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!

Mom's helpers...

This is a random post that I've been thinking about for a long time. When Sarah was born, I'll admit it, I was terrified. After Ben, something happened to me, emotionally and mentally and I just am not capable of handling as much as I used to. I get overwhelmed much easier it seems and feel discouraged with myself a lot. Add to that, Sarah was SO colicky for the first 4 1/2 months of her life and hardly spent a moment not SCREAMING. I joked that she just knew she was the fourth child and had to speak up to be heard, but inside I was going crazy! She cried all day and ALL night. She rarely slept! It was a hard time mostly because I was too prideful to ask for help when I was too exhausted to keep going. So I kept going. I was finally shaken into the reality that I needed help when something horrible happened. Ben suffered a terrible, really, really terrible burn. The kids were almost late for school. I had to have myself and the babies ready too because Ben had a dr appointment right after I dropped the girls off. Everyone was ready and waiting by the door as Aimee read a story to the little ones. I ran upstairs to brush my teeth (the last of my personal hygiene rituals I hadn't yet given up on). I had had the flat iron straightener turned off and cooling behind the bathroom sink. I moved it so I wouldn't shock myself while I brushed my teeth. I never heard Ben come in. He is so quiet. I didn't even hear him screaming because he is literally silent when he cries most of the time. I just happened to lift my head up and see out of the corner of my eye his whole hand was grasped tightly in the inside of the flat iron and he wasn't letting go. He was screaming in agony but wasn't making a sound. I'll never forget the look of terror and pain on his face. He suffered really bad third degree burns on the outside of his hand and wrist area and the whole inside of his palm. I panicked, cried, immediately took him to the closest urgent care place. The doctor worried me when he walked in and the first thing he said was he was going to go call the plastic surgeon at primary children's. What?! Could this really be happening? After all Ben has been through, I must truly be the worst parent to ever live! It was the breaking point. He has suffered so much because of that burn and I won't ever forgive myself for that. We have been going to the Burn Unit at the University of Utah since then and his hand has improved so much. He didn't loose mobility like they were concerned he would. (I did try to be perfect in taking care of it just the way they taught me to and did his physical therapy all the time.) He didn't end up having the skin graft we'd planned for either, thanks to a priesthood blessing. It really looks so much better though we still get lots of comments about it. Oh man, I can't tell you the agony I have felt for this one! But like I said, it was a blessing in a giant disguise. Because I think something was bound to happen sooner or later. When I look back I sometimes wonder if Ben's burn didn't actually prevent something more tragic, like me falling asleep at the wheel and killing all my babies in a car accident. That kind of stuff happens, and I am so thankful we were blessed and carried through that time. Anyway, to get to what I wanted to write about, finally!... After that I decided I needed help around the house and with everything really. I was a basket-case I think and so everyone had to start sharing the load a bit. Here are a few fun pictures I found of the help I received from my kids. Cody helped a lot too, he always has been a great help, I just never take pictures of it. (No one wants blackmail lying around!) The best thing about the kids helping though is that so much of it was spontaneous! They just saw a need (there were lots!) and they helped and I am so proud of them!

This one is blurry, sorry, I only had a half second to grab the camera

when I walked into the kitchen and saw Ben sweeping the floor.

Whoever said child labor was a bad thing?

Here is Aimee letting Sarah eat her face off at the hotel in Disneyland.

Really this little distraction for Sarah is a huge help sometimes!

Ben had just learned to climb onto the couch by himself and what

did he want to do? Hold his sister! You can't see it in the picture but

he was actually trying to read her a book. Darling!

I love these two pictures! Aimee is at the perfect age for mommy-ing

and she loves having a baby sister to practice with. She is definitely

my go-to extra hands when it comes to holding the baby.

Look how cute they are!

At Jocelyn's birthday Ben was trying to help by feeding Sarah

some paper from the floor. Mmm, thanks Ben!

Aimee reading to Sarah.

Ben trying to get out a wipe he would later use to wipe Sarah's nose.

I thought that was pretty sweet.

Jocelyn holding Sarah's bottle while I herded all the kids

at Aimee's birthday party.See the way Sarah is looking at her?

This has to be one of my favorites. Joc woke me up one morning dressed

and sporting her apron with her doll on her hip. She'd gotten up early and

made breakfast for everyone and set the table so well. She is awesome!

Look at her "don't take my picture" expression! :)

Ben found a way to help Sarah stop screaming. He just lays his head

on her and she stops. It's comforting I guess. He has a new variation on

it now, he sits on her and says "Neigh", like a horse! Surprisingly she loves it!

She and Ben are so close and it's so fun to see them interact!

Aimee helping mom again, thanks Aim!

Jocelyn holding Sarah when she was tiny. Remember I had pneumonia

when I delivered Sarah, that's why she was early, so Joc would come lay

with her when I would be coughing too much to hold her. It was such a

help to me and I love Jocelyn's proud Big Sister expression!

She is truly the perfect Big Sister in every way.

My most favorite picture of all. I had to set screaming Sarah down for a

minute to change Ben's burn dressing. I was alarmed when I realized

she'd stopped crying and I was afraid she'd stopped breathing! But to

my amazement, I found Aimee holding her--Sarah was fast asleep, while

Aimee was intently reading a little "Meals on the Go" cookbook!

Oh what a little Mommy you'll be someday!

And finally, while it's true the mess in the background was Ben's doing,

I thought it was darling when he went all the way up to his room and

came back down with a little book and read it to Sarah.

He seemed irritated I'd interrupted though!

These are just a few of the countless times my sweet kids have saved me in a brief moment of insanity. How thankful I am for you Jocelyn and for you Aimee and for you Benny and for you little Sarah! I love my sweet babies!

(P.S. After looking at these cute pictures you probably can't understand why I was so stressed--not one picture shows Sarah as much as frowning, let alone screaming. Well what kind of parent takes a picture of their kid crying? Trust me, she DID!)