Trying it again...

We started out early this morning going to the Concussion Clinic at the U.  After tests and stuff, they think Kauri should keep doing what she's doing... NOT OVER DOING IT.  The don't think she should be going to school for the full day.  So we'll just keep doing things day to day, like we have.  She has to go back in 3 weeks.  She has to go to some therapy to help her, but it will be in Bountiful, so that will be much better.
While taking some of her tests, she'd say, "Dang it" or "shoot" or "oops" or "what?" or "Oh great".  It was too funny.  Mom started Tallying her.  She said "Dang it" 15 times and "oops" 5.  At one point mom burst out laughing, because she was working so hard on the test, and then it would correct her.

How's your balance?

 Then we went to her Dr. at Primary Children's.  Since her labs were taken yesterday, it was just to talk about what approach to take now.   Even though her levels are high, he says he thinks we should play with fate, and try her on the liquids and no fats.  Just kind of play with it.  If she's not "symptomatic", we'll just keep adding stuff.  But if she get symptomatic (sick) then we need to slow down or stop food.  So she needs to really tell us how she feels.  Hopefully, if she's nice to pancreas and doesn't over do, it'll be nice back.  She still has to be on the TPN and Lipids so she still has Marty, probably for the next week, but Marty with food is almost bearable for her.  With her levels high, but she feels okay, we're hoping to trick the pancreas and help it think it's not mad. ? . ?

Kauri was so happy, she was smiling from ear to ear walking through the hospital.  We stopped at the cafeteria again to buy her a Sprite.  When we got out to the parking lot, she said, "I'm so happy!  Can I drive home?"  Mom bust her bubble by gulping and saying, "Um, we'll go find an empty parking lot, later... a lot later.... "  It was all pretty funny.

Ups and Downs

Today was a good day to be able to see people rally around and do such a nice fund raiser for the Hansons.  It was nice to spend a little time with the Hansons, between Farmington Jr. High and Viewmont.  It's been a long time since we've been able to.  These kinds of UPS are so good for Kauri and all of us.  Then there's the DOWNS...
They home health nurse came and drew her blood between the schools.  Good news, her lipase went DOWN, but then there is the rest of the DOWNS... not very much.  But 143 lower is still going DOWN, but just so slow, way to slow.   So now it's 1341.
Tomorrow Kauri goes to the Head/Trauma Dr. at the U, and then her stomach Dr. at Primary Children's so we'll see what is UP there.

Keeping on keeping on...

Not a lot has happened since last Thursday.  Kauri just can have NO food, liquid, NOTHING by Mouth (The Dr. calls it NPO - "nil per os"--literally mean mean "nothing by mouth.") We are learning all kinds of medical terms and procedures.  We never dreamed we'd be changing TPN  (Kauri's nutrients) and doing all this nursing stuff.  It's amazing what we're learning.
So that is about it, on the what is going on.
We moved Annika's stuff up to Logan on Saturday.  And she left to move up there yesterday, after we had her birthday party.  It was a tough time.  Annika has been such a support and help to Kauri and Mom, that it's going to be more hard to have her go, this year, because of all of her help through this last month.  So there were mounds of tears through the day yesterday.
Today, she went to 3 periods of school, then went to FJH to help with a fund raiser for Gabe. 
She gets to be off her PICC line for 6 hours a day.  She gets very hungry during those 6 hours off.  You would think it wouldn't make a difference, but she can tell a HUGE difference after a few hours off.  (Not that she's not hungry anyway, but famished by 6 hours.)  They still give her the same amount of TPN and Lipids, but just the pumps pump faster.

A month now of no food, except those couple days of clear liquids and no fats.  Kauri just keeps on keeping on...  she's amazing.

Getting all ready to shower.

It's good you can't see the tears so much on this picture.

At Farmington Jr. High with fund raiser for Gabe.

One day at a time...

Kauri went to school today but only to see where her classes were and to get work she might need. Annika was a great tour guide of where the classes were. The office wanted to give her map but Annika was the real deal. She knew what she was doing and was a great help.
Then by 8 Kauri was home doing homework. She probably did it for 5 hours today. She really doesn't want to get behind.
We had to go to Costco and Kauri came. (good thing the samples weren't as good and there weren't as many). But Kauri was happy to see her dream cake. She is so looking forward to eating.

Kauri took her night walk to the corner. She needs to get her strength up for basketball. She's not going to school tomorrow. Hopefully by next week. And hopefully it'll be cooler. That school is so hot and she can't get a drink. So we'll keep taking it one day at a time.

MRI

Sporting the new attire for MRI

It isn't over

The CT scan looked good - great news. Her lipase levels and now amylase levels are up - not good. Her lipase is 1484. Up 400 and her amylase is 184. And should be under 120. She never had trouble with that. So back to no food or drink. Marty will still be a close friend.
So more test. MCRP to check out the ducts. Sorry Kauri. You're a hero to us.

Labs, tests and Dr"s

So labs were drawn. Not as bad as usual in her hand because she has had a little something in her to give her some veins. We still don't know the results...

Now on to CT scan. She has to drink 3 cans of sprite with contrast in it. Now that's asking a lot! She hasn't drank more than 1/4 cup of anything in one setting. It's good she has an hour and a half to do it!

One down, two to go!

Two down, one to go...
This isn't so easy. She wasn't feeling the greatest before. She HAS to keep it down. Just wonder if she'll ever like Sprite again!

3 down. Now we hope it stays down. She's not feeling so good!

Not feeling so good after. Maybe sprite doesn't settle stomachs. But she's done. Now waiting on the Dr.

The waiting continues

Kauri had her Dr. appointment for her wrist.  The x-rays looked good.  The Dr. was kind to her, and just put her arm in a splint, so she can shower and not have to worry about a big old cast.  He said it was like a cast, and to be treated as a cast, but no cast!  YEAH!  We were at the Dr. all morning for this... more patience!
Now, about the PICC Line.  We have NO idea what is going on.  Kauri is eating a bit (not much, her tummy can't handle too much) and a little bit of low fat, but her lipase levels went up 300 more, back up to 1074 from 735 (the normal is under 220 - her highest was 2 1/2 weeks ago and it was 1452) and her amylase went up and it never was above what it was supposed to be and now it is over.  So it's very frustrating.  She feels good for the most part, but gets nauseated and pain at times, too.  We haven't figured any of this out.
All we know is the pancreas is a very moody and angry organ.  It doesn't like to be touched, bumped or hit.  And when it is, it likes to make everything miserable.  I guess when you break a bone, we cast it, and keep it still and it heals.  The pancreas is an organ, and when it's hurt, it still has to keep moving, it can't keep still, so while it's trying to heal, it lets everything know.  And Kauri's is very angry.
So tomorrow it's back for a CT Scan on her tummy to see what's going on.  So we have no idea of anything now.  It's almost like when she came home from the hospital and we had no idea.  We are very good on changing her TPN and Lipids now, though.  And Kauri continues to be patient.

Her hand is free!  She got to wash her hand for the first time in 25 days!
It still was dirty from the accident.
Notice good ol' Marty's tubes still by her side.
Marty even beeps her name regularly.  He's getting way to attached to her!

Slowly but surely....

Kauri did a lot better the rest of Sunday. Home health came and drew her blood. It went down to 735. So that's down 100 even with her bad day. We were worried.
We called Primary Children hospital in Riverton asking if we really needed to drive the 50 miles to have him just read her levels and make decisions. So mom called the dr and they thought it wasn't necessary either. So that was nice to have one less Dr appointment.
After talking to her trauma Dr. And to her regular family Dr. To the home health nurse were going to try her on some low fat foods. Draw blood tonight. And then decide if good old Marty can go (the PICC line can come out). Since her levels are coming down even though their high still we can give a girl a break, too. But we don"t want to rush things so we have to put it in again. It"s a big deal to do.
So they suggested giving her a break. So we freed her from Marty for a few hours! Yeah! So now were going to buy her some turkey and something else low fat to see how she does!

She's free for a while!!!

Oh, Kauri Girl

Today Kauri felt a little dizzy and sick.  She wanted to take the sacrament so we arranged for her to get some special bread that didn't have any fat. During the sacrament Kauri felt a little nauseous so mom and Kauri ran to the bathroom.  Kauri wasn't able to keep everything down.  She lost all she drank/ate and then some.  She then waited in the foyer when she lost it again.  So Annika took her home where she continued to be nauseated.  She kept saying that the pain was awful.  She didn't have anything left in her stomach, yet she still continued to dry heave.  Now she finally is getting some sleep.

As you can imagine, Kauri's spirits are pretty low today.  She is so sad.  She was so hopeful that things were good and she was getting better (maybe she still is.) While watching Kauri sleep I was thinking about faith.  There have been so many loved ones who have exercised their faith through this whole ordeal.  Faith that Kauri will be healed, faith to understand, and faith to grow.  Watching Kauri be sad and be so sick.  I couldn't help but ask the dreaded question. Why?

Then the music that was playing to help calm Kauri down and to help her drift into sleep played a song that comforted me, and that I hope will comfort Kauri as well as some others who ask, Why?

Keep the Faith-Jenny Phillips

The storm is rolling in, and you're wondering where He is.

As the billows are tossing high.

You feel alone, and He truly knows

Even when you're in the dark. He's there,

Right where you are.

Hold on

Even when you're eyes can't see your destiny, 

He still believes.

Be strong, He can see tomorrow's change.

He's the surest way, 

Keep the faith.

He sees the daily grind, and He feels each tear you cry.

 He understands your heart, 

He never forgets a child that is his. 

Nothing escapes his view. 

He's there pulling for you to

Hold on

Even when you're eyes can't see your destiny, 

He still believes.

Be strong, He can see tomorrow's change.

He's the surest way, 

Keep the faith.

He is the surest way.....Keep the Faith.

Kauri is going to be healed.  It isn't on our time.  Our loving Heavenly Father has a plan.  We don't know all the answers to all the questions.  I don't know Why Kauri is still suffering, I do know that Heavenly Father loves her and His son Jesus Christ knows what she's going through.  They are both there for her. 

Thanks to Jesus Christ we can Keep The Faith.  Christ is there to help and lift anyone who may be falling.  Just like in this picture, Christ is holding our hand lifting us out of any stormy water that comes our way. The Savior is our loving older brother who will do anything He can to help us.  He will always be there for us, anytime we need Him. He can get us through the rockiest places, He'll pull you out. Christ will lift Kauri. She needs to keep "holding on" and "Being strong, He can see tomorrow's change."

 We just need to Keep the Faith.  

Getting out in the world... (or at least to The County Fair)

Makenna spending hours straightening Kauri's hair.  She loves her sister!

 Hanging out-or hiding out from the sun-having fun :)

 Paparazzi. Kauri LOVES them...who doesn't?

 Kauri supporting Mason and Makenna auctioning off their lambs.

 Look! Olivia has a backpack too. They're cute!!

 Kauri got her mango FAT FREE flavored ice at Zephonies

 Enjoying being outside on a summer day.

We were "faired" out.  Ready to go home.

After the fair we enjoyed being home in an air-condioned place.  Then Kauri, Mom, Hayli, Makenna, and Annika went to see the movie, The Help.  Two sliced Hilly anyone? haha The movie was fun for the girls to sit back and relax...even when Kauri started beeping.

Baby Steps... to Baby Food!

Well, we got a call from the Dr. saying Kauri's Lipase had gone a little up,  from 835 to 856.  Mom got sick right when they told her, but then they said something good.  They said they wanted her to try eating, real soft and NO fat foods.  Just a bit, and see what happens.  With her drinking a bit, and it only going up 21, it might take time to break her back in to the "real" world of food, they felt like this would be a good thing to try.
Kauri was soooo happy when we told her.  She had banana baby food.  She also had a little bit of scrambled eggs.  (Egg beater style) and thought they tasted WONDERFUL!  Most people would say, "who've thought baby food would bring such a smile to a big girls face," except some of us here, like banana baby food.  But Kauri loved it!  So now we just hope it will set right, and her pancreas will be nice about it!

Still not so fun drinking

Well, Kauri woke up with a sinus infection, so that didn't add well to her stomach.  So she's just had a long resting day.  Her lipase went up 21 from yesterday, probably due to drinking, and her pancreas isn't liking to be disturbed.  The more we learn about the pancreas, the more we see why this has been so hard.  One Dr. said he learned in Med school, "we never mess with the Pancreas".  It's a moody, grumpy organ. 
The Dr. called today and said we could try something soft with no fat.  (That's kind of tough to come up with).  We'll see what sounds good to Kauri....green beans?  Egg Beaters? So things are just going real slow.  She's still as patient as can be, but getting a little tired of all of this.  I guess 20 days of not eating, and only a little bit of drink the last day, would be difficult, and then putting everything else with it... She's amazing!

Drinking that clear liquid

Well, drinking clear liquid hasn't been as nice for Kauri as we all hoped.  She can't drink very much.  It bothers her tummy, but she's not throwing up, so that is good.  So she hasn't drank very much.  They showed us her stomach in the ultra sound, and it's collapsed, so it's not very big, and can't hold much of anything.  So really, she's gone from being hungry, to still being hungry for food, and a bit more stomach problems.  But things like this take time.

She LOVES that she can chew gum!  That has brought the biggest smile of all.  Mint Chocolate Chip Ice Cream gum... Key Lime Pie gum... Orange cream pop gum...  I'm sure there's more out there.  Actually, she'd probably be happy with old fashioned Doublemint or Juicy Fruit.  She loves having flavor in her mouth!

She woke up with a head cold today.... so we'll keep her smiling with gum.

She's still happy, sweet Kauri, being ever so patient!

Today's Update

Kauri's Dr. visits today began with them sampling her blood. If you remember Monday with her surgery they had a hard time finding a spot to poke her for the iv. When the nurse tried today her veins were tender-as you can imagine- so it hurt pretty badly.

Then she went in for an ultra sound. The nurse explained what had happened to her in such a clear way that it made more sense for all of us. They didn't find a cyst that would be big enough to bother her.

Then we headed up to Dr. Black's office.  He informed us that Kauri's lipase went down to 822.  That means it went down 100 in one day. When it previously had taken 5 days to go down 100.   Dr. Black doesn't want Kauri to go to school with her PICC line and Marty.  Mom and Kauri don't want to go with it either.  Since her lipase is taking so long to go down, the Dr. said that he thinks since she is filling better she could try drinking clear liquids!! Her lipase is just taking it's time.  So she will have her blood checked on Friday and another follow up appointment with Dr. Black on Monday (has to miss the first day of school).  And then hopefully the PICC line will get taken out!

Thank you for all your prayers and thoughts.  Today was very special... and we owe it all to the prayers and the faith of those that love Kauri.  Thank you, thank you, thank you!

Pumpkin Roll - from a special friend...

Kauri got a special surprise from an Author that she love, Josi Kilpack. A new book hot off the press... "Pumpkin Roll". Thanks Josi for your kind words and thoughtful gift. We're all excited to see what Sadie is going to do next! We've LOVED your other books!

Pray

Doctrine and Covenants 105:19
"I have heard their prayers, and will accept their offering; and it is expedient in me that they should be brought thus far for a trial of their faith."

We have felt your prayers for Kauri and I KNOW that Heavenly Father hears them and has his arm around her helping her get through this.

Today wasn't the best of days for Kauri Girl... She was hoping that her lipase would have gone down today so she could eat tomorrow.  The Dr. said it could be two weeks, and it's been two weeks since she got the PICC line.  (She hasn't eaten anything for 2 1/2 weeks).  Her lipase went down, but not to a level where she could eat.  She is discouraged, she was hoping she could finally eat.  We all were.  She's strong, but she needs a little more strength.

If all you blog followers out there could pray for Kauri.  She needs a big pick me up after today.

Thanks for all your prayers, again they help and are felt.  We are just asking if at all possible tonight and tomorrow pray hard.  Kauri needs it.  We need it.

Drive

Today, Kauri went for a ride to Logan.  Annika needed to look for jobs in Logan, so we just drove around to places that she had taken applications to before, and mom and Kauri sat in the car.  At lunch time Kauri said that we needed to get lunch.  So we asked her what smell she wanted to enjoy.  She said "Juniper Take Out"  So we went there, and Kauri waited in the car while we ordered and Annika filled out an application.  Mom talked to her old Bishop from 25 years ago in Logan.  He even gave Annika ideas.  When Annika handed in her application, the manager gave her a job.  It isn't much, just a few hours a week, but that might keeps some food on her table.  So Kauri's desire to smell Juniper Take out, was a great idea.  When we brought out the food, she just smiled big, enjoying smelling our orders.  She is so sweet about all this, but she is so done with just smelling, as well.  We hope good news is coming soon, with food in the near future! 
P.S.  It's really hard for us to eat in front of her, just so ya know.
P.S.S.  We usually try to even stop chewing our food if she comes around, and she is so sweet to tell us to just enjoy our food.  "Remember she is ALWAYS eating in front of us" with good ol' Marty by her side.  (Marty- her backpack, pumps and yummy TPN!)

Surgery is done!

The Dr. said the surgery went well.  He didn't have to open it up too much.  He put a wire in and ended up having to put 2 wires to line it up.  Then he put the screw in and pulled out the wires.

Then the Anesthesiologist came in to tell us he thought he got the batteries and pump all right, but that he'd like us to check and see if it all was all right.  A few minutes later, the nurse came in to tell us, the same thing, but wanted us to check.  That made us feel important.  We knew more about something medically and they were edumacated in the medical field.

The screw in her wrist.

Mommy loves her baby!

Kauri's awake!  She was really enjoying her slumber.  Her heart rate was  really low (as usual) so they asked about that.  We just told them of her experience at Primary Children's.  So they weren't too concerned, glad she was that healthy.

This sweet nurse let Kauri take the gown.  It is so hard to change her clothes through the tubes, bags and Marty.
And Kauri was so tired.  So these are her nice duds to go home in.

Going home!  YEAH!