Happy Birthday 6

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

Home School

Kenzie started school yesterday but we decided to home school her. I talked to a few people about home school and I decided to go with the k12 program which is an on line public school program which ranges from math to social studies for kindergartners. The best part is it is all free the materials and everything. She also has a teacher that tracts her work and if we have any questions we can talk to her teacher. I love that it has all the curriculum planned out so I no that Kenzie is getting all the education she needs so I cant let her fall behind by forgetting an important subject.
So we hope that it works for her and myself and that it doesn't put to much pressure on Kenzie.

First Sleep Over

Kenzie was able to have her very first sleep over. She was super excited, that it was her cousin that was visiting from Alabama, Kira her best friend. She has been waiting forever to have a sleep over because her older brother and sister has already had some and she wanted a turn. It was finally her turn, and she was determined to stay up late like her brother and sister do when they have friends sleep over.

First they listened to music and played there guitars and drums and danced around the room.

After they got bored of that they decided to play babies and got all the baby stuff out, then decided they needed a house so they made a fort. They turned an ordinary table into an extraordinary house for them to live in.

At about 9 p.m I had them get there blankets and pillows so they could sleep in the living room and they got to pick out a movie to watch. About 10 p.m I came in to check on them and Kenzie and Braxton were both asleep but not Akira she finished the whole movie.


All in all I think Kenzie had a good time on her first sleep over.....

Stepping stone

Today has been one of those proud parent days. One of the neighbor boys learned to ride a 2 wheeler a few days ago, which had my kids wanting in on no training wheels.

So today Kenzie tried riding on Jayce's bike and did pretty good at it but wanted to take the training wheels off of her bike so off came the training wheels and off went Kenzie's, in about 10 minutes of practicing on the grass came the side walk. I was pretty nervous but she new she needed her helmet if she wanted to ride on the side walk.

She is doing really well at it for her first day and only 30 minutes of being on the bike. She is still having a little trouble getting started but for just starting she did amazing and with little to no help.

Considering all that she has gone through and the trials she has conquered. I am defiantly a proud mom today. I love that I am able to watch her learn new things and enjoy these happy moments with her. I am very excited to see what comes next in her life that she will master.

Raising Star Ceremony

Today was a magical day for Kenzie. Today she was finally able to have her star raising ceremony at the Make a wish foundation. It is a Ceremony that they do for kids that have already had there wish come true.







First they took everyone on a tour of the building and told us about how Make a Wish came about.














Then Kenzie was able to show everyone that came, what she did to send off her wish to the wishing wizard back in January.












After that we all ate a Hannah Montana cake and socialized for a little bit and Kenzie was able to decorate her star. Then it was finally the time for kenzie's time to shine.














Kenzie got to pull her pink star up to the ceiling while everyone watched her proudly. It was such a special day for her and all that she has gone through she well deserves a place on the ceiling with all the other stars that other children have raised.














I love watching Kenzie being able to do so many things and being able to enjoy life and be proud of who she is and not be embarrassed of all that she has gone through and all the scares she has on her. They are defiantly warrior wounds, and what a true warrior she is in our eyes.











Every one was able to write in her scrap book page

Difficult Decision

Last Thursday Kenzie went to her first appointment after being treated for rejection her echo looked a little better from when she got admitted in the hospital so that was a good sign that the medications are working.

She seen Dr. Everitt and asked me if we wanted to do her cath here in Utah and transfer all her care to PCMC or go back to Colorado, and keep doing what we have been doing and have both hospitals care for her.

My thoughts were that it is nice to have both hospitals to co manage her care and of course we love The Children's Hospital in Colorado, not to mention Dr. Campbell her surgeon who saved her life both times when she got her new heart and her pace maker.

Also Carrie her transplant coordinator who is amazing at what she does and knows how to comfort me when we lived down there multiple times when Tyler had to stay in Utah. I also trust her and every time PCMC wanted to do something sure enough I called her first before it happened.

So of course I talked to Dr. Everitt and she told me that her and Dr. Pietra thinks that times it can get confusing on both ends just because they do somethings different. Which I understand especially with all that Kenzie has gone through and we are hoping it gets better but who knows what the future holds. And Kenzie likes to keep us on our toes

So when we got home from her clinic Carrie called me to see how Kenzie was doing. Of course I asked what she thought about the whole Idea and she kind of gave me the same answer as Dr. Everit. She also told me that PCMC has came along ways in the last 4 years and the transplant organization is basically the same. She also said that she would be sad to not be part of Kenzie's care anymore, and that I wouldnt be able to call her for answers, but she would still be my friend and a support system if we choose to transfer care. And she knows how hard it is for our family to be away from Tyler for so long. Which I told her I love Tyler with all my heart and miss him dearly but I would rather have the best care for Makenzie.

So at the end of the week Tyler and I thought and prayed about it and we came to a conclusion that we would transfer her care to Utah. (Just writing this makes me sad to say it). Only because Makenzie has had so many issues with her new heart and we don't want to wait like last time she went into rejection and got life flighted to Colorado and went into Cardiac Arrest when PCMC could have started treatment instead of us waiting for hours to get her to Colorado to get treated.

Yes it is very hard for us to put her care soley into PCMC since The Childrens Hospital has been there since day one for her and knows everything about her, but both hospitals have there best interest in Makenzie and want the best care for her. We are surely going to miss everyone in Colorado and are so Thankful for all that they have done for Makenzie and all the amazing people we have met and became so close to (writing this is making me cry) They are certainly amazing people and I am glad we made friends out of all of this. And I sure hope we can still keep in contact with everyone.

I guess we will just have to go and visit every other year for a mini vacation. So we can visit everyone that has been a blessing in our lives.

The Cath

Friday morning Kenzie was set up for a Cath to get a biopsy done to see how severe the rejection was and to see if it shows what kind of rejection it was. 9 a.m it was her turn I was able to walk her down, seeing her scared and crying made me cry which didn't help her at all. But to help her they put on a CD which was of course none other than Hannah Montana.

About an hour later my pager went off and she was ready to go to the recovery room, but while walking to see her come out of the cath I saw the Dr. and he showed me the results and her pressures were high. It was a 20 which apparently is high. But did not find cellular rejection, but can't rule out vascular rejection. Which means it is a mild rejection but they are treating it as moderate.

They are treating her with steroids and IVIG which is an immunoglobulin. plus 7 other meds to help her heart and side effects which may be caused by some of the meds.

They also did an Echo again to see if there were any changes and it came back the same so it didn't get worse which is good, so the plan was to leave the hospital Monday, and finish treatment at home and be seen once a week for check ups.

And that is just what happened we got discharge Monday and boy was Kenzie and Braxton excited. Me on the other hand is always scared to leave the hospital when something like this happens.

Thank you all for the love, support and prayers you gave to Kenzie and my family. What a wonderful miracle kenzie is. I love you sweet girl.

Another trip to the Hospital

Wednesday night Kenzie was feeling her chest and asked "what is this" so I felt it and it was her heart beating super fast. So I grabbed the stethoscope and listened to her heart and it was going about 140 bpm which is unusual for kenzie but I figured it may have been because she was crying earlier and was still recovering from her tantrum.

So I put her to bed and about 30 mins later I went in and checked her heart again and it was still 140 bpm, so I new it wasn't from her crying so I called the transplant coordinator in Denver and Carrie called me back and told me to check it in another hour and if it is still fast to call in the morning and make an appointment and get her checked out. Of course I had her sleep in my bed so I could keep an eye on her and make sure she was still breathing through the night.

Well morning came and her heart was still beating fast so I called at 8 and talked to Emily and she told me that she would talk to Dr. Everitt and see what she thinks and call me back in a few hours. Well Hours went by so I called and she told me that i could take her to her pediatrician or bring her in if it makes me feel more comfortable. Well duh I always feel more comfortable when I know if she is ok or not.

So I took her in around 2p.m and right before we got there Carrie called me back and asked how she was doing and if we went in, I told her we were just walking in and she told me to have them check her pacemaker to see that was causing her high heart rate, something I didn't even think of. That's why we love her.

So we got checked in and Emily came in and checked her heart rate and it was beating 165 bpm so I asked if they were going to check her pacemaker and she said good idea so they came and checked it and found to be in atrial flutter, so they were able to override the arrhythmia with her pacemaker, and got her heart rate back to normal. They then took an Echo and that showed just a little bit of less function then normal but wasn't bad. So they admitted her to the hospital. To treat her for rejection. The amazing thing was that Kenzie was able to notice that something was wrong and let me know that her heart felt funny. What an amazing little girl I have.

My heart sake to the ground, last rejection was so horrible and sever that we almost lost her. I cant help to wonder what I am doing wrong, I try to keep her clean and healthy as possible. But this is her 3rd rejection in 4 years. I think its time for a bubble lol.

She gained weight

Today went pretty well at clinic got blood drawn. Echo of course took for ever like it always does but her echo came back great. Dr Everitt did mention that she did use her pace maker while they were doing her echo so she defiantly needed one she said.

She got her weight checked and she gained 2 pounds in a month which is an all time record for Makenzie she is now back to her pre-surgery weight back in February which was 30 pounds. She got down to 26 pounds after her surgery for not eating for a week. We are so proud of her for gaining that much in a month. They have told us if she doesn't keep gaining on her own they will put her on medication to enhance her hunger for a few months or last result a feeding tube which we don't want either. We would rather have her gain on her own terms. but she needs to be at 35 pounds to be were she should be for her height, so we have a little ways to go unless she keeps it up like last month.

We just have to keep power packing. When we went to Denver for her surgery in February they gave us sample's (like 30 boxes) of Kids Boost Essential 1.5 which has 355 calories in an 8 oz box she hated it when we were there so I never thought of trying to give it to her when we got home but for some reason I gave it to her and on top of that I pour in some heavy whipping cream which adds another 50 calorie's for every 1 Tbl spoon. plus sometimes if it tastes funny to her she tells me to add more Instant Carnation to it, because that is what she thinks she is drinking because she hated the Kids Essential so I have to secretly mix it for her. So I give a lot of the credit to the high calorie drink.
The bad part about the Kids Boost Essential 1.5 is that it is so expensive and you can't buy it at local store's so if you purchase it on line it varies from $50-$60 for a 27 pack which Kenzie drinks about 1 to 1 1/2 cans a day so it will be really costly for us if we had to buy two 27 packs a month, and we are slowly running out and the Dietitian here was able to only give us 6 sample's so that will only last 3 days so we are hoping she will continue to gain weight when she runs out.
So hopefully next month we go for clinic she will gain again even if it isn't 2 pounds but gaining anything will be better than losing weight.

Be a Hero Be a Donor

Today it has been 4 years since Makenzie's Heart Transplant. I don't even know how to express how grateful I am to her Donor and the family that decided to be selfless and allowing there child to donate there organs to children who were hanging on waiting for a second chance in life. It makes my heart full to think that their are people still out there who will think of others in time of grief and sadness, especially when loosing a child. We have had a few times where we thought we were going to loose Makenzie and even now It still makes me cry just thinking about how many close calls we have had with loosing her.

I couldn't even fathom loosing a child and with Makenzie's donor families selfless act they gave her a second, you may say life. Even though it hasn't been easy after her transplant, she is still here learning, growing and loving life.

I truly wish I knew who they were so I could just give them a huge hug and thank them for what they have done for Makenzie, with out them who knows if she would even be here. I have written them but never heard back from them. I hope one day we will hear from them and maybe meet them so they can see what legacy there child has left behind.
Her donor is truly an Angel who has saved Makenzie's life, and I am forever grateful to her donor and the family whether we know who they are or not.

Each year we celebrate Makenzie's Donor with a cake it is our way of showing our appreciation and honoring her angel a day that we will always hold near and dear to our hearts 5/16/2007.

BE A HERO BE A DONOR

5/16/2007 - 5/16/2011

From then to now

Last day of our trip

I can finally finish up our trip it's just been busy around here. Thursday was our last day, they booked Tyler's flight at 11 so he could get home for his midterm test. So while he went home the kids and I were able to spend time at the beach we went back to the Santa Monica pier, just because I new kind of were it was at. Luckily for GPS on my phone I found it pretty easy. We got there around 11 and it was so fun we wished daddy was able to stay and play but he needed to take his test which we understood. We had a lunch picnic which ouch it is expensive to buy at the pier. We had pizza a hot dog and fries. We then chased the waves and got pretty wet, we also played in the sand for a little bit, looked for sea shells, it was so fun we love the beach the kids didn't want to leave, ok we all didn't want to come home. But unfortunately are flight was leaving at 4:00 p.m so we left at 1:00 p.m to find the LAX airport. That was an adventure in it's self. My Gps was not picking up the airport so ya I was a little nervous luckily we left a little earlier. So at least I had the address to the Avis rental car place because I punched that address in and it gave me the direction. I was a little skeptical because it didn't give me the freeway directions. Which was the way we got there. But we finally made and check in the car and went to the airport.








I wanted time to check in the airport for the fact that I had both kids and luggage and Kenzie getting threw security with her Pace Maker. But it went pretty smoothly we had to get a pat down again because Kenzie wouldn't go through the scanner but that was ok. We got threw security in about 10 minutes so ya we had a lot of down time at the airport. So we found ways to entertain our selves and here are the picture's to prove it.







We finally got on the plane and the kids did good during the flight. Kenzie had fun taking picture's of us up in the air. We finally landed at 7:20 P.M and man was it cold in Utah.







It was a super fun vacation and it is all thanks to the Make a Wish foundation. And Kenzie loved everything about it and was happy about the wish she made. If we can afford it next year we want to go back to California and spend a day at the beach. Yep it was that fun.

Universal Studios

Today was a day full of Universal Studios. The Make a Wish gave us free passes to Universal Studios it included a front of a line pass which worked out great for daddy and mommy they were able to go right to the front of the line, go on the ride and then switch places. It was much faster than waiting in a 30 min line for a 2 minute ride. Braxton and Kenzie couldn't go on any of the rides there just the 3-D rides and the Tour. But it was fun.

First Mommy went on the mummy ride which was really fun for her it was all in the dark started off slow then shoots you out of know were then the roller coaster shot backwards it was pretty intense.




Then daddy went on the Jurassic park ride and saw some cool things from the movie. And at the end you go up this roller coaster and splash in the water. Then after Mommy went on the ride.




We went on the Shrek 3-d ride which was pretty fun it even interacted with you but when donkey sneezed, water shot in your face it was pretty funny but yucky if you think about it. The kids were a little scared at some parts when the characters popped in your face.

We also seen the terminator 3-D show that was pretty neat they had a mix of live people and a movie. This show also had some intense parts so Kenzie and Braxton hide there eyes in a few parts.



Terminator Bike

We then went on the Tour which was about an hour long got a lot of pic's but I only picked out a few. They were shooting a scene from Desperate house wives on the set and we were able to see Eva Longoria. They had a new 3-D part of King Kong it was pretty intense especially for little kids and Kenzie and Braxton hide there eyes the whole time.





After the tour the last thing we decided to do was go watch Water World which was an reenactment of the show. Of course we had to sit in the wet zone but we didn't get wet which was a good thing cause it was kind of cold that day.





Random Pictures of our day





After we left we decided to hit the Beach we wanted to go to the Santa Monica Pier why you ask cause that is where they shot Lilly's birthday party from the Hannah Montana Movie. So we had to go check it out. It was a really nice beach and it was super fun Daddy played with the kids running in the ocean and when the tide came rushing to the shore they would run so fast and was laughing so hard yes they got went and they he got mommy and pulled her in. It was such a fun day. When we got there it was starting to get dark so the pictures start bright and then you can tell when the sun went down.