Makenzie's World

Hospitalization

2012-02-06T15:14:00.002-07:00

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

2011-12-22T10:40:00.004-07:00

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

2011-12-13T10:34:00.006-07:00

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

2011-11-20T19:54:00.003-07:00

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

2011-11-20T19:40:00.003-07:00

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

2011-11-10T21:49:00.001-07:00

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

2011-10-20T09:36:00.006-06:00

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

2011-10-06T10:54:00.008-06:00

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

2011-09-24T10:03:00.005-06:00

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

2011-09-01T12:57:00.005-06:00

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

2011-08-16T11:15:00.004-06:00

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

2011-08-11T15:09:00.009-06:00

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

2011-08-06T19:15:00.005-06:00

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

2011-08-01T12:30:00.008-06:00

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

2011-07-27T10:08:00.005-06:00

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

2011-07-12T11:14:00.002-06:00

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

2011-07-11T18:42:00.009-06:00

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

2011-05-29T19:12:00.003-06:00

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

2011-05-16T22:51:00.014-06:00

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

2011-05-13T20:45:00.006-06:00

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

2011-04-29T14:18:00.010-06:00

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.

Miley Cyrus

2011-04-24T19:52:00.013-06:00

Today was Kenzie's big wish day. It was the day she actually gets to meet Miley Cyrus, to be honest I think I was just as excited to meet a star lol. Unfortunately only 3 per family was aloud to go so daddy stayed back at the hotel :(. But he was a trooper and put a happy face on for Kenzie. So Kenzie, Braxton and Mommy was off with 14 other wish kids to go meet Miley in a big bus. We had know idea where it was at or anything about it they wanted to keep it on the down low I guess.

Riding on the bus

We finally got there about 30 minutes later and from the outside of the building you could her Miley singing. It was a building that you would have never expected some singer to be rehearsing in but it had it all a stage a recording studio ect.

The building Miley rehearsed in

Super star

The first 2 hours consisted of having lunch and mini makeovers. Kenzie was able to get a mini make over she was a little hesitant about it at first so she sat on my lap the first time around. But then got into it she even asked for extra things which I will explain further. First they just did her makeup but then she saw a girl get blush on her so of course she wanted some so I had to ask this time around. Then she seen another little girl get her nails all glittery but this time Kenzie asked. I was so proud. The make up artists found diamonds so they asked Kenzie if she wanted diamonds on her face she of course did it looked so dang cute. Her lip stick came off so she asked the lady if she could get more on and of course they did it for her she was having fun getting pampered for about an hour going back and fourth getting things added on or touched up.

She is all bedazzled

All the wish kids

Finally it was time to meet Miley they asked every one if they were ready to meet her and of course you can hear loud screams. Miley walked in the room unexpectedly took a group picture with the kids but didn't wait for all the kids to get in so I didn't get one with Kenzie :( I barley got a pick of her in the room she basically came in then out. But don't worry that was not the meet and greet part of it. And of course they were blurring she came in so fast and left with in a minute. We also found out that Miley has meet 180 Make a wish kids. Amazing that someone so busy would take time out of there busy life to make kids dreams come true.

Miley felt bad that we had waited so long for her that she bought cupcakes for us while we waited for our turn to go in and meet her. The cupcakes were from Sprinkles I guess a really good bakery in California.

Braxton enjoying his cupcakes

It was finally our turn and Kenzie was so nervous or overwhelmed that she started crying so I carried her in and Miley told Kenzie Know crying in here, no tears. Kenzie didn't really talk to her but mommy did. She asked me if the kids were twins I guess Kenzie looks as little as Braxton. Then we talked about seeing her in concert last year, when Miley was so sick she apologized for that. She was really sweet. Mommy commented on her hair and told her that she loves her hair and Miley's response was I like it also but it's not mine lol she has extensions. Then she autographed 2 picture frames and Kenzie's Hannah Montana pillow case. Then it was picture time Kenzie wouldn't take one with Miley by herself so I was in it and had one of the ladies there take the picture unfortunately the pictures turned out blurry so hopefully we get the professional one's back so she can put the pictures in her frames that she signed for Kenzie.

The signed picture frame

After everyone had there turn to meet and greet with Miley it was time for the Private rehearsal/concert. Every one's understanding was that she was going to rehearse 2 or 3 songs. It ended up being about 6 or 7 songs. Don't remember all the songs she sang but she did sing the climb. She even changed clothes and everything after every song. We were not aloud to take pictures or record it but got some on my phone of the rehearsal, but they were blind pictures so they are kind of blurry.

After the rehearsal it was time to go back to out hotel it was such wonderful experience for Kenzie I hope she remembers it for the rest of her life. I am so happy that Kenzie was able to have her wish come true and meet her favorite star.

The Adventure Begins

2011-04-23T17:13:00.009-06:00

Monday was the day we left for California to start Kenzie's wish week. We woke up at 4 a.m to catch our flight at 6:30. Ya it was a early morning but the kids were up and ready to go Kenzie woke up on her own excited to fly on a plane it was the kids first time on a plane and they loved it. Slept most of the time but that was ok. Getting through security was pretty fun since Kenzie can not go through a medal detector they have a special scanner that they walk through but there was no way Makenzie was walking through it alone ya she cried. So unfortunately they had to pat Kenzie and I down cause she wouldnt walk through the swinging door alone to pass the decetors so I had to carry her. The faces you get when your child is crying and getting pat down is amazing like we were hiding something on her. The lady was nice and let me hold her while she patted Kenzie down then it was my turn ya not so fun.

We arrived in LA at 7:40 a.m picked up the rental car from Avis, went to Mcdonald's and ate breakfast, then decided to find Sea world got there around 2 p.m got a little lost but found it. The kids loved it the shamu show was so fun sat in the wet zone and got wet Kenzie thought it was so funny. So when we watched it again she wanted to sit in the wet zone so we did but this time we didn't get one drop of water she was pretty disappointed that we didn't get wet lol. And yes it was cold in California if you didn't notice the Jackets.
We rode on rides there and hung out a lot in the Sesame street land were the kids were actually tall enough to ride the rides.

Abby's sea Star spin

Tyler didn't ride this ride he doesn't do good on spinning rides.

We then went and watched the dolphin show. Again Kenzie wanted to sit in the splash zone there also and this time we got wet. They put on a fun show with them skiing on the dolphins to swimming by them. It's was a fun way to start out the trip we ended up checking in at the Hyatt hotel around 9:30 p.m California time, which in Utah that would be 10:30 p.m. So we were pretty exhausted.

Surprise

2011-04-14T19:20:00.013-06:00

On Monday the Make a Wish foundation threw Kenzie a surprise party to tell her that her wish came true and she gets to meet Miley Cyrus.
The first thing they did was had a Hannah Montana impersonator come and sing Best of Both worlds. Kenzie was very shy of course and didn't know what to think. They also made a count down chart for Kenzie to count down the days until we leave to LA. 8 days remaining She loves to wake up and take a number off every morning

Then we left to go to classic skating. Kenzie love's going there that is why we did the party there. They made a announcement over the PA letting everyone know that a special little girl named Makenzie was from the Make a Wish and she got her wish granted to meet Miley Cyrus, Kenzie loved that. Getting down with the music

Hanging with Colton

We had pizza and drinks even a cake that Kenzie cut all by herself Ashleigh, Aunt Red and Roberta (make a wish volunteer)

It was really fun hanging out with family and celebrating this wonderful occasion for Kenzie she deserves this and hopefully will enjoy the trip and meeting Miley Cyrus.
What an amazing foundation they have for kids just like Makenzie who deserves to wish upon a star and watch it actually come true. I hope she remembers this for the rest of her life.

Wishes do come true

2011-04-06T17:58:00.004-06:00

3 months ago Kenzie was able to Make a Wish and her wish was to meet Hannah Montana. This Morning I got a phone call from the Make a Wish foundation telling me that Makenzie's wish has been granted to meet Miley if we could fly out to LA on April 18th, and meet Miley on the 19th.
I a super excited but I cant tell her they are going to have a surprise party on Monday for her and the family to tell her that her wish has been granted and that she gets to meet Miley. It has been so hard for me not to say anything to her but I know she is going to be super excited when she finds out. She well deserves this, she has been through so much the last 4 years and with this last surgery and all the complications she went through and pulling out of it like a super star she deserves to meet her favorite super star/singer.

clinic

2011-03-24T15:58:00.003-06:00

Today Kenzie had clinic for more of a follow up from last week. Her Echo looked good last week but the Cardiologist heard a 3rd heart sound which could be found in healthy patients but also could be a sign of rejection for Heart Transplant Patients. So they wanted to see her again today to make sure that her Echo was still good and check to see if the sound was still there.
Well her Echo looked good and neither her Cardiologist or Michelle her Transplant Coordinator heard that extra sound so between a good Echo and no extra sound it is a reassuring sign that Kenzie is doing well. Her next clinic visit is in a month.

Clinic day

2011-03-17T20:04:00.003-06:00

Today Makenzie had clinic here at PCMC for the first time since we have been back from Colorado This time dad was able to go she was excited, she was a little nervous even though she sees her doctor's here more than she does in Colorado. She loves Miss Carrie (transplant Coordinator in Aurora).
Today was a long visit I mean long she got her blood drawn like she always does but she needed her blood drawn twice because some of it clotted the first time and couldn't get all the results. So first it was a veiness then a finger poke and we get to go back on Monday cause one of the vials that clogged was her medicine levels which she took right after she got her blood drawn the first time. So she gets another finger poke on Monday :(.
Then she got her Echo which also took forever for some reason. Then we had to take her to get her blood drawn for the second time. We then got to see Michelle and she said that Kenzie looks so good. We also met the Pacemaker doctors and they checked her pacer and made a couple of adjustments, they said it looks great. We then finally saw her cardiologist and he listened to her and said that she has a 3rd air sounding ( I don't know what they called it) but they said they would watch it but it isn't serious they said anyone can have it but it is new for her. Which makes me nervous.
Then they wanted her to get an x-ray so they have a base line of how her pacemaker looks inside her. Then we saw her cardiologist one more time to make sure she was good to go. So we will see them in another month which again I do not mind.
She also is going to see a dietitian in a few weeks to try and get her weight back up since she lost a few pounds while we were out in Colorado.

The miracles that has happened in Colorado

2011-03-11T09:29:00.008-07:00

2007 we arrived in denver for Kenzie's heart transplant we waited a month for the call and we got the call on May 16th, it was such a roller coaster we felt happy but sad for the other family who lost there child. We didn't know what to expect but it turned out great.
I also got purposed that same night before we got the call so I was engaged the same day my daughter got a new heart.

2009 Kenzie went into rejection got life flighted back to Colorado she went into Cardiac Arrest and the doctors and nurses saved her and brought her back after 15 min, with no brain damage.

2011 Kenzie needed a pace maker put in to help her heart it was suppose to be a simple surgery in and out but she had complications during the surgery and went into cardiac arrest for a total of 17 min and again she managed to have no signs of brain damage.
We also found out that Jerica was pregnant the same day Kenzie got released from the hospital.

You always hear the Lord give's you what you can handle and knows your trials in life and what you are going through. I am so thankful that the Lord is on my side and knows our fears and pains and is always there for us even if it's not the way you are hoping for.
He has defiantly been there for my family watching and protecting us especially Makenzie. Such an amazing girl who has endured so much in such a short period of her life but she is still with us happy and healthy and love's life. I am so thankful for another day with Makenzie and the lords hand for watching over every step of the way.

Driving back home

2011-03-11T09:19:00.006-07:00

We decided to wait until Wednesday to leave due to the weather. This was the first time Tyler didn't fly back to drive home so I got to drive the 8 1/2 hr drive. Luckily Jerica stayed the whole time and kept me company and waited on the kids.
The drive went by pretty fast the kids did really good staying occupied watched movies almost the whole way but seemed to be entertained which was good for us, made the trip a lot smoother. We arrived home at 7:30 p.m. It was nice to be back and have Kenzie with us.
Life is such an amazing journey, it's full of ups and down but when you see those miracles it makes the ups so much more amazing. Life is so short so live life cherish every minute with your family, your kids are a blessing from above so don't take them for granted they are your treasures so hold on tight to them and love them with everything you have. I know I do.

Last Clinic day in Colorado

2011-03-11T09:10:00.004-07:00

March 7th today Kenzie's check up went great everything looks good. The Pacemaker nurse came in and talked to us and showed Kenzie what a pacer looks like the identical one that she got put in. Kenzie was able to hold it and ask questions if she had any.
Carrie came in and checked her to make sure she looks good and told us that we get to go home that she looks great and they are not concerned. I love coming home but I get nervous leaving when events happen like this I get comfortable being there and entrusting in them for the care of Kenzie, even though we have a great hospital back home close by.

Out of the hospital

2011-03-11T08:41:00.008-07:00

Feb 26th was another big day Kenzie got released from the hospital she was sent out with oxygen which she did not like she wouldn't take naps or anything while she had to have it because she new she would have to wear it. We also found out the Jerica was pregnant YEAH. What a good day. That night we celebrated by going to Boston Market I asked Kenzie when we get out where is the first place you want to eat and she choose there it is so yummy.

March 3rd we went to the aquarium it was nice to get out and do something it was pretty empty so we walked through it pretty fast at the end they had sting rays and Braxton touched one so brave.

While Kenzie was out patient she had to go to clinic Mondays and Thursdays to see Carrie to get echo's EKG and check her vitals. and every visit she looked and sounded good, Kenzie also got off the oxygen which she was very excited about and off her meds that she got released from the hospital with, so now she is down to Cellcept and Prograf (anti rejection meds).

2 weeks after her surgery

2011-03-11T08:39:00.008-07:00

Feb 16th she got the right chest tube out. She also was able to go on a wagon ride out to the waiting room to see Braxton for the first time. At first the kids were nervous but Braxton gave her the sweetest softest kiss ever it was so sweet. Carrie also gave each of them a present Braxton got a toy story ball and kenzie got a blanket and a princess sticker book. When we went back to the room they were already to take Kenzie to the 9th floor CPCU (Cardiac Progressive Care Unit)

Feb 17th today was super special I got to hold Kenzie for the first time in a week the joys of being able to hold your child for the first time is such an amazing feeling like holding your child for the first time they are born it felt like that. We snuggled in the chair for who knows how long but it was such a great feeling. We also got a package from Kenzie's favorite cousin and best friend Kira she was so excited when I gave her the package she ripped it open and dumped everything on her lap and looked through everything. Such another wonderful day.

Feb 18th Kenzie got to go to the cafeteria and eat with us Braxton wasn't able to go into her room
due to the flu season so Jerica and I switched off so we could spend time with Kenzie and Braxton. She also walked to the playroom and did arts n crafts.

Feb 20th they weaned down on her oxygen, took out the last IV which Kenzie was excited cause she didn't have to walk around with an IV pole anymore and she was able to use both hands. She also got a sponge bath and got her hair washed she loved it. Braxton made many friends while we were there in the waiting room playing with his toy story toys. He said the sweetest prayer for Kenzie for he is bed time prayer it was short but sweet. Heavenly Father please bless Kenzie and I love her amen.
The bond between siblings are amazing they are defiantly best friends and love each other so much that it makes a mommies heart proud.

Week after her surgery

2011-03-11T08:38:00.007-07:00

The next day they did a CT scan to check her brain to see if there was any damage considering she was gone for 17 min. Thankfully it came back normal, again.

Feb 12 she got the chest tubes out the drainage from her lungs has slowed down.

Feb 13 today was a step forward then a step back. today they ended the study early because the blanket wasn't really working and Makenzie was alert and the nurse didn't think she needed it. They also decided to take the breathing tube out to see how she does with out it. At midnight they had to put the chest tubes back in cause her lungs where filling up with fluid she started breathing heavy for a few hours so at 4 am they put the breathing tube back in to help her breath her oxygen levels where dropping so they wanted to get it in before something worse happens, it was another long day and night.

Feb 14th they decided to do another CT scan to check for blood clots in the brain and lungs another miracle there was no signs of anything. Also that night Jerica came to help out with Braxton Because the next day Tyler flew back home so he could get back to work someone has to still pay bills.

Feb 15th today Tyler flew back early to get back to work it was hard to let him leave. It was also a big day they took out the breathing tube I was really nervous about that but she did good they also took out the left chest tube. She responded well and was alert and new who every one was so that was some good signs of no brain damage. She also walked a little and even went to the potty it was so nice to see my little girl.
It was an amazing week to watch her improve everyday and slowly come off machines and wein down on her meds. Just to see her eyes open may be taken for granted but when your child goes through something like that and you call her name and she looks at you, your heart rejoices to know that she remembers you and knows your voice is a miracle in its self.

Pace Maker

2011-03-10T19:36:00.012-07:00

Feb 10th we had to check in at 930 her surgery was scheduled at 11:30 so of course they had to get her vitals and make sure she was well to go into surgery. She also had a Holtor put on the day before and it came back that her pauses increased to some 4 second pauses and with 100 plus pauses all together, so she really needed the pacemaker put in. I was so nervous and you could tell that Kenzie did not want to go she was fighting to go back with Carrie who her carried her back because I couldn't go with her this time so I gave her a hug and a kiss and told her that Mommy loves her and will be waiting for her when she gets out. Its always hard to see your child cry and just want to hold them.
About 45 min into the surgery I had to go to the bathroom I come back and Tyler looks sad and concerned (just writing this makes my stomach ache) I asked whats wrong and he told me the nurse came out and said that she is bleeding a lot and her sats have dropped and they cant get her stabilized this was suppose to be an easy surgery in and out in a day or so. Not my Makenzie she needs to keep the doctors on there toes I guess.
About 5 min later the same nurse came out and said that they cant get her pressures up and she went into cardiac arrest. They took us into the private family room where no family ever wants to be. She then went back to check on Kenzie and came back and said they got her sats back up what a relief. So she left and about 5 mins later she came back with the social worker and shook her head I thought I lost my little girl she said her sats have dropped again and went into Cardiac Arrest again I was shacking and crying and didn't know what to think. She left again to check on her and walked in a few minutes later with Carrie and said they got her on the bypass machine and she is doing good and she is still with us. My heart was in such agony but when I heard they got the Pace Maker in and she is still here with us it was a little more of a relief but I knew we were not out of the woods yet they had to wait to get her off the bypass machine get her sats stabilized and finish the surgery she was gone for 17 minutes total. I guess she just wanted to say hi to her Grandma M that we lost last July. From start to finish it was 35 mins the longest 35 mins of our lives. They were able to get her sats up and off the bypass machine and got done with the surgery I honestly cant remember how long the whole surgery went but it felt like eternity.
They finally got her back into the CICU and got her stabilized so I was the first one to see her. I didn't know what to expect, when I walked in I started to cry. I held her hand and kissed her. But I was so ecstatic that she was still here with us she defiantly has a purpose her. This is the second time that she went into Cardiac Arrest 2 years ago when she went into rejection she went into cardiac arrest that time she was gone for 15 min and came back to us.
The doctors didn't know what to expect when she woke up. but Tyler and I put her in a study it was a hot or cold study randomly drawn and she got the cold study were they put her in a hypothermia state to slow the blood down to her brain so it doesn't swell. when they started that it was so awful to watch she was shivering and shacking so they put her in an induced coma until the study was over. Also with the study they put electrical leads on her head to watch the brain waves.
It was a rough long day but I can not express how thankful I am that she is still here with us it is such a blessing to no that there is a higher power up there and angels watching over us.
(The pace maker that they put in her)

The day of the Cath

2011-03-10T19:22:00.012-07:00

Feb 8 We had to check in at 7:15 to get Makenzie's blood drawn before until her Cath we checked in got all her vitals done and waited around until about 12 before they took her back I was able to carry her back and watch them put her to sleep she fought it and didn't want to fall asleep it was so hard to watch it made me cry watching her struggle to go to sleep. It took about 1 hour for the Cath everything went well after the Cath she had to lay flat for 4 hours that was a long day so we watched movies. About 5:30 p.m she got discharged and we went back to the RMH.
The next day we actually spent the day at Grandma Judy's house who we meant 2 years ago when Kenzie went into rejection we ate dinner there Kenzie's favorite is having smore's there they have a fire place so every time we visit we have smore's for dessert. The kids played while we visited, it was nice to see "family".

Trip to Colorado

2011-03-10T19:12:00.006-07:00

Feb 7 we left early to start the drive to Denver for Kenzie to get a Cath and a Pace Maker put it. We were only suppose to be there for a week for Kenzie to recover and get a check up before we come back home.
The drive was a little bumpy at first the kids were tired and didn't want to be entertained at all. But when we got about 4 hours into the drive the kids got better and watched movies and played with each other.
When we entered into Vail it got messy the roads were snow packed and covered with snow going 25 mph for 2 hours. diesels chaining up for the roads the check engine light comes on but we made it to Denver safe and sound took us 9 hours to get there but we got there, and checked into the Ronald McDonald House around 7.

Makenzie's Wish

2011-01-30T15:46:00.024-07:00

Yesterday Makenzie was able to make a wish with the Make-A-Wish Foundation. Which is a foundation that grants wishes to children who have life threatening illness. We have talked about it with Makenzie and what wishes she would want or like if she was able to grant a wish with them. We debated on waiting until she was older so she could remember having her wish granted and having the memories of doing her wish, but she really has a wish she wants really bad and who knows if she will want the same wish when she gets a little older. So we decided now is a good time as ever. We arrived at the Make A Wish building at 5 and right when we walked in they had a welcoming sign just for Makenzie. I think I was more excited to see the sign. They showed us around the building and told us the history of how the Make A Wish came about.
We then each got a make a wish coin to throw into the wishing pond they have, so we can wish on anything we want. Tyler and I saved our coin so we can scrap book it and make a necklace out of the other for her to keep. We went up stairs and lying on a table was gifts for all the kids of course Kenzie got a bunch but each child got a few gifts which was nice of them to do that.

After that we got to play a few get to know you games so they could get to know Kenzie a little better. Then we each got a piece of paper to write down our wish for Makenzie, and Makenzie got to write her wish all by herself so she could send off to the "wishing wizard". Her wishes are to meet Hannah Montana, (huge fan) and if that wish wasn't able to come true then she would love to go to Disney World.

They sent us a key in the mail that we had to bring so she could unlock her magical room. After we were all done writing our wishes down for Kenzie. She was able to use the key to enter the room. Right in the middle of the room was a Wizard hat. But before she was able to send off her wish to the wishing wizard each of us got to tell her our wish that we want for her. Mommy's wish for her was to grow up happy and healthy, Daddy's wish is for her to grow up and have a family of her own, Ashleigh's wish for her is to be able to meet Hannah Montana and remember it forever, Jackson's wish for her is for her not to get sick anymore, Braxton's wish is to for her to meet batman. And wishes from her Make a Wish volunteer's were Roberta said health to have all her wishes come true in life! Annie's is that her wish will bring her and her family hope, strength and joy! Emily wished to have all her dreams come true.

She then was able to drop her wish into the wizard hat and off it went to be determined if her wish will be granted. Which they usually do whether it is the first wish or the second one.

On top of all that before or after her wish trip she will have a wishing party that she will be able to invited all her friends and family to join her as she celebrates her wish and she gets to raise a star that is hers and only hers to the ceiling where it will stay to resemble her wish, strengths and to reach for the stars and that all her dreams can come true.

It was an emotional event for me to watch Makenzie wish for things and to see her brothers and sisters wish for her to have all her dreams come true, and for health and happiness. I am excited for Makenzie to have her wish granted for her she defiantly needs it for all that she has to go through, just like all the other kids out there who have to battle some kind of life threatening illness. What an amazing foundation they have for kids to wish for what ever they want and to be selfish just this once to have all there dreams come true!

Another bump in the road

2011-01-21T13:51:00.003-07:00

I got a call from Michelle (her transplant coordinator) on the 18th and the first thing she told me was that we got the halter results back and she needs a pacemaker. No easing me into it so yes I just fell apart and cried. I asked why and she told me that she had 33 pauses over 2 sec long and a few over 3 sec long. I then asked what her heart rate range was and the maximum was 139 her average was 87 and the low was 42. which sounds like Kenzie but the pauses were the concern. She then asked me if we would like to do it here or in Denver and we chose Denver.
So i finally got a hold of Carrie and she explained it so much better and of course I had questions for her and she answered them the best she could. Of course she doesn't know everything about pacemakers but she did her best to answer them.
So on February 8 will be the Cath and February 10th they will put the pace maker in. So first they will do a Cath on her to make sure there is no rejection going on or anything else that may be causing it. They will also do an EP test to check the electrical part. Since Kenzie is so little it will be a open chest surgery so they will have to reopen her old incision and open her up that way and put the pace maker in under her ribs.
Carrie told me that since she had pauses over 3 seconds whether it was a one time thing or more than once that it requires a pacemaker because I ask if they could do another halter monitor but she said it wouldnt make a difference cause it showed up this last time and that is enough for a pace maker. Other wise it could keep getting longer and longer and cause a heart attack or just completely stop all together. In the past 3 years they have been doing holter monitors the pauses have been in creasing which shows that it is not getting better so a pace maker will help her in the long run and hopefully help her growth as well.
Yes I am very scared and it makes me cry every time I think about it. She was having such an amazing winter this year. She hasn't even gotten sick or anything, I was hoping this would be the best winter she has had since her transplant but things change you can never let your guard down that's for sure. The amazing thing is that she wasn't supposed to get a halter done for another 3 months but they decided to do it earlier. So who knows what could have happened in those 3 months. She defiantly has someone watching over her. I am thankful that they caught it before it did get worse and something worse happened to her. Things happen for a reason and she has so many friends and family support out there that it makes it more comforting she defiantly has angels watching over her. She will be a new little girl but also the same little girl just with something helping her heart stay healthy and pumping properly. Yes I am trying to stay focused on the positive it is hard but I have to do it for Makenzie. I love her so much and I am so thankful for her and all that she brings to this family and I am so thankful that she is still with us I don't even know how to thank my Heavenly Father for allowing her to stay here with us we have almost lost her twice and yet she is still with us and a very ambitious, smart, loving girl . She is a strong girl who will fly through this just like she has in the past bumps in the road.
Please keep her in your prayers. And thank you all for the prayers sent her way it means so much to our family that we have the support we have. We are also doing a fast for her on February 6 if anyone would like to join.

First clinic of the year

2011-01-06T17:36:00.002-07:00

If you don't know Kenzie is on every other month for clinic now. Today was the first one this year and it went pretty smooth got in and out of labs pretty quick then came the echo which takes the longest. During the echo her heart rate went up and down started in the 90's and moved all over the place even dipped into the 40's a few time's which I don't like but she seems to be doing good and her echo looked good so they are not concerned. All the doctor's looked at her and said she looks good so 2 thumbs up. So just to make sure her heart is doing good they put a halter Monitor on her for 24 hrs to record her heart rate. So i will update that later. And I just go a call from Emily and her levels all look good.
So this winter she is doing very well and only has had mild sicky (runny nose and cough). So we pray everyday that she will continue to do well especially during the flu and cold season. Thank you all for the prayers headed her way.

Happy 5th Birthday

2010-12-22T12:06:00.003-07:00

Today is Makenzie's birthday and what a wonderful day it was 5 years ago when she was put into my arms. The moment I looked into her eye's I knew she was a special girl who was sent to me from heaven. The past 5 years it has been a joy watching her grow into a little young lady who is an amazing little girl who has come along way with what she has gone through. And I am so thankful that she is still with us and to be able to spend every moment with her, to watch her grow. She is a smart girl I am looking forward to making Birthday cakes for many, many, many years for her and to continue watching her grow and learn and become the best woman she can become. I am defiantly the luckiest mom to have such a wonderful daughter who is loving and caring and enjoys being a kid. Happy Birthday my Skinny Minnie. Mommy and Daddy love you so much and is very proud of you. Hope you have a miraculous day. Love your Mommy

Changing Clinic on us Ugh

2010-11-09T20:25:00.006-07:00

Clinic was last Thursday for Makenzie I am just slow at blogging. We got there at 7:30 in the morning got her blood drawn and didn't even have to wait for her echo they came and got us right when we sat down in the room. Unfortunately it took the Echo tech an hour to do her echo. Luckily we were able to watch Bolt, and we were able to watch half of it cause it took him forever.
We then were able to see Michelle. Everything looked perfect her echo was perfect and I forgot to mention that I watched her echo and her heart rate stayed in the high 80's and 90's yeah. No dipping and bouncy around yeah. So maybe it was just a fluke thing going on last time. But I still have my guard up. Checking her heart every night.
Before we left Michelle said we will see you in 2 months. My reaction was "what 2 months no one talked to me about changing things around on us. I am not ready for 2 month check ups I like the reassurance of her getting checked every month". Michelle said that she is doing good and there is no reason to keep coming every month. Me "I new you guys wanted to extend the halter monitors to every 6 months but not spreading her clinic days out". Talk about taking things slow for us. Not all at once people. One thing at a time. But I guess not. It should be a good thing, I know I should be good with every 2 months cause she is doing so well and staying healthy. For that I am thankful I don't want to come off as ungrateful that she is doing good I am so happy and it makes my heart so full of joy that she is staying healthy and she can be seen every 2 months. But it is still a little hard on me because I like being reassured that she is doing well.
So her next appointment is January.
We then started walking to the cafeteria cause we get breakfast every time she has clinic and we ran into Emily and I asked her about every 2 months and she said she is doing well and I just started crying because I hate the winter now cause of all the germs and kenzie getting sick and her rejection last year was really hard on us and her almost losing her was something I don't ever want her to have to go through. I know I maybe paranoid but I like the reassurance of her heart and body doing well. I could probably have her go every month for the rest of her life just to no that she is doing well. Emily gave me a big hug and said if I ever need anything you no that you can always call or just call for moral support. Emily is defiantly my favorite coordinator here in Utah and Makenzie's. But overall Carrie in Denver is her most favorite.
Anyways later that day Michelle called and said her Prograf level is super high 17 which it is suppose to be between 6 and 8 so we got to skip her med that night and drop her dose down to .57 Kenzie was pretty excited that she only had to take one of her meds that night.
We had to go back to PCMC on Monday to get her levels rechecked and again it was high but lower than before it was around 9 so they lowered her meds to .56 and we get to go back on Monday for another level check so we will see how that goes. And then we wont be back until January Ugh. But I am thankful that she is doing so well that they can extend out her visits. But again it is still hard on me.

Take a deep breath

2010-10-13T21:06:00.005-06:00

Got all of the result back from Makenzie's test. Yesterday she went in and had an EKG done to check if Dr. Everitt can trigger Kenzie's Brady Cardia by pushing on her chest but of course her heart rate stayed in the high 90's low 100's. So that test showed nothing then she had a X-ray done to measure her pectus to see if that is causing any breathing or her Brady Cardia. Then she got a Pulmonary test done which she was a little nervous and had to have Braxton try it first then she was ok with it. She liked blowing out the candles.
Now for the results....The Pulmonary results came back and showed that she has mild restrictive ventilator defect. Which they say that it is ok. doesn't sound like it but they are not worried.
The Holter Monitor results are The high was 162 the average heart rate was 92 and the low was 52. ok I can breath a little. Her pauses have improved meaning her heart rate had less pauses. But she had 8 premature ventricular contractions, which is a skipped beat but they say it is common in a lot of people even healthy people. They were not all in a row so they said not to be concerned. It also showed none of the signs of her Brady Cardia like she did on the echo last Thursday where it was all over the place.
Holar test which is the X-ray on her pectus the extreme is 5.5 and Kenzie is 4.7 which is high so they want her to see an pediatric general surgeon that deals with a lot of kids with pectus to see what he thinks about it and so he can follower her. The good news is that none of the test's show that her pectus is not affecting her breathing or heart.
But nothing explained why her heart was dipping low and bouncing back up. Maybe it was just a fluke. I feel a little bit better and can now take a deep breath, and continue to pray that she will stay healthy and strong and the Doctor's will do what they need to do to keep her healthy. Thank you for all the prayers for our little girl.

Scary Clinic Day

2010-10-08T18:09:00.004-06:00

Today was clinic day another early morning but always worth it to no that Kenzie is doing ok. We got there at 7:30 A.m to get her blood drawn and what a mess that was. First the lab was closed on the first floor so we had to go to the after hour lab on the second floor. We waited for 5 min just for a phlebotomist to take us back down to the first floor to draw her blood. Then on top of that it took 1 phlebotomist 2 tries and didn't succeed. She then said she is going to page the I.V team but it was already 8 o'clock and she needed her meds. So I asked another phlebotomis to take a look and she did and got it on her first try. 8:25 a.m she finally got her meds.
She got an echo which I always watch her heart rate when she gets it done and this time I was nervous, at first she was doing well and her heart rate was staying in the 90's which I love to see then it dropped in the 80's and back to the 90's. And dropped to the 60's for a second and bounced back up to the 80's or 90's then dropped into the 40's and back up again. I know her heart rate lowers like that when she is asleep cause she is diagnosed with Brady cardia . But I have never seen it do that when she was awake on the echo her heart rate was always steady in the 90's except last month was 80's. But never low like that.
I asked Dr. Everit about it and she said that she was having lower heart rates and that they want to do some tests on her. They want to see if it is caused by her pectist which is how her chest indents in to see if it is putting pressure on her heart. So on Tuesday we get to go back to PCMC and get a few test done to see if they can get some information on what is going on. She has to get a pulmonary test and X-ray and an ECG
They also put a halter monitor on her and wanted to see if she can get her heart rate up like a normal 4 year. So they had me get her to run across the bridge that connects from PCMC to the U of U to get her heart rate pumping. She did not like that at all, so through out the day they wanted me to get her to do exercises.
Other than her low heart rate her echo looked fine her heart is functioning well. So I hope on Tuesday we can get some answers. Please keep her in your prayers that the Doctors can figure out what is going on with her heart and that she will stay healthy and her heart will keep functioning well. Thank you for all your prayers

Halter Monitor

2010-09-13T18:43:00.006-06:00

I got a call from Emily today Makenzie transplant coordinator. She said her results for her haltor was read and that Dr. Everitt said the results looked good. She said the longest pause was shorter than last time. Which is good news, then I asked her what her heart range was. She told me that her minimum was 43 the average was 83 and the maximum was 133. when I heard those numbers coming out of her mouth my stomach dropped. Each number from 2 months ago dropped almost 10 beats. I don't like low numbers it scares me but Emily said that Dr. Everitt was not worried but they will send the results to Denver and see what they say about. I don't no if my stomach or heart can take those numbers especially if they keep dropping. Luckily she gets a halter every 2 months and goes to clinic once a month to keep an eye on her. Please continue to keep her in your prayers that her heart will stay strong and the doctors will do what they need to do to keep her safe and healthy.
Clinic also went well her Echo looked good and her levels also were perfect.

2010-08-13T17:14:00.003-06:00

I am not good at titles but just a little up date on Makenzie she is doing amazing I love the summer cause she does not get sick as much. She has been loving the summer and playing outside with her friends.
Luckily she does not start school this year I am so not looking forward for her to start kindergarten I am still debating on whether homeschooling her or public school. I think I am going to have a harder time with separation then she will even though she really does hate to be away from me.
This summer has been the first time she has really had chores since her brother and sister went home with there mom for the rest of the summer she has picked up the slack and has been keeping the living room cleaned every morning I just have to ask her to pick up stuff in the living room and she does it sometimes she says " but i didn't do it" but in fact it is her clothes and toys on the floor. But she does it and it helps out alot so we can spend time playing or doing preschool.
She is such a sweet girl she has her moments though were she likes to bug braxton, but I don't think any mom can get away from that if there a siblings in the house. She will be turning 5 this year. She is growing up so fast but I am so thankful that she is still here with us and I hope there are many many and many more years were I can brag about her, play with her and watch her grow into an old lady.
I love you my Skinny Minnie

2010-07-21T19:26:00.002-06:00

It has been a real busy week last week but I finally got a hold of Makenzie's doctor about her Holter Monitor and it looks great. Her High was 140 her average 91 and her low was 52. She had no pauses which is great. She is doing so well that she is loving summer and loves playing outside. Life is great and I am so thankful that she is still here with us to. I love her with all my heart.

2010-06-08T16:58:00.001-06:00

I finally got a hold of Carrie and got Makenzie's halter monitor results back and her max heart rate was 148 her average was 109 and her minimum was 42. She had not pauses which last time she had a few so that is good. Carrie said all the numbers are reassuring and Makenzie seems to be doing well and loves summer time.

Summer fun

2010-06-07T19:53:00.006-06:00

Alright life is great my kids are healthy and summer is here good bye ugly nasty germs. I hope, atleast through out the summer then we start all over when winter comes around.
Kenzie had clinic last Thursday and all went well her Echo looked good her heart sounds great her med level was an 11 which it is suppose to be between 6-8 so they lowered her dose to .55 instead of .56 so I have to take her back for labs in 2 weeks.
We are also waiting for Carrie to give us her holter Monitor Results from last month. She has not been in the office so we will keep waiting.

This year Makenzie has excelled a lot in learning she has mastered all her letters, writing and reconizing them. She has also learned to spell the "AT" words like cat, hat, sat, mat, rat, fat, and so on. We are working on sounds which has been hard for her but she has learned a few. Her newest accomplishment was memorizing the Pledge of Allegiance in a week.

I started doing preschool at the beginning of the year with the kids at home and I wanted to continue during summer to keep there minds fresh. But there is so much going on and it is hard to keep them inside with such good weather, that I have missed a few days. So hopefully I can keep there minds working. And they don't relapse.
I love staying home with my children it is my life and I am so not ready for them to go to school. Like some people I hear "oh man summer is here school is out, I can't wait for school to start again". Not me I love seeing my children grow and watch them develop and watch there personalities erupt. Waking up and spending the whole day with them is priceless to me and I love it.

3 year Anniversary

2010-05-17T17:53:00.005-06:00

I wanted to post yesterday but it was so busy that I did not have time.
Yesterday marked Makenzie's 3 year anniversary of being a heart transplant patient. We are hoping there are going to be many more anniversaries that we can celebrate Makenzie's life and honor her donor. What a roller coaster it has been with all the ups and downs that we/she has gone through. But we could not ask for anything more, she is still here with us considering we almost lost her last year. Makenzie is an amazing little girl who I am so thankful that she is my daughter. Even though she is so little and very shy, she has such an impact on people. She has come along way over the 3 years. She is writing and has learned to spell her name. She also has learned to identify her alphabets, shapes and colors. We are now working on the sounds of the alphabets so she can start learning to read. We are also trying to teach her to be more social not just with kids which she is doing pretty well with but also with adults.
We could not have taught her all that if she didn't get a second chance. And for that we are so thankful for the amazing family that decided to donate there loved one's organs to save my daughters life and who knows how many others there might have been. Thinking everyday how hard it is to have lost someone especially a child and have to decide a very unselfish act at the most hardest time I couldn't even imagine, to donate there loved one's organs to save another child so they could have a second chance at life and so there family can enjoy another day with there child.
There are no words to thank the family but to just honor them by having Makenzie live a normal life and keep her as healthy as we possibly can and teach her how important it is to take all her meds. So we can show how much we appreciate what they have done for us and her. Even though we do not no the family or anything about the donor our hearts go out to them and again thank them for there generous gift.
The gift of life.
Be a Hero Be a Donor

Home away from Home!!!

2010-05-10T21:23:00.021-06:00

Monthly visits to the doctors, Watching your child cry when the nurses take them back to the OR, worried about germs, rejection on the back of your mind when she gets sick, making sure they take there medications on time daily, Yearly Cath's.
Life as a Heart Mommy can be very mentally exhausting ( I cry about everything now) . But I am sure it is a lot harder to be a transplant patient, and having to go through it all. But I would not change my life or my daughter for the world. She is one of the best thing that has ever happened to me (including my family of course). You would think I would say why me I can't mentally take care of a child who needs constant care, but she has brought our family closer then we ever imagined. We have gone back to the church, got sealed in the temple as a family. Which was far from our minds a couple of years ago. And the Lord gives you what you can handle, and I am guessing he thinks I can handle it. So far I believe I have done the best I can to care for her and getting her the best care I possible can.
So off to Denver we go for Makenzie's yearly Cath. We left for Denver on Thursday May 6th to be there by Friday Morning. An 8 1/2 hour drive with two toddler's in a back seat of a saturn was actually not as bad as we thought it was going to be. UNTIL we got about 1/2 hour into Colorado we start hearing "are we there yet" "are we there yet". But we made it safe and sounds. We were lucky enough to get into the Ronald McDonald house in Aurora, which is an amazing charity if I might add
.
Friday we had to check into the hospital at 10:30 a.m, get her an Echo and an EKG. Then from about 11:30a.m to 2:00 p.m we just laid in her room while doctor's and nurses came in and out of the room checking on her until she was ready to go back to the OR room. They finally gave her some versed which made her a little loopy which was cute but once they came to get her to go back she just started crying and hanging on to me. And I know that I should be strong for my child and not cry but I did, tears came rolling down my face. Just thinking I am letting my child into somebody else's hands and I am not there to watch her to make sure she is ok.
About 30 Minutes later after they came and got her I get a phone call from the OR room telling me that she is doing good. It took the doctor which was Dr. Pietra a little longer to get the Cath in her leg but she is sedated and is doing great so far.
It was really nice to see Susan, James and Allison there also. We were able to sit and chat with Susan and James in the waiting room while Allison was back in the recovery room.
After about an hour of waiting we get another phone call saying they are just finishing up and Dr. Pietra will be out to talk to us. So about 20 minutes later they came and got us to go back to the recovery room to see Makenzie. She was in tears wanting mommy so I gave her a big hug and told her I am not leaving you again. So we just waited for the Doctor to come to talk to us, so during that we sat and watched movies and tried to keep Makenzie laying flat for 4 hours, it is a lot harder then you think.
We finally got to talk to Dr. Pietra and Carrie, they showed us pictures of her heart the function and the squeeze. The numbers all looked good her Pressures were awesome no damage to her coronary arteries. So all in all she got a good grade. She did amazing and we are so proud of her. She was finally discharged at 8 p.m and we all went back to the Ronald McDonald house and just crashed into bed.
Carrie called on Saturday with the biopsy results. And said she was a 1R which means that there is a little army of lymphocytes in her heart. We were hoping for a 0 which means nothing is going on in her heart but they said that a 1R is next to nothing. It doesn't sound that way to me but you have to trust in the doctor's and I have talked to a few people about it and they said the same thing. So we can come home, so it must be nothing to worry about or they would have kept her. On Saturday we got the chance to go to the Denver children's museum which the kids loved they loved the grocery shopping part the most. Then after we were able to go and visit grandma Judy (a lady we met last year at church when we stayed for 3 month) It was really nice to see her.

On Sunday we got to go to church and see all the nice people that helped us last year. I love that ward and the people in it, the bishop is an amazing man, and his wife is so sweet.
We finally left after church to come back home another 8 1/2 hour drive which again was not that bad I got a little car sick about 20 min away from home but we made it back home around 10:30 p.m.
Carrie called me on Monday with more news they want Makenzie to take steroids to fight off the army that is in her heart. And a really disgusting medication. It was not the news I was expecting so it made me cry; again, told you an emotional wreck. Luckily she only has to take it for 11 days so hopefully it works. We get to go back to Denver next year for another Cath.
Thank you all for the prayers that were sent her way. She is an amazing daughter and we love her so much.
BE A HERO BE A DONOR!!!!

Holter Monitor

2010-04-30T12:22:00.003-06:00

I just got the results from the doctor's about Makenzie's Holtor and Michelle said that the max heart rate was 144 and the min was 48 and that is when she is sleeping, and her average is 91. She had a few pauses, but there were 2 pauses that were 2 seconds or greater. Michelle said that is good for her. I am a little nervous because the last one before this one her max was 144 her min was 55 and her average was 102. But Michelle said it could be that she is growing. Still makes me nervous though. But Makenzie seems to be doing great with those numbers she is up and running around like a 4 year old does.

2010-04-23T20:51:00.004-06:00

Today started off early as every clinic day does. Makenzie had to get her blood drawn to check her levels, and for the first time in who knows how long, she was terrified of the needle she was struggling so hard to keep her arm away from it. It broke my heart to hear her cry like that, I have not seen her that way for the longest time. Even though She has the right to cry if she wants too she is 4 years old, it hurts me to see her that way. On the other hand it is sad that she is used to getting big pokes when they come at her with a needle and she doesn't cry. Either way it is hard to see your baby getting poked at once a month. Whether she cries or not. But it is nice to know that she is doing good and her medication is working.
Her Echo went well Dr. Norlin said her heart is functioning well and she sounds great. She also had to show off and write her name for her doctors it was cute. They were impressed.
She did get a Halter Monitor put on so I won't get the results back until next week but I hope everything sounds great and the caffeine is doing it's job and keeping her heart pumping well. I will update the results when I get them. She also hit the 27 pound mark way to go Makenzie
And as always thanks for all the thoughts and prayers that are sent Makenzie's way she is an absolute treasure in our life. And I could not imagine life with out her or any of my children they are the greatest gift's I could ever receive.
Be a Hero Be a Donor!!!!!

Camping Trip

2010-04-20T10:27:00.002-06:00

We went camping last week to Arches it was way fun. To be honest I was really nervous about taking Makenzie camping it has been the first time since her Transplant. Before we left to go camping I keep checking to see if we had all her meds I was so nervous that I would leave it, but for the 3rd time checking we finally left. I told Tyler that we should say a prayer before we go that we would be safe and that Makenzie would stay healthy and strong. Makenzie had fun getting dirty and playing in the dirt, I for one was not enjoying watching her it was hard for me to just let her be a kid and get dirty with germs. But a few days later I relaxed a little and just let her have fun with Braxton and Jackson. Unfortunately she ended up getting diarrhea so i kept her in pull ups the rest of the time. But luckily it went away in a few days. But to be honest I was nervous when she ended up getting it, cause diarrhea could be a sign of rejection and that is always on my mind when something happens to Makenzie. It was a fun family outing for the weekend and can't wait to do it again next year. I will post picture's when I get my picture's off my camera.

Hi Hoe Hi Hoe off to clinic we go

2010-03-12T17:38:00.002-07:00

Makenzie had clinic on Thursday. She goes once a month since her rejection last year which I don't mind it makes me feel comfortable to know that she is doing well. This clinic went well it was a little slow but her echo looked normal and her prograf level was a little low so we had to up her dose. She also had a Halter Monitor on 2 weeks ago and the results came back for that and Dr. Everit said it has been the best one yet. Her minimum heart rate was 55 when she was asleep and her high was 144, so that makes her average heart rate 102. She had a few pauses but they said the longest one was 2 seconds I believe. But they kept her caffeine the same dose. Her doctors probably think i am crazy because we are supposed to go camping in a few weeks and I asked them if that would be ok taking her and should she been seen before or after we get back and they looked at me and said you are funny Monica. They asked me what makes you feel comfortable and I said before and after. But she will be seen after. Yes I am a little paranoid but we had our fair share of close calls and I do not want to see Makenzie go through that again selfish maybe but I don't care. She is doing amazing. And I thank my Heavenly Father everyday for that and of course her Donor Family and what an unselfish act they chose to give life to others.

A long week

2010-02-08T15:14:00.003-07:00

Last week was very long it started out perfect. It was the week we were going to get sealed as a family, nothing was going to get in our way. Bamm then on Tuesday morning Makenzie sounded like she was having a hard time breathing around 6:30 a.m I figured I would just wait until PCP opened up but it was around 7:00 a.m and she was saying her ribs hurt on her left sideI checked her heart rate when she was asleep and it was 133 which is really high for her. So I decided to take her to the ER at PCMC. When we got there she had a fever and her heart rate was 177. So they took blood test and sucked her nose and got test done on that and it came back that she was RSV positive. My heart just stopped and did not want to her any bad news we had a hard year last year with her and I could not go through that again. But the doctor came and said they were going to admit her to the hospital. It was hard to see her back in the hospital. But I know they would be able to help her to get better.
They had to put an IV in her arm to run fluids through her body. Through out the hospital stay she had many fevers. Which was treated with Tylenol. But everyday she seemed to improve everyday. She got a blessing from our bishop. And the next day she seemed to be doing better Tyler and I got sealed on Thursday it was really hard getting sealed without our kids but i know
we were doing the right thing well that is what Tyler was telling me anyways. I was wanting to postpone it but Tyler did not so we went through with it and it was beautiful but really hard that I cried I think mostly because my kids were not there with us. But then on Friday Kenzie was doing much better and Dr Norlin said It was looking good and she may go home today and around 3:00 P.m They said that she was getting discharge. I was excited so I called the Temple to see if we could get the kids sealed to us on Saturday and they had an opening so Saturday at 7:00p.m our kids were sealed to us for time and all eternity and it was amazing to see them all dressed in white all innocent and precious. And I love my kids with all my heart and I thank everyone for all the prayers for Makenzie.

2009-12-27T15:29:00.003-07:00

Clinic was on Wed do to the Holiday's it was not busy at all so we got in nice and easy with out any long waits. She did really good with her blood work, they got it in her vein the first try and got all the blood they needed and then we did not have to wait long for the Echo, it just took the Echo tech a while to get all the pictures we watched 1 1/2 shows waiting for him to finish with Makenzie. Her Echo came back perfect and her heart sounds really well. Her labs came back and they also looked good so no adjustments on her meds. They put another halter monitor on her because last month she had a lot more pauses and adjusted her caffeine so they want to see if they put her on the correct dose. So I will update that later.
She also was able to get her 2nd dose of the H1N1 vaccine which she did not like getting that at all. Primary Children's hospital is giving them out now to patients family so Braxton and I was able to get the vaccine as well. But all in all clinic went well and we will be back in a month. Thank you everyone for your prayers and support.

Happy 4th Birthday

2009-12-22T20:43:00.006-07:00

Happy Birthday my sweet little angel you have made this year such a scary but wonderful year. I am so thankful that you are still here with us.

You are growing up to be such a wonderful little girl with such a strong little spirit.

Mommy and Daddy love you so much and enjoy watching you grow up and seeing all your little personalities change as you get older, and making you the person you are today. Hope it is a wonderful day as it is to us. You are such an amazing little girl who I could not ask for anything better.

We are blessed to have you in our lives and what lives you have changed even though you are only 4.

I would again like to thank her donor family for allowing Makenzie to be here and be able to celebrate another birthday.

Thank you

2009-12-03T13:59:00.002-07:00

To start off we are so grateful that she is staying healthy this winter season especially with all the cold and flu viruses going around. It has been a month since I have updated on Makenzie she had Clinic back in November and everything went well, again they needed a lot of blood so they used a vein in her hand but she was a trooper and did not cry. Her echo looked awesome and her heart sounded good all her blood tests came back perfect so no adjustment on those. They did put a halter monitor on her and we got the results back with in the week and it had more pauses then last time and the pauses also lasted longer so they had to up her caffeine to 4 ml per day. So this month when she goes back to clinic they will put another on her to make sure that the caffeine is working for her at that dose.

Clinic

2009-10-24T12:34:00.004-06:00

Thursday Makenzie had clinic, they needed so much blood because she has had diarrhea for over two weeks now that they wanted to cover all there bases and get different kinds of tests to see if she has any viruses that are hiding around in her. They also took a stool sample to check that also. Echo took forever as usual. We finally got in and her echo looks good her heart sounds great, so far a healthy girl. Her prograf level came back and it is right on target for the first time in a while so we won't need to go back until next month. Luckily her weight maintained and she actually gained a few ounces 26.4 pounds even with all the diarrhea I was for sure she would have lost some weight. Way to go skinny Minni. Just not really looking for winter time again with all the viruses going around and the swine flu. We just need to keep her locked up in the house. She can be BUBBLE girl!!!!!!!!!!!!!!

A little update

2009-10-12T12:44:00.002-06:00

Well it has been a while since I have updated on Makenzie so here goes. She had an echo done a few weeks ago and all looks well. She is doing really well so far, she is gaining weight she is up to 26 pounds, getting big slowly but surely she is getting up there. Her prograf level is still not stabilizing it is a little high so they lowered her dose to .56, we get to go back to PCH this week to get her blood drawn again.
Now for the dental update she went to the dentist a few months ago and I told them i was concerned about a black spot on her tooth, so they made an appointment to get it fixed. We went to PCH on the 6th and they put her out and took her to the OR room which sounds pretty severe for a tooth but she would not even let the dentist look at her. I was so scared when they took her because of her heart and the rejection she got over this year. To be honest I cried when they came and talked to me the first time to let me no what they are going to do before they came and got her, but 35 min later they were done and she was coming out of the anesthetic crying for mommy. They put a crown on her tooth and filled another. And life goes on

Second tumbling class

2009-09-19T13:08:00.003-06:00

Today went much better we went and got her a little tutu because there were other girls there that had them on so she wanted one think that helped her out a little. This week she did a few warm ups, but she did not want to run. Then the kids all lined up so they can do there summer saults and kenzie did 4 of them it took her a while but she did it and the look on her face was so cute she was excited. Now for the second trick they did hands stands and when it got to kenzie's turn no can do she did not want the teacher to touch her at all but her big sister Ashleigh tried to help her and it went a little better. All in all the second week well.

Tumbling Class

2009-09-11T17:15:00.004-06:00

Makenzie started tumbling class on Wednesday, and oh boy what a fun experience lol. We got there and she would not even do the warm ups. She did tell the teacher her name though which for her is a good start.
All the kids started to line up to start tumbling and Kenzie did not want to even do a summer sault she just cried for the most part, but when they where able to choose there own trick Kenzie actually did something. She did the splits, it was cute and I was proud of her so hopefully next week she will do better and I can get some pictures of her.

Clinic

2009-08-27T18:46:00.002-06:00

Today went pretty smooth clinic started off with a good bang. Got into the lab found a nice vein yes it took them one try to get the needle in. Then went to the cardiology clinic and got into a room they took Makenzie weight she still weighs 25 pounds. Right after echo came and got us they did there thing and then we saw Michelle.
Makenzie's white blood count is a little on the high side so they said she might be fighting off an infection so i need to keep and eye on her to make sure she does not get sick. Her Prograf level was a little low so they bumped up her dose to .58 and we get to go next week to get labs drawn again.
Dr. Everett wants Makenzie to get another halter monitor done next week to see if the results are still good if they are they will want to lower her caffeine dose.
All in all it was a good day, just not excited for winter with the swine flu on the rise, yes she will need the vaccine for it.
I thank my Heavenly Father every day for the health my daughter has and the love she brings to are family.

Haltor Monitor Update

2009-08-19T16:02:00.004-06:00

Last week Makenzie got a Halter Monitor put on and we got the results today. Michelle called me today and I missed the call so she left me a message and the tone of her voice did not sound good. So I was nervous to call her back and when I did my heart was pounding waiting for the results and of course her computer was going slower than ever. The worst thing always goes through my mind and I prayer everyday that she will continue do well and her heart rate will continue to stay steady.
So for the results Michelle said that it actually looks better then the last time. She said that there were less pauses, shorter pauses and no premature beats. Her heart rate numbers are... the lowest it dropped was 54 and that was around 1 a.m and the highest was 140 and her average is what they look at the most is 103 so we are pretty happy with those numbers. Thank you all for the prayers I no that it helps out.

Another 2 weeks have gone bye

2009-07-21T15:40:00.001-06:00

Well it has been 2 weeks since Kenzie has had clinic so here we go. This week clinic took forever it started off with labs which they had to get a lot of blood so they needed to use her vein so they first tried her right hand and the vein got blown so it was no good but to my surprise she didn't even cry once, so they went for her left hand and got a good vein and on this hand she only cried a little.
Then she got put in her room to wait for the Echo tech to come and get us and once they came and got her their was an emergency in the Cath lab that needed a Tech so her Tech left so we then had to wait for them to come and get us 15 min went by and nobody has came to get her but other Techs have came and gone with other kids. So finally i went and got a Tech and they finally saw her and got her Echo done it is now 9:30 a.m and if you no we usually are done by then. But we had to wait to see the Transplant Coordinator and the Cardiologist.
The Echo results came back and they looked good her labs are also good, her levels also came back her Prograf level is finally on target but once we start the new bottle we need to let the Coordinator no so they can monitor her levels to make sure the new bottle is mixed right. We also got her cellcept level back it is a Little high but they are going to leave her where she is at. We finally were able to leave and it was 10:45 a.m

Levels

2009-07-10T15:27:00.002-06:00

This week has been crazy busy with going to PCH last Thursday during clinic her levels were low so they up her dose to .47. S0 we had to go back to the hospital on Monday to get her levels rechecked and it was up but not where they wanted it to be so they up it once again to .48 and wanted Makenzie to come back today to get it checked again. Once again her levels dropped so Emily up her dose to .5 and we get to go back on Monday to get her blood drawn again.
I then called Carrie to see if PCH has been faxing Makenzie's note's and last clinc she did not receive any thing so i asked her about Makenzie's levels and she mentioned getting a new bottle, I then thought about it and Makenzie started a new bottle right before her clinic day so I called Emily back and told her about it and she is going to keep track and if it is the new bottle she will talked to the pharmacy to get a new one refilled.

Life is wonderful

2009-07-03T09:42:00.002-06:00

Clinic is always a fun adventure haha. Getting up early is no fun with 2 kids actually this morning was not bad because they went to bed early. Anyways luckily this week they did not need a lot of blood so they poked her little finger and not even one tear. Clinic was running slow so we didn't even get into her echo until 8:30 a.m. We actually saw her coordinator before the echo which was nice then we wouldn't have to wait for Michelle after the echo, just Dr. Everit (cardiologist) .

Makenzie's echo and her heart sounded good. Makenzie actually gained weight as well she is up to 25 pounds which does not sound like much but for her little self it is awesome. All of her blood work looked good except her Prograf level was way low it was 3.2 when it is supposed to be between 6-8 so they increased her dose to .47 and on Monday we need to go back to PCH to get another lab drawn to see if her level went back up. So we get to get up early once again.

Clinc, Pink Eye and a Cold

2009-06-22T17:12:00.005-06:00

Clinic went well last Thursday they had to take a lot of blood this time, her usual to check her levels and they needed extra blood to see if she has a virus that is causing her diarrhea. Her Echo looked good her levels all looked good. Her magnesium level was a little low but Carrie was not to concerned. The doctors at PCH are also concerned about the caffeine she is on and her weight gain so Carrie decided to lower her dose down to 4ml once a day instead of 5ml.

Last Saturday during the night Kenzie was all stuffed up and around 4 A.M Kenzie started coughing so i took her temperature and she had a fever of 100.4 so i gave her some Tylenol and 10 min later she threw up. Flash backs came but i new she was not have rejection cause we just went to clinic so the next thing that came to mind was the swine flu i could not sleep i was tempted to take her to the emergency room with an immune suppressed child they can catch everything. The next morning i called the on call coordinator and talked to Michelle she said it does not sound to concerning but if things seems to worsen take her in.

Now on Sunday Kenzie woke up with her left eye glued shut so i didn't think anything of it then later on during the day her eye got red and goop started coming out so i took her to the inst care and 2 hours later we finally got in and they prescribed her with eye drops and i had the doctor check everything else since she has had a cough and stuffy/runny nose just wanted to cross off the swine flu. Doctor said it is probably just a virus causing a cold.

Haltor Monitor Update

2009-06-15T19:16:00.005-06:00

Today I talked to Michelle the transplant coordinator Makenzie has been having diarrhea for about 2 weeks so on Thursday they are going to do a few blood test (CMVPCR and EBV) to see if it is a virus so i will up date that later.

But now for the good news we got the halter monitor results back if you no Makenzie's background she was diagnosed with having bradycardia which means she has a low resting heart rate. Her prior holtors showed lowest her heart rate sat was in the 40's when she would sleep and the highs would be in the 150's with the caffeine. Anyways this time her lowest heart rate was 55 asleep and 150 for the high, her average was 117 so those are very good numbers for her. So the caffeine is doing its job.

Update

2009-06-06T09:13:00.004-06:00

Just a little update on clinic once again. This week we went on Thursday it went pretty smooth other than her labs, she had a lot of blood that needed to be drawn so they had to do draw from her vein which they found one in her wrist. This time the nurse didn't quite get it the first time she ended up digging around for a minute which bugs me.
Anyways her labs ended up looking good but waiting for her Cellcept level to come back, Echo looked good as well even though the Tech this time took for ever. They also put a halter monitor on her which needed to stay on for a 24 hour period to record her heart rate so hopefully it recorded it because when she woke up there was only one lead that was stuck on her chest she is a wiggler at night so it didn't surprise me that they all fell off. We should get the results back sometime next week I hope so I will have to post the results next time.
We are down to once every other week now which is a little nerve racking to me because I like the feeling of knowing that her heart is still functioning properly every week and there are no signs of rejection.
On the other hand we ran into our good friend Noah which had a Heart Transplant the same year Makenzie did in Denver. His Mom said that he is doing good and his Echo also looked perfect. He is getting big and we love your hair Noah so cute.

Early Morning

2009-05-27T12:10:00.003-06:00

Yesterday we went to Clinic, what another wonderful morning having to get up at 6:30 a.m to get to PCH hospital before her medicine time. She got a finger poke again this week to check her levels. Makenzie has been having diarrhea for a few days which made me a little nervous because that is what she started doing when she went into rejection, so i was thankful that she had clinic so they could check her Echo and they said it looks good so yippee. As long as she doesn't get a fever or start vomiting then i think she will be ok. She has a lot of energy also so that is another sign of reassurance. Her Prograf level was a little high so Emily faxed the notes to TCH for Carrie to look at too see if they want to make any changes, but with having diarrhea they may keep it where it is at.
All in all clinic went well but for some reason though it seems like she collects a lot of little prizes between the lab giving out stuff and after her Echo. We end up going home with a little bag full of toys every time but her favorite though is after her echo they give out coins and they have multiple coin machine's and depending on the Echo Tech she gets between 2 to 5 coins and that is where the bag comes in.
Next week is her last weekly visit for clinic then it goes to every other week as long as everything goes good, which means we have been home for 6 weeks!!!!
I still thank the Lord everyday for allowing us to have Makenzie in our lives and for her to still be here with us and what a wonderful blessing she has had on our family.

Another wonderful day

2009-05-18T15:27:00.004-06:00

Today was clinic day at PCH another early morning had to wake up at 6:30 a.m to get makenzie to the hospital to get her blood drawn before she takes her medicine at 8:00 a.m. Other wise if she takes her meds before her levels are drawn, her levels will be to high and not accurate to read correctly.
Today Makenzie saw Michelle the coordinator. She got her Echo done and the EKG read. Dr Everett her cardiologist said her Echo looks good,her heart sounds good her heart rate was sitting at 114. Everett specifically said she didn't hear a murmur which i have never heard her say that with Makenzie.So believe me i asked if they have heard it before on her and they said no. "sigh" which is good cause she said she has been hearing murmurs on other children. So that is a relief Makenzie has her own little things going on with her heart and what comes with a transplant patient. We don't need anything else right now for her to have to deal with.
Well good news her levels came back in the target range that they like it 7.6, so no adjustments this week which last week it was high so that is good that it went back down. They didn't do the cellcept level so i will have to post that level next time they draw it. Luckily they were able to just do a finger poke this week cause they didn't need as much blood drawn, so Kenzie didn't mind clinic this week cause no big pokes YEAH.

Happy Anniversary

2009-05-16T16:11:00.008-06:00

Today is 2 years since her transplant and what an amazing transformation from 2 years ago. she looks so much healthier and has so much more energy than before the transplant.
There of course has had a few ups and down with being immune suppressed, rejection which she just went through and being in out of the hospital through out the years.
I am very thankful she is still with us today. I thank my Heavenly Father
everyday for allowing me to still be her Mother and what a blessing it is.
It is amazing how much strength a little girl can have and how much closer she has made our family. I want to thank Makenzie's donor angel and their family,
who ever you are for the unselfish act, for allowing your child to be a donor and giving my daughter a second chance at life. My heart is so full and grateful every day for the decision you made cause of your decision i still get the chance to play with her read to her tuck her into bed at night and just being able to watch her grow into the little girl she has become. We love you Makenzie Happy Anniversary. Be a Hero Be a Donor

Another day at Primary Childrens Hospital

2009-05-12T18:38:00.002-06:00

Today went pretty smooth, she needed a lot of blood drawn so instead of a finger poke which she does not mind she is used to it. They need to take blood from her arm, she new what was coming when right when they started looking around for a vein. I warned the nurse that she is a hard poke because her veins are so small, it usually takes about 2 to 3 tries before they get it right. But this nurse got it in the first try which i was relieved. Because it irratates me when they keep digging and trying and get no where.
She got her Echo done which looked good :). Her labs also looked fine her levels were a little high but Carrie wants her meds to stay where they are at and if they stay that way next week then they may make some changes. But all in all doing very well.
After her appointment i took her to the dentist cause she has a black spot on her bottom left tooth so i figure i should take her in for her first dental visit. That was fun she wouldn't even open her mouth she stayed on my lap while the dentist tried to look. He finally got in and saw the tooth and for little kids like her who don't want to cooperate they actually take them to the OR and put them out i guess it is pretty much an all day process with putting them under to recovery time they call it "same day surgery". That was the plan but the dentist thought is was to much for one tooth so we will see them in 3 months.

Clinic Day

2009-05-04T15:00:00.003-06:00

First of all thank you everyone for all the prayers for Makenzie.
Today we went to Primary Children's Hospital for clinic, it went really good.
Her levels looked good, her echo looks good, she has so much energy
can't ask for anything better.
Makenzie is slowly getting to know the doctors here again which we will be seeing a lot more of them because she went into rejection in January and ended up getting life flighted to Colorado for treatment. We where there for the 3 months that they require.
She had severe rejection which ended up leaving her in the hospital for 2 weeks. She ended up going into Cardiac Arrest and was gone for about 15 minutes and the nurses and doctors had to do chest compressions and breath for her to bring her back and i thank my Heavenly Father everyday for allowing her to still be with us and bringing her back to us. Luckily they where able to get it under control and her echo ended up almost back to normal function after the 3 months.
Now she is on 3 medications, She was on neoral but took her off that one and put her on prograf cause her levels were just all over the place and they are hoping this med will stabilize her level, cellcept which she hates and caffeine again to help stabilize her heart rate it seems to be working though it still dips in the 60's but it shoots right back up to the 100's yeah!
Just a little thanks to the cardiology team and transplant team in Colorado for saving my daughters life. Carrie we love you.
Thanks to the Piney Creek ward for all the love and support you gave my family and I while we were out there. You know who you are.

A world changed in an instant

2009-05-01T16:44:00.004-06:00

A little history on Makenzie since it took me so long to figure this blog out.
February 17, 2007 Makenzie got sick and had a fever of 103 so we took her to an instacare thinking they will just give her fever reducer medication her oxygen level was low they took her to get a xray and found that her heart was enlarged for her size so they ambulanced her to Primary Childrens hospital. She was then admitted and put in the PICU. They later found out that her left coronary artery was on the wrong side of her heart and her oxygen was circulating around and not through her body. They did a ALCAPA repair to try and fix it. She was in the hospital for a month. She was then released, 2 weeks later she got readmitted back because the surgery didn't work cause there was already to much damage to her heart and wont ever go back to normal. They then told us she needed a Heart Transplant and insurance wouldn't cover the transplant in Utah so off to Denver we go she went by life flight from Utah to Denver in April to a wait a Heart.
She was put on milrinone and we waited for 23 days and then got the call.
Every little thing went threw my mind scared, happy, anxious and sad for the lose of another child and family, but very grateful they chose to have there child be a donor and give my daughter a second chance at life.
After the Transplant she was diagnosed with Bradycardia
she was put on Caffeine to help her heart rate and a lot of immune suppressant
medications right after the transplant. She was only in the hospital for 1 1/2 weeks.
We then stayed at the Ronald McDonald house in Denver for the
3 months post Transplant. She was seen twice a week in clinic to
get Echo's, Ekg's and blood work.
We then were able to come home the end of August of 2007.
Eventually the clinic days where spread further apart and life was great.
She did get sick alot more and they seem to last forever, and everytime rejection was always in the back of my mind, she did have a few ER visits but luckly nothing major. She was our happy little girl. Thank you to our angel donor and the family for saving our little girl.