Hospitalization

Kenzie got one of her IVIG treatments on Friday. That night she woke up in the middle of the night shaking with a fever, I didn't think anything of it because her last treatment she did the same thing so I just thought it was a side affect because she got over it the last time.

We ended up with no sleep because Kenzie kept waking up cause her legs were hurting and her fever got up to 102.1. It was a long night.

In the morning she still had a fever so I checked her heart it was beating at 131 bpm which is high for her. I thought it had to do with her fever. She finally took a nap. So I checked her heart again and it was still the same. So I called her coordinator and she told me to give her Tylenol and Benadryl to see if that helps and to call her back in 4 hrs.

Well 4 hrs went by and her heart was still fast. So I called her back and she told me to take her to the ER just to make sure especially due to her history. We got there and they hooked her up to the heart Monitor and her heart rate was at 150. Her pacer was firing with her own heart beat causing it to beat so high which they called it a flutter. They had to manipulate the pacer to bring her heart rate back down.

She then got admitted cause her heart function was down, so they thought she was back in rejection.

She had a cath the next morning to see how her pressures were and to get a biopsy. They also put a cath in her neck just in case she needed the plasma foresees they didn't want to have to put her under again if she needed treatment.

We finally got the results back around 5 and it came back negative. That means no rejection even her rejection from last October is gone but they are still going to keep treating the old one until she is finished with all her treatments.

They said it was probably her treatment and to much fluid in her and her heart wasn't pumping fast enough for the fluid so her heart was working harder to push the fluids through.
So for the last 2 treatments they are doing them inpatient so they can keep a closer watch on her.

That was the best news ever. We didn't want her to have to go through that again. So we got released that night. And got the best sleep ever after 2 nights of no sleep at all.

Thank you all for you continued prayers for our sweet Makenzie.

Happy Birthday

A Year ago

Kenzie woke up this morning and reminded me it was her birthday and that she is taller and that her shirt is tighter because she has grown and is now 6. lol I love that kid.

I am so amazed how far Kenzie has come in her short life she is such an amazing girl and I don't know how I got so lucky to be her Mother. I am proud to call her mine for All Time and Eternity. She has had such a crazy life for how young she is but it hasn't stopped her from enjoying every moment.

She has come so far in a year she is in kindergarten and reading and loves being home schooled.
I am so proud of her for what an amazing little girl she has grown into so far and I cant wait to see what adventures she will find or get her self into lol.

Don't ever forget that Mommy loves you and is so proud of you. I am eternally grateful to my Heavenly Father for allowing me to be your mother.

Happy Birthday sweet heart I love you!!!!!!

Now

Birthday Bash

We celebrated Kenzie's birthday a few weeks early because she wanted her 2 friends to come and they were going out of town the following week.

Her theme was princess, so I made her a castle cake and braxton and her dressed up as a prince and a princess it was so cute.

When the kids arrived we had them start by decorating ginger bread houses, we do it every year as a family but I thought it would be fun for Kenz to be able to do it with her friends this year. They had fun decorating and eating the candy lol.

Before she opened presents, her and Braxton wanted to make a grand entrance. They walked down the hall way as I announced Princess Kenzie and Prince Braxton. It was so cute.

She then decided to open her presents before her friends had to leave to a dance recital. She got so much fun things. After she opened her presents there was one final one that was so big that I had all the kids help open and when they were opening it Jerica popped out of the box and scared the kids it was quit funny. And then she handed Kenzie her real present.

We then sang happy birthday to her and ate her delicious castle cake with yummy ice cream. It was a fun party, messy but fun. She was so excited that she was able to have her "girl friends" over this year, we usually celebrate it with just family.

I was so happy of how it all turned out and that Kenzie had so much fun at her birthday party.


Unfortunately Braxton got a hold of my camera and deleted all the pictures off of it before I could download them. :(

Bye, bye Hannah the fish

Kenzie got a beta fish on her 4 birthday from her Aunt Melissa. She loved that fish so much that she named it Hannah Montana yep just like her favorite singer.

Her fish started looking sick and swimming kind of funny and hanging out at the bottom corner of her fish tank. Kenzie cried cause she new that her fish was sick and going to die. But sweet Makenzie did not want to flush her down the toilet she wanted a proper grave site for her fish.

When her fish finally died she made her a head stone and dug a hole for her in front of our house and had Uncle Neal come over and get her out and put her in the ground.

She got over her fish pretty quickly I think because Uncle Neal took her and Braxton out to get new fish, they both got 2 each and named them Jake, Miley, Hannah and Jessie yes they are all names from the movie Hannah Montana. Who knew ha ha.

Follow up cath

Kenize had a follow up cath on the 18th to see if the rejection is gone and the treatments are working we had to get up at 5 a.m to get to the hospital at 6 a.m. She was scheduled to go in at 7:30 a.m which was kind of nice because then she didn't have to fast all day.

She finally went back and an hour later they came and got me and Dr. Day talked to me and said her pressures were still high but lower than when she got admitted so that was pretty good news I was hoping for it to be cleared up but at least her pressures were going down and not up and the treatments were working.

After the cath she then had to go get an echo done and see her cardiologist. The echo looked much better this time :).

After her clinic we then had to go get her IV treatment which is like a 3 hr process. So basically she gets to watch a movie and color she gets pretty bored but she likes that she gets to order food. We were finally able to leave at 4:30 p.m. Yes it was a long day but Kenzie is doing good she needs one more IVIG treatment then starts her Rituximab which is a 6 hour treatment but at least that one she gets to do at home.

Later that night Her Coordinator called and said the biopsy results are in and her first cath was a 4v and this cath was a 3v. So that is also looking better.

Rejection

Oct 27th Kenzie had her monthly check up it was suppose to be an in and out clinic visit Makenzie looked healthy and seemed fined but when she got her echo done and Dr. Everitt came in and listened to her they decided she was in rejection from the looks of her echo and the gallop in her heart. So they decided she needed to be admitted to the hospital of course not expecting it I cried. They got her admitted and had her get a cath done but before her cath she was able to get a blessing, which Tyler wasnt able to get off work so a couple of elders from our ward came and gave her the blessing.

After the cath was all done Dr. Day came and talked to me and told me her pressure's were higher then they were suppose to be which is a result in rejection, so we needed to wait for the biopsy to see how bad it was and what type of rejection it was.

Later that night we got the results back and we found out that it was antibody rejection, which means she will need to do plasma foresees. So she was admitted to the CICU while doing her treatments she needed 5 of them every other day. It is a machine that filter's her plasma and puts back the good plasma.

We eventually were able to go to CSU which is the floor, so it was a little more relaxed and Kenzie was able to go to the play room but of course she had to wear a mask. She was able to finish her plasma foresees on the floor so that was nice for her.

Patrolling the halls

Being the Dr. instead of the patient

We had to spend Halloween there which wasn't to bad grandma Lehwalder came and gave Kenzie some Halloween decorations to put up in her room. Later that day they had a Halloween party and trick or treating around the hospital. Kenzie and Braxton dressed up, Kenzie was the cutest witch there and braxton was spider man who kept webbing every nurse in sight
(yes he likes to flirt). They both ended up with a bag full of candy and goodies, it turned out to be a nice Halloween all things consider.

Her last treatment was on Nov 5th and the she got 2 other treatments IVIG, and Rituximab they wanted to see how it went and how she reacted to the other 2 treatment before getting released. She did pretty well she threw up once, but no reaction which is good.

Sunday came and we finally got discharge she went home on 9 different medications, but she was glad to get the IV out of her neck and the pic line out of her arm. She will have to continue the IV treatments The Rituximab is a 4 time treatment which we will do at PCMC when she goes in for her clinic, and the Rituximab is a 6 time treatment once a month at home.

Thank you all for your thoughts and prayers through out the week.

Honor Roll

Yep Makenzie made it on her class Honor Roll this year for keeping up with her school work. What another proud moment day for us as her parents and a proud moment for her for working so hard this school year, what a big accomplishment. Way to go Kenzie keep up the good work.

Class Honor Roll

Caleb Maggie Sophia
Zariyah Zaylee
Emmi Magnis Joseph
Kacey Camden
Jameson Maren Colby
Rael Alondra Taylor
Bronte Ethan Tavin
Sariah Makenzie Andrew
Emma Sharlynne Annika
Xidis Elyxzia
Connor Gavin Veronica
Garrett Braxton
Elyzza James Bailey
Shauntayvia Eliana

Channel 2 Interview

A few weeks ago we got a call from the Make a Wish Foundation and was asked if we would be willing to get interviewed by channel 2 news. It was not about our family or Makenzie really but about Roberta to honor one of Makenzie's wish granters. So we decided to do it because Roberta has done so much for Makenzie on working so hard to make her wish come true by meeting Miley Cyrus.

The story was all about Roberta and what she does for the Make a Wish. Its all truly on volunteering and what an amazing person she is, for volunteering her time to help kids with life threatening illness to have there dreams come true.

We were able to tell them a little bit about Makenzie and what Roberta has done for her and what a wonderful person she has been through this whole Make a Wish process. You can watch it through this link it is a very uplifting story... http://connect2utah.com/news/pay-it-forward

If you or you know anyone/companies who wants to donate or wants to volunteer this is a wonderful foundation to do so. It really is a dream come true to kids who fight for there lives everyday.

(If the link doesn't work I recorded it so you can watch it on here.)
Enjoy

Parent Teacher Conference

Yes we had a parent teacher conference and yes Makenzie does home school. But with the K-12 Program they are just as strict as public school and need to attend everyday and keep on track and stay up or ahead of the class. She also must turn in work sample's that are due on a certain day or it will count as late and effect her grade.

Anyways parent teacher conference went well. Her teacher called me and went over a few things that are coming up and where Makenzie is at in her schooling. Mrs. Keeler told me that Kenzie is on track and is doing well in school and couldn't ask for anything better from her.

Mrs. Keeler also talked to Kenzie and asked how she liked school and what her favorite subject is and Kenzie's response was Language Arts..

Way to go kenzie on your school you are doing amazing keep up the good work.....

7 continents of the world

Kenzie doing school work

We started home school 2 1/2 weeks ago. So far it is going great kenzie is learning new things on top of stuff she already knows it takes her about 2 to 2 1/2 hrs a day to get through school. We work on Math, language arts, social studies, history and phonics through out the week.
Yes there are times when Kenzie gets distracted or bored but she is doing good and learning some stuff that is refreshing my mind from way back when lol.

This is one of her accomplishments so far...
Singing the 7 continents of the world that she memorized