The rodeo...

Cody got tickets from work the weekend before he left and we went. My sister Laura, her hubby JD, and their boys Jake & Josh were planning to go already so we met them there. It was super tough to get a picture of the action, technology isn't exactly my best friend and I still don't know how to work my own camera very well. Sad there's no pics of Cody, he had the camera most of the time. :( Miss that boy!

Anyway, here's what we saw, well, there was more of course, it was a rodeo... :)

Here's me and Laura, chatting away...

I can't believe how often (seriously!) we get confused for each other. Everywhere we go people mistake us--it's like high school all over again. "You must be twins!" Guess I'll always be "little Laura". :)

I must have been totally distracted and didn't see Benny eating Sarah's "scooby snacks" as we call them. She seems irritated. Hee, hee.

Jake and Ben

Here's JD and Jake right after Jake did the chicken run. It was literally so, so funny and Jake, who's three, did great keeping up with all the big kids.

We can see how Aimee felt about the Bulls, too scary for her!

Not sure what's up with Jocelyn lately. She's happy, chatty and her normal self at home, but in public she's super quiet and doesn't really smile.

What's up with that? A phase?

Awfully sweet.

I'm a sucker for pictures of my kids lovin' each other.

It's good for a momma's heart.

The way they eat....

says a lot about their personalities...

Ben

Careful, methodical, hands me his bowl half full of milk asking for more cereal. Says please and thank you. Rarely spills. Left handed.

Can get dressed before eating breakfast.

Sarah

Definitely cannot get dressed before meals. Uses both hands, promptly throws spoon on floor.

Ends up with a bowlful of milk in her lap or her tray (which she sucks and slurps up--it's hysterical!)

Strategically places every piece of Captain Crunch on her face and in her hair, that includes the one in her ear. She stuck it there to save for later no doubt.

Ok, I had to go back and add these...

I guess that means she liked it!

Sarah's birthday

In February, our Sarah Mae turned one. I was devastated. I always get that way. It's so hard to realize how quickly the years go by and that soon all our little chicks will fly the nest. How dare they right!?! I remember my mom threatening us that none of us better move far away from her when we grew up and so far it stuck, none of us have. As my kids grow up I think I'll say the same thing to them.

Here are some great memories of Sarah's first birthday....

Ben and I were gone at the hospital most of the day (Ben has 5 stickers on his shirt, one for every time they couldn't get his IV in) on Sarah's actual birthday. It was a long day and I felt bad for ditching Sarah, but when we got home Dad was well on the way to making it special, he'd made a big tent in the family room. It had two big rooms and was totally great. The kids loved it! What a wonderful dad!

Sorry Jocey, didn't mean to cut you out of that picture before...

Here's the tent from the outside, not as cool looking on the outside as it really was.

Joc had to memorize "Chicka Chicka Boom Boom" for school and she practiced on us constantly. We all learned it through and through. I miss it actually, we had fun with it.

Sometimes I think Sarah came to our family when she did for Ben's sake and for mine. It astonishes me how close Ben and Sarah are, how much they love each other and how good it has been for Ben to have his sweet sister only 15 months younger than he is. And as for me, I didn't realize how much I needed her, how much joy she would bring to my life. Her smile truly brightens my day. She is darling. I really don't like having my picture taken. I think I look old and haggard. In my defense it had been a really long day at the hospital. Anyway, I decided I really wanted a picture of Sarah and I on her birthday. I know it's silly, but someday I hope she'll be able to look back and remember how much her mama loves her.

The party was on Sunday, a old fashioned hot air balloon theme.

Sarah happily played waiting for her guests to arrive.

The Cakes...

Super simple but tasty.

Since Sarah didn't head face first into hers, Joc & Aimee did in theirs.

They're so funny!

And Ben found Papa, and his cake. He'd already finished his own!

Sarah was the star of the party though, and she loved it!

Oh my gosh Sarah, you are gorgeous!

Happy Birthday baby girl! We love you!!

Gradually catching up on posts....

Last week Taylor, our niece-Brandon & Amanda's daughter, had her third birthday at Chuck E. Cheese. I have avoided that place like the plague because I still have nightmares from my childhood. The ones I went to in California had black walls, no windows, and creepy puppet creatures that moved in the corners of the rooms. You can imagine why I was traumatized. So our kids have never been, but surprisingly, the restaurant has changed and was much more pleasant than what I remembered. Here are a few pictures...

Taylor, the birthday girl. Can't believe she's three already.

I thought it was funny Amanda was willing to wear Taylor's inflatable crown to

catch more tickets in the little ticket booth. It's expensive to have a birthday there, but they do give you tons of free stuff. When we were leaving I was amazed. Taylor looked like she'd robbed the place she had so much loot!

I feel so badly for Ben. Since we found out he is allergic to all milk products his life has been really un-fun. And Chuck E. Cheese's when you can't eat anything but what mom brought from home and then the party afterward with cake and ice cream and you just get a fruit snack were the last straw. He cried so sadly. Ben did have some fun riding the horse, but most of the time he was either....

distracted watching people eating...

or just plain irritated. Poor kid. This new diet will take a lot of getting used

to for all of us, and we all feel so badly for Ben. We're still waiting to see if he has Celiac Disease too which would mean no gluten products. Then I don't know what we'll feed him!

I mostly held Sarah so we don't have a lot of pictures of her. She didn't like the

rides but the food was top notch in her book. Bring on the breadsticks!

Jocelyn was a good sport and would try almost anything. She wanted to play

air hockey so bad, a girl after my own heart, but the puck was missing.

Aimee had a blast too. It was fun to see the kids just having fun. I worry they

don't get enough of it. And the girls dote on Taylor so much it was great to celebrate with her.

Here's a shot of the kids waiting for the picture of them to pop out

of the machine. Jocelyn has the "please, oh please" look on her face. So cute!

It was a fun night, Taylor had a great birthday I think!

Easter

Well, it's never fun to celebrate a holiday without Cody. He is definitely one of the kids with his boyish enthusiasm. But when he's out of town, or the country in this case, we miss him, but try to have fun anyway.

We did color eggs together. Nothing fancy like in years past, but simple is fun too. Sarah did not think she could possibly get close enough to those eggs.

On Easter Sunday we had Cody's parents, Ken and Gayle, and his brother Tieg and his four boys over for a way yummy breakfast. You know me, I stayed up late baking and we're still eating the leftovers. And believe me, no one's complainin'! (Cody, I thought you'd like this picture of your parents all dressed up for church with us. Wish you were here.)

Here's a random picture of Ben a little overwhelmed with the excitement.

I thought this was a cute one of Sarah and Papa.

He's great with babies-especially loves the girls, and they sure love him too!

I usually never include pictures of myself in my posts, ugh, so Cody it's a sacrifice for you sweetie. We love and miss you! I wish I'd have taken my camera to Laura's house that night for Easter dinner. We had a great time there too and Laura, true to her reputation, did a fabulous job with everything. It was really important to me that Easter was more a "holy day" than a "holiday" and I think it was. It was a really nice day, and was made even better because we spent it with family.

Do you ever feel like this?

Me too, isn't it awesome! I know life is crazy sometimes, but I am so thankful I get to stay home and take care of our four babies and our home. I feel so blessed!

(But now you know why I don't always answer the phone when it rings. I think Moms should have two more arms, like the retractable, super long, "go go gadget" kind.)

A good lesson for my faith...

I believe we are on the earth to grow and learn and come as close as we can to our full potential. My logical, rational mind knows this is best achieved as we are tried and tested through the circumstances we encounter in life. I know it is in the refiner's fire that we are stretched and polished and that this is the only way it can be. I do know it, and when I am thinking logically, or rationally, or more in tune with the spirit than I was earlier today, I feel it deeply within me. And in those moments, truly, I am thankful for the refiner's fire, because really I do want to be better and I do want to grow and progress.

Sometimes though, I'll admit, I feel nothing but exhaustion. Physically, emotionally, and mentally. And if my own exhaustion wasn't enough, I watch it on the faces of my husband and children. I see that I am powerless to intervene in circumstances of life; that trials that affect me are not mine alone to bear, as I would much prefer. I find it difficult to see it in my children especially. I wish that worry, fear, fatigue, trial, frustration, loneliness, uncertainty and pain were not a part of their life, but then not really, because I want them to have the opportunity to grow and learn as well. It is a struggle for me though, it's true, I wish life was a little less complicated for my little ones and there was more time for them to just be kids. I wish there was more I could do to ensure they won't grow up to be victims of their surroundings but rather the strong, independent, faithful, wonderful people I know them to be.

Maybe I just need more faith all around: faith in them, faith in myself, and most importantly, faith in Heavenly Father and the Atonement of Jesus Christ. But I am not perfect, and some days I struggle. That is when I need, more than any other time, to cling to what I know and the miracles I've seen, to my family and dear friends, and to remember, as the song says to "count my many blessings".

Here's an update from Monday and Tuesday of this week:

Monday Joc & Aimee went to the dr. Jocelyn had a test showing her bladder reflux is much worse than it had been (we'd hoped she'd grow out of it) and Aimee's been struggling too. Aimee is going to have a test on Friday to see where her condition is and we are preparing for Joc to have a reconstructive surgery in the very near future.

Tuesday Ben met with his cardiologists, then the dietician (who says he needs to gain some serious weight in the next two weeks or we're going back to the NG feeding tube), then we met his new oncologist. I knew we had the appointment to meet the oncologist but I guess I was a little oblivious or unclear why. I didn't feel I'd heard a clear diagnosis for Ben from the cardiologists, so I wasn't sure what we were dealing with. Well I heard it loud and clear on Tuesday, and if I'd been sitting I'd have fallen off my chair. PTLD, Post-Transplant Lymphoproliferative Disease. It's a form of lymphoma, basically cancer of the immune system. All the time I thought we were just meeting the oncologist to answer my questions or in case it ever turned into that. Actually, it was our first "Cancer Clinic" day. What a shock! I was a long day beginning before 8am at the hospital and we didn't get home til about 6pm. But I did get my questions answered, they weren't all the answers I wanted to hear, but that's ok. At least I know where we stand and what's going on. The more information for me the better. Even statistics (which are frightening!), but I do agree with my sweet and patient friend Staci, who knows Ben so well. She was cheering me up tonight and reminded me, that when it comes to Ben, statistics are just made to be broken. There truly has been no holding him back before and we can only hope for the same with this new challenge. I mean why not, if it's Heavenly Father's will that Ben sticks around for a while longer, then that's what will happen. And you wouldn't hear me complain, I love our little guy!

I'll try to post more when I can. I know I'm not very diligent at it, but just know we are still here and have taken the advice my mom used to tell me when I was a girl-- "Just keep on keepin' on". For right now, that's all we can do.

Update, well what little info we have...

Ok, where do I start? I guess I want to thank everyone who's been fasting and praying for Ben. I am sorry I didn't have time to post last night that we were doing a big fast for him today. If you are interested and didn't know about it, feel free to pick another day this weekend to fast and pray for him. We appreciate your faith, prayers and support so much!

So, long story but.... Ben has been sick since last May. Of and on fevers and times where he was so, so bad, (ER visits & hospitalizations), but mostly just really bad sinus/cold sxs that wouldn't quit. ENT tried everything they could think of and finally he had a CT of sinuses in January. It showed they were badly diseased. Surgery was scheduled and took place Feb 16, last Wednesday. Ben had a super major sinus surgery as well as having his adenoids out and tubes put in his ears. The surgeon said the sinuses were much worse than he thought and there were several parts he couldn't reach to scrape the bone down. He did the best he could. Also the adenoids were large so they were sent to pathology for tests. Recovery from the surgery was hard and Ben was not able to get off oxygen. So he was admitted where he stayed till Sunday. There were way scary times where he would de-sat to the 50's in an instant and spike fevers 104's. He'd gotten an infection while being in the hospital. But he did come home and has been doing ok. Getting more like himself though still sick.

Last night the lead Transplant Cardiologist called me herself. I knew something was up when she asked if I was driving, she said she needed to talk to me and didn't want me to freak out. (Like I am prone to that, right?) Anyway, I guess initial tests on the adenoids in pathology seemed ok-ish, but when they were looking at the tissues under the microscope it really didn't look good and so they ran tests. It was positive for one of two things (unfortunately this test isn't very conclusive). Posttransplant Lymphoproliferative Disease (PTLD) or Ebstein-Barr Virus (EBV), the first is essentially lymphoma, cancer. The second is also known as what causes mononucleosis (just imagine a tiny, immunosuppressed kid trying to fight mono!) but it also usually causes PTLD anyway. Here is some information about it if you care to read, it is lengthy but interesting if you like medical terminolgy.

http://emedicine.medscape.com/article/431364-print

I took Ben down today for a bunch of tests- a full body CT scan and abdomen ultrasound to see how advanced the condition is, (is it only near the adenoid region or all over his body, how the lymphnodes look and the size of his spleen and liver, all indicators of severity), as well as lots of blood tests to try to determine if it is PTLD or EBV. We won't get the blood results till maybe Monday or Tuesday (something to stew and worry about all weekend), but unfortunately the radiology tests showed enlarged lymphnodes all over his body, so what ever he has, he has it all over, not just where his adenoids were. I haven't heard what the spleen/liver looked like. Dr Everitt had me feel with my fingers enlarged lymphnodes she found in his groin, under his arms and his neck. I am to check them daily to see if they are getting bigger. For now his anti-rejection meds were decreased, in an effort to let his own immune system try to fight this. Danger there of course is his immune system could realize he has someone else's heart inside him and reject and attack it. Danger if you don't decrease meds is the infection will ruin the heart anyway.

At this point, none of the options sound good. We are trying to be hopeful, he really looks the same as usual (usual for Ben that is), and we have faith that what ever happens will be the Lord's will and for the best. Please keep Benny in your prayers. Thanks!

Please say a prayer today

Please keep Ben in your prayers today if you're able. He's having a pretty major surgery, not heart related, but still scary. No time to update right now, will try to soon... Thanks!