Twinkle Twinkle Little Star

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

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

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

Holland

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!

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

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

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.