EMILY'S EATING CONTRACT!

I was changing the tape on Emily's NG tube last night. She hated it of course and it started coming out. I tried to push it back down through her nose and she kept freaking out, choking and gagging. She finally pointed to her mouth and I looked in. The tube was all twisted inside her mouth! I have never put one of these in before and I decided not to try again. We called the nurse to come so the dirty job. As we were waiting, she kept begging us not to put it back in. Matt made a deal with her, showing her how much we give her at night. She promised she would eat PLUS drink 3 ensures a day. She drank last night which was a huge accomplishment.

Jacqueline wrote this contract and Emily signed it PROMISING to drink 3 ensures a day, eat breakfast, lunch and dinner, eat snacks in between if needed and, my favorite, not throw a fit or yell while doing it!

I don't think I have seen Emily this excited or motivated about eating in a long time. We are hoping that she will stick to this contract knowing how awful the feeding tube is!

I really hope she will do it. It would make life a lot easier on her and me! Cross you fingers everyone!

Thanksgiving Day fun!

Our favorite Thanksgiving tradition is to run in a race Thanksgiving morning. This was our 3rd year, we had such a great time. We all ran the 4 miler...Emily was the princess in the stroller of course.(It is amazing how much harder it is to run with a stroller!) Jacqueline beat us all; she was actually one of the first to come in. She did awesome!

Emily ran the 1/2 mile kids race with Matt. It was so cute to watch her come in. She didn't give up even though it was a lot for her. Her feet are really swollen for some reason so I am sure it didn't feel that great running on them; but she didn't even complain. She was so excited to know that she had ran in a race!

Everyone chose their favorite food they wanted for our "feast". Emily actually ate her pumpkin pie--mostly the whipped cream an top but Ya Hoo!
We put together a puzzle that had 1000 pieces WOW! As you can see Matt pooped out on the couch. We had a wonderful time together playing games, watching movies and of course working on the puzzle!

Emily's update and 100 day mark

We spent most of the day at the hospital today having blood tests, a bone marrow poke and an NG tube(feeding tube) put in. As you can imagine, this was not something Emily was very excited for! Mike, the child life specialist, came in with a new doll and helped "Dr. Heaps" put an NG tube into her nose. It was fun for her to have things explained to her as she performed the procedure on her doll.

We are hoping that she will be eating on her own again soon, but for now, Matt and I are excited that she will actually be getting some much needed nutrition into her body! I was excited until they started telling me everything that I would have to do to hook her up at night.(I feel tired already!) I know it will just take time to get used to and everything will be just fine.

When the nurse came in after seeing that Emily lost weight this week she tried to convince me that all I need to do is FORCE her to eat. "It will only take a few times and she will learn that she can't win." I looked at her in awe and said, "I will not force Emily to eat. I am doing my best but I am not going to force her to eat and then watch her throw it up!" I am realizing this is just one of those times when I have to listen to to spirit telling me what to do. I know that Emily is not just being difficult and trying to prove a point when she doesn't eat. She doesn't have an appetite, she has no desire to eat and when she does eat, she gets full very fast. She is not trying to prove a point that she is the boss. I can understand this could be the case with some kids; and that is why the nurse is saying what she says, but she's MY daughter and that just doesn't sit right with me. (Sorry, I had to do a little venting!)

Emily doesn't like how it feels in her throat and in her nose; who would? Mike assured her that she would get used to it and forget it's even there. This made her feel better and more at ease. It's so great that she trusts him, I LOVE child life!

We were concentrating so much on the NG tube that when we put Emily in the car to go home and she said "Ouch it hurts!" we weren't sure why. We laughed at ourselves remembering that she had also had bone marrow taken out of her hip; of course she would be hurting!

The test results will be back next week; we will then be meeting with the doctors to discuss what the plan will be. We are concerned because her counts have gone down even more from last week. Her ANC is now at 400 and her white blood count is also really low. After the nurse took out Emily's bone marrow she said it didn't look good. This could mean that it just needs more time. The doctors are excited to get the test results and try to figure out what is going on. We are still wondering if it is the Epstein Bar virus that is just taking it's toll on her.

Today is the official 100 day mark. Ya Hoo?? Just a reminder that it is just the time when Emily has more tests done to see if there is any "activity" going on. For us, it really doesn't mean much but they like to count it down anyway. We thought it was a huge milestone the way they talked but with SCID kids it takes a LOT longer then 100 days to make a real difference. regardless it is amazing that it has been 100 days!

Emily and Karter-SCID buddies!

Emily wanted to go and see Karter and his mom, Malory and show them her NG tube. It was fun to see Karter with an NG tube and a central line. It helps her to see that she isn't the only one who has to have crazy things stuck in her body!
She loves to visit her SCID buddy and look on his blog. He is SO cute! We are praying they can leave the hospital soon.

Joslyn and Golden come to visit!

We had a great time with Joslyn and Golden today. They came up from Arizona to visit. Dolche, their puppy got to come along too, which as you can see was Emily's favorite part!
We thought that Leo was a small dog until we met Dolce! She is a toy Yorkie who looks like a cute little dust bunny that you would find under your couch...(not OUR couch of course but someone elses!Ha Ha) We had to keep them seperated because Leo could have eaten her for dinner!

Emily "Bedazzles" her masks!

 

My cousin Jeff suggested we decorate Emily's masks and I thought this was a fabulous idea! I can't believe we didn't think of it sooner.

Emily had so much fun putting glitter and stickers on. There is just one thing I didn't think of...The smell from the glitter and glue was HORRIBLE! I put one up to my face and could hardly breath!

No worries, we took a trip to Roberts the next day and bought some really fun stickers. Maybe we can't have all the "bling bling" but at least they will still be cute and fun!

Emily's best friend

 

If you ever wonder who Emily's best friend is you don't have to look far, actually most days he is right by her side! Yes, Leo even sleeps with Emily! This started when she learned that owls eat small animals. She couldn't sleep because she just knew an owl was going to come and eat Leo! She goes to sleep so much faster now too which is nice for mom and dad!

It is so amazing to watch the two of them together. He is very protective and likes to be between her and whoever comes to see her...it is actually quite funny! last night Emily didn't come home until midnight...Leo didn't know what to do with himself!

Coming from someone who is not a "dog person" I have to admit I am glad we have Leo around. He LOVES the kids so much and has a unique relationship with each one. It is funny, before Emily had her transplant, she wasn't this close to Leo. She always loved him but he liked his "space". Dogs have an amazing way of knowing when they are needed. Ever since Emily has come home Leo doesn't leave her side! When she is sick he curls up in a ball with her and will lay there all day long! It makes her so happy to have him around.

I can honestly say that pets are therapeutic for people.(Yes, I said it!) Leo has given Emily so much happiness and comfort in a time when life is not that easy. I will always be so grateful for this.

It really is a miracle that we even have him because I have NEVER wanted a dog. Something told me 2 years ago that it was time. I saw Leo and was "weak" for a day(you know how cute puppies can be!). When I approached the family about it I found out that Matt and the kids had been praying for the past few months for my heart to be softened! They were so excited! I was glad to know that I helped them see that God does answer prayers---even impossible ones! ha ha! But seriously I look back and know that it really was inspired.

Even though I still don't LOVE being a dog owner, smelly dog, accidents in the house (very few and far between now thank goodness), smelly dog, oh yea, did I say smelly dog?! I am glad we have him and I am glad Emily has a best friend who is always there for her!

Day 94!

 

Emily loves to show off her milk mustache!

We went to clinic today and Emily went from 17.2 kilograms to 17.4 kilograms in her weight. She was excited because this meant she got a prize from her nurse for not losing anymore weight! She still isn't eating well but we are thinking she lost last week from being off the Prednisone. I have to write down everything she eats for the next week and we will go from there. I am hoping she will not have to have a feeding tube!

Emily's counts are still down and they are stumped as to why. (Surprise, Surprise!) It could be a number of things from the Epstein Bar virus to something being wrong with her bone marrow. She had lots of blood taken today for tests and they are going to go in and take some of her bone marrow to see what is going on. Hopefully it is just being "flaky", as Dr. Boyer put it, and will get back on track with time.

As many of you know, when problems arise, I can't rest until they are solved. This can be a great strength(so I'm told) but it can also be a GREAT WEAKNESS! I know I need to stay positive and not worry; this is my GOAL but I have to admit I have been dreading this roller coaster! I was hoping that this time we wouldn't have to ride it! Life could never be that easy right?!

In this situation I can't do any "fixing" there really isn't anything we can do except WAIT, WAIT, WAIT! You would think I would be really good at this by now but I haven't seemed to master it...maybe this is why I keep having to practice. Maybe someday I will learn!

Thanks for keeping us in your prayers.

My crazy dancing kids!

Wow Uncle Wade you really know how to teach my kids the moves! It is always fun when Uncle Wade is around!

Emily loves to dance with her Daddy!

Emily and her Daddy

 

Having fun with the Family!

 

We went to my cousins, Melissa Hymas' wedding reception Monday night and had such a wonderful time! Emily was so excited to wear a fancy dress but she was NOT excited about having to wear her mask. We told her not to worry because we would not stay long at all!
2 hours later we had to drag her from the dance floor! She had the time of her life playing with cousins, looking at all the beautiful flowers and of course, dancing like a princess! It was fun to see her enjoy herself so much!

It was so good to see all the Whitings. It is sad how long time passes between events like these...who is getting married next? Hurry up!! Ha Ha

Emily's Primary Program

"Mom, even if you are sick and can't go to church, you can still be a member, right?"

This is the question Emily asked before going into the hosptial this summer. I told her, "Of course you can." The last 4 months have been living proof! Emily has been able to continue with primary lessons, singing time and having the sacrament each week. It is different not going to our church building and being surrounded by hundreds of ward members, but I can testify to you that the spirit is the same. In fact many times it has been even stonger.

Last night Sister Holladay's hard work paid off as we sat in our living room for Emily's primary program. Both Grandparents were able to give talks as well as Jacqueline, Thomas and Matt. Brother West, a counselor in our Bishopric gave beautiful closing remarks.

The music was so angelic to listen to. Emily had some duets with Sister Holladay,and she even got to play the guitar for "Called to serve". Thomas and Emily's friends joined in together to help with some of the songs and our Family sang the last one together.

When we asked Emily what her favorite part about the night was. She said, "I loved singing the songs because I really felt the spirit".

We ALL felt the spirit testify to us that we are children of God. He knows us each individually, by name. He knows are strengths,our weaknesses our dreams and desires.
I am so grateful that Heavenly Father is aware of our little Emily's desire to still be a member of the church! She loves being able to have church at home and partake of the sacred ordinance of the Sacrament. She, as well as the rest of us are so uplifted each week through the service of Sister Holladay and the Priests in our ward.
I don't think words could ever express my gratitude for the opportunity to be surrounded by people who truly get what the gospel is all about. They don't just talk the talk, it is who they are, it is what they do. When you are around people like this you can't help but want to be a better person.

Yes, Emily you can be a member of the church no matter what your situation, if you have the desire to follow our Savior Jesus Christ. He makes it possible. What a great reminder to us all!

Our Heaps FHE at Thanksgiving Point

 

We got to go to the Art Studio of Tom Holdam at Thanksgiving Point for our Heaps FHE. Tom gave us a tour of his workshop and showed us his blueprints for future temples he is doing the stain glass work in. It is amazing to learn and see how much work it takes to create these beautiful works of art.

The highlight of the night was when the kids got to make their very own glass flowers! Thanks Aunt Alice for planning such a fun night!

Day 89

You'll never guess what the doctors told me today...Emily needs to EAT! She did lose almost 2lbs in just one week which is concerning but I had to laugh because I knew it was coming! Emily's nurse sat down and tried to get Emily to tell her why she wasn't eating; does your tummy hurt? Does it taste yucky? Are you scared you'll throw up? She kept saying "I don't know" She just doesn't have an appetite!

We are trying a new medicine that is supposed to make her hungry, but it also might make her have diarrhea!!! It is so frustrating!

They are also concerned because her ANC(absolute nutrifil count) is down from 3000 last week to just 600 this week. They are wondering if it is because she has the Epstein Bar virus, which she tested positive for last week. We have to wait a few days for the test results to come back to see if it is getting worse.
It also might mean something else is brewing. It always seems to be a guessing game! I just hope they aren't down because she is off the Prednisone.

Anyway, I could ramble all day long...bottom line is that Emily is looking good and seems to be feeling fine. She is looking forward to getting a prize from Nurse Hillary is she hasn't dropped anymore weight when she goes in next week. She loves prizes so we are hoping it will make a difference!

Monica comes to visit!

 

We felt very spoiled this weekend. It was so fun to spend time with Monica. She always makes life so fun!

Watching Laurisa with her group "Light"

 
We got to watch Laurisa perform with her singing group from Arizona. They performed 5 minutes from our house! They also gave an amazing fireside on Sunday, sharing their testimonies through words and songs. What a great weekend!

True Blue Cougar Fans!

We had a great time at the BYU game on Saturday! Jac and I enjoyed seeing how many crazy Pictures we could take. In our excitement we forgot to look where we were going and walked right into the mens bathroom! OOPS!
It was a perfect fall day; it felt so great to be outside enjoying the sunshine with two of our wonderful kids.
Don't worry, Emily wasn't sad at all...she got to spend the day with Grandma, Grandpa and Aunt Monica.(I wonder if she got spoiled at all? Hmmm)

We had WAY too much fun!

 

Our No Prednisone Celebration!

We celebrated as a family by going to Emily's favorite little bakery, Dippidee. She was so excited to actually be able to eat one of her favorite treats! We even put a candle in her sugar cookie.

I had to laugh because she kept asking if she had to eat the whole thing...like I would ever "make" her eat all of her treat!

Emily's next big challenge is to keep doing well even off the Prednisone. Everyone keep thinking positive thoughts! Oh yea, and a prayer or two wouldn't hurt either! Ha Ha!

Thank you everyone, for your love, prayers and numerous acts of service. I don't know how we could do it without you. We love you all so much!

Snow Day!

Yesterday was our first snowfall of the season! Emily was so excited to be able to play in the snow. She loved having a "snowball" fight with me and decorating our makeshift snowman with "easy cheese"-yes, the cheese in a can(Yuck!) Kaleb came over to help with this part...what a fun day!

Day 82

Just a little update to tell you how Emily is doing. She is doing FABULOUS!!! She has her last day of Prednisone tomorrow. This is the med that makes her so puffy and achy and ornery! Ya Hoo! Her counts are looking great and the Docs are so pleased with her progress.
She is back to her old tricks with not eating much. A few weeks ago the doctors warned her they would have to put in a feeding tube. I have been stressing over this. Matt tried to get her to eat a cheese stick on Sunday and she threw it up! She is just not hungry, and nothing seems to taste good to her. I took her to the store last week and told her to get anything she wanted. She picked pretzels and carrots! She wanted pumpkin muffins the other day, after having a great time making them she finally took a little tiny bite about 4 hours later and said she was done!
Anyway, When I told the nurse she is only eating about 700 calories a day, she told me not to worry about it. My jaw dropped! This is typical of the medical world...they stress you out one week and then the next they act like it is no big deal! I seriously don't get it! I am not going to worry about this anymore, she will eat when she is hungry, right!? Just wait till next week...

Other than that everything is going so great...very different from her first BMT. They could never get her counts to come up where they needed to be. I am so grateful not to be going down that road again. What a blessing!

Emilyisms

Emily says the cutest things! Here are just a few so we will never forget them!

When we say, "I love you" Emily responds with "Me too!"

"WHOO HOO" When Emily says this word you know she is really happy! When we heard her using it a few weeks ago we knew we had our Emily back! I asked her why she says "Whoo Hoo", she looked at me and said "It is a happy word!" I totally agree!

When something went wasn't working on the computer at Grandmas house Grandma said, "that's not fair!" Emily looked at her and said, "No, that's life, life isn't fair!" She told me this today again. I love that she realizes life is not always fair and that's OK.

"When I have a bad attitude in the hospital, it makes my stay soo much longer!"

"Leo, I love to smell you! You smell like a potato!" ????? Who knew potatoes smelled good?

"I am going to be on Channel!" (meaning on TV)

"My taste buds are allergic to that food"

"My legs are allergic to jeans!"

"Mom, will you put in a CD like "We Believe" (an EFY CD)...I just feel the spirit when that music is on."---How could I say no to that one?

"Dad, will you keep me safe? Will you keep me from having bad dreams? " If Dad isn't home she asks Jacqueline or me too!

"Will you warm up my heat pad?" --This is like her security blanket. She wraps it around her stomach every night!

"I hate P90X!"--Whenever I tell her she needs to get some exercise she tells me, Well, I am not going to do P90X!..unless it is time to go to bed, then all of a sudden P90X sounds really fun!--Just for the record, I don't tell her she has to do
P90X.

Celebrating Grandpa Heaps birthday at the Temple

Here it is the morning after Halloween, most people were probably sleeping in...not this crew! They were at the Provo Temple at 6:00am to help Grandpa Heaps celebrate his birthday by doing what he loves best, Temple work! Thomas couldn't go into the baptism area but he loved sitting in the waiting room reading the New Era and the scriptures.

They finished the morning celebration by going to, can you guess?... Golden Coral! What a fun way to start a Saturday morning!