to need to learn to hold my emotions in until I'm in the privacy of my own walk-in closet! It has been 5 months since Payten was diagnosed with Tuberous Sclerosis and I just keep waiting for this to end, for our life to slow down and for us to go back to having a 'normal' life.
Like I said we go up and we go down. Amazingly, Payten is there smiling through it all. What a shining example she is to me!

Happy Halloween

2008-10-31T14:54:00.000-07:00

Happy Halloween! I can't believe it's Halloween already. Seriously, where has the time gone? We carved our pumpkins the other night. It was the first time we have done that as a family. Sydney was excited about doing it but was seriously grossed out by having to dig all of the seeds and goopy stuff out first. She sat there and gagged the whole time. It was quite comical!

Payten is still not feeling well. She is sleeping a lot and is slowly getting better. We took her to the hospital today to get some blood work done. I changed her diaper there before we left and noticed that she had a rash all over her belly. Since her doctor's office is right upstairs from there we thought we should run up there and have them look at it. With the fever now gone and the appearance of a rash they were able to determine that Payten has Roseola. It is a virus that causes high fevers and then a rash. It is common in children ages 6 months - 2 years old. No fun, but I am a little relieved that it's not something serious. Hopefully she will feel better soon. I want my happy baby back!

Poor Baby

2008-10-30T20:44:00.000-07:00

My poor sweet baby has been SO sick all week. She has had a really high fever all week and has been so lethargic. At first I assumed she had a fever because she is teething so on Sunday I gave her some Motrin before putting her to bed. On Monday I could tell she was not feeling well but I was so busy preparing for the party I didn't really think twice about it. (Boy, do I feel like a great mom!) By Monday night she was really burning up. We were up all night long and I couldn't get her temperature of 104 to go any lower than 102. We tried everything we could think of to get it to go down but nothing worked and this had me really concerned, especially with Payten's high risk of seizures.

I debated on whether or not I should take her to the doctor. By this point I assumed that she had the flu and knew there would be nothing a doctor could do to help her.
After a phone call to the doctor on Tuesday, I was advised to bring her in. Our Pediatrician suspected it was a kidney infection and we had to get a urine sample by inserting a catheter. By the way, this was terrible. Poor little girl! I was so exhausted and sleep deprived I couldn't help but to cry. Luckily John was there to hold Payten's hand during this because I just couldn't do it. It's ironic because we have been through so much with this little baby but some things just do not get any easier.

The doctor suggested Payten get a shot of antibiotic so we did that. Since she was not any better and still running high fevers on Wednesday we had to take her back in for another shot of antibiotic. The needle was big and long and the antibiotic was really thick and took longer to inject. Ouch! Poor little baby!

The doctor called tonight to tell us that the lab results came back negative and it's not a kidney infection. He is still not sure what is causing Payten to be so sick. We need to go back in tomorrow morning to have some blood tests done.

It always breaks my heart to see sick babies. Payten has been so lethargic and it is so sad. She can barely hold her head up. I took this picture yesterday. She was so tired even though she had just woken up from a long nap. Today she slept for most of the day which I hope will help her. Her fever has finally gone down so I hope that by tomorrow she will have turned the corner and will be feeling better.

I Love Love Love HaLLoween!

2008-10-29T15:50:00.000-07:00

I Love Love Love HaLLoween! Every year I get so excited about Halloween and I throw a neighborhood party just so I can have an excuse to dress up. This year I made Oompa Loompa costumes for John and I. It was so much fun and we looked hysterical! Since Oompa Loompa's make chocolate, Payten was a Tootsie Roll. Sydney didn't like our plan so like always, she was a princess. This year she chose to be Sleeping Beauty.

These are the creepy invitations I made this year. They are supposed to be severed toes but some turned out to look like thumbs. Don't ask me why I thought making something out of clay would be a good idea since I have never made anything out of clay before. But I live for this kind of crazy stuff and had fun with it though.

The party was a lot of fun and our neighbors brought tons of great food. Costumes were mandatory so we got some good laughs from that as well! We live in such a fun neighborhood!

Salt Lake Temple

2008-10-27T13:05:00.001-07:00

On Friday, my Mom took out her endowments in the Salt Lake Temple for the first time. It was such an awesome experience to be inside the temple with her. I am so proud of her and of all her accomplishments. She is a great Mom and I love her so much!

Me, My Mom & her best Friend Suzanne

Me, My Mom & my Grandma Sam

Kolob

2008-10-23T15:08:00.000-07:00

Some of you may have already seen this pictures on my friend Mindy's Blog but they were just to cute so I had too post them on my own. Our good friends, Chad & Mindy, came down last weekend. They brought their four-wheelers with them so we took them out for the day to go riding at Kolob Reservoir. We were originally going to go to Zion National Park to ride but learned that you can not ride ATV's in the park so we drove to Kolob instead.
Since we were up so high on the mountain it was a little chilly but we had a blast anyway. Luckily Mindy got some great pictures for us.

My Sunshine!

2008-10-15T20:52:00.000-07:00

I can not believe how fast time is going by. My sweet baby Payten is 7 months and she is getting so big too. At her 6 month check-up Payten weighed 16.5 pounds. I think she is finally slowing down on her growth spurt though. Last weekend I pulled out a box of Sydney's old baby clothes hoping that they would fit Payten but I had little luck. Payten is so much bigger than Syd was. When Sydney turned one she barely weighed 18 pounds. Payten is going to pass her up quickly.

I have to brag for a moment and say that Payten is the best baby. She hardly ever cries, she goes to sleep all by herself in her crib, sleeps through the night, and is always so content and happy. I consider myself soooo lucky! I think I earned it though, my first child was never this easy.

Since starting her on Trileptol, the anti-seizure medicine, Payten seems to be doing well. I haven't noticed any significant side effects. She may be a little more drowsy but she is a baby and babies do sleep a lot so it's hard to tell. She acted a little strange last weekend but I have myself so confused about what is normal for a typical baby and what's not. Payten was coming down with a cold at the time so I'm thinking it was just because she wasn't feeling well.

The other good news about the seizure medicine is that Payten seems to be doing better as far as her development and gross motor skills goes. For a normal baby these milestones would be no big deal but for you Payten, it is huge! I get so elated each time she accomplishes something. It seemed like Payten had started regressing on her development. She never rolled over,didn't sit up, could barely hold her head up and wanted NOTHING to do with baby food. But it seems like since starting her on the medicine she is finally rolling over more. It's still not a lot of rolling but at least she's got it figured out. She is starting to be able to sit up on her own (with a little support) and she is finally eating baby food. I haven't spoken with any medical professional about this yet to find out if this is just a mere coincidence or if the medicine is actually working and is clearing up all of the interference that may have been going on inside her little brain. Either way, whatever positive thing I can find in this situation I am all for!

We have also continued to work with Payten in an early intervention program and it has helped so much. Therapists come out to our home to work with Payten and also to show me ways that I can teach her as well. I am so grateful to have this program available and I'm also grateful that we were able to start this program early, Payten seems to be making great progress!

As I think back over the last 7 months I can't believe how much our lives have changed by this special little girl. She has blessed our lives so much and has made me a better person. This little girl has been through so much and yet she is always so happy. What an example she is to all of us! I never thought I'd have a child with special needs but I am so grateful for what it has taught me. I am truly so grateful for each and every day and for every little smile Payten gives me.

Little Payter Bug, You Are My Sunshine!

Random & Quirky Things About Me

2008-10-10T15:05:00.000-07:00

I was tagged by just about everyone I know to do this Random List of Quirky Things about me. This was months ago and I didn't do it because I thought, "I'm just too ordinary." And I couldn't think of 6 things. HA! My list keeps getting longer and longer and now that I look at it I realize that I'm a pretty weird duck! Thank you. Some of this stuff may change your opinion about me and you may never look at me the same but here goes:

1- I am a morning person. Sleeping in is sleeping until 8:00 to me. I love to get right up and at 'em too. On the contrary, I'm not a night person at all. I like to say that I "expire" at 9:00 p.m. If my kids are not in bed by that time I get really mean and nasty. It totally takes away from my alone time and I am not a happy mama.

2- I eat breakfast every single day. As soon as I wake up I am hungry and want to eat right away.

3- I hate my bed to be unmade. This stems way back from my childhood years and I used to make my bed because I thought that if I didn't then spiders would crawl inside it. Now I make my bed because it makes my room look cleaner. Plus, I have my husband trained so well that he helps me make the bed every morning before he goes to work. Score, I know! He still complains about all of the pillows though and I can't blame him for that. Currently, there are TWELVE pillows on our bed.

4- I hate to be barefoot. I usually sport one of these fancy slippers around all day. Sometime I even wear them to the neighbors house. I have three pairs but lately it seems like I need more because our dog likes them just about as much as I do. As of right now, I have no idea where the other one is hiding thanks to that dear old dog.
5- I love swedish fish. It is my favorite candy in the world. I almost always have some on stock in the pantry and sometimes when I wake up in the morning I like to sneak one in just to start my day off right

6- I have an old pillow that I like to snuggle with when I sleep. I'm not sure when I got this pillow but I think it was somewhere around the 6th grade. It is the perfect pillow that will conform anywhich way I want but I'm afraid that one of these days my beloved pillow may not come out of the washing machine alive.

7- I love to eat crab and it's pretty amusing to watch me crack it. I crack them all at once without eating any. It usually takes me awhile but once I'm done crackin' I savor every bite.

8- I hate it when the t.v. is up too loud.

9- I can flip my eyelids inside out. It's my hidden talent. I have a picture to prove it but it's a little creepy and gross so I spared ya'll.

10- I love to eat popcorn and Twizzler Cherry Nibs bite for bite. My friend Darian taught me this. Try it, you'll like it! The other thing about popcorn is that it makes me throw up every time I eat it but that doesn't mean I'm going to give it up.

11- I am addicted to water and Natural Ice chapstick. I carry them around with me all day and I can not go to bed at night unless I have both of them right next to me.

12- I like to read cookbooks even though I don't really enjoy cooking all that much.

13- I saved the best for last. I put water on my cereal. I wasn't going to admit it. But there I said it. GROSS! I know, I've heard it all. But I've been doing it since the 3rd grade and I don't know any different. It's really not that bad either.

Now that I've said it all I would love to hear what random quirky things you do. So I tag anyone who is interested. Melissa? Angie? Ally? Ashlee? Tonya?

6 year Anniversary

2008-10-05T13:58:00.000-07:00

Happy Anniversary to my husband, John. Today is our 6 year Anniversary. Some days it seems like we have been married forever and then on other days it seems like the time has gone by so fast. A house, a dog, 2 kids and a few trials later here we are, still loving each other.

I think that John and I were made for each other and we complete each other so well. I always think of the movie Jerry Maguire, "You complete me!" Corny, I know, but it's true. I can't imagine life with out my sweet husband. He is my best friend, my strength, and my rock and I am so in love with him.

Seizure Medicine

2008-10-02T23:29:00.000-07:00

We were back at Primary Children's last week for another EEG for Payten. It is starting to feel so routine for us. We know the drill and have seen a different doctor on every floor of the hospital by this point. We are definitely getting to know our way around up there. For the EEG to be most effective Payten had to be sleep deprived. This meant keeping her up until 11:00 at night, waking her up at 5:00 a.m. and no naps for her until our appointment at 10:30. The EEG is a test that tracks brain activity for seizures with a bunch of wires all over her head. Once again I am so amazed at Payten's easy going attitude. SHE IS SUCH A HAPPY BABY! Here she is so tired, with wires glued all over her head and a crazy bandaged hat yet she is still all smiles! I think there is definitely a reason why God made Payten so sweet. Before the test the techs gave Payten a little fleece blanket to keep and she LOVED it. Someone took the time to make this little blanket and donate it to the hospital. I wish whoever it was that made it could have been there to see how happy it made Payten. The first EEG we did last month came back inconclusive so the doctor recommended the test be repeated but in the mean time we should start Payten on an anti-seizure medicine. I feel so worried about the medicine and all of it's side effects yet I know that it is better than the alternative. I decided to wait to start the medication until we had the second EEG. Payten has not had any episodes in the last couple of weeks so I so badly wanted to believe that the first 3 were just nothing more than my over-paranoid mind. But the results came back from the 2nd test and showed definite abnormal brain activity coming from the back of her brain. It wasn't good news but it was what we had expected all along. The doctor said he expects Payten to continue to have more seizures so we started her on the medication on Monday. At least I feel better about making a more informed decision. So far Payten seems to be doing fine with the medicine but we're only a few days into it and after the first week the dosage is doubled.

Our least favorite part of the routine is the drive. It seems to be getting looonger and looonger. Luckily, we have Sydney and her made up songs to keep us entertained! I do feel lucky that both of my kids handle these long road trips so well.

Sydney's Tag

2008-09-23T08:33:00.000-07:00

1. What is something mom always says to you? "Please"
2. What makes mom happy? "When I be nice"
3. What makes mom sad? "When I be mean"
4. How does your mom make you laugh? "When I am funny"
5. What was your mom like as a child? "So happy"
6. How old is your mom? "18. . . Is that really how old you are?"
7. How tall is your mom? "My arms can't go that far"
8. What is her favorite thing to do? "Play and be silly"
9. What does your mom do when you're not around? "Plays with Payten"
10. If your mom becomes famous, what will it be for? "What does famous mean?"
11. What is your mom really good at? "Playing and being nice and cooking good stuff"
12. What is your mom not very good at? "when people are not nice"
13. What does your mom do for her job? "works at the oxodentist"
14. What is your mom's favorite food? "chicken sandwich"
15. What makes you proud of your mom? "When she plays with me"
16. If your mom were a cartoon character, who would she be? "Dora"
17. What do you and your mom do together? "Play Dora on the computer when Payten takes a nap"
18. How are you and your mom the same? "We kind of look the same"
19. How are you and your mom different? "We don't have the same short hair"
20. How do you know your mom loves you? "Because I am her special girl"

It is so funny to hear what kids have to say about you! The oxodentist is really the orthodontist and I thought it was hilarious that she thought I would be Dora! You really are my special girl, Sydney and I love you so much!

Twilight Sneak Preview

2008-09-22T15:14:00.000-07:00

Ladies check this out! There will be a sneak preview of the Twilight movie here in St. George on November 21st at 12:01 a.m. Tickets for this sneak preview went on sale today at Random Clothing 446 S. Mall Dr. (across from Maverick) Tickets are $20 and include a Twilight t-shirt. You can get more details HERE

Payten's Parade

2008-09-17T19:52:00.000-07:00

Payten's Parade and Pancakes was a HUGE success. It turned out better than I ever imagined and I my heart is so full of gratitude. Thank you to all of you who came out and supported us and to those of you who donated to the TS Alliance online. The response we have had has been so overwhelming. There are so many people out there with BIG hearts and I am so impressed. I know that the economic crisis has made a big impact in a lot of people's financial situation and yet we were able to raise more money than we ever imagined for this special cause. I just can not express how thankful I am for all of you.

It was a great parade and the children and their bikes were so cute. They did such a wonderful job decorating their bikes and scooters and they were so excited to show their love for Payten. That was the best. We had a great turnout for the breakfast as well. People just kept coming and it was so awesome! I would also like to thank Harmon's, Lin's, Smith's and Costco for donating all of the items needed for the breakfast. What a great community we live in and we are so fortunate to have the best neighbors out there to help us at this event to get the word out about Tuberous Sclerosis. THANK YOU!!!

Payten's Parade & Pancakes

2008-09-09T16:22:00.000-07:00

I have the most awesome neighbors who are helping me with this fundraiser on Saturday. For those of you who can not come but would still like to show your support you can donate online by visiting Payten's Webpage For those of you in the area, please come! The bike parade will begin at 8:30 am on Saturday and will finish in our culd-de-sac with the pancake breakfast. It will be a lot of fun!

Rollin' & Rollin' 2 Big Milestones!

2008-09-09T14:56:00.000-07:00

We had 2 big milestones at our house recently and they both happened on the same day. First, Payten figured how to roll over from her back to her stomach all by herself. We have been practicing with her for awhile and she finally did it all on her own. The funny thing is she decided to roll for the first time while we were at her doctors appointment with the cardiologist. She just wanted to show off I guess! Payten still hates to be on her tummy though and she gets really upset when she can't get back over onto her back so will be practicing that still.

Later that day Sydney decided that she wanted to roll on just two wheels. She decided to be BIG and ride her bike without training wheels! John took the training wheels off and away she went. It is such a cute sight. John has gotten A LOT of exercise running along side of her and she has been getting tons of encouragement from the neighborhood kids. As a mom I was more than happy to have her riding along with those training wheels on and was relieved that my little Sydney was a cautious one who didn't really care for speed on that bike. It's bittersweet to see them grow up and do big kid things.

(Sadly, I am a dork and messed up the movie footage of this cute event when I was downloading the movies onto my computer from the camcorder. Now I can't figure out how to play them back on my computer. Hopefully I can get it figured out so check back later)

Wired!

2008-09-09T14:20:00.000-07:00

Now this is what you call wired!

The last few weeks Payten has been really 'hooked up' First she was hooked up to a holter monitor for 24 hours to monitor her heart rhythms. The test results came back absolutely normal and Payten's cardiologist gave us good news about the tumors in Payten's heart as well. She said that these kind of heart tumors typically go away on their own and will most likely not cause any troubles for Payten. Like always it is a wait and see kind of deal but we are so hopeful!

A few days later we were back at Primary Children's Medical Center to meet with the nuerologist. Payten had 3 partial complex seizures last month that we were concerned about. They performed an EEG which meant even more wires, this time all over her head! The results of this test came back inconclusive and it will need to be repeated in a few weeks. In the mean time, the nuerologist has prescribed an anti-seizure medicine for Payten, which I am so hesitant to start her on. I worry so much about what kind of side effects there could be on such a small baby but then again if it means keeping her seizure free it may be worth it. I am so impressed with Payten and her laid back attitude. She did amazingly well during both of these tests and was so calm. She is always such a good baby.

My little preschooler!

2008-08-20T21:18:00.000-07:00

Sydney had her first day of Preschool today. My baby keeps getting older and older! This year Sydney is going to a different preschool than the one she went to last year so she was a little nervous for like the first 2 minutes and then she was good to go. This is her and her new teacher Miss Megan.

Sydney has been excited about going back to preschool all month long. I'm not sure if she was more excited about going to school or finally getting to wear her new clothes and using her new book bag. For some reason I think it was the clothes and the bag. . . she's such a girl! I was a little shocked when she told me earlier in the month that she wanted me to take her school shopping. My first thought was, we can't be starting this ALREADY! But, I have to admit I love that she loves to shop! That's my girl!

This is the book bag that she HAD to have. Her friend Ashlin has one just like it. Sydney was funny this morning and would not let me take her picture until I had taken a picture of just her bag. Seriously! She makes me do this with her baby dolls too. Most of the time it makes me laugh and I'm sure someday it will make her laugh too.

The other thing that made me laugh was last night as Sydney was laying her clothes out for today she also informed me that she has her wardrobe all planned out for the next week. Plus all of the accessories. Mind you that this kid is only 4. I can't imagine what I am going to do when she's a teenager . . . yikes! Sydney got into big trouble last week and I took all of her new school clothes away. She has had to earn them back one by one by being super good. Luckily, she has earned most of them back but for awhile there she was fretting about it. I know it's untraditional to discipline a 4 year old by taking away her clothes but it worked!

This is a picture Syndney and her daddy. They look so much alike and they are the best of buds! Sydney wanted to go to lunch together after preschool. When we asked her where she wanted to go, she said a place that has sandwiches but not Wal-Mart! What she meant was not the Subway in Wal-Mart. Lucky for her we went to Jimmy John's instead.

Our First Camping Trip

2008-08-14T15:45:00.000-07:00

We finally broke down and went camping last weekend for the first time as a family. We LOVED it!!! We were pleasantly surprised about how much we enjoyed it. When our neighbors first invited us to go I said, "No way." I was a little worried about roughin' it in the new tent up in the mountains with no added ammenities like bathrooms or sinks to wash our hands. Luckily, the neighbors were kind enough to let us into their trailer when needed and we had a blast. We are hooked for sure. We rode four wheelers, sat around the campfire (which was John's favorite part), hiked and played games. There were tons of kids there so Syd was in heaven. Someone was always holding Payten and Chloe which was a big score for me too.

Camping in the tent wasn't as bad as I thought. Of course we had the air mattresses out and it was only for one night, but I definitely will do it again. Our friends were impressed with how quickly we set up our tent at the campground. But really John and I practiced putting up the new tent in the garage before we left. We didn't want to look like idiots when we got there. We're strange, I know but the practice was nice and saved us a lot of time when we put the tent up again at the campground.

John's best friend from high school got married at his cabin Friday night. It wasn't too far from where we were camping so we were able to sneak away from camp and attend the wedding. It was a beautiful setting and luckily the rain stopped just in time for the ceremony. Don't you love this picture? Directions to the wedding on the back of paper plate.
We had a great weekend and are so glad our neighbors talked us into camping. The only problem with having so much fun is that our wish list just got a lot bigger:
1- New Truck
2- New Trailer
Oh, and a few four wheelers would be nice to . . . {sigh} someday!

Meet Chloe

2008-07-28T22:05:00.000-07:00

Well, we've gone and done it. We've completely gone off the deep end. There are two things that I thought we would NEVER own and we bought both of them in one weekend. Something must be wrong with us!?!?

We're not campers but we bought a tent. We think we want to try it out and give our kids the whole camping experience. I'm sure it will be fun and we won't regret it but it makes me laugh because all this time John and I have considered "roughing it" as staying in a place that didn't offer room service.

The next crazy thing we did was buy a dog! I'm not an animal person and I thought we would NEVER own a pet of ANY sort. Not even a goldfish. And now we have a puppy! My old heart must be getting soft. It took much persuasion from Sydney last weekend to convince us to take her to over Shanna's house to see the new puppies. (Shanna is Sydney's babysitter.) Of course Sydney already had one picked out that she was in love with. Her name is Chloe and she lets Sydney pack her around just like a little baby doll.

Oddly enough this little dog won our hearts over too. We agreed to bring Chloe home for a "test drive" to see how we would do with her before making a final decision. At that point there was no turning back and we decided to keep this little Shih Tzu doggie for our own. She is awfully cute and really sweet and if there is a dog that I could love she is the one.

It is a big step and I have no idea how to raise a puppy. If any of you have any advice to offer PLEASE do! Especially in the house training department, that part of the puppy experience is driving me crazy!

This was the result of staying up with the new puppy on the first night. Priceless!

Pay Day

2008-07-25T01:41:00.000-07:00

That is Sydney's newest nickname for Payten! Every time Sydney says "Come here, Pay Day" it makes me laugh. Payten turned 4 months old last week and each month just keeps getting more and more fun with her. She is always smiling and it lights up her her whole face lights up. She has such a contagious smile you can't help but to smile too. It is so much fun to see her little personality come out and we are starting to see the silly side of her. Payten loves attention and gets mad when we leave the room without her. When she's held she always like to be held facing front so she can see everything that's going on.

We introduced a little bit of rice cereal in her diet last week and she LOVED it! She gets so excited every day when we give her the cereal and then gets really mad when it's all gone. She still loves to put everything in her mouth especially her hand. At first she tries to fit her entire fist in mouth and then it ends up being 2 or 3 fingers. And man can this kid drool! Yesterday she discovered her feet. It's so cool to watch her learn new things. You can see her whole thought process on her face. It's like she's thinking, "Wow, what in the world are these?"

Sydney and Payten went to the doctor's together last week for their check-ups. Both kids needed their shots so they got them together. Poor Syd, those shots made her little legs really sore and stiff but she was so brave. Sydney is such a good big sister to Payten. She adores her so much and is such a big help. The other day I let Sydney hold Payten all by herself while she was standing up (for just a few seconds while I stand right there next to her.) Sydney thinks holding Payten is the greatest thing ever. And now whenever someone comes over she wants to show them her "new cool trick."

Here are some fun little things about Payten this month:

** Weight: 14.5 pounds (71%) She is a chunky baby and we love it!

** Length: 24.6 inches (63%)

** Favorite things to do: Lay on her playmat and talk to her little animal friends. She also loves taking baths and swinging in her swing.

** Favorite toys: Her baby doll and her soft pink lovey that is a bunny rabbit.
She loves to put both of these things in her mouth and slobber all over them.

** Payten is a little night owl and will stay awake until 10 or 11 but sleeps through the night and wakes up so happy in the morning.

** She has been a great little traveler and likes being in her car seat.

** Payten has been trying really hard to laugh for the last couple of weeks. Aat first her laugh would kind of sound like a "Aaargghh" but on Wednesday she got her first belly laugh out. It was the cutest thing ever.

TS = Roller Coaster

2008-07-23T22:06:00.001-07:00

I have been avoiding the blog scene lately. I didn't want to post because I can't find the words to express how I really feel but in a way that makes it not sound so depressing. But since I consider this my journal entry as well as a fun little thing for our family and friends to keep tabs on us- I'm just going to put it all out there on the table and get it off my chest. Then I'll follow up with something really cute, fun or silly (like blogs should be.)

Last week at Payten's 4 month check-up our Pediatrician gave us the details of Payten's echo cardiogram and told us that there are also tumors in her heart. I was crushed. She now has several tumors in her eyes, her brain and in her heart. How much can this poor little girl take? It seems like so much to have to deal with and I wish so badly that there was a way that we could protect her from this. I have been trying so hard to stay positive and for the most part I think we're doing pretty good but there are days when I feel so discouraged.

Today I joined the Tuberous Sclerosis Alliance. In a way it was like me finally acknowledging that this is real. That this is really happening and no, it's not going away. The TS Alliance has a great website with a ton of information. I have had a very hard time reading about this disorder. There are some very courageous people out there who have dealt with it and their stories are amazing and sometimes heart wrenching. Tuberous Sclerosis is a scary thing. It has put our life on a roller coaster. There are ups and downs and just like a roller coaster it all seems to happening so fast! For now Payten is fine and appears to be healthy but we have no idea what to expect for the future or know how much she will be afflicted by these tumors. We will continue taking it on one day at a time and making a reminder to enjoy what we do have.

On the upside of our roller coaster our doctor gave us a referral for a program here in the area that works with babies from birth up to the age of 3 with development delays. Since Payten has Tuberous Sclerosis she automatically qualifies for the program. Whether it will benefit her or not I am so anxious to be doing SOMETHING to try to help her! We have our first assessment with one of the program directors next week and I am looking forward to it. The director told me today that they have worked with other children in the area with TS and have seen positive results. It was a double Yay! for me to 1-know that there is hope and 2-know that there are more here in my community going through the same thing we're going through. We're not alone!

I know we'll get through this but sometimes I don't want to get through it- I just want to go around it. But either way, this sweet little girl has the ability to melt away all our troubles with the cutest little grin ever! We love her so much!

Good News!

2008-07-14T06:35:00.000-07:00

We just got back from our trip to Salt Lake. We had to take Payten back up to Primary Children's Hospital for another surgery/eye exam under anesthesia to see how much the tumors in her eyes have grown. We received good news that the tumors have not grown at all and they are not affecting her vision at all. Payten also had an echo cardiogram done on her heart while she was sedated. We haven't got the official report back on those results but from what one of the nurses said is that it looked good also. We are still in the "wait & see what happens" mode with her diagnosis of Tuberous Sclerosis but when we came home last night I felt like we could take a big sigh of relief. For now we will just continue to have Payten monitored closely. Luckily there are specialists who travel from Primary Children's to see children with special needs down here. So we won't have to go back up to the hospital for awhile. We can stay home and enjoy our happy & healthy, beautiful little girl!

Payten at Primary Children's Hospital recovering from the anesthesia
A big kiss from Daddy

Finger Painting with Pudding!

2008-07-07T23:20:00.000-07:00

I recommended trying this, you will have so much fun. Sydney and her friend LOVED it. At first they thought I was crazy when I told them I was going to give them some paint that they could actually eat but then they thought it was really cool once they realized it was just pudding and I was really going to let them smear it all over with their hands. They both giggled the entire time. It does get a little messy but the clean-up is easy. My friend Ashlee gave me this great idea on her blog and it looked like so much fun. We just had to try it and I am so glad we did.

Released

2008-07-07T22:49:00.000-07:00

On Sunday I was released from my calling as the 1st Counselor in Young Womens. After serving for nearly 4 years I was ready to be released but was still very sad to have it happen. It is such a bittersweet moment. Serving in the Young Womens was such a super busy calling but it is so rewarding as well. It was such a neat experience to see the girls in our ward grow up over the last four years and I felt so lucky to be able to be around them. It will be strange to have Tuesday nights off again. They are such a great group of girls and I am going to miss them so much. They helped my testimony grow and taught me so much and I have so many fond memories of the great things we did. I wish I would have had half of the knowledge they have when I was their age. I hope those girls know how much I love them and admire them.

Happy 4th!

2008-07-06T22:31:00.000-07:00

This is their first time wearing matching dresses! I was soooo excited. I know I will only be able to dress them alike for a few years so I am going to relish every moment!
Sydney spent the 4th of July at Disneyland with John's sister and her son, Kelly. Lucky Girl! Syd was pretty funny about going on the trip too. She was really excited to go until about a week before the trip and then she got nervous about going because then she wouldn't be able to play with my hair or sleep in our bed on Friday night! These are very important thing to our little 4 year old. I convinced her that Erin had great hair to play with and then we let her sleep in our bed a few nights early to make up for the Friday night and then she was good to go. Now she is having so much fun that she doesn't even want to talk to us when we call! John and I were crushed but glad that she was having a great time. We certainly have missed her here at home and can't wait until she comes home tomorrow. It has been very strange to have her gone. But it was nice to be able to clean her room without her there to remove all of her things from the trash that I had thrown away. She hates that!

For the 4th John and I went to John's aunt's house for a BBQ with the family, came home and swam with the neighbors for awhile. We were asleep before 10:30. We must be getting old.

Payten made sure she got lots of attention this weekend. She gets mad now whenever you leave the room without her and is taking a strong liking to being held.

Keeping cool

2008-07-06T22:00:00.000-07:00

Down here there are 3 ways to keep cool:
#1: Stay Inside where there is air conditioning- BORING!

OR
#2: Swim at the pool. We love to go swimming and if Sydney had her way we would swim every single day.

OR
#3: Swim at the lake

We prefer either option #2 or option #3 any day! My little sister Morgan came to visit us last week and we loved it! Sydney totally adores Morgan and thinks that Morgan is her sister too. It was great to have her here and I wish we could have kept her longer. We were sad when she had to go home.

Our great neighbors, The McArthur's invited us out to the lake last week and we had a blast! My arms were a little sore from holding on to the tube for dear life since Jim has been known to be a crazy driver and I admit I am a big chicken but it was fun. John and Morgan tried cliff jumping for the first time and loved it. We can't wait to go again.

We finished the lake trip off with a trip through the drive-thru at In-N-Out Burger. Does it get much better than that?

Memory Tag

2008-07-01T14:03:00.001-07:00

Memory Tag

My friend Traci had this on her blog and I loved the idea. Please leave some comments. I would loved to hear from you!

1. As a comment on my blog, leave one memory that you and I had together. It doesn't matter if you knew me a little or a lot, anything you remember!

2. Next, re-post these instructions on your blog and see how many people leave a memory about you. It's actually pretty funny to see the responses. If you leave a memory about me, I'll assume you're playing the game and I'll come to your blog and leave one about you. If you don't want to play on your blog, or if you don't have a blog, I'll leave my memory of you in my comments or email you.

The Master Mind of Pranks

2008-06-23T13:10:00.000-07:00

John and I love to play tricks on each other. Okay, mostly it's me who loves to get John. Plus he's such an easy target sometimes I just can't resist scaring him or tricking him.

Last Sunday while I was taking a shower John thought he'd be funny and splash me with some ice cold water. Well he got me- and it was cold! The problem with John is that he didn't think things through. You see, I was the one to shower first and he had to shower after me. Obviously he was expecting me to get him back by dumping ice cold water on him. But I like to consider myself the master mind of pranks and I knew that I could do better. So, while he has taking his shower and watching the door for the water to come I was busy removing ALL of the towels from the bathroom. All that was left for poor John to dry off with was a single little washcloth! Neener Neener Neener, John! I got you good this time! Gosh, I was so proud of myself. Just typing this up makes me smile. :)

Give it some gas!

2008-06-20T15:31:00.000-07:00

The other day Payten was farting really loudly. It's pretty amazing how loud this little baby can rip 'em. Sometimes we call her our little Tootin Nanny. Sydney gets a big kick out of it and the other day I was telling her that Payten had gas. Syd's response was "Well Payten should give it to our car." Now only if it were that simple.

We are back from the hospital

2008-06-20T15:29:00.000-07:00

We are back from the hospital. Yesterday was a very long and exhausting day. We first met with the neurologist who really didn't any new information. He did however tell us that the location of most of the brain tumors are on the inside of the brain rather than on the outside of the brain which is good. The outside of the brain is where more "wires & signals" are so it causes more interference like seizures and learning disabilities. He also told us that most children who are most severely affected by TS (like retardation and seizures) show signs and symptoms within the first 6 months. He said it's so far so good since Payten hasn't had any seizures or big development delays yet. But like always they told us they couldn't predict the future.

They put Payten under a dark lamp and with the lights off they were able to detect a few white spots on her skin that look like ash leafs. This is another symptom of tuberous sclerosis. Once they discovered these spots John and I knew that she probably really does have TS even though we so badly wanted to deny it.

They did a renal ultrasound on her kidneys and it came back good. No tumors were found there. Yay! At least that's one less area for us to worry about, for now anyway.

The MRI went okay but was harder than the first surgery under general anesthesia. They let me hold Payten while they administered the sedation medicine through an I.V. That was tough to watch her slip away. She was fighting it too and wouldn't close her eyes. I felt so bad for my poor baby and it broke my heart to see her like that. Once she was in the machine they had me leave so I did not stay for the whole procedure. After that there was a min. 2 hour recovery but Payten would not wake up so we were there for much longer. While we were in the recovery room there was a little girl who was probably 3 or 4 who was coming out of the sedation also and she was just screaming. The sedation medicine makes you pretty cranky when you're coming out of it. I felt so bad for this little girl and I just sat there and bawled. I'm so emotional! I kept thinking that this is what I am going to have to look forward to with Payten when she gets older. She will have an MRI at least once a year.

The results from the MRI show that the tumors in her eyes are of most concern right now since they have the biggest possibility of becoming malignant. We will continue to follow up with the ophthalmologist. Payten is scheduled for another eye surgery in 2 weeks to assess how much growth the tumors have had since the last surgery. They will also do an echocardiogram that same day to look at her heart.

Happy Father's Day John!

2008-06-15T23:22:00.000-07:00

Happy Father's Day John! John is the best daddy in the whole wide world, just ask Syd. I love how much fun he has playing with Payten and Sydney every single day. He is so great to make special time for them and it makes me so happy to see them having so much fun together. John and Sydney are the best of buds and she has her daddy wrapped around her finger not once but twice- possibly even three times!

Today after church Sydney wanted to play the "Balloon Game" where you throw a ballon up in the air and you can't let it touch the ground. It was so fun to be silly. John and Sydney are doing silly stuff like this all of the time. Sydney loves it when John takes her out back and gives her and underdog on the swing or carries her on his shoulders. They go on bike rides together and John is nice enough to let Sydney stop off at each of her friends house and gets them to tag along. Pretty soon John ends up with a whole gang of little girls going along for the bike ride. It is so cute what a great dad he is.
Every morning before John goes to work he spends a little time alone with Sydney playing games while Payten and I sleep in. It is so funny to hear them out there playing. Sydney makes up some crazy rules and John always follows them. I love the special bond that they have and I'm sure when Payten gets older she will have a special bond with her daddy too.

Thank you for being such an amazing husband and dad, John. We love you so much!

Payten 3 Months

2008-06-15T22:04:00.000-07:00

Payten is 3 months old today! She has grown out of the newborn baby look, her diapers and most of her clothes too. She now weighs a little over 12 pounds and it's time for the next size. The last 2 weeks have been very scary for us but for Payten nothing has changed. She is still the same sweet baby that is full of smiles and loves to share them with everyone especially Mommy. She continues to be an exceptionally good baby and is still sleeping through the night! I am in heaven! We know that she can see but we're still not sure on how well she can see. Recently she discovered her hand and she's very fascinated by it which is a good sign and she loves to eat it this hand of hers. She also loves it when she's wearing a dress because she likes to pull it up and eat that too. She is getting better at holding her head up even with her big chubby cheeks- it must be hard! She loves to be held upright so she can see what's going on. She is very patient and calm and I think there must be a reason for her sweet personality..

We're not sure what the future will bring for her. For awhile I was really upset and worried about it. I called it being in my hole because that is exactly how I felt. Okay, I still am really worried but I'm getting better. I realized that I needed to enjoy each and every moment that we have right now instead of worrying about the future. I almost wish I didn't know that there was something wrong with her. I think the fear of the disease may be worse than actually dealing with it when it actually presents itself. At the end of each night I think, "Well, we survived another day. It was a great day too and I am so thankful."

This has been an amazing spiritual experience for us. For me it has put things into a different perspective. I realized how quickly life can change. This is a really tough trial to go through but I don't think I would trade it for anybody else's trials. I know we will get through it. It's so nice to have so much love and support from everyone around us. Even people we don't know that well have reached out to us. We have the very best neighbors and live in an awesome ward that has blessed us so much. We have wonderful friends and family who are always there for us. Without all of you we couldn't get through this. So thank you. There has definitely been an inner strength carrying us through this.

We took Payten to our pediatrician first thing Monday morning. We were comforted to hear that he has another patient in the area who also has tuberous sclerosis. The little girl is now 2 1/2 and seems to be normal. She has brain tumors like Payten, she has the white patches on her skin (their first indication of the disease) and has had only 1 seizure. It was nice to talk to this little girl's mom. She knows exactly what I'm going through and was able to give me a lot of reassurance. When I first read about tuberous sclerosis it sounded awful. Sometimes it still does. But then I started hearing more stories about people who go on to live normal, fully functional lives. No doctor has been able to tell us exactly how Payten will be affected by this so right now we are hoping and praying for the best. Either way she is so special and we will continue to love her and do everything we can to help her.

We will be returning to Primary Children's Hospital on Thursday to meet with the neurologist about the brain tumors and to have an MRI done on her whole body so we can get a better diagnosis. Then in the first week of July she will go back under anesthesia to get another look at the tumors in her eyes to make sure that it's not retinoblastoma. We hope we can get an exact diagnosis soon and be able to move forward from there. Please keep her in your prayers.

The Birthday Week

2008-06-15T14:51:00.000-07:00

The first week and a half of June is probably the busiest week out of the whole year for our family. I have a lot of catching up to do so this may turn out to be a very long post but the good news is there will be lots of pictures.

My Birthday was on the 5th, John's was on the 7th and Sydney's was on the 10th. It's a lot of birthday's for one week but it's fun. Luckily my sweet Grandma Elaine made a yummy chocolate cake for us and my mom bought Sydney had a princess castle cake and we celebrated all of our birthday's on the 4th. The 5th turned out to not be a great day. That was the day Payten had her first surgery and we were given horrible news about her eyes. So I chose not to celebrate or even acknowledge my birthday this year. That means I'm still a year younger, right? John's Birthday was on a Saturday but we were pretty much still in a state of shock with Payten to do any celebrating. (Sorry honey, I didn't even get you a present!) We did go see "What Happens in Vegas" for the second time. It is pretty dang funny and we love romantic comedies. Plus we also love popcorn so it was a fun day.

Sydney was so excited to turn 4. We held her party a Jumpin Jacks this year. It's a big warehouse with giant slides and bounce houses everywhere. The kids loved it and it was easy for me. An amazing lady in our ward made this awesome Cinderella Barbie cake for Sydney. It looked great and the frosting was the best I have ever tasted. I can not believe how talented some people are.

Sydney got this new scooter for her birthday. She had a little kid scooter before that had training wheels on it. She informed us that she is too big for that one and she wanted a "two-wheeler." She's pretty good at riding this new one and it scares me to death.

Sydney was also in the Primary Talent Show on her birthday. She danced in the show with her best friends. It was so cute. I hope the Primary does this again because all of the kids loved it.

Sydney and her friends also love to have "late nights." We don't allow sleep overs so this is the next best thing. The girls bring over their pajamas and get to play well past their bed times then go home. They love it and now that it's summer Sydney thinks that every night should be a "late night." This picture is from the last late night that was held at our house. The girls were playing house and the oldest one was the mom and the younger three were the babies. It was so funny to see them crammed into those car seats, eating popcorn, and watching movies.

Sydney loves playing house and could play it 24/7. It makes me laugh to hear the stuff they come up with. It is also a reflection of how I am as a parent. Sometimes Sydney will put her baby in time-out in the corner and demand an apology for being too sassy!

We're still stunned

2008-06-07T07:29:00.000-07:00

Wow. It has been quite an interesting week for us. We have been through a whirlwind of emotions and have had serious information dropped on us like a ton of bricks. On Wednesday we arrived at Primary Children's hospital and met with the eye doctor for the first time. He did an exam in his office and saw things that concerned him so he decided that he needed to get a better look at things by placing Payten under anesthesia. We came back the next morning for the surgery. That alone was heart wrenching but it gets worse. During the surgery the doctor came out and pulled John and I into the room that nobody ever wants to go in - the "conference room." In there the doctor proceeds to tell us that he has discovered tumors in both of Payten's eyes and she has a type of cancer called retinoblastoma. He said we needed to start chemotherapy and would meet with the oncologist the next day. We were completely stunned. We were in shock and I felt like a big elephant had stepped on my chest. It was not only the worst birthday of my life but the worst day of my life.

The next morning we were preparing to go back up to the hospital to meet with the oncologist and start chemotherapy when the doctor called back with results from Payten's CAT scan. He said that they discovered more tumors in Payten's brain and that because there are more tumors it couldn't be retinoblastoma. Instead they think that she may have tuberous sclerosis. Which is a rare disease that creates tumors all over your body. You could have them in your heart, your kidney, your brain and your eyes. So far we know she has them in her eyes and brain so we will have an MRI done to see if they are anywhere else in her body.

From what little information we have been given about this disease we know that it is not life threatening just dramatically life changing. We have been told that she could be mentally retarded, or have a learning disability and that she could have seizures. There is no cure or treatment for this disease and no one can tell us what to expect. Just that we will have to wait and see. From here we will need to meet with the neurologist about the brain tumors, the cardiologist for her heart and also a kidney specialist. Because this could be a genetic disease we will also have to meet with a genetic specialist. The eye doctor will continue to monitor the tumors in her eyes but did not tell us if any treatment was available.

Payten is doing fine. She is full of smiles that melt your heart and she is still the same sweet baby. The doctors will call us on Monday to let us know when we will need to go back to the hospital. So for now we will just take it one day at a time and deal with the challenges as they come.