Emily's castle

Calling all princesses, there is a new castle in town!

Our sweet neighbors the Carlson's, surprised Emily tonight with a princess castle! Do you think she likes it? It was like Christmas she was so excited! I've never seen her take her bath and do her dressing change on her central line(which she hates) so fast! I have a feeling this will be a permanent fixture in our house for a very long time....we may need to move it downstairs though :).

Thanks Carlson's for your thoughtful and PERFECT gift for our little princess.

Friends make life more fun!

Cambry and Mia Johnson are two of Emily's very special friends. They always have so much fun when they are together!

Cambry was sick this past week and missed a lot of school, including the 100th day celebration at school. No problem, she came over and did the activities with Emily...hopping like a bunny 100 times, blinking 100 times, writing 100 words, writing 1-100 on paper, making 100 day glasses, the list goes on and on!

I am sure these 3 will be life long friends; they have already been through so much together! It is amazing how the Lord really watches over us and puts people in our lives when we need them the most. He knew Emily would need exceptional friends and he made sure it happened! I am so grateful!!

Jac and friends at Skyline swim meet

This is VERY typical of what swim meets are like for Jacqueline, friends, swimming, acting crazy,swimming, making crazy commercials, and more..... swimming! It makes for a very fun and exciting weekend.

She didn't do as well as she was hoping for, but we are talking about 'miss perfectionist' here.

(we think she did great!)

She just turned 13 which puts her in an older age group. She is now the youngest which makes it more of a challenge. If anyone knows Jac, you know she is definitely up for it! She is one of the most dedicated and disciplined people I have ever known.

She has even given up her Monday babysitting job for the next 6 weeks so she can get one more day of practice in each week before State.

Jac has also been working out with me in the mornings doing a weight program for more strength and endurance. She is getting very strong and her arms are all muscle...I have the same muscles but for some reason it doesn't show, I WONDER why???? Maybe if I was as disciplined with my eating....hmmm....

Here is our "Goggle Gal" at her best!

School with the Duncans

Cathy Duncan invited Emily over to do some school with her family this morning! We have been trying to get together for months but with 7 kids someone always seems to be sick! Today everyone was healthy so we took full advantage! Emily loved being with all the kids and didn't want to come home. She kept saying, "I want to come back tomorrow!"

Cathy does such a wonderful job homeschooling her kids. She is a great example of how to do things right! I was so impressed after she read a chapter in the world history book; just how much the kids knew. You can tell they have been taught well.

It is so wonderful to have such great friends and neighbors. It makes doing home school much more exciting when you have days like these to look forward to and enjoy!

Thanks for the great day Duncan's!

Clinic visit

For the last 2 months we have been keeping Costco food court in business with all the cheese pizza we buy. I even had a worker hand me a magnet with their phone number telling me to call ahead next time! Jac and Thomas won't even eat it because they are so sick of it. According to Emily, Costco pizza is much better than mom's homemade...oh well, more for us right?
Cucumbers have been a favorite of Emily's since she was just a little toddler; as long as she has lot's of ranch to go with it!

We went up to Primary's for our 2 week check-up today. Emily is continuing to do wonderful! With a breakfast of oatmeal and nachos(another favorite), she weighed in at 17.5 kilograms today UP from 17.4 two weeks ago. The doctors were pleased that she is 'gaining' so I decided we are happy with this too!
Emily's WBC is 2.7 (3.9 last time) and her ANC is 1.1 (2.2 last time) I asked if this was something to be concerned about and they said "Nope" so, once again, I am not going to worry about it either!
Overall they are very pleased with her progress. It is really nice to have 'boring' check-ups like these...let's keep them coming!

I guess I'll go make dinner...hmmm...Costco pizza anyone?

Thomas' swim meet

Thomas joined the swim team in December and is loving it! He and Jacqueline practice about 4 times a week from 4:30-6:00 and they have a great time!

Thomas had his first meet at Skyline High School. He swam the 50 free, 50 backstroke and the 100 free. He did a great job!

I was so impressed with his optimism when he came up to me full of excitement saying, "I took 22nd in the 50 free." I asked him how many kids he swam against and he replied "25!" I couldn't help but smile and tell him how happy I was for him!

Swimming is such a great sport because it is so individual! It is up to you to do your best and work on beating your own times! It will be fun to watch him as he continues to work hard and keep improving!

I have loved watching him these last two months. He comes home with a smile everyday and he seems much more confident in who he is. He feels like he is accomplishing something. It is amazing how good it feels to be working on and improving new skills!

It is a lesson we all need to remember... When we are WORKING we really are HAPPIER!

School fun!

Thomas had so much fun creating Leonardo De Vince. Mary helped him with the darling clothes! He presented it to the class along with 5 main things that he learned about his life. He worked so hard!

Way to go Thomas!

Wade and Monica come to Utah

Monica came with Wade on his business trip so she could play with us for the day! We enjoyed every minute! When Wade was talking he gave his toothless grin and it hit me, That's where Emily got it! They look exactly alike!

Dinner at Rumbi's was quite the treat! Everyone had a great time trying to use their chopsticks and actually get the food into their mouths in the process!

Being at a restaurant made Emily VERY nervous... She wouldn't eat anything because she was afraid she might get sick. We told her that we wouldn't let her go somewhere that would make her sick. She replied, "Well, you might forget." This little girl really takes being clean and healthy seriously, too seriously sometimes! (What 7 year old doesn't trust her parents?) It is going to take Lot's of baby steps to get her comfortable, which just goes to show you just how much she wants to stay OUT of the hospital!

Monica treated me and Amber to a 'cooking class' (is that what it was??) We now have two hours of memories that will be hard to forget! It was a great learning experience and Lot's of fun! Hopefully, we can be much better at making healthy meals for our families. But that means I actually have to cook for them!

The Buhrleys come to town!

We were all so excited to have the Buhrley's come and stay for the weekend. As you can see, everyone had a great time.

Justin and Gracie got used to having Leo around...they even slept in the same room with him!

I learned how fun it is to take 7 kids to Walmart and Costco; it was quite the adventure!

It was very easy to get the little ones to stay in their beds with a promise of a prize the next morning. They were happy with the candy, even though Justin was hoping for an Indiana Jones whip!??

Making fun of cheesy movies is much more entertaining with cousins around. The late night delirium helps too!

Emily trusts one person to look in her mouth, Dr. Lou! Too bad he's an endodontist and not a regular dentist. maybe we could put a "Lou mask" on her dentist...then she might let them take a look! I was in shock when she opened up without any hesitation...he has the "gift" that's for sure!

Thomas loves having lots of fans come to watch him play basketball.-He was on fire!-

Mac is an awesome wrestler!--2nd place Ya Hoo!-

When cousins are around the FUN NEVER STOPS!

Emily couldn't wait to share her birthday pinata with everyone. The candy went very fast! The kids enjoyed their sugar high.

Sunday we enjoyed FHE at Grandma and Grandpa's. Lou told us a true story of his Grandpa being attacked by a bull. He gave a great lesson that we always remember!
McKay spent Friday and Saturday at a wrestling tournament at UVU against 64 high schools. He took 2nd place! It was so fun to watch him. He is SO STRONG and QUICK!! Jolyn and Lou told me I wasn't supposed to yell so much because it embarrasses Mac...not if it's his Aunt, right? I couldn't help myself...he forgave me :).

heres a few more pictures for the memory book! Thanks for a great weekend Buhrleys and Parishs'...We love you!

More of the Philippines!

Hi everyone, Sorry this has to be brief. I wish I could talk about each photo; but I figured seeing something is better than nothing.

The man pumping water is a Branch President and represents a very typical farming family and their water source. This particular area has contaminated water so part of our project will be to address this issue.

Once rice is harvested it needs to be dried before milling. Often times they use the road to dry their rice and farmers suffer a loss in their crop yield as you can imagine, but they need a flat hard surface, which if in poverty can be hard to come by. The other favorite surface to use is a basketball court. Basketball is huge over here!

Matt

"It's my birthday!"

Emily took treats to her school class today. They sang Happy Birthday to her and gave her cards they had made. They were in the middle of making snowmen so she joined them for the fun! Before leaving, she went out to recess with her friends. It was the cutest thing EVER! I just watched all of them walking around hand in hand talking and laughing...she loved every minute of it. As we were leaving she reminded me that she had to go to the office and get her birthday balloon and treat. She just knew they would be waiting for her:).

Emily chose Costco pizza for dinner of course; and a Dipidee cookie to top it all off! She is looking forward to even MORE celebrating when the Buhrleys and Dad come this weekend!

Emily had a wonderful birthday. She loved all the gifts and phone calls. "Wow Mom, when it's your birthday, you sure do get a lot of phone calls!"

She had a great time telling everyone she met, "It's my birthday today" She even called a few people to tell them!

It was not hard to convince her it was time for bed tonight. When I walked by her bedroom at 8:30 she was already sound asleep :)

SWEET DREAMS my sweet little 7 year old!

Happy Birthday Emily!

If there was one word to describe Emily's life so far, I think I would have to say MIRACLE!!! She has definitely defied the odds multiple times already in her 7 years!

She has always shown such a strong will, full of determination and stubbornness, NEVER giving up! She has been blessed with a love and passion for life that many envy. These characteristics have been much needed gifts from up above to help her get through all that she deals with.

Emily is our social little butterfly; always wanting to know what we are going to be doing and who we are doing it with. She loves, animals, singing songs, coloring, reading books, SNUGGLING and of course being with her family and friends.

She loves to learn about the world around her. It is so fun to go on walks with her (when you aren't on a time crunch) because she takes time to investigate everything she sees!

Emily brightens any room she walks into with her smile, big blue eyes and contagious laughter. She has brought so much joy and happiness into our lives! We love you Emily! You will always be our little princess!!

HAPPY BIRTHDAY!!

Clinic day

Emily told EVERYONE who walked in her room today "It's my birthday tomorrow!" She has told us about a hundred times(NO JOKE) that she is going to be 7 tomorrow!

The nurses were SO AWESOME!!! They brought her all of these gifts and a crew of about 8 people to sing 'Happy Birthday'. Emily was all smiles as she opened the gifts. She LOVED them all. I'm not sure I can compete with all the gifts she got today:)! It was a great way to pass the time as she got her IVIG. This always makes for a very long visit. Emily doesn't mind though because she gets to order food and watch movies...It makes it fun since it's only every 4-6 weeks.

Emily had a great check-up (I LOVE saying that!) Her ANC (absolute nutrifil count)went from 1700 two weeks ago, up to 2200; and her WBC (white blood count)went from 3200 up to 3900!!! She also went from 16.9 kilograms up to 17.4 this week! The doctors are so happy with her progress. She is right on target. The main thing to do now is just watch her counts closely and make sure she doesn't start rejecting.

I asked if we were out of the 'worry' stage and they told me not yet. Actually, she will be in this stage for about 8 more months. Dr. Boyer reminded me that if Emily does have some set backs during this time it isn't a big deal; it is actually very normal. It is nice to have her doing so well though! I had a friend call tonight telling me her kids are sick AGAIN. She asked me how we stay so well. I have to give credit where credit is due and that is from our Father in Heaven! We have all been so healthy(knock on wood!) It is such a blessing because we want to keep Emily HOME! She won't even take her mask off in the parking lot until she gets into the van "Just in case someone around here is sick mom" She is so aware and so careful because she does NOT want to have to go back.

I have decided to take her off her appetite enhancing medicine. Today was her first day and she had a great eating day. Let's keep out fingers crossed. I just hate having her on stuff that she doesn't really need. I want her body to have a chance to do things on it's own.

Emily's Prayers

Emily's prayers are so sweet. They always have the same list...Thank you for all my blessings and help me to not be scared, help me to get better and not feel sick, help me to not think of bad things and doing bad things to my body.

I have asked her what she meant by doing bad things to her body and she said "I don't want to talk about it because I will have bad dreams."
This morning she wanted me to look up "lungs" and how they work etc. I told her that we could see a healthy one and one that was sick from someone smoking. When I pulled up the website she FREAKED OUT!!! She was SO scared she wouldn't even look at the picture! she was so upset she told me she wanted to say a prayer!

I am thinking that when she asks Heavenly Father to help her not to do bad things to her body she is thinking along these lines, not smoking etc. She is seriously SO FUNNY! I told her she didn't have to look at any pictures. Even without looking at ANYTHING, she was shaken up for about 45 min. Just a reminder---don't tell or show anything to Emily that might be 'scary'!

Emily wasn't feeling well today. This is not unusual, at least once a day Emily says she doesn't feel good. Some days she handles it pretty good and able to keep going; other days she is pretty down and out. Today was one of those 'down and out' days. She felt sick all over and even felt like she might throw up. Emily hates feeling sick. She told me she wanted to say a prayer. (We know when it's really bad when she turns to prayer!) About 30 minutes later she was very frustrated because she didn't feel any better. She said another prayer and asked for the faith to get better.

My heart breaks when I hear her pleading with her Father in Heaven. She wants so badly to feel better. I told her that the Lord doesn't always take your struggles away but he will give you strength to get through them. How do you teach this to a 6 year old? She is learning so much about prayer and that having faith doesn't always mean your going to get what you want when you want it. I know these are wonderful life lessons that she will be able to look back on but as her mother, it is hard to watch her living it day in and day out.

This afternoon she was back to feeling good again and she was SO happy to not be feeling sick. I reminded her that the Lord did answer her prayers. She just smiled and hugged me.

Emily reminds all of us, me, Matt, Jac and Thomas to pray for her EVERY NIGHT!!! She seriously can't go to sleep until we have all assured her that we are praying for her, that she will be safe, not be scared and that she will feel good. Even though we get tired of hearing her requests each night I can't help but think how cool it is that she knows prayer has the power to bless and bring her peace. I am so grateful for these reminders. Isn't it so true that when you know your loved ones are praying for you, a peace and comfort comes in a way that is very hard to describe. It is REAL, I can testify of that!

Sorry for my jumbled thoughts. I just want Emily to be able to look back and remember how and what she did to get through her rough times. Life teaches us so many things. I have just realized the challenge is to REMEMBER those things and use them to make us better people!

A look back on 2008

Our Family's highlights:
The greatest part of 2008 was definitely being together as much as possible! It was a great year full of many adventures that kept us on our toes! We have made many memories that will last with us for many years to come!

Emily's highlights:
Swimming, loves being home, loves being with Leo, I lost my hair, my hair is growing back, staying at the hospital, having a bone marrow transplant, having a LITTLE fun and ordering food. Going to Arizona for Joslyn's wedding,(I got to have coconut slushies!) The whole year was the best!

Jacqueline's highlights:
My addictiveness to blogging is beginning to wear me out...just look at the collage!

Thomas' highlights:
Taking 2nd in State wrestling, going to a new school, my 10th birthday, flag football, swim team, and Christmas morning.

Wow! We have it VERY good!

In the Philippines they have cell phones, everyone text messages, and some have computers; but all the government dealings in the place I'm at is done the old fashioned way. The treasurer was filling out the books by hand, records were being kept on chalkboards, and the typewriter you see above was the most advanced technology in their office. In the developing world, you find an eclectic blend of technology!

There are a couple of private hospitals which have nicer facilities, but you see a dramatic drop off in care if you don't have money and need to be treated at a general hospital subsidized by the government. About 10 babies are born each day on this "state of the art" birthing table. (I think I would rather have my babies at home!)

Matt in the Philippines

Matt is on a 12 day trip to the Philippines working on water projects. If you look close at this one, you'll see a church in the background. It really is beautiful! He is sooo HOT! It's about 80+ degrees. Don't you feel sorry for him? Well, at least one of us is enjoying warmth and sunshine! (Yes, I know Monica, we just need to come to Arizona and we can have it ALL the time!) For now we will have to enjoy it through pictures.--Let it snow, let it snow, let it snow!

This is Matt with one of the stake presidents standing in front of one of the water projects built by the church. He is loving his experience. They are staying in a small town that has only 2 restaurants that they trust eating at. He says that the portions are SO tiny! It's amazing how we are so used to American portions! This is funny coming from a guy who really doesn't eat big portions anyway. At least he doesn't have to worry about gaining any weight!

We miss him here at home but we are so happy that he is having amazing experiences meeting and learning about such wonderful people!

Emily's birthday party

Emily is turning 7 years old on the 14th! She decided to have a "late night" party with three of her best friends. (yes, she would have LOVED to have had ALL of her friends but mom wasn't quite up for the challenge!)

It was a "FISHY" party full of fishy games like "Nemo, Nemo,...DORI" (Duck, duck..goose), a fishing pond, decorating fish cookies, eating yummy fishy cupcakes(thanks Leesa!), Oh yea, they also had pizza, ice cream and fishy crackers... a very well balanced meal don't you think? Aren't I a great hostess?

I love these kids! They are so easy to please. After watching some "Finding Nemo" we ended the night making snowflakes...They think I am very talented! (of course, there were no others to compare them to...good thing they haven't seen what good ones can really look like!)---let's keep it our little secret!

I am so glad Emily was able to celebrate with Cambry, Mia, and Kaleb. They have been such a great support to her during the past 6 months. She knows they love her no matter what! Even though she looks different and may not have the energy that she used to...they have been so patient and understanding. On days that she isn't up for playing, she often gets a call from them to see how she is doing. It is so fun to listen to them talk and play with eachother! It is amazing to me that even at this young age, Emily has been blessed with such sweet and wonderful friendships. True friends really do help you get through rough times...another tender mercy!

fun with floam!

The things you can do with 'floam'! Emily and her friend Benjamin had a great time decorating themselves. Kids can make anything fun!