Clinic Update

Emily couldn't wait to go to the hospital today. "It's the long day! I get to order food, watch movies and stay a really long time!" ..."When is it time to go??"

She moped around the house until it was FINALLY time...WOW, 10:00 came very slowly today!

Emily is doing FANTASTIC! She weighed in at 19.2 kilograms, her white count was 5300, and her ANC was 32oo. These are all up from last time! YA HOO!!

I had to put Emily back on the appetite enhancing medicine last week because she wasn't eating. She has had tummy aches every day since then so they told me that I could take her off. The nurse said there was another med we could try (yes, the one with meth in it) I told her NO WAY!

For now, the medicine will take a while to get out of her system so I figure we have about a month before they start stressing about her weight again. I think I will enjoy the time :) Hey, maybe Emily will surprise us all and keep eating...I'll keep you posted!

Overall Emily had a great day ordering watermelon, grapes, cucumbers, carrots pancakes and frozen yogurt; all of which she ate about 2 bites of ! Let's just say I enjoyed her leftovers :) Watching movies, and having a visit from a Yorkie therapy dog made for a great clinic day at the hospital!

We are going to experiment with lowering her daily IV med which means 2 hours a day instead of 3. We will test her Magnesium level next time and hopefully she will handle it fine.

It is so great to be going in this direction and to see her doing so well.

No more hairy arms!

I was finally able to convince Emily to shave her furry little arms. She wasn't wanting to do it at first but the promise of $2.00 won her over. She tells me she hates to count money in school...she just loves to spend it! Grandma, did you teach her this? ha ha

While I was shaving she told me it was a good thing because she hears kids laughing at her. I don't think they are laughing but I do know they are shocked and very curious when they see her! When we go to new places Emily gets lots of questions. I told her this was something we can fix...she doesn't HAVE to have hairy arms.

She kept saying, "I am going to miss my hairy arms, I like them, they are so comfy....but I don't like it when people laugh at me."

Maybe this should have been a great teaching moment on "Liking yourself and not worrying about what others think" I could have told her not to shave her arms because SHE loves them. BUT, I let my selfishness sneak in....I guess I am ready for my little girl to LOOK like my little girl again....

She still has hairy legs, she says when the weather gets warmer she will let me shave them. (Truth be told, she just doesn't want to sit forever!) Believe me, it took a very long time to cut through the forest on her arms. I had to cut it with scissors first and then it took 2 razors to get the job done! I think she earned her two dollars :) She even let me shave her uni brow...just a little!

So, maybe I wasn't the best mom to convince her to shave her arms, but I must admit they do look good. :)

Just 3 more months on the hairy medicine WA HOO. Her taper is going really well. The doctors are happy with how her body is handling things. Keep your fingers crossed!

Cake for breakfast?

Thomas decided last night that he wanted to help make his friend Matthew's 10th birthday extra special. He baked a cake (ALL BY HIMSELF!) and shaped it into a sword. It looked really great!

6:00 am this morning...during a blizzard, yes, a blizzard! Thomas and Scott braved the freezing wind and snow and kidnapped Matthew. They brought him to our house with a pillowcase over his head. They were pretty bummed when they got to his house to wake him up but he had already been awake since 4:00! (Birthdays are way too much fun to sleep through don't you think?)

After eating a piece of cake (aren't I the best mom?) they headed back over to Matts house for some REAL breakfast.

Thomas came home very happy saying, "That was a great way to start off the day!"

I was very impressed that he went to all that work....he does have great friends!

I do feel bad for Mrs. Rivera because she is getting three boys who are full of sugar! Hopefully they won't be too crazy! Maybe it will help them stay warm in this CRAZY weather...

BC Finals

Jac had her last swim meet of the season. As you can see waiting is full of FUN FUN FUN!!! Who wouldn't love 2 days of hanging out with friends and oh yea, swimming a few events here and there!?

Jac has been frustrated with her times this season because she hasn't been able to do as well as she was hoping. She found herself hitting a plateau that she couldn't seem to break out of. It has been difficult to watch her work so hard and feel like her races don't show it...Character comes from these times...CHARACTER! (This isn't what you like to hear when your going through times like these though!)

She never gave up trying, she kept working and doing her best to push herself. It is finally starting to show...She took time off each one of her events which is HUGE! WAY TO GO GIRL!---watch out summer...here she comes!

Emily goes to church!

I love Sundays because they make you stop all the crazy every other day things we do. I was especially grateful for last Sunday to have a chance to take a break from our chaos.

It was special for another reason too. Emily went to sacrament meeting for the first time 8 months! She wore her mask which was not very fun but I was SO proud of how brave she was. When Emily gets nervous she doesn't like to talk. She told me last night that she doesn't have to be afraid in our ward because everyone knows her. It is so nice to live in a place with such amazing people all around us...and so amazing that our daughter KNOWS that she won't get laughed at when she goes to church!

We wanted Emily to be at church because Matt received a new calling. He is the 2nd counselor in the bishopric. We wanted her to see it happen so when she officially comes back, she will understand why dad can't sit with us.

She wasn't happy about wearing her new shoes that Grandma found for her because they "hurt" but as soon as we promised she could take them off as soon as she sat on the bench she was willing to go.(Will we EVER find the perfect pair??)

It ended up being a really good experience. She even wanted to go to primary with her friend Cambry so I hesitantly let her. It only lasted about 5 minutes and she was done. (Who wants to sing with a mask on?) She told me it was good practice. :)

It was so wonderful to have her on my lap...all three of my kids sitting with me; it is funny the things you take for granted.

Matt is very excited to serve our ward...the ward who has given us so much. It's a way of being able to give back in some small way all that we have been given! I had to laugh last night after he got home from his first Tuesday meeting to see the "HOLY COW" look on his face! He said that he and Brother Spencer had NO idea how much the Bishopric does. He said, "Can I just tell you how glad I am that I am NOT the bishop!" I told him that I was too!

We were sitting in our basement the other night as we were thinking about all of our neighbors who helped us finish our basement a few years back...Emily said, "We can NEVER move from this house...it is too special! Our house has been built by so many selfless, kind, and giving people. Emily is right...our house is too special to ever move. :)

I am sorry if you don't live in a ward like this, I don't mean to make anyone feel bad but I can honestly say our ward is amazing. Everyone is so wonderful! We couldn't have made it through the last 7 years without their support. THANK YOU! (Even our "2nd" ward next to us has shown us amazing support. What can I say, we live in the perfect place!

The finishing touch!

When we moved into our home, we were disappointed when we realized we couldn't fit 2 couches in our living room. When we tried, it left a 12 inch pathway to walk through.

We have made the best of it with one couch for some of us to sit on and plenty of floor for the rest!

We are so grateful to the B-Attitude foundation for giving us a leather couch which is not just better cleaning wise, but it actually fits our whole family with enough room left for a pathway!

We feel so blessed and truly amazed that people would give this gift to us. We look forward to the day when we can take their example and pay it forward!

Speech Fair

Emily has a Speech Fair once a year with the deaf and hearing impaired children in Utah County. Kids from 3 years old up to 18 years old come and perform for each other. It is such an amazing evening because you can see how far these kids have come from when they were toddlers trying so hard just to speak a few words for people to understand.

Emily was SOO excited to be a part of this special night. She got to pass out pom poms to people as they walked in. Everyone was so shocked to see her since they hadn't heard about her transplant. Emily had one friend from preschool, Kolby, who kept asking so many questions. He was so cute! You could see how much he loves Emily. He wanted to be by her every second and when he performed he looked right at her and waited for her to cheer for him!

So many kids asked me about her hairy arms which was funny to me because I forget she has them. Kolby even asked me if he could touch her arm. She had her arm resting on Matts arm and he said, "Look, she's like her Dad!" We got a good chuckle since Matt isn't what you'd call hairy at all!

When Emily went on stage she was able to perform without her mask and she did such an amazing job. She didn't act nervous at all! I was so proud of her.

A Snowflake Fell

A snowflake fell into my hand

A tiny, fragile gem

A frosty crystal flowerlet

With petals, but no stem.

I wondered at the beauty

Of its intricate design,

I breathed, the snowflake vanished,

But for moments it was mine.

Take Me out of the Bathtub

Take me out of the bathtub

Take me out of the suds

I've been her soaking since half past two

I feel so sudsy and wrinkle-y too

Oh, I washed all over my bodyMy head, my toes in between

I used one, two, three bars of soap

Take me out...I'm clean!

our Home makeover continued!

After a week of very late nights and days of ignoring our kids we have MOST of our house put back together! Even though I stayed up till 2:00 am way too many times it has been so much fun to have a whole new house! Now, I am wondering how long it will take to do all the little odds and ends. Our goal it one week...we will see!

It's funny how a project always gets bigger as you go along. We realized we needed to paint which took forever but I think it makes all the difference! We also put on new baseboards. Matt felt VERY proud of himself after Kim Struthers taught him how to do it. Kim was impressed with how quickly he caught on. :) He loves to learn new skills!

We couldn't have done ANY of this without all the help from our wonderful family and neighbors who spent countless hours helping us tear everything out, and put things all back again. My Mom and Dad were so helpful with taking Emily to their house to keep her safe. I can't tell you how grateful we are for all the help we have received!

I asked Matt if it was hard to take the tile out of our front entry and he shrugged his shoulders saying, "I have no idea, I didn't even touch that area!" This shows how wonderful our help was.

Thanks everyone...we LOVE our 'new' home!

Our home makeover!

We have been CRAZY for the last few weeks.

A friend of ours came to visit Matt and told him that a family she works with in managing their foundation had decided to help our family with any needs or wants we may have. For the past 7 years we have been concerned about the holes and swelling underneath our kitchen counters; knowing that water seeps in and bacteria grows in places we can't even see. We have wanted to replace our dirty carpet and very worn out cheaply made wood floor. Carpet is wonderful but you can't keep it REALLY clean. We have also wanted a couch upstairs that would be able to fit our family on AND be leather which is a lot easier to keep clean because bacteria doesn't harbor in the fabric.

The Bishop family, of the B Attitudes foundation agreed to help us with these projects. We have been in shock for the past month as we picked out a new counter top, new flooring and a new couch that will actually fit into the tight space we are needing it for perfectly!

We have kept Emily alive and well for the past 7 years even without making these HIGHLY RECOMMENDED AND SUGGESTED improvements for keeping our home safer for her; but it has weighed heavily on our minds knowing that these things would really help.

It is such a blessing to be given such an amazing gift. I clean our house every single day. I can't tell you how good it feels to know that when I clean there aren't any "hidden" areas that I am missing. Especially in our Kitchen and front room where Emily spends most of her days!

We had to laugh at how helpless we were for the 5 days we had no water in our Kitchen sink, no dishwasher or washer and dryer. It was so fun to get all of our dishes out of our sink and into the dishwasher...sure we could have washed them by hand in the bathtub...but that takes too much work! I am not sure if I would have made a very good pioneer....I would have gone CRAZY trying to keep everything disinfected and clean! =)

Even though we aren't finished quite yet, it is so great to have Emily home and not be worried about her getting sick from all the mess!

Don't worry...we have lots more pictures to come!...this was just a teaser :)

Sleepover at Grandma and Grandpa's

Things have been a little crazy at our house...(that will come in my next entry) Emily needed to stay away from our house for a few days while it's been a 'little' dusty.

Emily LOVES to be with her Grandma and Grandpa. I was so shocked when I told her she was going to sleep at their house and she wasn't jumping up and down for joy! Instead I was flooded with questions that she would ask me OVER and OVER for the next 4 days!
"Who will take care of me?"
"Grandma"
"Who will I talk to if I need something?"
"Grandma and Grandpa...or Jacqueline!"
"Who will take me potty in the night?"
"GRANDMA"
"What about Fluffy?" AKA-Leo
"He will come with you"

Get the picture? Friday came and Emily did fabulous! Jacqueline AND Leo slept with her and when she realized we had forgotten her CD player with primary songs to help her go to sleep, Jac saved the day letting her use her ipod (that she had to turn up SUPER high for her to hear!)

These pictures are ones that Emily took or asked to be taken of her so she could remember her special stay at Grandma and Grandpas!

Some of her highlights of course were LEO, watching Animal Planet--except when she watched a show about Mosquito's who suck your blood, give you diseases and could kill you! (Yes, I was actually the one with her this time but of course I wasn't paying attention to what she was watching.) Now, she isn't so sure about how much she Loves to watch this channel. She also loved playing Webkins, shopping for shoes...well that's a stretch, she went to one store and said she was done SO my Mom, determined woman that she is, was not going to stop until she found some shoes that Emily will actually wear. She bought a pair, brought them home for her to try on and when they didn't work went out AGAIN for another pair! I think it was more of a challenge for my mom more then wanting to "spoil" Emily. She wanted to solve her problem of not having any shoes that feel good on her feet! I am amazed with her patience because I gave up months ago! This would be why Emily wears croks everywhere she goes even when they REALLY CLASH!

ANYWAY...this was a great experience for Emily, another step in getting her back into life! We had no idea she would have so much anxiety over this but we are realizing that we are going to have to be very patient and take a lot of baby steps!

Knowledge Bowl

Thomas took part in the Knowledge Bowl this year. I was very impressed with his dedication to the team because they practiced twice a week after school for about 3 months! He decided to stick with it even when all of his friends decided not to do it.

The team's hard work paid off when the time came to compete with other schools in the district. Each member of the team worked on different sections of information to try and be the "expert" in that area. You should have heard these kids answer the questions! They were answering questions about the arts; music, artists, instruments types of art, etc. etc.!!!

Thomas says he wasn't nervous but you could see it all over his face. He asked me what he should eat for breakfast...we told him, "BRAIN FOOD"...so, he had a bowl of cereal :)

As the team captain he was able to choose who answered the group questions. During the first month or so, he would come home from practice complaining about a few girls saying, "They know EVERYTHING! It's SO ANNOYING!" I think his annoyance changed to gratitude when it came down to the big day!

It was fun to watch the kids faces when they knew an answer...they were so proud of themselves! It was a great opportunity for these kids to shine. Today, it was "COOL" to know all the answers to the questions, it was "COOL" to know so many amazing things that many adults(who me?) don't know!

They competed against 4 teams. They won each one! Then the points were all tallied up from all the teams and their team was in the top 10! Out of the 6 teams that competed from Sego Lily, Theirs was the only one to make it this far! We aren't sure what this means, do we go on? I guess we will find out soon.

One thing we do know...Thomas did a fantastic job. Once again he has shown us what a well rounded kid he is. He isn't afraid to do things that interest him. He loves sports of all kinds, he loves choir and he loved doing knowledge bowl! I love that he does things because he wants to. He doesn't look to his peers to tell him if he should or shouldn't do something. I absolutely love and admire this quality in him! If he continues, I know there isn't anything he can't accomplish that he sets his mind to!

Congrats Thomas! Thanks for a very fun and exciting Saturday morning :)

BRACES!

Welcome to the world of BRACES!!! Jac has waited a very long time for this day to come, she has had the color of elastics picked out for months! Doesn't she look cute?

Now that it has finally arrived, I'm not so sure how excited she is...when we called her up for family scripture study and prayer I heard her scream, "I CAN'T COME RIGHT NOW!!" How rude! Don't you think? =)

About 15 minutes later she came up a very grossed out and frustrated girl who had to floss her teeth through all those wires! We couldn't help but laugh...of course not AT her but WITH her!

Dr. Swenson called leaving a message hoping she was doing OK. He finished his message PROMISING that it WILL GET BETTER!

For now, she is enjoying lots of SOFT foods and mourning the fact that she can't eat one of her very favorite foods...NUTS. The price we pay for beauty!...about that..PRICE...HOLY TOLEDO, maybe we should go live in a country where ugly teeth are the "in" thing. =)

I figure we are good on gifts for the next 10 or so years, don't you think?

My fishies!

Jacqueline and Thomas had a swim meet last week in Provo and this weekend in Bountiful. Matt got to go to both! Yes, I feel very left out! They are doing such a great job! Both of them improved times(Thomas took 11 seconds off one event!) and tried new events(Jac swam a 500 freestyle which is 20 laps, and Thomas did his first 100 IM!) Matt forgot to take pictures but he did get some great footage of their races which were really fun to watch! Maybe SOMEDAY they will be able to pass their mom up! Ha Ha

On Friday when I picked Jac up from school I could tell something was bothering her. Through tears she expressed how she wished the WHOLE family could come to the meets. If anyone thinks when someone is sick in the family it only affects them, they are sorely mistaken! My heart breaks every time I miss one of Jac and Thomas' meets, games etc.

We have always been a family who tries to go to everything as a family. This hasn't always been exciting for the siblings not involved but they all get their turns. (We figure this is one of the bonuses of having only 3 kids...much easier to drag 3 kids around then 5 or six! )

Obviously, Emily's condition has changed things a bit and we have had to learn to be "flexible". Unfortunately this often means only one parent gets to go to things. I am grateful that our kids miss having us all together. It meant a lot to me to know that Jac wanted me there.
For now, I am grateful for video clips, cell phones for updates and pictures to help relive these fun moments!

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

Update on Tummy aches

We spent all day at Primarys today! It was LOVELY!!!

I was going to bring Emily in yesterday but when she woke up she felt great. She didn't have one tummy ache all day! She complained about her throat a few times but that was it.

We went up to see her Ear Nose and Throat Dr. to check her ears and throat. He took a strep test just in case this might be causing the tummy aches but it came out negative.

We ended up doing our clinic day since we were up there anyway which was nice but very long with IVIG and potassium given for 2 hours.

Emily's counts are good and we are thinking that with time the tummy aches, pain in her throat and hurting eyes(probably dry from meds) will go away.

Ironically, Emily's stomach didn't hurt all day at the hospital until we came home! I was so frustrated! This is where my weaknesses show big time. I HATE not knowing how to help her. I HATE not knowing what is wrong!!!! Matt thinks I am overreacting(no he didn't say this in so many words but I can tell!)

SO....we are going to practice PATIENCE and just wait this one out. I am sure everything will take care of itself! Someday I will learn this lesson =)

Beverly Hills Chihuahua!

Thanks to Aunt Monica, Emily has been counting down the days till Beverly hills Chihuahua came out on DVD. If any of you are wondering, which I am sure you are, the day has finally arrived!

We picked it up this morning from Redbox and it served as a great incentive to get school work done! it's a great distraction for tummy aches too.

We are still stumped with Emily's tummy aches and now she is complaining about her throat hurting. Funny thing though, it doesn't hurt when she swallows...hmmm....If she is still complaining tomorrow I will take her in. The nurse I talked to today said if she keeps having tummy aches, we will schedule a scope next week. Hopefully she will get over it on her own or at least let's hope we can find out what is causing her so much pain!

Even though she has these pains she is in really good spirits and has a great attitude. She was frustrated earlier today because,"Mom, I said a prayer and the pain didn't go away, nothing is working!"

What do you say? I just told her how sorry I was and that I am sure Heavenly father is taking care of her. She does find comfort if she puts her heat pad on it, at least she has found a way to make it better right?!

One good thing is that she does have periods in the day when she feels really good. Heavenly Father IS helping her! He is giving her breaks which is a wonderful thing! We are hoping for LOTS more breaks tomorrow! =)

Temple openhouse

Emily took this picture of the Draper temple when we pulled up this morning at 8:00am! We really wanted to go to the open house as a family and the only way to do this safely was to go first thing in the morning.

It turned out to be PERFECT! We felt like we were on our own personal tour. We were the only ones up till the very end when about 10 people came in behind us. It was nice to take as long as we wanted in each room enjoying the beauty of the temple.

The only thing Emily hated were the Sunday shoes I made her wear....NOTHING fits her feet except her pink Croc's and I just couldn't let her wear them in the temple. Well, I probably should have since she ended up walking through with just her stocking feet because they hurt so bad! I am starting to wonder if her feet will ever be back to normal or if she is cursed with Great Grandma Whitings tender feet! AHHH(lets hope not!) =)

We took advantage of being in the Salt Lake area and went to visit Great Grandma Whiting in the rest home. As soon as she saw me she said, "Get Emily out of here! It isn't safe! My roommate has the Peruvian Flu(whatever that is) and everyone is sick around here!"

We felt bad but we gave Grandma a hug and told her how much we love and miss her. Emily was pretty scared when we got out but I told her she was just fine since we didn't touch anything and were there for 5 minutes tops!

We are looking forward to visiting Grandma when she gets to go home....hopefully for her sake, it will be soon! Isn't she so beautiful? Jolyn, your kids really did give you a compliment when they told you that you look like her!(of course, the much much younger version!)

HOME!

Emily got to come home yesterday afternoon. The doctors aren't sure what is wrong yet but she doesn't have fevers etc. so why keep her? The only issue is tummy pain! This is caused by whatever her infection is and they are hoping the medicine she is on will take it away.

Emily was so excited to go home she could hardly stand it! She woke up at 6:00am saying, "I want to go home!"

By the time we were ready to leave her stomach pain was too much to ignore with the excitement of going home. They let us go telling us we may be back.

The pain hasn't gone away yet! It's been over 24 hours and she isn't looking too good. We keep putting a heat pad on it which helps a little but she isn't eating or drinking much which never helps when you need to get better.

The nurse explained that even though they haven't found anything exact, they can tell by her counts that she is really trying to fight whatever it is. When we have an infection it travels in clumps in our blood. When they take your blood they hope they are getting one of those clumps, otherwise nothing shows up even though clearly, something isn't right.

Grandma Whiting came to be with her while we went to church...Grandma always helps cheer her up. I am amazed at how tough this little girl is. She is in so much pain, lying on the couch but still manages a smile.WOW!

Now, I am just wondering when to call the doctors....I really don't want to go back!

I am praying we won't!