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Friday, October 31, 2008

Our Halloween crew!


Kiss my lucky egg!



Thomas had so much fun with his costume this year! He was Sanka from "Cool Runnings"
Doesn't he look great with his spray on tan? people had a hard time recognizing him!
He had a great time getting people to kiss his lucky egg. until a girl smashed it...thank goodness it was boiled!

costume fun!


Jac dressed up at school 80's style. Bring back any memories ladies? Look at that hair!!! She really should have been a teenager during the 80's! She's a natural.

Jac went to a party tonight dressed as a palm tree...she is sooo creative! I must admit the 80's hair was my favorite though!

Trick or Treat!



Isn't Emily the cutest lady bug ever? She had such a fun day. She woke up singing "It's Halloween, It's Halloween" over and over. She kept asking me when it was time to go trick or treating.
April West organized a group of Emily's friends to go to homes that were pre-arranged, knowing they had to be healthy. They went at 4:00 so there wasn't anyone else around. It was so fun for her to go trick or treating; she loved every minute of it!
Lisa Hartle called and organized a group of about 20 kids to come(all healthy of course) and as they came to the door they put a piece of candy into Emily's bag and then we put one in theirs! It was such a fun Halloween. Emily felt so loved. She even had Kaden Struthers tell her, "Even though you have hair all over your face I don't think you are ugly!" He said it so sincerely, you could tell he was really trying to give her a compliment!
Once again, our ward proves to be so amazing!
Thanks for making this the best Halloween ever!

"Good Things Utah" Clip

Happy Halloween!




I walked out my door at 5:00am this morning to run with my great friends Leesa and Jessica. Leave it to Leesa to enjoy every part of this Holiday! We laughed so hard when she walked up! I am sure every car that passed us had to do a double take!
I just had to take a picture of 3 crazy friends who run in the dark chatting and carrying on like it's the middle of the day! We call it free therapy...I guess we do lose some sleep to go this early but the payback "priceless"!
It is so great to talk about our lives and get advice or just to feel validated with our frustrations of the moment.(Matt is also grateful I have more than just him as a sounding board!)
Even though we run in the dark I feel so lifted and filled with light when I come home. It's a great way to start the day.
THANKS for being such great friends. I hope we will be running together for many years to come!

Thursday, October 30, 2008

Good Things Utah



Emily and I were on Good Things Utah today. Emily was so excited to go and even though she got nervous right before I was very proud of her! We kept her mask on until it was her turn to go on. I am hoping she will not have any ill affects from it.
A company named Sargent Steam gave one of their steamers to us when Emily was a baby to help us with cleaning our house. We use it every day it is such a blessing! They made SCIDS their charity.
There is a new little boy named Carter up at Primarys who was just diagnosed with SCIDS. He is starting chemo tomorrow. Sargent Steam presented a steamer to his mom, Malory on the show! It was fun to be there to say thanks so them for their kindness!(Even though I hate being on TV!)---I think it adds 20 lbs. don't you?!

Creating is so much fun!



For the last 2 days Emily and Thomas have been creating fun little figures with plastic beads that Teri Allred brought over. It's so fun to watch them create!!!

Monday, October 27, 2008

Day 73

Wow, I can't believe it has been 73 days since transplant. I asked the doctors what exactly day 100 means. It is actually an evaluation time where they take more tests and look closely at how everything is going so far. For people who don't live close to Primary's it is the time when they usually get to go home for the first time. For us, things will be pretty much the same but we will keep with the countdown just for fun anyway.

Emily is doing great! Her newest love is learning about Helen Keller and Abraham Lincoln. She loves to google pictures of them and learn about their lives. It is scary how quick she is on the computer. I have to watch her so close!
Teri Allred helped her find some ancestors on the genealogy website today which she can't stop talking about either! It is fun to see her get so excited about learning!

She is definitely getting hairier with each day. I see her every day and it is still shocking to see how fast it is growing....everywhere but her head! She is finally getting some, but most of it is growing everywhere else. She yelled to me today "Mom, come and see this, I even have hair on my knees! You're not supposed to have hair on your knees are you?' She is our furry little monkey. The cutest one you'll ever see!

Just keep swimming....Just keep swimming...



Jac had her first swim meet of the season on Friday and Saturday in American Fork. As you can tell she has a great time with her swim buddies! I hardly even saw her between events!
Jacquelines coach chose her events which she was not very happy about. She did the 200 freestyle, 200 IM, 100 breast and the 400 IM. (For those of you not in the swimming world IM means every kind of stroke!) These were really tough events and Jacqueline showed her true colors by not giving up. She did a great job. I think she even surprised herself with how good she did!
It is hard not to have all of us there(I am not so sure how broken hearted Emily and Thomas are about not going!) We are so used to going as a family but now we have to divide and conquer. Wait till next year Jac...we will all be there cheering you on again. (I am sure you can't wait!)

A perfect day for BYU football!


Matt and Thomas had an amazing fall afternoon at the BYU football game. They had great seats thanks to the Madsens who were so generous in giving their tickets to them. Two guys enjoying a "cougar dog" sunshine, and a great game. The kids love it when they get one on one dates with Dad!

Wednesday, October 22, 2008

Pumpkin Fun!







On Monday, Matt took the day off with the Kids and we had a great day together as a family! We found an awesome pumpkin patch where everyone got to pick their own pumpkin from the ground!
We took them home and while the kids carved and painted, Matt made fresh pumpkin soup that was very tasty and I made pumpkin cookies that were pretty good too!

Emily thinks that I am pretty silly for leaving my pumpkin plain. She is trying to convince me to let her make it look better! We know the kids all got the creative gene and it didn't come from me! Thank goodness for Dad!!

Sunday, October 19, 2008

day 65



We had our monthly family home evening with the Whitings tonight at Grandmas. Lately it has just been us and Grandpa and Grandma because the Parish's have been sick. They were able to come tonight and Emily was so excited to finally be able to play with her cousins!

The dress Emily is wearing was made by Nicki who just turned 12 last month! Even though she is 5 1/2 yrs older than Emily, Emily is like Nicki's little shadow whenever she is around! She has always loved to be around her, maybe because she is so creative, always coming up with fun things to make, do, or act out. There is never a dull moment when Nicki is around! One time she made "play dough" out of water and flour for Emily. It was EVERYWHERE and I had to pick it out of their clothes!

She is always thinking of something new. She really is amazing how she never seems to get discouraged when something she tries doesn't work...she learns from it and tries again! I love that Emily loves her so much...she is such a great example!

It was great to be together tonight. It is funny how you always love your family but you don't realize how much until you can't be with them for a long time...we really take each other for granted! Now we just need to get the rest of my family to move back to Utah so we can have FHE with everyone! At least we are lucky to have all of the Heaps family around! (They must love us more! ha ha)

Sunday afternoons are filled with angels singing..Sister Holladay and Emily! It is so fun to listen to them singing. Emily loves to sing and play Sister Holladay's guitar! It is so great that Emily doesn't have to miss out on her primary lesson or singing time.
The young men have been coming in to give Emily the sacrament after church. There is such a sweet spirit when they come. We will forever be grateful for their willingness to serve our family in this way! Even though Emily doesn't need it. She still feels the void when she doesn't get it! It is so nice that she is able to enjoy church at home. We have an amazing ward!

Pizza anyone?

Who needs restaurant pizza when you've got a pizza stone and an amazing chef...well, actually an amazing recipe! We have been having fun trying out our pizza stone that Wade and Monica gave us! It has been a lot of fun.

Emily said "Wow mom, I didn't know you knew how to make restaurant pizza!"

Hearing this from Emily tells you it must be good. We are also enjoying the pressure cooker they gave us. I feel very domestic! I am actually cooking meals. Yes, you should all be very proud of me!Ha Ha

Thanks Whitings! Next time you come to Utah guess what we will be having!?

Thursday, October 16, 2008

Emily is home!

Emily got to come home Wednesday but not until she did her very favorite thing...Hospital Bingo!!! She was so excited to play; she even called in jokes for them tell over the TV.
As with all vacations...it is always great to be back home! Home is her favorite place. She told me last night how she loves to be home most because our family doesn't have to be apart. I agreed!

A glimpse of the wonderful staff at Primarys

This is a big Thank you to all of the wonderful staff at Primary Childrens. As you can see, they are always doing their best to make life at the hospital the best it can be! We are so grateful for everything they have done and continue to do for Emily. We are so blessed to have such dedicated, fun, patient, and loving people who have chosen to do this for their occupation.
Thanks everyone!!!
Joan was Emily's nurse on the BMT day. I think she went pretty crazy with Emily's needs and then Jacqueline's on top of that. I am sure she was very worn out. We are very grateful for her hard work and willingness to put up with all of us!

All the nurses and staff saying goodbye to Emily on her last day of her long stay at the hospital. We couldn't have done it without their help!
Emily loved to hang out with her nurses! She loved it when they had time to play.

The music therapists were such a fun part of Emily's day! They had a huge variety of instruments. It was fun to watch! She always looked forward to their visits.
This is Mike, the Child Life Specialist. Emily LOVES Mike! He always stopped by to see how Emily was and sometimes he would even stay and play. He also helped Emily get her Art contest going. Emily was excited to see it still up when were there this week!

Irish has been around since Emily was a little baby! He was there for Emily's first transplant. Emily always talks about crazy Irish, "He doesn't know how to count!" He loves to tease all the kids with fart machines and goofy jokes. He teased Emily changing her BYU sign say UofU. When ever Irish was her nurse you had to watch out! They even got in a syringe water fight once! He has such a great way of helping the kids enjoy their long days in the hospital!

This is the sweet nurse who helped make shaving Emilys head a fun and positive experience! She handled it so great. She even gave me comfort out in the hall so I could be brave around Emily!

Laura the tech is what Emily calls Laura. Laura is always bringing coloring pages and fun toys to play with. She would tell Emily that her toys come alive at night. Emily started to call her CRAZY!!!

It was so cute when we got to the hospital on Monday and she said,"I hope Laura the tech is here because I am her very favorite patient! Mom, I really like her!" Leave it to Laura to let Emily feel so loved and important. Thanks Laura!

This is nurse "Caffeine" actually it is Kathleen but Emily struggles saying her name! She always greets Emily with a smile and big hug. She usually wears a monkey light around her neck that she named Emily because when Emily was supposed to be feeling horrible during chemo treatments etc. she was always jumping on her bed and being our little monkey girl!

Tuesday, October 14, 2008

NO FEVERS! YAHOO!




When Emily's doctor and nurse came in this morning she told them she was on a hospital vacation; the doctor said, "Well that's no fun because there is no swimming pool!" The nurse gave him quite the look and told him what a great comment that was! I just looked at Emily and said, "Oh yes there is...the BATHTUB!" She liked this and decided to still enjoy her vacation!(Doctors know the best things to say don't they??)

I asked her today what her favorite part of the day was and she said, "My hospital vacation! Then she said she loved having Mary come to visit and Grandma and Grandpa Whiting. Grandpa even came in a mask!"(he has a little tickle in his throat and wanted to be safe.)This was so wonderful for her since the first thing she said to me as we were driving up here yesterday was, "Who's going to come and visit me?" I told her I didn't know and that it isn't easy for people to come up every time she is here. She didn't agree with me and begged me to call people anyway!

Emily was so sweet and loving all day. She enjoyed watching TV and coloring to her hearts content. It is amazing how positive she has been.
It looks like we will be able to come home tomorrow and she is very excited! She made sure to add this to her prayers tonight!

It is never fun to be sick but she this one has been very short lived...we will take it any day!

Monday, October 13, 2008

Our Hospital "Vacation"



Emily woke up this morning coughing about 5:30am and couldn't go back to sleep. She started to get a fever about 8:00am and even though I tried to ignore it hoping it would go away, we were on our way to the hospital by 10:00. Emily was not happy about this but she new she wasn't feeling well. Surprisingly she has handled this trip so much better then the last. She realizes that she needs to be where the doctors can get her better.

Matt told her how lucky she is because she gets to be on a "Hospital Vacation". She laughed but has kept such a positive attitude throughout today!
She hasn't had a fever since this afternoon and we are hoping it stays that way. She has to stay for a minimum of 48 hrs. and then she can come home if she is not fevering and is doing well. Keep your fingers crossed!
She has seriously been such a trooper. She has been laughing and singing and teasing. Out of the blue she will stop and say "I miss Daddy, I wish I were home with Leo" I tell her I wish we were home too! After she states how she really feels she perks up and tries to enjoy what she is doing! I have been so impressed!!!

I've got to go...she is shivering in her bed and needs me to snuggle with her!Goodnight everyone!

Saturday, October 11, 2008

A great big thanks to all of you!!!!!

If there was one word that could describe the concert last night, it would probably be WOW!!!! As we sat there listening to the amazing musical talent I was in awe that so many people would be so willing to help our family; many of which we have never met. I kept thinking how sad I was for anyone who might have missed this special night. It was so incredible! It was truly a concert of stars! I just wish I had taken pictures! We were so amazed by it all; we weren't thinking clearly!

As we were getting ready to come to the concert I received a phone call from Emily's babysitter saying she was sick. I phoned the neighborhood for a sitter but everyone was busy or sick. I called our dear friend Megan Gazaway and she was so quick to come to our aid. She not only watched Emily but helped with the display in the hall. Thanks to Megan's great mind she talked Matt into letting her bring Emily in at the end as a surprise. He told her to go ahead but he wouldn't tell me so I wouldn't be worried.

After the last song as Emily walked up onto the stage with flowers for Tamara and Ruth, (the two incredible women who planned and put on this wonderful concert) I thought what a perfect and appropriate way to end the night. Emily was able to see all the people who worked so hard to put on this amazing concert for her and she was able to see all the people who came to show their support and love. It made her feel so good. She loved being able to be a part of this night in a small way even though she had to wear her mask to do it!

She stayed on stage as they sang "I am a child of God" which is her very favorite song. It was so beautiful!

I don't know if we can ever express how grateful we are to all of you for supporting our family in so many ways! People ask me all the time, "How do you do it? How do you stay so strong?" My answer comes very quickly, "All of our neighbors, family and friends!" There is NO WAY we could do this on our own. Our Father in Heaven knows this. He sends angels to help us through rough times. Our family has learned so much from your kindness and generosity. You are angels in our lives, angels that give us so much hope and strength. We know we are not going through this alone!
How can we ever repay you? The only way we can think of is to strive to take your examples and give back in any way that we can!

It is amazing what a difference people can make in someones life. We know this first hand! Our lives will never be the same. I am not sure we deserve so many blessings but I do know Emily does so I guess we get to receive them too! We come as a package deal you know.

I wish I was as good with words as Matt; but I hope you can feel my sincerity, love, and gratitude when I say how amazing all of you are!
It is very overwhelming to walk into an auditorium full of people who are there for your sweet daughter who has been through and is still going through so much. It brings tears to my eyes just thinking about it.
We love you all!!!THANK YOU! THANK YOU! THANK YOU! THANK YOU! THANK YOU!

- Jill


After reading Jill's entry that expressed our gratitude for the benefit concert, tears filled my eyes as I thought back about the night. Every morning and each night since then my thoughts have been on the feelings surrounding the concert. Something is being burned into our hearts that we will remember forever more. There's a core lesson that each of you are teaching us and that the Spirit continues to reinforce within us. I believe for me the lesson within the burning is the power of unity. We've been first hand witnesses to the burden's that have felt so much lighter because many people have come together, given what they could, and in the whole made a big difference.

We learn in the scriptures that Zion will be the culmination of people freely giving their time, talents, and treasure. An accomplishment that will not come without His people being unified. On Friday night I looked around and saw a group of people giving their time, talents, and treasure to help a family in need. It was a little piece of Zion, a little piece of Heaven on the earth. Zion isn't so far away after all!

Thank You!!

- Matt

Friday, October 10, 2008

Channel 5 Report on Emily

Video clips of Emily

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Thursday, October 9, 2008

Day 54

I took Emily to Sego Lily (her elementary school) this afternoon so she could have her picture taken for picture day and have her picture with her classroom photo. They take all the single pictures of the children and put them on a sheet to show who was in their class. Anyway, she was nervous to walk in with her mask but soon relaxed when there were very few people around.
After her quick photo we put the mask back on and she asked if I would show her Mrs. Moores room. When we walked into the doorway all the kids started to yell Emily's name and run over to her! Mrs. Moore called them back to their seats and let Emily say "Hello" to everyone. I sat there with tears in my eyes. It was such an amazing experience for Emily to see her classmates so excited to see her.
She wanted to say a quick hello to her kindergarten teacher, Mrs. Cullimore; when she walked in, Mrs. Cullimore was so excited to see her and gave her a big hug!
My heart is so full as I write this because Emily felt so loved and cared about today. I am so glad it turned out to be so wonderful! She was beaming!
Channel 5 News came to our house to interview Jac, Emily and I this afternoon. They are planning on running a clip showing her 6 years ago when they did a clip on us and now. It should be fun. Emily is very excited! It will air during the 4:00 and 5:00 news hours tomorrow night. Not the most convenient time but we were ousted by economy troubles tonight! Emily kept asking "Whats economy?" She was not happy she has to wait a whole day to see herself on TV!
It is so funny because when Jacqueline was 6 she wanted nothing to do with being on TV. She hated stuff like that! She was a good sport today though and answered all the questions with confidence even though it still is not something she would choose to do EVER! She did it for her Sis.

Wednesday, October 8, 2008

Leaf fieldtrip


We went on a leaf "field trip" today! We started at our next door neighbor, Shelly Beatty's back yard. Emily found lots of different leaves for her leaf projects. We even went to Grandma and Grandpa Whitings to see if Orem had different ones then Lehi.(Of course Lehi had the best ones!)Ha Ha She loved looking at them through her magnifying glass.
Emily loves to learn! It is so fun to watch her explore her little world.
When Matt comes home she tells him all about the books she has been reading and leaves a stack of them by his bed so he can learn too. She is very interested in knowing all about animals and their different habitats etc. I am so glad she knows how to read, it really opens up her world in a huge way!

Fun in the Mountains!



Conference weekend gave us the perfect opportunity to have family time! We took a ride in the canyon Sunday evening and found a beautiful secluded trail. It is always so fun to get out and enjoy the fall leaves.