Tying a knot, and hanging on

Kauri had her labs done last week, on Tuesday, the 25th.  After two weeks, they've gone down a whopping 100.  Yes, it's good they're coming down, but it's so slow.  She went from 769 to 653, on her Lipase, and her amylase went down better from 150 to 121.  The normal is 30-110, so that is getting there, but her amylase never was super high.
We are so excited they are coming down, but she has a lot of pain.  It's pretty regular.  Pretty much when she eats.  Those weeks she didn't eat, she never had stomach pain.  Now, 3 weeks after the PICC line is removed, she has tons of pain.  It's so hard for us to see it, and worries us, but as Kauri puts on her beautiful smile, and she herself tries to not focus on it, we just keep on keeping on.  It's hard though for her.  She will hunch over in pain, that at times she has said is a 9 on the pain scale.  10 being the worst.  She smiles and says, "but mostly the pain is a 3-5".  That still is hard on us, to know she's not out of the woods yet.  But if her spirit and attitude helps anything, we shouldn't be on the down hill side of this. We all hope so much she can quit having so much pain.  That pain also leads to other things that complicate this whole situation as well.
Kauri's spirit is good, she excited to get back to living, and is being tough about her stomach.  She's amazing!

Hanging in there!

So slowly but surely, Kauri had gotten the okay from each dr to go ahead with basketball. Today we went to our Family Dr to get her sports physical. It was supposed to be quick tip ended up talking longer. While we were waiting we thought a flu shot would be good. So after that, and the visit with the Dr. Mom asked him about this bump on Kauri's leg. It had been there since the accident. Mom and Annika had cleaned most of the road rash and got rocks out of it. But still this one scar looked weird. Kauri said it was no big deal, that nothing was wrong. The Dr. Started scraping and heard weird scratching. It was glass! It wouldn't come out so he grabbed the nurse and needles and they preformed a little glass-ectomy. :). But the little visit turned into more stuff. Kauri is such a good sport. We didn't get her labs done because we had to rush to the school to get her homework turned in. They gave her a lot more!

Kauri has had fun getting out a bit. She went swimming with the family over UEA

The PICC Line is OUT!

Nancy, the Home Nurse came at 8:00 this morning to take the PICC line out!  Tanner was really excited, because she had said he could help her do it.  He was so afraid he would be at school.

Nancy let Tanner pull the PICC line out

The Team!

She's free!

Nurse Nancy...

Tanner has taken good care of Kauri through all of this.

Now it's time to remove Mom's wrist band.
She's worn it since they had her put it on in the hospital.
She wore it for 75 days!  She was keeping it on until the
PICC line was taken out.

She's free.
People would ask her if she really liked Cherry Hills or Lagoon
or amusement parks, so she just kept the band on.
We know they can stay on for a LONG time!

Kauri Can Eat Party!!!

So tomorrow, October 11th, we are having a Kauri can eat party.  There have been so many nice people who have wanted to bring Kauri treats and food, but since she couldn't eat for 8 weeks, and then has had to be careful, we decided to have a party, so anyone who wanted to come visit and bring some food, it would be a fun opportunity.
So anyone who wants to come, we'd love to have you.  We didn't know how to invite people, especially since it's snuck up on us, so we did it on Facebook and email and text.  We hope anyone who might want to come has heard about it.

We're getting there!

Today Kauri had her labs drawn.  It's still slow.  Her lipase is went down from 810 to 769.  We still want less than 220.  Her amylase went down from 159 to 150.  We still want that under 110.   But it's still good. We went to her new GI specialist at Primary Children's.  She's a fun Dr.  She asked lots and lots of questions, and reviewed the last 10+ weeks.  She thinks her pancreatitus created a biochemical elevation of her lipase and amylase (okay, all you smarties, does that makes sense?  Because we are trying to word it how she said it.  Even though it's written down, we weren't sure how exactly to express it in the right wording.)  Anyway, that means were just going to work on it through a different angle.

So the 1st thing...

She gets to lose her PICC line!  Marty has kind of left her life the last week, but he's still been by her side in her room.  But now he is officially going.  So hopefully later tonight the Home Health nurse will come and take it out!  YEAH!!!!  

Dr. O'Gorman teaching us more about the Pancreas,
and what approach we are going to take now.

The Dr. told her to get out and start playing Basketball!  Now of course, she can't really do it yet, because she isn't cleared on her wrist, but she could go and get working out!  Kauri smiled so big! 

Katie and Kauri

One Happy Girl!
(almost feeling normal)

2nd thing... She needs to take Pancreatic supplements

3rd thing... She needs to take Zantac to help block the acid that is probably a part as well.

4th thing... Low Fat Diet  (That begins after her Kauri can eat party tomorrow!)

5th thing.... 2-3 liters of liquid daily. 

Sunday...

Getting out and getting better

Kauri's levels went up a bit, her lipase went from 719 to 810, and her amylase went from 147 to 159.  They are still quite high, but we are somewhat encouraged that she's eating almost normally, and has only been on TPN every other day.  We have even taken her off lipids.  So she still has her PICC line in but she doesn't use it all the time.  It's just an odd thing stuck in her arm.  So we are going to lessen her TPN even more and see what happens this week.  She has an appointment with a GI specialist on the 10th.  It is pretty hard to get into GI Dr's. very quick.  There is either a shortage of them, or lots of tummy problems, or they vacation a lot.  But we're glad after 2 weeks we finally got an appointment.

She is feeling better all the time.  Her tummy gets mad once in a while, and she's kind of tired of it, but she's even more tired of doing almost nothing.  Home school is going okay.  We've had some problems getting things to and from the teachers, but hopefully after mom went to Parent Teacher Conference things will get a little less complicated.  Her Home Hospital teacher is great, but the communication with her other teachers just hasn't been there, so Kauri is getting anxiety about how her grades will be.  This has certainly been a trying couple of months, it just doesn't stop at the accident, or Kauri healing, but school and so much more.

Annika made this picture for Kauri with many of the flowers that sweet people brought to her.
The ones by Jesus are from Gabe's funeral.

So Kauri is getting out a bit more and seeing more people who stop by.

At Mason's football game in Logan.

Hangin with Dad

Jeremy and Lacie came to visit, and brought Kayla.  Kauri hadn't met her, she was born a week after the accident.
Lacie was a great nurse at the hospital when Kauri was there!

Some  cousins came to hang out!
(Notice, she is sharing some of the candy given her from some great friends!)