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Friday, February 27, 2009

A much better day!

Britt and Ben, having fun with Emily! Nurses CAN be fun!
A visit from Winston!

Painting, and coloring are always great ways to pass the time in the hospital!


Emily woke up feeling MUCH BETTER!

Her fever broke during the night and her diarrhea slowed to almost a complete stop by this afternoon. She looks so much better!I was so happy to see her smiling face when she woke up. She even let me give her a bath and do her hair she was feeling that much better!

The test results have all come back negative other than her ear being infected which is very odd since there is NO draining whatsoever and she has tubes. They tried to say the whole sickness was caused by this but I wouldn't buy it. I was able to convince her doctor, telling him that she gets ear infections all the time and they NEVER come with vomiting, diarrhea and fevers. He agreed after looking into her healthy looking ears.

I asked him if we should keep her on the Megace(the appetite enhancing med which is full of female hormones) or put in a button. He was all for the Megace and told me we should keep her on this until she's off her immuno-suppressants in June..."Then, if she stops eating again we can work on the 'behaviors' that are causing this". The mama bear in me came out and I looked at him and said(as nicely as I could of course) "This is NOT a behavioral issue! She eats when she is hungry, this is not a power struggle problem." He just looked at me and said, "Well, it might be true but she is also on Concerta which is making her not hungry too. If you can just get her behaviors worked out then things will work out I am sure."

This has been a discussion and concern since last summer...I have struggled with not wanting to take her off it because she has done so well AND I saw absolutely NO change in her eating when she started it. She has never been a big eater!

Anyway, as I was venting my frustrations to Matt, going on about how stubborn this doctor is, a little voice came into my head saying, "Maybe you are letting your own pride get in the way, remember to be humble."

I have been really trying to listen to what is best for Emily and not just try to be "right". I am also really trying to listen to the spirit with what is best for Emily...Megace or a button. I asked our SCID email group and got quite a horror story from one of the moms on the horrible side effects, one in which shows that it inhibits T-cells to develop!...Isn't this what we are trying get MORE of?

Even though the doctor is pushing Megace, if we feel the spirit telling us to do the button I've got to be brave and just tell the doctor this is what we want to do.

Sorry for rambling, can you tell I've been in a hospital room ALL day?

Emily has had such a wonderful attitude today. At times she would tell me she was feeling yucky all over. One time she stopped coloring and said, "Mom, do you see how happy I am?"
"Yes"
"Mom, I am feeling pretty yucky but I am trying to be happy and make the best of it."

Another time she stopped her coloring and said, "Mom, can we say a prayer"
After her sweet prayer asking Heavenly Father to help her get better so she can go home tomorrow she was like a little girl on a sugar high. She was singing and dancing telling me she had so much energy she couldn't get rid of any!--The faith of a child :) I am seriously amazed at her maturity!

Emily's highlights today were Mike (the child life guy) coming in and seeing her. a huge dog coming to see her AND another child life friend coming in to make bracelets, sand art, and lots and lots of coloring things! She was busy all afternoon and evening!

It has been a good day.

Thursday, February 26, 2009

"Am I dreaming? When I wake up I will be all better!"

Leo saying goodbye...for just a few days!
Feeling miserable :(

Isn't it funny how one day you things can seem like everything is going perfectly and the next day you think to yourself what happened?

Emily woke up about 3:00am this morning with horrible stomach pains. She laid with us for about an hour as I kept watching her temperature rise. By 5:00 there was no question, it was time to bring her in. Not only was she fevering but now she had diarrhea and throwing up on top of it.

Emily cried, "I don't want to go, I want Leo! I need my Fluffy!"

Jacqueline and Thomas being the wonderful big Sis and Bro that they are, hurried and grabbed her camera. They took lots of pictures of Leo and even filmed him too. They filmed themselves telling her how much they loved her too! She loves looking at them. It was such a great idea!

Emily threw up 2 times on the way up. She did a great job getting it all into the bowl but didn't realize she needed to hold on to it after....needless to say, we are going to have a VERY stinky van! I rolled the windows down a little hoping it will help air things out by the time we get to go home.

Emily stopped throwing up about 10:00am. She is still dealing with diarrhea and fevers. They shoot up to 103-104 degrees and then the Tylenol brings it back down for a few hours allowing her to feel a little better. Better enough to order frozen yogurt 4 times!(sound like anyone else we know?)

Lot's of tests have been run. We haven't heard anything yet, we may not ever know exactly what it is because of all the antibiotics she takes daily could mask the real problem. Either way, if we find out what kind of infection it is they will make sure she has the right meds to get her better; if we don't find out we will have to stay here until her fever breaks. We are HOPING she will be able to come home Saturday or Sunday...

Emily kept asking me today, "Mom, am I dreaming? Am I going to wake up and be home and be all better?" "Mom, I really think I am dreaming...I know I am dreaming!"

"No, sweety your not dreaming but you are on another hospital vacation, so let's make the best of it!"

Thankfully, she is being very sweet and grateful with all of her nurses. She was also very excited to have her Dad, Grandpa and Grandma Whiting come to visit.
Grandma was such a trooper...she never gave up even after 3 hours of driving the wrong way! Emily kept telling me to call Grandpa to go and get her...this is exactly what he did! Thanks Mom for doing your best to come and see us! We feel very loved:)

Tuesday, February 24, 2009

A successful clinic day!

Can you see? Yes, Emily weighed in at 18.6 kilograms today. This is DEFINITELY UP from her 16.8 kilograms 2 weeks ago. She gained almost 5 pounds!!!(Why isn't it a good thing when I gain 5 lbs?)

Emily didn't care, she just knew she was HUNGRY! I can't believe how many times I have heard these words come out of her mouth during the last 2 weeks. She told someone yesterday that her favorite part about being home schooled is that she can EAT! It is VERY strange to hear our daughter who usually couldn't care less about food to be almost obsessed about what she wants to eat next.

I have cut back the meds a little in hopes it will even things out. Regardless, she is finally making progress. I can honestly say that I really can see a difference in her energy level....it proves how important it is to get enough calories if you want to feel your best!

As for the rest of our clinic visit, everything is going fantastic! WBC count is 4.6 and her ANC count is 2.8. They are both higher than last time so we are very happy with her progress!

Well I've got to run, Emily is...yep, you guessed it...HUNGRY!!!
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Audiology

Emily went to the Audiologist today for testing and to get new molds for her hearing aids made. She wasn't happy about it, for some crazy reason so I found if I told her I would take pictures for our blog she was a lot easier to work with!

She thinks she looks like an alien with the tubes sticking out of her ears! She is a very cute alien of course!

Emily has lost some more hearing in her left ear so we will be testing her more often to make sure she doesn't continue to lose anymore. If we lived anywhere else, she would have a cochlear implant by now, but we have decided to stop fighting for it because new and improved products are coming out in the near future that may end up being better than ever before!

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video

The pink stuff hardens in about 3-5 minutes. They are then sent to the lab for custom made molds to be made, just for Emily! This time she picked purple, gold and silver sparkles! She loves sparkles!(I am so grateful since she could have chosen Tye-dye!)

Blue and Gold banquet


Matt took Thomas to the annual Blue and Gold banquet last week.

Us girls really missed out this year...The theme was USA so of course hot dogs had to be involved. Thomas came home saying he had 3 of them!!

Thomas has some wonderful leaders and really enjoys going. I am so grateful for the time and dedication they put in to helping Thomas learn so much!

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Monday, February 23, 2009

Fireside adventure

"No! I won't go!! I HATE going to meetings...all you do is SIT and you can't talk AT ALL!"

"No, No NO, I won't go! It will be SOOO BORING!"

This was Emily's reaction when we decided to bring the kids to Kaysville for a Humanitarian fireside Matt was asked to do.

The kids were going to stay at home but Jacqueline started saying how much she wished she could come. She promised she would take Emily out for as many 'breaks' she needed.

We thought about it awhile and decided to run it past Thomas and Emily since it really wouldn't be a big deal for Emily to go into one of the empty rooms and take her mask off for a break.

They weren't as hip on the idea as Jac. Thomas was wise enough to just leave it at "We COULD just stay home..." He could see that Emily was saying enough for the both of them!

With an outburst and tantrum like this from Emily we decided that we DEFINITELY needed to bring them along...if anything just so she wouldn't think she got her way.

As I was putting on her dress (which she hasn't worn since last winter) The REAL reason came out.

"What if they laugh at my hairy arms?"

"They won't see them, your dress has long sleeves."

"What if they can tell I have a central line? I only want people I know to see it."

"No one will see your central line, you will be just fine."

On the drive there we kept hearing comments from the back, "I wish I never came, I don't want to go." When we got out of the van I realized that because of Emily's swollen feet she doesn't have any church shoes. I haven't worried about getting ones that fit for obvious reasons...Out she walked with her fancy purple dress and ....her BEAUTIFUL comfy PINK CROCS! I about died of course. Matt elbowed me and said, "Way to go, like she's not self conscious enough already!"...I decided it didn't matter so much; hey, who cares we'll never see these people again. Image isn't the important thing here! (I know, it was a shallow moment!)

Matt did an amazing job (as always) and Emily warmed up as soon as we walked into the chapel and talked with the nice ladies waiting to greet us. they showed us to the mothers room which had comfy chairs and lots of room to relax. They also promised yummy cake at the end.(which, nowadays IS an incentive for her!)

Thomas took her out after about 30 minutes for a break and then she came in again at the end. It may sound funny but it just felt good to have her in a chapel, singing church hymns and having our WHOLE family together again. I can't wait to have it all the time!

We asked Emily what her favorite part of the night was and she said "The end! We got to have yummy cake with whipped cream!" --can you tell her medicine is working?(a little TOO WELL!)

As we piled into the van to go home, armed with a vase of 2 dozen roses and other beautiful flowers, an address from a little girl who wants to be Emily's new pen pal, AND Emily's favorite...a WHOLE CAKE and can of WHIPPING CREAM; Emily said, "I am sorry Dad, I was just having a frustrating day."

It ended up being a great experience for all of us...even if the kids think Dad is a little boring(did I just say that?)...Like Jac said, "It's just because we have heard it so many times before." She told me she planned out what she was going to be eating for breakfast, lunch, dinner and a snack for the next day! I had to laugh...she is so funny!

Emily woke up today and the first words out of her mouth were, "Mom, I had a dream that we had cake with whipping cream...is it true? I hope it is! I want cake and Pizza for breakfast!"

Wednesday, February 18, 2009

Emily and her Daddy

Two of my favorite pictures that make me smile!
Yesterday Emily woke up with a huge smile on her face. She was SOOO excited as she kept singing, "I get to snuggle with Dad today!!!!!"
This past weekend Matt came down with a nasty cold. It was a very sad few days for a little girl who loves to be with her Dad every chance she gets!
Any time he would get within a few feet from her she would run away saying "It's just not fair!...Why do you have to be sick?"
Every morning she would ask, "Are you better yet?" Let's just say Mom got Lot's of Emily time :)
Emily told me the other day,"I don't believe you (I guess on anything I say...she wasn't specific) but I believe Dad." Well, at least she trusts one of us?!
She definitely knows her Mother isn't perfect! (who knew?) Isn't it sad when you can't even fool your 7 year old?
I am so grateful that they have such a close relationship. With a dad like Matt would you expect anything less?
All of our children have a very special relationship with their dad; why? because he takes time to show them how much he loves and cares about them...even when it's late at night and he has an early meeting, he doesn't pass up the opportunity to spend some priceless one on one moments with each child in their bedroom telling them goodnight....We are so blessed to have him around!
Last night Emily got her wish...she got to SNUGGLE with DADDY!!!

Shaving fun!

As you can see, Emily is VERY HAIRY!!!! She is constantly saying how ITCHY her back is. It got so bad she begged me to shave it off! Pictures don't do it justice...believe me, she deserves the name "Furry little Monkey".
You should have seen the bathtub with all the hair; it's a miracle our drained didn't get clogged!

Will shaving it off will help the itchiness go away? So far it seems better. At least when she bends over it won't look like she has "plumbers bum" anymore (some of her hair made a wave in just the perfect spot!)

Who knows, maybe she'll branch out and want her arms and legs shaved too. Ha Ha...she is sitting next to me saying "NO WAY!"

This is just fine, I enjoy snuggling with my furry little monkey!
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Tuesday, February 17, 2009

Snowshoeing to Stewart Falls


Our family knows that we work hard THEN play hard...today, I wrote a list of the things that needed to be done before playing and put them on the fridge.

While Jac and I were exercising downstairs, Thomas went to work and Emily decided to take his example and help out. By the time we were finished, almost all of the jobs were finished! Thomas didn't stop until everything was finished and the house was spotless.Talk about a wonderful surprise and gift of service!

On the way up, the kids had fun taking LOTS of pictures of themselves! As you can see, the girls are very easily entertained...as for Thomas...he puts up with them!

As we were making our way up Provo Canyon, Emily, who had bee SOOO excited to try out her new PINK snowshoes said, "HEY, SNOWSHOEING IS LIKE HIKING!!!...I HATE HIKING!"

"Oh don't worry, this is not a hike, this is an ADVENTURE." we told her.

"Walking makes you TIRED! I don't like walking!" "I hate exercise!"

When we handed Emily her camera, things looked a lot brighter! We walked a few feet, took a picture, walked a few feet, took another picture...berries, snow, little tracks in the snow, etc. etc.


Here are a few of the amazing sights. Berries and pine cones on the trees, BLUE sky, Stewart Falls frozen water fall, and the great face created by Jac and Thomas!



Some great highlights of the trip:

Snowshoes for everyone!

A beautiful trail, and beautiful weather

Playing on a huge "marshmallow"

Collecting lots and lots of branches, pine cones, and berries!

"My legs hurt, but I just can't stop" (Emily)

Being OUTSIDE!

Fishy crackers and pretzels (Emily's newest food craze)

Seeing a beautiful waterfall

Cold fingers (next time Jac and I will bring better gloves!)

FAMILY TIME!!!

Even though Emily wasn't thrilled about going when she realized what snowshoeing really was, she was a trooper! She led the way taking breaks when needed saying her legs hurt, but she couldn't stop! As long as she was taking pictures, finding things for her collection, and singing her favorite primary song "I am a child of God" in English AND Japanese with her dad, she was very happy!

If anyone is looking for a great outdoor activity for their family this would be one to try!


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Sunday, February 15, 2009

Happy Valentines Day!

Our family had a great Valentines day this year. It was so great to have the whole day to spend together. Jacqueline spoiled us with heart shaped pancakes for breakfast. (Very Yummy!)

Emily enjoyed walking around the neighborhood delivering Valentines with Leo and Matt. An hour later Matt was sure to thank me for allowing him to go with her! I knew he would love to have bonding time with his youngest daughter...aren't I SO in tune to their needs?

Each time the door would ring at our house Emily would giggle with excitement, run to the door and find a new friend with a Valentine for ....EMILY!....Yes, we all gave up hoping that something was coming for us. (Don't worry, we got over the disappointment after a few hours! Ha ha) As for Emily she felt VERY loved by many wonderful and thoughtful people.

Emily also went to her school Valentines party on Friday. It is nice to have some fun times to look forward to being with her school class. I think it helps to keep them connected with each other; which I am hoping will help make it an easier transition when she gets to go back.

She loved having the chance to be a part of her class and going to recess; making her feel like "normal" again. (Even if it was just for a few minutes anyway!)

We ended the night with heart pizza, red popcorn and a movie. As you can see, the kids fell asleep but Matt and I enjoyed watching one of our very favorite romantic movies, Sabrina.

It was a wonderful way to spend our Valentines Day.... with the people we love the most!

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Tuesday, February 10, 2009

Emily's life at the clinic


Here is a look at what Emily does each time she goes to the Bone Marrow Clinic.

Once a month Emily gets IVIG which takes about 2 or more hours. This makes for a long day but Emily LOVES it because she gets to watch movies and order whatever she wants from the cafeteria.

Our highlight of the day was a visit from Karter and Malory who came for his check up too! Emily loves to play with him. She made him a valentine which he enjoyed throwing on the floor, and watching Emily pick it up for him each time...what a fun game! He is so darling! We are crossing our fingers that he will get to go home next week to St. George. Ya Hoo!

Emily's counts are great. Her white blood count is 3.9. Her absolute nutrifil count is 2.2. We are happy that she is staying very stable and very healthy!

Our only concern of course, is Emily's weight. She was 17.5 kilograms 2 weeks ago and she weighed in at 16.8 kilograms today. I have been praying that if she needs extra help for the scale to show it today. This might sound silly but unless it shows a big loss the doctors keep letting it slide even though she has been about the same for 3 months! She goes up a little, down a little all within the same range of 16.8-17.5 killograms.

The plan is to double her appetite enhancing medicine and see if it helps. If it doesn't work she will most likely be getting the "button" which is a feeding tube surgically placed in her stomach.

Next week all the doctors are getting together for a conference and they will talk about what would be best for Emily. Some like the idea of getting a pump and others aren't so sure. For me, I think it would be a great thing to actually know that she is getting nutrition into her body instead of just having Costco pizza, nachos and cucumbers.

I am very excited to have all the doctors on the same page FINALLY!! It has been very frustrating to have a different opinion each time we go in! Do you sense some frustration??? Me? NEVER! Ha ha...

I am learning that it is up to me to remind them of what issues we are dealing with. I can only imagine how hard it would be to keep up with all the patients they see and remember their history; and with us being seen every 2 weeks by someone different it makes it even harder.

For now, we are going to hope that the extra medicine will do the trick so we won't have to worry about putting the button in. No worries though. She is a very tough girl; she will handle whatever comes her way!

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Dinner with Grandpa Don, remembering Grandma B

Having fun with Grandma B in the summer of 2006
Visiting Grandpa don and Grandma B in the summer of 2007

Debbi and Monica brought Grandpa Don down from Salt Lake today to visit Grandma B's grave. She passed away February 7th 2008. This has been a really tough and lonely year.

Grandpa Don has made some life changing decisions during this past year. The thought of never seeing his sweetheart again was just too much to bare! He made his mind up to start going to church again and was soon able to go to the temple, receive his endowments and be sealed to Grandma!

He has really enjoyed his ward family and they love him! They call if he ever misses a meeting to make sure he is OK.

It is such a crime that he and Grandma missed out on so many years of having the gospel in their lives but it is such a blessing that he has it now!
He cries every time he talks about grandma yet, there is a light around him that I have never seen before. He has an inner happiness and peace that only comes from knowing he is a son of God and having the knowledge that he WILL see his sweetheart again someday.

We spent a nice evening with Deb, Monica and Grandpa talking about our memories of Grandma and learning more about Grandpa and his life.

Thanks for the great night....we love you!



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Sunday, February 8, 2009

February FHE with the Heaps Fam




Some of us took advantage of as many snow activities as possible!
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Enjoying the snow from the INSIDE!



As you can see, we had a great afternoon snowshoeing, sledding, cross-country skiing, eating yummy soup, bread, cookies and hot cocoa!
The Heaps family knows how to have a good time! Would you expect anything less?
Thanks Dave and Marianne for sharing your beautiful home with us.
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BASKETBALL!!!

Thomas has loved playing basketball this season. It has been a great reason to get ourselves out of bed each Saturday for his 8:00a.m. games. Hey, who needs sleep right?!

It is always fun to watch Thomas play, he loves blocking, passing, steeling, and of course making lots of baskets!
One of the great highlights this year is that 6 of the kids on the team all come from our neighborhood! (Zac wasn't here for the picture). I keep thinking how great these boys will be when they play Deacon basketball together. They are learning to work really well with each other and they have been having so much fun doing it. Just wait a few years!

Basketball is great fun; playing with a good team is great fun; making friends for a lifetime...priceless!
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Wednesday, February 4, 2009

OUR TARGET EXPERIENCE

Emily and I went to Target today to look for CUTE barrettes(no luck! anyone have any tips? They need to be able to fit in a little amount of hair and actually stay!)

As we were walking down the isle we saw a little girl walking towards us with a MASK on!!! Emily was so excited. We stopped and talked with her. She is a 9 year old from Highland with Leukemia. She had a transplant in January and came home 1 week ago.

The two girls talked for a few minutes and showed each other their central lines. They were the same color! (Emily liked that!)

It was so fun to watch them talking together. Emily was so excited to meet someone else who had a bone marrow transplant. She couldn't stop talking about it!

As we were buying our things the cashier told Emily she read about a little girl just like her. I asked her if it was in the paper yesterday and she said, "Well, yes!" When I told her it was Emily she laughed and said she thought she looked familiar.

When we were in the parking lot a lady stopped to wish Emily good luck with everything. She explained that she read the article in the paper.

Emily LOVED that people recognized her...

...It was a very exciting and unique day at Target...

Tuesday, February 3, 2009

Emily's on the front page of the Daily Herald!

Emily was in the Daily herald today...her front page debut!

The photographer came to our house for what I thought was going to be a quick picture. It turned out to be a two hour photo shoot! Mrs. Moore was such a trooper to let her take pictures of her teaching Emily!

Emily loved every second of it! After school she took the photographer all over the house showing her all of her favorite things to do...it was very cute to watch!

I thought I was off the hook until the end when she asked if she could video me talking about Emily.

It was worth it, I have to say Emily looks so adorable!!! Yes, I know I'm a little biased but what can I say?

If you would like to see the article and little video clip here is the link. (Enjoy!) http://www.heraldextra.com/content/view/298260/17/

Monday, February 2, 2009

OUR SUPERHEROS!!!!


Friday night many people in our neighborhood answered a knock at their door; and THIS is what they saw waiting for them! Was it trick or treat time already? Some people must have thought so because they came home with all sorts of treats!

I was surprised that no one screamed and slammed the door shut...they were quite the scary sight don't you think? Not really, they were dressed as SUPERHEROS out protecting the neighborhood from, from, well, they were protecting the neighborhood!

Thanks for helping make a normal everyday Friday night into an adventure they will not soon forget. What a great way to mix things up in the winter time when there isn't much to do!

Don't be surprised if you see this crazy foursome out next weekend, I don't think they have gotten their fill yet!...Protecting is what they LOVE to do!

Just in case you are wondering, our SUPERHEROS are Matthew and Benjamin Jones, Scott Larsen, and of course, Thomas. Can you guess who's who?
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Snowshoeing!

Matt and I went snowshoeing on Saturday up Provo canyon. It was such a beautiful day! We are so lucky to live so close to such beauty!

It was a perfect way to spend a Saturday afternoon with my best friend. The kids made quite the sacrifice to let Mom and Dad go and have fun without them. Emily kept saying, "Why can't we go as a FAMILY?"

Family time is wonderful but so is couple time! We need to do more of it!!!
Here is a sample of the amazing sights before us on our trail.

Next month we are going to try cross country skiing...I hope we fair better than the Drapers on their trip! Ha ha

Now we just have to convince the kids that they WANT us to go...we are much better parents when we come back!!!
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