Up to Date....

We aren't updating as much, because things are just still the same, pretty much, but now one good note.  Kauri had her blood test Thursday, Nov. 10th, and her levels are down a lot.  Her lipase is 267 and her amylase is 70 which is in the norm.  So just a bit more for the lipase, but we are so happy about that.

Still Kauri isn't better by any means.  She has chronic stomach pains, with a lot of digestion problems.  It's been really rough for her.  She never had these pains all the time was on TPN with Marty, because she wasn't eating.  We haven't figured anything out, if it's too much fat, or what.  It just hurts bad.  Some times she has to just hunch over for a while to get through it.  We're really going to pay attention to the whens, so we can do more testing and what for in a couple of weeks.

Great news... Kauri made the Viewmont Basketball team.  She is so excited.  We asked her how she can play with these terrible stomach problems, but she wants to.  She loves basketball and wants so much to get back to her normal life.  She gives her all and endures.  We hope she's not doing too much, but it's so good for her mental and emotional health to exercise and play ball.

Kauri is loving being in school.  She is meeting so many nice people each day, plus getting back involved with her friends, has really been good for her.  It hasn't been so easy.  We are struggling with the mess of the Home-Hospital program that the district approved her for.  The teachers were somewhat workable, but they are still expecting her to do a lot of back work (that she didn't know she had), and she's trying to get that done, and stay caught up with this new term, all the while still struggling with concentration, memory retention and those kind of things from her tbi, as well as just starting out as a new student, in a new school, with so many new people.  So it's been tough.  I don't think we would have done this route had we known it didn't work real well.  The principal at Viewmont did mention she had been done a disservice, and that the program didn't work for her, and I certainly had to agree.  (That was after a couple of hours of talking to him on the phone and visiting with him at school.)  So school hasn't been so easy.  Mom has spent hours with Kauri at school, still working with her, and the school.  It's been overwhelming.

Kauri's Dr visits have become less and less, and to tell the truth, no one is missing them.  They still are there, but it's nice to be slowing down.

Kauri, after basketball practice.  She didn't want to wear her shoes outside and these are the shoes she wore to school
It's good you can be cute, no matter!  :)

First Day of School!

Finally, the first day of school is here.  Kauri was a bit nervous about it.  She being the only one at school who was having their first day of High School, wondering if she'd know where all her classes are, just all that unexpected stuff.  She missed out on experiencing that with all her friends and classmates, as well as so much else, so there was a lot of feelings going on.  She was worried about her stomach as well.  But went with a smile on her face, leaving fear here at home. 

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!)

Hangin' in here...

Well, it's been a few days, but not much has happened, which is good.  On Monday, Nancy the Home Health Nurse came and drew blood.  Kauri's Lipase levels went down to 719 from the 1175.  And her Amylase went down from 168 to 147.  220 is high lipase levels and 110 is high amylase levels, so we still have a ways to go.
We're still trying to get her to a GI specialist, or someone specialized in this pancreas stuff.  We even talked directly to Dr. Black (the Dr. that has been over her through all this accident stuff).  He's a General Surgeon at Primary Children's, and since this has been going on so long, we're ready to get a little more specific.  But he hasn't done very good about getting us directly to a Dr.  He said he could, but maybe he's doing non-stop surgeries for the last week, OR is on his 2 week vacation.  So it's a little frustrating, but we're learning how to deal with frustrations through this last 2 months!
Kauri is feeling better.  Her tummy still hurts now and then, but she hasn't had nausea again... yeah!
We through in another Dr. appointment among all the others... the DENTIST!  And she has some cavities.  I guess she likes to keep going to visit all these nice Dr's. I guess.

Kauri is getting more and more caught up on her school work.  Her Home Hospital teacher came again today.  They laughed pretty hard.

Today, her dressing on her PICC line about fell off, so this was the day to learn to do that among all the nursing skills mom has.  Always an adventure...

Cleaning it good.

Serious stuff...

We did it!  (I think we only missed one step!)  But we were clean!

The nurse cleans up here.  When the Home Health nurse comes, mom has to clean up after her, too.

We had a nice lunch with Grandma Tye today.  It was nice for Kauri to actually go out to eat and be able to eat.  We took some great pictures, but somehow they were deleted.  Just know, Grandma belongs here on the blog.  Kauri loved spending time with her!

Fun with family

We stayed over at Savanna's and had a nice time.  It's nice for Kauri to get out a little bit. (Actually all of us).  The last two months have been kind of slow...ly, busy.  But only busy with all the stuff we don't want to do.  But in all of it we've had many great experiences, from good laughs, cries, and so much more.  We have felt love and peace even through all this turmoil.

Darcie, Kauri's niece that was born 2 weeks before the accident was blessed today.
Here's some of the girls that were there.

Silly girls, making fun of wedding announcement photos.  There were some hilarious pictures.

Savanna, Darcie and Kauri hanging out.