Clinc Day with the family!

Jacqueline and Thomas came with us to Emily's clinic appointment today! It is always fun to have big brother and sister come along.
Emily's counts are coming up (slowly but surely). Her ANC is at 1700 and her WBC is at 3200. Her weight is about the same at 16.9 kilograms. Emily's nurse decided this was just fine. She feels like we need to give Emily some more time to adapt to eating more...I wholeheartedly agreed of course! It is much easier to give her a pill (even though it makes her scream at very random moments in anger...I am hoping this side effect won't last too long) then to stay up at night feeding her through a tube. I am one who likes my sleep.

We asked if it would be OK to take her to a restaurant. We got the green light as long as it is a CLEAN place with fresh food and if we are away from most of the people in the UNCROWDED restaurant. We chose PF Chang's (Emily likes the rice) We realized while there that this was the last restaurant our family went to before she went into the hospital!

Emily was very nervous...it is a really good thing that we can introduce her slowly to new things. She is just so scared of getting sick! We told her how brave she was being and she eventually relaxed. The best part of the meal was the fortune cookies. Emily was the first to open hers and we just HAD to show everyone! It was meant to be!

Matt took us up to his office on the 19Th floor of the Church office building. The kids have been 'dying' to see it(as Emily would say) but we haven't had the chance. We have to go through security so it isn't really convenient. The kids had a great time rummaging through all of Matt's things, including his candy drawer... no wonder he never has a sweet tooth at home! The favorite was looking out the window with binoculars to see the amazing view of the Salt Lake Temple. What a wonderful thing to look at every day.

Matt is definitely in his element working with the church. Everyone loves him and he LOVES his job! He is always so happy when he comes home. He has never been busier yet has never been more content and happy at the same time. He loves being able to serve the Lord and get paid for it at the same time! Sometimes he says he feels guilty for getting paid to do his job; but don't worry, I assure him that it is a good thing!

We had such a great day today being able to spend time together as a family...it's amazing how easy it is to take these simple things like going out to eat every once in a while, or going to Dad's work for granted. It becomes such a priceless gift when it has been taken away. We have had a great opportunity to see just how blessed we are. Our gratitude for the 'little' things has grown in leaps and bounds! It has been amazing to look at life with 'new' eyes; realizing once again what REALLY matters!(I guess we keep needing those reminders!)

Primary Christmas program

Last night Sister Holladay put on Emily's Primary Christmas program. The music was so beautiful! She even brought Bill Parr and Catherine Stambaugh in to sing who have amazing voices! It was a wonderful evening celebrating our Saviors birth.

This was a bitter sweet moment because it was also Sister Holladay's last week as Emily's teacher. We are all going to miss her so much. Emily wants me to write that we are going to be SAD because she brings the spirit in! We will always remember Sister Holladay.

Emily had a great time decorating Leo with our Halos! She wasn't too happy when she coudn't find them this morning...hmm I wonder what happend to them!

We feel so loved!

I have to laugh because I WAS on my way to bed at 10:00 tonight when we heard a very loud knock on our door. THIS is what I found waiting!

We want to thank all the people involved with putting this basket together. We can tell you know us well! From the Clorox wipes (I NEVER use them...ha ha), the coloring books and markers, the pop tarts and yummy cereal, and all the darling cards...EVEN a BYU one! (Thomas' favorite of course!) Let's just say we will be having quite the feast this coming week. I am going to even cook my very first turkey (any tips would be greatly appreciated!)

I am so touched at the outpouring of love that is being shown to our family. I can't even describe in words how much it means. I have tried before and I will keep trying because it is one of the most humbling experiences Matt and I have ever gone through. We have recieved gifts of love from people we know and those we have never even met!

We WILL pay this forward someday....you have all taught us how wonderful it feels to be remembered and cared about. Not only does Emily feel loved but you have made sure to include our whole family, realizing that this is a trial ALL of us are going through!

There has been so much talk of people having a smaller Christmas this year. For our family, it has been just the opposite and it has all come from people who are willing to sacrifice THEIR needs and wants to give to us. We have never been the type to go into debt for Christmas. It was so nice to be able to get a few things for our kids without feeling guilty that we weren't spending it on medical bills.

I will always cherish this Christmas. It will be one we will never forget. It has been life changing for all of us. Thank you for helping us learn to be served (which is a VERY hard thing to do), and for teaching us HOW to serve!!! None of you are looking for recognition, you have all done your service so quietly, not caring about being thanked openly. I hope you are reading this and know that we are forever grateful for all you have done for us!!!

We feel so blessed to have you all in our lives. We pray that you will know how much we appreciate you and love you all.

THANK YOU! THANK YOU! THANK YOU!!

Ironic?

My mom says that blogging is frustrating. I consider this ironic since she stayed up till 2:00 am doing our Christmas post. She must secretly enjoy it deep down in her being. Hmmm...

-Jackie

Christmas fun

We had a wonderful Christmas Eve dinner with Grandma, Grandpa and Uncle Justin. After dinner we had our traditional reading of our Saviors birth. We realized that ANYONE can act out the Nativity! Grandma was supposed to be the sheep (Emily chose what parts we had) but we let her be a shepherd when she got a charlie horse as soon as she bent down! As you can see, we have many talented people in our family. It was one you are sorry you missed!

The kids were so excited when they saw their presents. We can't thank Santa's elves enough for helping to bring so much joy on our children's faces this year. It was fun to spoil ALL of them and to see the looks on their faces...it was priceless!

When we talked tonight about our favorite part of the day, Jacqueline said how neat it was for her to see how many people love us. she said, 'It is a great reminder that we are never alone.' Emily said 'Christmas is not about getting presents, it is about giving' We all agreed and talked about the people who have given us such wonderful examples and inspiration to GIVE!! It always feels so wonderful to do things for others!

We enjoyed our very SNOWY Christmas day hanging out in our PJ's, shoveling snow, having a visit from Grandma and Grandpa Heaps and then playing games. By the way, don't buy 'You gotta be kidding'...definitely not our favorite! We did enjoy a game of Sequence and then finished the night watching one of our favorite Christmas movies, 'elf'. What a wonderful day it has been!

MERRY CHRISTMAS

Christmas Eve Cookies

Every year the kids leave cookies for Santa. It is always fun to look back and see how much they have grown!

Santa Comes to visit!

We had a surprise visit from Santa and one of his elves on Monday. What a special treat! Emily was so excited, she loved sitting on Santa's lap and getting to peak at Thomas and Jacs presents!

Thomas got to choose to have his gift or Jacs, he decided polka-dot PJ's wouldn't look as good on him as his big Sis!

It took some time for Jac to get over the fact that Santa wouldn't be bringing her biggest wish this year...Maybe in about 10 more years!!!!

We had so much fun with Santa...We are so grateful to the 'elves' who made it all possible for us to have this special visit. THANK YOU!!

Bring on the SNOW!

Today it SNOWED and SNOWED and then SNOWED some more! Jac and Thomas shoveled our driveway and when we came back a few hours later our van got stuck trying to park it in the garage! It was the fun kind of snow to shovel so I didn't mind shoveling while the kids built their snowmen and snow caves. What a great way to start our Christmas vacation. Sledding, here we come!

Enjoying the lights at Temple Square

We had a great time up at Temple Square listening to Thomas sing and walking around. The kids enjoyed seeing the Christus and all the amazing artwork in the visitors center.
We loved walking around seeing all the nativity scenes from different nationalities. One of the most beautiful sights was Joseph Mary and Jesus placed in the middle of the reflection pool. It was definitely worth braving the cold!
What a great way to enjoy the Christmas season!

The assembly hall had great acoustics! Thomas (and of course, everyone else) sounded so wonderful! As you can see, he really enjoyed himself!

Lights at Thanksgiving Point

My friend Phil invited our family on a private tour in the Thanksgiving Point Trolley to see the lights. There were 1 million lights to see! Emily's friends, Cambry and Mia came along too. The kids favorite part was seeing the reindeer! We didn't stay out there long because it was VERY COLD!!!

We were very happy to come back home, get into comfy PJ's, enjoy the pizza Lisa Hartle surprised us with and watch a movie...a perfect way to spend a cold winter night! (especially poor Matt who spent 2 1/2 hours traveling home from work. It wasn't too bad since he was on a bus working on his computer...the bus is so great!)

Emily's Class Christmas Party

Emily went to her 1st grade Christmas party today. She was SO excited! All morning she begged me to let her go NOW! When Emily walked in, everyone was so excited to see her! She was nervous at first but I was amazed at how quickly she warmed up, relaxed and had fun with everyone. Mrs. Moore is such a wonderful teacher. She did a great job prepping the kids and helping Emily to feel just like everyone else.

The kids have been writing their own stories, illustrating them and sharing them with the class. Mrs. Moore had Emily read hers to the class. She told me after how scared she was...I was so impressed that she DID it!

The kids had a fun gift exchange and then enjoyed some free time to do miscellaneous things. Emily was having so much fun I let her stay for recess too. It was hard for her to leave. She really misses going to school and seeing her friends.

I am glad she went today. I think it is good for her to know that she has not been forgotten and that she has friends that love her. I don't think she will have a very hard transition when she goes back. She might start to miss Leo sitting on her lap during school and having a much shorter school day but I am sure she won't want it any other way! I will probably be the one wishing she were home again. I have been very blessed to have this time with her.

Thomas' beautiful solo

Thomas' Choir Concert

Thomas has sang with the Lehi Children's Choir for 5 years and is still loving it! The Christmas concert was at the American Fork Tabernacle. He did such an amazing job on his solo. His quartet sang 'O Holy Night'. Grandma Whiting kept saying how she wished Grandpa Wright could hear this...it was his favorite song.

We are so blessed to have Thomas in our home. He fills our home with sweet(well most the time!) sounds of music that lightens our hearts.

We decided to take Emily with us so she wouldn't have to miss her big brothers concert. She wore a mask and we went up onto the balcony where we were away from the crowd. Thomas put her on his back afterward and gave her a tour back stage and introduced her to everyone. He made her feel very special! She definitely shares her brothers love for singing and performing. It is tender moments like these that make being a mom worth it!

After Thomas' performance at the Joseph Smith Memorial building, Matt and Thomas enjoyed spending the afternoon touring temple square and enjoying all the beauty. I am sure they enjoyed having some time away from us girls! They love doing things together!

Matt has always enjoyed playing and watching sports but now he does it a lot more because Thomas loves it as much as he does. It just isn't the same when your cheering your team on all by yourself. It is so fun to watch them together! (I guess I just don't get excited enough!) Thomas is definitely our Favorite Son!!!

Emily's clinic update

Emily LOVED going to clinic today...She got to pick out a stocking Full of fun little toys and games. Are you surprised she picked the DOGGY one?

Last week Emily started some new medications. One of them was to help get rid of the lump on her neck; it didn't work. What it did do was give her diarrhea! We are stopping this med and will be going in soon to have it removed.

As you all know Emily started Megase, the med to help enhance her appetite...it worked! All week she has been eating really good! It is so weird to hear her say "Mom, I am hungry" or "Mom, I want Costco pizza(AGAIN!!)" She has also been very ENERGIZED. She puts the energizer bunny to shame! It has been days since I have seen her laying on the couch not feeling well and exhausted. She wakes up singing "I have energy" "I don't need a feeding tube!" "Leo, you need to eat or you will have to have an eating tube!"..."Mom, do dogs ever get feeding tubes?"

At night she says, "Mom, how can I go to sleep? I have too much energy, I can't turn it off!" (Last night we all went to bed and she was still in the kitchen having a SNACK!) It is fun to see her so happy and full of extra energy!

She went to Cambry and Mia's house yesterday and Angie told me how shocked she was when she walked downstairs to see a huge mess! Emily hasn't played like this in months! (Thanks Angie for letting her make the mess at YOUR house!)

When Emily got on the scale today I was shocked when she was 16.7 kilograms, which is a loss! The doctors came in ready to tell Emily she was going to get a feeding tube in TODAY. I told them NO WAY! She has been eating, but everything is going right through her because of the Augmentin. After drilling me to make sure she really has been eating, they agreed to give her another two weeks. Let's keep our fingers crossed!

They could tell she was a lot happier and did confirm that the Megase can make you 'Manic' as they put it, meaning her high energy is definitely coming from the medication. She has also been more on edge this week, yelling out and getting upset over things she usually doesn't. Matt kept telling me it was the medicine! (I hate side effects!) Thank goodness it hasn't been that bad but I do hope she doesn't have to stay on it long.

Emily's Gymnastics Performance

Tonight Emily had her private gymnastics performance. She has worked so hard during these last few months to be able to move her stiff body the way it used to, before her transplant. Heather is such an amazing teacher, always encouraging and pushing Emily to do her very best; even when it isn't easy! The look on her face should tell you how great Emily felt tonight! She did such a great job! Way to go Em!

Heather Austin and Emily

Heather has been one of Emily's Angels since she was just a toddler! She started teaching Emily when she was 2 years old. Heather has always taken such great measures to make sure everything is clean and disinfected for Emily; giving her private classes when she was in isolation the first time around as well as now! Emily looks forward to her Monday mornings with Heather. Her smile is always a mile wide as she "stretches" (flexibility does not come easy...she is MY daughter you know!) and works on her tricks. We will always be so grateful for the love, patience, kindness and encouragement she gives to our little girl! She has given us a priceless gift that we will always treasure!

It's amazing what a difference 6 months makes!

Emily's Cyclosporine Hair

This is our HAIRY LITTLE MONKEY! You may think she is silly but Emily LOVES being hairy! she loves to have a white or brown mustache when she drinks her milk or chocolate milk! The other day she was showing a little girl her hairy body who has just started chemo treatments. The girl said "I don't want that!" Emily said, "I love it!" She couldn't understand why anyone wouldn't want to be "furry" like her! She tells people all the time to feel her Caterpillar eyebrows. She even loves the hair that sticks out of her nose! (Now that's where I would have to draw the line!
It's a great lesson to us all of LOVING our bodies!-Thanks Em

Angels watching over us

I read this scripture today, Ether 12:6 "Dispute not because ye see not, for ye receive no witness until after the trial of your faith."
This summer when we were contemplating what to do for Emily I wanted so badly to know what the outcome would be with our decision.(Doesn't everyone?) We had to go with our hearts, knowing that the spirit would have to guide us on this one. Many times during the last few months I have asked Matt to remind me that we KNEW this was the right thing to do. It is amazing how you can forget if you don't consciously keep it in the front of your mind. Satan loves it when we lose focus!

We have definitely had to step into the darkness trusting, believing and hoping that everything will work out.

Even though it seems we are walking into the dark for who knows how long, I have realized once again that the Lord NEVER lets you walk alone. We have had so many Angels in our lives I can't even begin to tell you all that has been done for us.

We received a letter in the mail this week with the return address "Angels watching over you everywhere, USA" I showed the kids and we all felt so LOVED! There really are angels watching over us!

It seems whenever I start feeling stressed about things someone comes to our aid. A phone call asking if they can watch Emily, a note of comfort, some money to help with bills. I could go on forever and I know you have all heard my ramblings before but I would feel very ungrateful if I didn't once again thank ALL of you for listening to the promptings the spirit gives and acting on your feelings.

I know we have a rough road ahead but with the Lords sweet tender mercies he continues to remind us that we are not going through this alone.

THANK YOU for being our ANGELS!!!

Hale Center Theatre

We had a really good time at the Hale Center Theater tonight. We saw a PROFESSIONAL PLAY!!!!!!! We saw A CHRISTMAS CAROL. The original version by Charles Dickens no more no less. Christmas past Christmas present and Christmas future and the hole gang. The stage was amazing it would go up and down and all around. They also raised things like a desk or fire place and then down they go. We took some pitchers that my mom will blog (I am Thomas not Jill.)because shes not home yet I don't have any pitchers. The play was really cool.

Thomas

A great night at the theatre

Emily's lump

Clinic Day

Emily is 16.9 kilograms which is down a bit from last week. We are going to try her on some medicine to help stimulate her appetite. I thought we has all ready tried this but apparently the medication she was given before was just to help get things "moving" through her system!??? And why was she taking this? (I am realizing I really need to be on top of what she is getting and what exactly it is for!) If this doesn't work she will be getting the "button" which I am hearing is NOT fun! Let's pray the medicine works!

Emily still has a lump on the back of her neck that is not going away. The nurse talked to the Infectious Disease doctors wondering if it could be the same kind of lump she had when she was a baby. (She had a form of tuberculosis which she ended up being in the hospital for a month and 6 months of heavy duty antibiotics to get rid of.) Anyway, they asked if she had problems with ear infections. Funny thing, she has one right now! They said it could be a pocket of infection in relation to her infection or may even be the cause of it. Who knew?

The plan is to have her on heavy duty antibiotics for a week. When we go in next Wednesday, (yes we have to go back in a week!)we will see how it is looking. If it is not getting better they will go in and remove the lump and send it off for a huge list of tests to see what is going on.

On a good note, Emily's ANC count was at 1500 again today; even though it didn't improve, it didn't go down so we are very happy about that!

Well, here's to another week of hoping to get rid of that lump, ear infection AND of course, LOTS AND LOTS OF EATING!!!

Heaps Family Christmas Party

We had a great time this year at our Heaps party. We enjoyed great food, great company and Lot's of laughter and fun!

As you can see, we all missed Emily. She wasn't too sad though because she got to spend the night with Grandma and Grandpa Whiting decorating a gingerbread house and eating her favorite food of the moment, Chicken Alfredo!

Isn't sibling rivalry fun?!

We had a great time learning new and "interesting" things about everyone during one of the games. We found out that Alice loves to pee in the shower, Dave likes to pee in the sink, JaAnn gags on her toothpaste, Marianne flunked kindergarten, Halley is right handed, Matt isn't the stinkiest in his family and many other very insightful information!