Wednesday, August 31, 2011

Make-Wish and we deserve a break-not another knee surgery for Britt!!!

Abby was lucky enough to be able to visit with the Make-A-Wish people yesterday.  I'm so glad she got to do it when Britt was in town, I just wish Brock could've been here too.  When we got there, we sat down with her wish granters, Mike and Pat, and munched on some of Abby's favorite snacks while they got to know her a little bit.  We then got a tour of the place, it's pretty incredible.  There are pictures hanging on the walls of all of the kids that have been able to make a wish, and a description of what they wished for.  Out in the back is a wishing pond, they gave us each little wish tokens to throw in the pond.  Abby and Britt decided to save theirs and put it on a chain to wear, not me...I made a wish and tossed mine in.....moms get wishes sometimes too!!  Then we went upstairs and played the wishing board game to help Abby try to choose what she wanted to wish for.  After the game, Abby had to write down her top 3 choices for wish and put it inside of a little capsule.  While she was writing her wish, we all wrote down something that we wished for Abby.  We read these to her in the wishing room, and then she was given these to keep.  In the wishing room Abby sent her wish capsule to the "wish wizard" to see if it could be granted.  Sounds kind of cheesy, but I bet little kids eat it up!  Abby's top wish was for her family to be able to go on an Australian cruise, her second choice was a shopping spree.  But, later that night she started having doubts about her wish. I think that Abby's a little nervouse to travel to far from PCMC, nervous about all of the germs on a plane and a cruise ship, she's not allowed to swim for another year, and she'd have to wait a long time, at least 6 months until her wish could be granted; So, today, she'll probably switch her wish and go on a shopping spree!!  Britt is still trying to convince her to meet Justin Beiber, thank goodness Abby doesn't want this!!  I just want it to be Abby's wish, it has to be something she wants.  She commented on facebook that "sometimes, when you get what you want, you can't decide."  She's having a hard time making up her mind, I think I would too!  When she finally makes up her mind, I will let you know.

After almost a year, and 2 surgeries, Britt's knee has still been giving her a lot of trouble and pain, so yesterday I took her to an orhtopedic specialist in Salt Lake.  He told us she needs another surgery!  As soon as I heard this, I said schedule it as soon as possible so we can get it taken care of before we move back to St. George.  So, Friday, I get to spend the morning with Abby at PCMC getting her cath/biopsy and going to clinic, then I take Britt to Jordan Valley to have her knee surgery.  Hopefully, the timing will work out.  Abby should be first in the cath lab, and Britt is scheduled last on Dr. Beck's surgery schedule.....I just hope it will all work out, It will definitely be a stressful day.  I always hate when Abby has her cath/biopsy-I'm nervous the whole time, and the last time I was sitting with Britt waiting for her knee surgery was when I got the call that Abby had collapsed at school.  I just want Friday to be over with.  The good news is that Britt will be able to spend next week with us while she is recovering, the bad news is that Brock will still have to be in St. George.  I don't know if we'll be able to go to St. George this weekend either, it just depends on how Britt is doing.  I'll also have to miss Brock's football game this week.  When I look back at everything that we've been through this past year, I can't help but think, "haven't we had enough??"  When does it become too much??  I think this might be it for me, I think I've reached my max... after this surgery, it's time for things to settle down for us, we deserve it.

Monday, August 29, 2011


Hey it's britt! Here are some pictures!
 Eating marshmallows

 The shirt I made abby.. i call her pudge so that explains the i be pudgin
 The front of her shirt :)
 Team captain!

 Friends at the game!

 Our dogs!!!

Saturday, August 27, 2011

How can this not be a miracle?????

This past weekend, I had a person ask me if I truly believe that what has happened to Abby the past 3 months is a miracle.  They said that if there can be 4 heart transplants in less than 2 months at one hospital, then what makes Abby's story be a miracle??  How can it be a miracle when it happens all the time??  All I had to do was to look back at some of the events of the past 3 months again......

First, let's just think about the timing of some of the things that have taken place:
-May 18th was one of a just a few days that year that I wasn't in school....thank goodness I wasn't there, that would have been a fiasco
-I had just signed Britt in for her surgery-they were just getting ready to take her back and put her under anesthesia when I got the call
-My classes had just finished all of their CRT testing the day before and I had already finished finalizing all of my grades
-My parents had their car packed for a trip to San Francisco and were just pulling out of the driveway to head to Vegas to catch their plane when they got the call to go to the emergency room
-Abby just happened to collapse and her heart stop beating in PE, as she was running right past her coach who had completed a CPR training a few months earlier. She could have collapsed anywhere at anytime and there wouldn't have been anyone around, this is such a miracle!!!
- I didn't have to worry about missing school, there was only one week left until summer vacation
-Abby got her heart July 12th, one month before Britt and Brock had to be back to St. George for school, they were able to spend time with her during that critical time.
-I have to be back to teaching the first part of November so I don't lose my insurance.  The date we were told we could probably move back if things keep looking good just happened to be......the first part of November.
-We found a place to stay in Salt Lake that just happened to be only 8 minutes away from PCMC, was vacant, was furnished, was only one story (Abby couldn't do stairs) and was right next door to the owner who was willing to help us out with what she charged for rent-thanks Shiela, you're a lifesaver!!
-We found someone that wanted to live in our house in St. George (thanks Vandermydes!!) and are willing just to stay until we are ready to move back.  They also offered to pay exactly what we were asked to pay in Salt lake, hmmmm.....coincidence??
-We could be back, living in our house in St.George only 5 months after abby collapsed-definitely ahead of my Christmas prediction!!
-The first weekend we were allowed to spend in St. George was the same weekend as Brock's season opener football game!
-Abby was up walking around only 2 days after her transplant and left the hospital after only 10 days!!!  4 weeks later she was able to walk a mile and kick the soccer ball again!
*****This one is my favorite-We got the call that there was a heart for Abby only 10 hours after Brittany and Brock got to Salt Lake after being in Hawaii for 10 days.

Here are some other things that I think are miracles too:

-2 of the officers that arrived at the scene and helped to save Abby told me that they were pretty certain she wasn't going to make it, it didn't look good.  But then, after 2 shocks, her heart finally started beating again-they both told me it was the most amazing thing they'd ever seen.
-Abby's heart that was 2 1/2 times the normal size, and so sick and damaged, sustained her for almost 12 years.
-There were 4 people at the school who knew how to do CPR and were ready to assist when needed.
-My sister-in-law has worked for Intermountain Organ Donation for many years and was able to help us understand many things we didn't know.
-I moved schools just last year, and that wasn't an easy I know why I needed to.
-I spent the school year forming close relationships with many people that became so important through all of this.  Every one of them played a vital part in all of this in different ways.
-We moved to St. George 6 years ago.  This is important...we've really needed the support we've gotten from our community, I know we wouldn't have gotten that support anywhere else.
-We just happen to have a lot of family and friends in Salt lake.  We definitely needed that support while we were there too! It would have been so much harder for me without having all of you there for us.
-I went through the temple just last September, it had only been 8 months.  This greatly influenced my understanding of the events that took place, I would have had a much harder time understanding and accepting what happened and is still happening.
-We have survived this and are still hanging in there today.  When I look back at some of the things we've been through in the last 3 months, I'm shocked that we are still standing strong. 

But the very greatest miracles to me are:

-Abby's experience that she talked about a little bit on the Mormon Times show on KSL.  There's much more to this story, and she'll be ready to share it with more people soon, right now it's just too sacred and personal.
-The decision that someone had to make to donate a heart of their loved one after they passed away. This decision saved Abby's life.
-The fact that Abby has another human beings heart beating inside her right now and that once it was placed in her body it just knew what to do.  It was created to know how to function on it's own.
-Abby.  Enough said.  Her attitude and determination and happiness through all of this is definitely a miracle.

You decide.  To me, each of these events are miracles, although some of them I also consider tender mercies from the Lord.  I look back at what's happened to us and I think, "how can this not be a miracle??" 

Wednesday, August 24, 2011

Just some random thoughts.....

Can you believe that we've been living in Salt Lake for a little over 3 months now....that's more than 1/4 of the year!!  To me, it feels like we've been here for much longer, it has been the longest, hardest 3 months of my life......but, we are getting closer to going home :)

I've always loved watching my kids play sports, and right now it's football season and I get to watch Brock play football.  He's always been so much fun to watch.... he's big, he's tough, and he's good.  I've never seen a kid love a sport like Brock loves football.  He's loved it since the first time he played when he was 7-years-old.  I don't think he's ever missed a football practice in his life, and I'm pretty sure he's the first one to get to practice and the games and the last one to leave every day!!  I am so grateful that Abby is doing well enough now that I will get to watch Brock play.  Once again, the timing was perfect.  The first weekend we were able to go home was the same weekend as Brock's 1st game......funny how things keep happening that way for us, how can you not believe that someone is taking care of us through all of this??

This is the first month, in I don't even know how many years, that I'm not going to earn a paycheck.  This is hard for me, it makes me question my worth right now.  I know I need to be doing other things right now, taking care of Abby is the most important thing I can be doing, but it still just doesn't feel right.  Especially now, I am so thankful for the fundraising that has taken place to help us through this time.  It makes me able to focus on other things, the more important things, until I can get back to work.

Abby is feeling so good, you would never know that she had a heart transplant only 6 weeks ago.  She's only on oxygen during the night now, woohoo!!!  We've been packing those tanks around for the last 3 months!  Every time we've left the house the past couple of days, we've felt like we're forgetting something, but I really don't think it will take too long to get used to it again, it makes things so much easier!  Hopefully, Abby will never have to hear me say, "Abby, have you checked your tank," or, "Is your tank ready??" ever again!!  And I really don't miss hearing the hum of the concentrator all day, it seems so peaceful!  She's also tapered off of many of her meds.  She's down from 6 extra strength Tums to only 2, and she's also on only half of her blood pressure meds, she's also down from 35 mg of predisone to only 10 mg/day; hopefully this means her puffy cheeks will start going down too!!   She only has to take meds 3 times a day now instead of 4.    We've been going on long walks every night, and we bought a new soccer ball yesterday, I think it's time to start kicking it around again.  I'm just shocked at how fast her recovery has been.  We still have a long way to go, this will never be easy, but it's getting better.  She wants to run so bad, but it's still going to be a couple of weeks.  They want to wait until her next cath and biopsy and then if things look good, they will her have do treadmill test.  Honestly, I'm in no rush for her to run again.  The thought of it freaks me out just a little bit since that's how this all began, but she thinks she's ready, so I guess I need to get ready too. 

This week we realized that we really don't have that many days left in Salt Lake!  If we are only here 4 days a week, and we move back in the middle of October, that's only about 30 more days here!  Rather than feeling like it's prison being here, we're going to try to do as many fun things as possible.  Yesterday we spent the day in Park City.  It was the first day that all of the kids were back in school, so we really felt like we were ditching!  It was awesome.  We've also been going getting caught up on movies.  We are going to try to do something fun every day .  Some of my plans are the Planetarium, the state capitol, This is the Place monument, the aquarium, the Natural History museum, and drive up the canyons.....maybe we can even go on walks there too.  If you have any other ideas, please let me know!  We have a lot of people to visit with here too, it will be sad when we do move back, it's been fun to see all of my Salt Lake friends and family!!  But, I do know that we will still be coming here often for Abby's appointments, so it's not like we are moving forever.  We will be frequent visitors to Salt Lake probably for the rest of our lives! 

Last weekend I was finally able to see the amazing donor book that Ann Bany made for Abby's donor is incredible.  Ann, I could tell how much time you spent on that and we don't even know how to  thank you.  You did an incredible job, you definitely have a talent!!  I also couldn't believe how many people signed it, thank you everyone!  If you haven't been able to write a note in the book to Abby's donor family and you'd like to, just let me know and we can arrange it.  It's still in St. George now, there were some people that still needed to sign it there, but I will bring it to Salt Lake next week.  Hopefully, I'll hear back from the donor family soon so that eventually, I'll be able to pass it on to them. 

Things are good, really good.  I'm looking forward to the day when we are back in our house with the kids and the dogs all there together, but I'm happy with being able to go home every weekend.....this will work for me.  I feel like I'm more able to keep the connection with Britt and Brock and keep in contact with our friends and family there.  But, I also know how important it is that Abby is still close to PCMC and her doctors here.  It seems like it's a perfect solution for everybody!  I pray every clinic visit that Abby continues to accept her heart and heal from the surgery so we can stick with this plan.  Thank you everyone for your continued thoughts and prayers, it's so obvious theya re working :)

Sunday, August 21, 2011

Our weekend in St. George.....a grateful list!!!

What a weekend!!!  I am feeling so much better about things, I think I really just needed to be in St. George with my kids for few days to feel rejuvinated!!  I'm going to recap the weekend by writing another "Grateful List," because that's how I'm feeling right now........just grateful.

I'm grateful........

That "home" is only 4 1/2  hours away from Primary Children's Hospital so that we were able to come here for the weekend!!

For the compassion, empathy, and understanding that people have for Abby and the rest of my family right now.  I could feel it so easily when I talked to some of you this weekend.  Thanks for caring about us, thanks for being excited to see us, thanks for crying when you talked to us, thanks for helping my kids when they need it, thanks for trying to understand what we've been going through, thanks for being a part of our last 3 months.

Swig-They have the best Diet Dr. Pepper.....ever!!  I love that place, and visited it daily while I was in St. George :)

The teachers and staff at mine and Abby's school.  Abby's teachers are going out of their way to get her homework to her, I know it's a pain-I'm a teacher too-but they've been awesome.  Thanks Ali for helping with that too!  We felt so welcome and loved when we stopped by this week to see everyone and get Abby's work.  I'm grateful they'll work with me and I know that when It's time for me to teach again, they'll be ready to help me in any way and they'll be ready for me.  I also know that when it's time for Abby to go back, they'll have a plan set in place to make it easier for her.  We love the teachers, staff, and kids at Sunrise Ridge and can't wait to get back there!!

The community of St. George.  I just can't believe the support we have here!  The fundraisers just keep coming, it's incredible.  I know we still have the Fargos car wash next weekend, the Kalamity dance concert next week, a Zumba event at Zumba Warehouse-date will be announced soon, and little league  games donated and in honor of Abby!!!   Plus all of the great things that have already been done, it's just unreal.  Thank you everyone!  I have to admit, it's a little surreal to drive down the Boulevard and see Abby's name on signs!    Then at the Desert Hills game Friday night, Abby got to be the honorary team captain and walk on the field with the other captains and coaches...How cool is that?  It was awesome to hear the crowd cheer when they announced her name, thank you!  Funniest thing this weekend was when we were sitting down eating breakfast Saturday morning and Abby said, "Hey, look, that's a picture of me on the front page of the Spectrum!"  We all just had to laugh!  We were treated like VIP's at the game, thank you Desert Hills High School!!

The TV show Hoarders.  I've become obsessed with it, maybe it makes me realize there are people out there crazier than me.

Brittany.  I know I don't have to worry about her getting into trouble when I'm in Salt Lake, I can always trust her to do the right thing.  With her knee being blown out this year and having to give up sports, plus all of this stuff with Abby, she's had a hard year and I'm grateful she's been able to keep it together and remember who she is.  She's also been so helpful getting Brock where he needs to be and helping to take care of him.  Britt-you are the best big sister ever.....don't ever forget it.

Being able to do "normal" things this week.  Going to the football game was the first really "normal" thing we've done since May 18th.  Brittany and Abby were there running around with their friends, I was sitting in the stands with my friends and family, and Brock was out on the field being a beast!!  I loved every second of it!  Brock played awesome too......nothing better than my sophomore son getting some major varsity playing time!  Way to go Brock, you deserved every second of that worked hard all summer!!  I also got to drive my kids around, do their laundry,  buy things they need for school, stay awake until they got home by their curfew, and just do "normal" for a few days.....It felt good.

Krista and that she's taking such good care of our dogs.  We got to go visit them on Saturday and thank goodness they remember us, I have to admit, I was a little worried they would have forgotten who we are, but they didn't, they were so excited to see all of us; But it was obvious that they feel very comfortable with the White's too, and that they are being treated just like their other dogs.  Thanks for being so good to them Krista, it was really hard for all of us to leave them again but it made it easier knowing that they are being loved.  Just remember, we are taking them back when we get to move back here :)

I'm still working really hard on trying to be grateful for this tremendous trial we've been going through, but I don't think I'm there quite yet.  I'm grateful for so many things that have happened because of the last 3 months, but I haven't gotten to the point that I'd say I wouldn't give it up if I had the choice.  I've heard so many heart people say that they wouldn't ever take back being able to go through the struggles of being a mom of a heart kid or of being a heart kid themselves........but I can't say that yet, I would love to go back to 4 months ago and to what we were doing and who we were then.   I'm hoping that a little bit farther down the road, I'll be able to look back and honestly say that I wouldn't change a thing!!

I'm so grateful for Abby's transplant team of doctors and nurses and that I know that after reading this post, they'll realize how much we need to come to St. George and that they'll give us the okay to come here every weekend until we can move back :)  Abby and I have some serious convincing to do at the cardiology clinic tomorrow morning!!  I just keep praying that Abby will continue to feel good so that we can get home as soon as possible!!

This is long, I know, but I have a lot to be grateful for so it's okay.  I've had lots of people tell me that they haven't been able to comment on the blog....but I think finally fixed it so that everyone can comment now, so please leave a comment!!! We love to see who's keeping up with us.  Thank you everyone, our weekend in St. George was sweet.  I only got to do about half of what I had planned and see only about half of the people I wanted to see, but hopefully we'll be here next weekend too!!!  

Wednesday, August 17, 2011

Words from Abby :)

Hey people. It's Abby! :) I'm coming home! Well, from Friday to Sunday.. ha. On Friday I'm hoping the doctors are going to let me go to the Desert Hills Varsity football game! This will be fun. Brock might get to play and some of my friends from school are going to be there! :) As for school.. ya. My mom is not letting me slack off. I have to read at least a half hour a day, do some Bridge summer book thing, and do all the assignments that my teachers send me... So don't think I'm just not doing any work :) We are going to go to the school on Friday to pick up some work.. after all the kids are gone though because my imnune system isn't strong enough. Which leads me to the doctors- 'Rules for St. George.'
1. No hugs.
2. LOTS of hand sanitizer.
3. Stay in a bubble.
4. Can't run.
5. Try to stay out of the sun.

These are the rules the doctors have given me for if I go to St. George.. Ya I know. Can't do that much haha. But I REALLY want to see my friends from school and just be HOME! If I can just wait one more day... :) and then.. on Monday.. If my cath looks good then the doctors said NO MORE OXYGEN and I GET TO START RUNNING!!! So this cath is like way way way way exciting to see the results for.. But the first time running they want me hooked up to the treadmil so that they can make sure everything looks good. But yesterday.. on our walk.. I kinda ran like by two cars :) like ten steps.. haha it felt great :) Well I got to go take my meds.. We are down to about 35 pills a day! And still tapering down :) Hopefully on my next Prednizone taper my puffy cheeks will start going away.. Brittany was not very nice about them.. haha bye. See you in St. George!! :D

Tuesday, August 16, 2011

Links to the Deseret News article and the story on Channel 5

Heres' a link to the Deseret News article that was in the paper today:

And a link to the story on Channel 5 last night:

I thought they were both excellent stories and they did a great job!  The kids were so cute, what an experience for us, in many ways we are extremely blessed.

Monday, August 15, 2011

Dash for Donation, 1st day of school...I wish, and channel 5 interview

We are now one step closer to going home for the weekend!!!  Abby's echo and clinic appointment today was right on target, everything is looking good.  Channel 5 showed up at the clinic today to do a story on Abby and the other 4 transplant kids, it will be showing tonight at 10:00.  One thing I found out today was that Abby was almost the first of the 4 of them to show up at PCMC, she's the only one that arrested first, but she was the last of the 4 to get her heart.  I just keep thinking how freaked out I would have been if I would have known there were 3 other kids, Abby's same height and weight, waiting for a heart that had to get their hearts first!  I would have been a mess.  As parents, we just kept saying how lucky we are that all of our kids got their hearts in time and are doing well now. I think it should be a good story, it's also supposed to be in the Deseret News sometime this week.  I will post a link when I have one.  Abby asked again today when she can run.  They told her next week, but they want to hook her up to an ekg and have her run on a treadmill in the clinic so they can test her a new heart first before she runs on her own.  I was glad to hear this.  I have to admit, I was feeling a little anxiety for when Abby ran for the first time again, I'm relieved it will be in the clinic with a doctor nearby.  I think I'll probably still be real nervous, but hopefully I'll relax as time goes on.  One more perfect clinic on Thursday and we'll be on our way to St. George for the weekend!!!

The  Dash for Donation on Saturday was fun.  It was so great to see all of the Team Doman shirts on so many people there.  Thanks to Whit, who was the team captain, and everyone else who showed up!  I think we had the biggest team there!  Even Abby's transplant team was there sporting Team Doman shirts, thanks Emilee and Michelle and Dr. Molina and everyone else!  What a great cause, without organ donation, Abby wouldn't be where she is today.  It made me think of our donor family again, I hope they are hanging in there through all of this, they are probably still struggling so much while we are doing so almost makes me feel a little guilty, just not an easy thing to think about.  I wish there was more I could do for them.

Today was the first day of school, it was also the first day of school that I have missed in so many years that I can't even remember how many.  It was sad, I really missed being there.  I love the first day of school.  I love seeing all the kids coming into my class scared and nervous, and leave laughing and feeling good about math and school.  Abby was sad today too.  We both just kept waiting for people to call and tell us all about it......we wanted to be there so bad!!!  We just have to keep remembering that we could still be sitting here waiting for a heart.  At least we know we are getting close to getting home!

If there is anyone in Salt Lake that still wants Team Doman shirts, please let me know before Thursday because that is when I'm taking them back to St. George.  Just call me and find a time to stop by.  If you're in St. George you can still buy them at Fargos or at Sunrise Ridge Intermediate School.  Also, Abby will be doing another news clip for channel 2, it's a promotion for organ donation, and it will be airing on Thursday, I'll let you know more when I hear. 

Now that school has started, Brock and Britt are in St. George all the time, it really stinks.  We miss them so much.  We just have to keep remembering that we are getting closer and closer to being a family again .  I hated not being there for their first day of school today, even if they are in high school, I still should have been there, I even miss being able to sign all of their disclosure statements....crazy huh?   I was reading back through the blog and came across the post where I wrote that if this had to happen to someone, it's a good thing it happenend to us because I know that we are strong enough to deal with it.  It was good for me to see that, because I've started doubting if we are strong enough, it seems like it's just beating us down; But we can do this, we can make it, we just have to continue to hang in there and start seeing the light at the end of the tunnel. 

Saturday, August 13, 2011

Dash For Donation Pics

Hey it's Britt! Here are some pics from the dash for donation race today.
 Lesley and her girls.. thanks for all you have done for us!
 Being crazy at Clinic!
 Our tent
 Abbs and my mom!

The transplant team!
Everybody supporting team doman!! :)

Friday, August 12, 2011

Good news at clinic & St. George was fun.....but not easy!!

Another perfect clinic day for Abby today, only 2 more to go before we are given the definite okay to head to St. George for a few days.  I even got the nerve to ask the transplant team if we could start going to St. George every weekend from now on!!!  At first they all laughed at me, but then I started convincing them, and I think I had all but one of them ready to let us go.  The one I still need to convince wasn't even there, so I'll have to work on her next week!  This really does all depend on how Abby is feeling, I do know that it could change on any day.  We ran into my new friend Shauntelle and her heart transplant daughter Kaidence at clinic today.  They were signed up to go to heart camp today, but because of some problems Kaidence is having, they have to miss.  I felt bad for them, it just doesn't seem fair, it seems like they have had way over their share of problems!!! Hang in there Shauntelle, I loved talking to you today.  Two things that I've learned from all this are:  Trials are not distributed evenly, and I shouldn't expect them to be and don't plan anything when you have a heart kid because things can change at any given time.  But, I still have to believe that Abby and I will be in St. George next week...we will be staying at my parents since we have people staying in our house, but we will still be in St. George.  The other good news from the transplant team was that we can go to movies and shopping and restaurants as long as it's not peak time.  So, to celebrate today, Abby, Britt, and her friend Maddie, and I went to a movie, Glee in Concert (not my choice of movie, but at least I got my movie nap in!!) and shopping at Gateway.  It felt good to get out and do something with Abby, it has been a long time!!!

I spent the last 2 days in St. George, which was probably good because I had a cold the whole time I was there!  Better in St. George than here with Abby!   It felt good to be there and do some normal things. I even got to take Britt and Brock and get their school schedules figured out and take them out to lunch, and I spent a little time at the pool.  I also got to do some much needed things like go to the temple with my friends and spend lots of time with lots of different people.  But then I also had to do some hard things.  I tried to go to a meeting for school the first day I was there, but I found that I'm a little distracted, I couldn't focus very well and just felt like I should be somewhere else the whole time I was there.  I also had to say goodbye to Brock and my friends......again!!! That's really getting old, in fact, I'm getting really sick of it.  But the hardest thing I had to do was go back in the school again, my school, the school where Abby collapsed.  I didn't know that this was going to be so hard, but it was, I almost couldn't go through the doors.  Once I forced myself to go in, I became so curious.  For some reason, I just had to know how it happened.  I wanted to know everything that happened that day.  So my friends that saved Abby's life and were most closely associated with that day, took me down to the gym where it happened and walked me through their perspective of the morning of May 18th.  I wanted to know every detail, what was said, where she was, where the other kids were, when and how did she start breathing again, what they were thinking, what the paramedics did, how much time did they each do CPR, how long was she in the ambulance, what happened when she started to breathe, who was doing what and when.....I had to know everything.  Thank you so much Cammeron, Des, Sandy, Ali, and Cozz for walking me through that day.  I know this was hard for all of us to go through, and I'm so thankful you took the time to go through it with me, because it helped me realize something big.  I needed to know what happened because I WASN'T there when it happened, and I feet like I should have been there.  Deep down I know that even if I would have been there it still would have happened, but I still feel like I should have been there for Abby.  Maybe by knowing what it was like, how everything took place, it makes me feel more like I was there, even though I wasn't.  This something I'm just going to have to work through, but at least now I realize that I'm carrying that guilt.  Irrational guilt, I know, but guilt nonetheless.  So as great as it was to go to St. George, it wasn't easy.  I definitely realized that I have some things to work through before I'm ready to go back to school, my mind isn't quite there yet, good thing I have a couple of months to emotionally heal a little bit first.  Abby on the other hand is more than ready and wishes she could be there on Monday.  She begged for her schedule, even though she has to miss the first term, and she's ready to start getting her work done.  Her teachers will be putting her work together for her to do at home, and I will be helping her when she needs help.  Hopefully, she'll be able to keep up....knowing Abby, I'm really not worried about that. 

I'm so glad we get to have Britt here with us this weekend, Abby loves having her here!  I know they'll spend lots of quality time together before Britt has to go back on Sunday so she can head back to school on Monday.  I miss Brock, a lot, and Abby does too.  The good news is that I know we're getting closer to living in St. George each day.....and Abby is still training for her 5k!!!

Wednesday, August 10, 2011

Abby is looking good...... St. George next week??? I think so!!!

Wow, it's been a while since I've been blogged......but that's a good thing, because that means everything is going really well right now.  Thanks to Ali and Cozz for filling in for me and giving all of you a different perspective at what happens at the Doman house.  I have to admit, I was a little nervous about what was being took a lot of trust to let them take over, but they did an excellent job and didn't put any of the embarrassing stuff in!  Thanks Ali and Cozz, we loved having you there with us all weekend and thanks for helping me do some of those things I wasn't able to face by myself, I needed your help.

 Abby's biopsy on Tuesday came back 100%, no problems.  Her levels looked good in her cath, and she feels like a million bucks.  She's still battling pulmonary hypertension a little bit, which means we still lug around an oxygen tank everywhere we go, but that's improving now too.  One other thing is that there's a little sag in her EKG that they're watching closely now, if it doesn't get better next week they'll do a more invasive cath where they measure the levels in her coronary arteries as well as the heart.  They need to find out what is causing the extra strain in her heart.  They're not too worried, just monitoring it closely.  We're not looking forward to this, so we're just hoping it looks better on Monday.  The good news, in fact, the best news, is that....with a little begging and pleading on my part, they are thinking about letting both Abby and I go home next weekend!!!!  We will only get to be here for a few days, and Abby has stay pretty isolated-not a lot of people yet, but I'll be able to go watch Brock's opening football game and Abby will be able to be in St. George for the first time since May 18th!!  We are both very excited and praying every day that Abby continues to feel good.

I also need to get home to see Britt and Brock.  Living apart is the worst, I'm not handling it very well.  It just seems like we're getting more and more distant.......we just have to get back in our house in St. George, soon!!   Now that school is starting, Britt and Brock will be in St. George all the time, unless they can sneak a weekend up to Salt Lake, but Brock plays football every Thursday and Friday night, so that can't happen.  My ultimate goal, which I haven't explained to the transplant team yet, is for Abby and I to be in Salt lake on Sunday night through Thursday after clinic, then traveling to St. George for Thursday night through Sunday morning.  I want to do this every weekend.  I know it's a lot of driving, but it has to happen for my family to stay strong and functioning.  For now, I've just asked the doctors for next weekend, but when they hear how well it goes, I'll ask for every weekend until we can just move home!!!  All of this is just on a day-to-day basis though, if Abby gets sick we could end up at PCMC again, so we can't look too far in the future.  But, here's what I think is going to happen anyway....this is not based on anything medical, just my optimistic predictions:  Starting next Thursday we will be home on the weekends from Thursday night until Sunday morning, this will last until the end of September.  Then, the first part of October, they will let us move back to St. George, but we will have to travel to Salt Lake a few times a month.  I will start back to work on November 1st, so my insurance doesn't lapse and Abby will start back to school on November 7th, the beginning of the 2nd term. I personally think that sounds like an awesome plan, the Doman family will be back in St. George, in their house, as a family the first of October.  Okay, that might be pushing things a little, but it's still my plan, and it could happen.

Abby feels so good right now.  Her new plan is to run a 5K in May, which is the month this all started.  She's already started training.  She can't run for 2 more weeks, so we just go walking around the block.  Her heart and lungs feel great.......but her legs get tired.  I think she's pretty weak from everything that's happened the last 3 months.  I love her goal, and I know she's determined enough to do it.  We're thinking about having a 5K race in St. George on May 19th and call it The Doman Dash.  All of you will have to come and wear your Team Doman shirts and run for and with Abby.  I think it sounds sweet, I can't wait.  Mark it on your calendars now and start training for Abby!!!

Thanks for your continued love, support, and prayers.  I spent the today and some of yesterday in St. George and it feels good to be home.  It's hard to drive by the hospital and the school where some of the worst of all of this took place, but hopefully that will get easier.  It's fun, yet overwhelming to see everybody.  We're not used to being "famous," it's very different for the whole family.  Just be aware that we've had a rough couple of months and all of us are a little broken from it, but hopefully we're beginning the healing now.  It's hard on all of us to live apart, we're all struggling from that too.  We're trying to keep it together and stay strong, but sometimes it's hard and we just can't do don't be surprised if you see us in one of our weak moments, please try to be understanding.      If you didn't see Abby on the Mormon Times, you need to, it was an awesome story.  I know that someday soon Abby will be ready to tell even more about what happened that day, May 18th, when she chose to "come back to save lives."  The link is above, please take the time to watch, it you didn't believe before you watched, you will after.  Thank you everyone for reading the blog and for taking the time to tell me how our story has changed your life, I love that.  I might not be posting everyday now, but I will keep you posted, we still have a long road ahead of us.

Sunday, August 7, 2011

The link to Abby's story this morning on Mormon Times

Here's the link to Abby's story today on Mormon Times.  I hope it touched you in some way, once again, I must say that I think Abby is amazing.

Pictures from the warrior weekend :)

It's Britt! Here are some pics from the unforgettable weekend with ali and cozz :)
 Party rockers
 Famous grilled PB & J
 Up the canyon :)

 Abby's new talent
 We got bored at clinic
 Abby's FAVORITE treat ever!

 The emus
 The Zebra
 Cozz rocking the guitar!
 Brock's first coloring picture
 Little C!!
 Singing karoake.. they weren't very good.
 My beautiful rug haha
 Farkel party!
 Fruit. Snack. War.
 Brock's beautiful wall of art

The Weekend Warriors! Ali & Cozz

Highlights of the Weekend.... by Ali & Cozzens:  We  are happy to report on a fun filled weekend with the Doman family.  It's is non-stop fun and craziness when we all get together.  What an amazing family!  Thanks for letting us 'step into' the Doman family for a bit of time....

Pizza Night... The Pi   Thursday night arrivial and the kids are "starving" Abby wanted pizza and since we are so close to the University of Utah the obvious choice was pizza from The Pi... It was a hit of course!  Abby loved it (ate it for breakfast too the next day) and Brock did too, the 2 biggest critics of our food choices.

Girls Night at the Movie (Brittany, Michelle, Cozzens, and Ali )  we headed to a movie after we all chowed on some really good pizza.  Michelle needed a break from life and a "chick flick" was the a good idea.  We laughed through 'Crazy Stupid Love' and Michelle slept through some of it too.  I guess that must be normal for someone so tired.  Brock was the best to stay home with two 12 year olds...when we walked through the door the 3 of them were playing an intense game of  monopoly and Brock had clearly showed them how to eat snacks while playing.  It was hard to see the game through all the crumbs, wrappers and junk food.
Famous Grilled PB & J  Cheryl Cozzens shared her famous recipe of "grilled heaven in a pan"  We all sat around and waited while Cozzens sang and danced in the kitchen working her mad cooking skills.  They were such a huge hit.  Poor Cozzens had to stand at the stove while we all requested another one. 

Fruit Snack Fight  It all started with verbal attacks on Cozzens.  We were teasing her pretty bad when she just "snapped"!  She stood up and reached for the closest thing.. the cupboard with all the snacks..she just grabbed and started throwing stuff so hard and screaming.  It was an all out war..... fruit snacks were being launched back and forth everywhere.  There were fruit snacks all over the kitchen... Brock was in the middle and he was being hit by crossfire.  Abby was the meanest and was aiming for everyone's face... all of us took several hits and also had a great laugh.  It was fun to have a food fight and the cleanup not so bad!

Games at the Park  So...we all had to get out of the blue room...Sugarhouse Park...lots of snacks and an armful of games.  As the blanket hit the grass and, most importantly, the snacks were out...Brock and Mom had to throw shoes down the hill.  Guess who finally went to get them??? Yes..Abby.  So what that she just had a heart transplant.  We enjoyed people watching, game playing, and the most delish Shaved Ice.  Good times!

Cafe Rio Picnic in the Backyard The best picnic ever....Good thing it was after Brock tooted in front of the guests.  We ordered our favs from Cafe Rio and headed into the backyard "oasis garden of good times".  We had good food, good company, and a few bug bites, too.
Drive in Movie  wow what a great night and a late night.  The movie started at 11:35pm.  Abby and Michelle had not seen Harry Potter 7 we planned the big night.  It was LONG and eventful.  We had the Cozzens truck and the Doman van parked side by side... At the best part of the movie the truck's sound went out...Cozzens looked a little panicked and we soon discovered the truck battery had died.  So after the movie was over we had to deal with "jumping" the truck.  Good times were had by all.

Brock's Art Projects  Brock has never been one to sit still and color.  For some reason, this weekend he fell in love with coloring.  Brock and the markers were like one..... maybe it was the markers and the smell now that I think about it.  He was so proud of his 4 giant pictures he even put them on the wall.  He named all his pictures "the beast"  and sta rted the Art Mural.

Britt's Latch Hook Rug  Brittany has spent an entire week "bonding" with Abby over crafts.  She has completed her first (but not last) latch hook rug.  It has been fun watching her do it.   Abby sang & enjoyed the Justin Beiber movie and all the High School Musical Movies while she was working her magic.

Abby's Cleaning Meltdown  Abby may have raised her voice a little tiny bit Saturday afternoon.  She walked through the house and surveyed the area as she went.  There was a lot of "stuff" everywhere.  Her frenzy began with screaming statements like,  Clean up the markers they are everywhere.... Bittany and Brock are so messy... they just left all their stuff everywhere... I am so sick of it.. I am so mad...       All of us just stopped and stared at Abby as she shut down at the kitchen table with her ipad.   Brittany went into hugh speed clean up mode...while she was also screaming back... Abby is so rude and is such a brat...   It was quite funny to watch the siblings at their finest moments.   It was awesome!

Getaway to the Heber Valley  Have you ever tried to squeeze 7 people in one car for a road trip?  We did it... and it was a tight fit and good times.... We traveled from Sugarhouse to Heber for a dutch oven dinner put on by Ali's parents.  Abby and the family needed a change of scenery and the Thacker family backyard was a great place to go....  a game of "don't let the ball touch the ground game" got a little wild when Michelle launched  the beach ball into the nearby canal.... after dinner we roasted marshmallows and watched moon flowers open up (a flower the blossoms after sunset)...  played some fun games and listend to good music on the back deck... the drive home was loud with everyone singing show tunes.... Phantom of the Opera, Wicked, Lion King, etc.... a fun trip to the Heber Valley a nice change of pace!

Sunday Morning TV Debut   It was a special morning to be here and watch Abby's story on Mormon Times.  It's hard to even put into words what was felt while we sat with Abby today.  What a special girl... and a special family...  Blessings and miracles all around. 

Thanks for a fun weekend and for letting us Blog our perspective!  Ali and Cozz

Saturday, August 6, 2011

Abby will be on Mormon Times-tomorrow, channel 5, 10:00am

Just a reminder that Abby will be on Mormon Times tomorrow, channel 5, at 10:00 am.  I think it's going to be a great story!  I can't wait to see it.

Top 6 on the 6th by Ali & Cozz

This is Ali & Cozzens:
We thought it was time to share a few things from our perspective... so today since it is the 6th of August we will list it in a "Top 6 List"...

Top 6 statements Michelle says throughout the day:
6.   What should we do today?
5.   Abby how are you feeling? Are you tired?
4.   I just want them to call with the results (this is said over and over on "Cath days")
3.   Abby did you take your meds?
2.   I am fine
1.   Abby did you take your meds? (Abby turns her head and rolls her eyes)

Top 6 places the Doman's go:
6.  Milcreek Canyon for a change of scenery
5.  Drive-In Movie
4.  Sugarhouse Park under a shade tree
3.  Drive around after a stop for Shave Ice or Jamba Juice
2.  Subway drive-up
1.  Primary Children's for testing etc.

Top 6 games played around the house:
6.   Uno (at this house its called "Uno Schmuno")
5.   Nertz (Ipad)
4.   Old Maid (Brock's favorite)
3.   Guitar Hero
2.   Farkel
1.   Monopoly

Top 6 things Abby says throughout the day:
6.   I am hungry
5.   Look how cool my scar is
4.   Can I go for a run... when can I run
3.   Stop it Brock... you're so mean to me
2.   Can we go to ________?  (Jamba Juice, Subway, Olive Garden)
1.   Mom, Chill

Top 6 things she loves or says to Brock:
6.  Where is my phone charger?
5.  Brock you're so mean.
4.  Stop singing... ( he isn't that good)
3.  I love that he can make me laugh
2.  I love that he always takes his vitals when I take mine
1.  I love that he is on my side to convice my mom we need more food or to go eat more

Top 6 things she loves or says about Britt:
6.  You're a bad nurse...haha still
5.  I love it when she does my hair
4.  Let's go get a Jamba
3.  I love that she always takes care of me
2.  I love that she drives me places when we need a break from mom
1.  I love that she is the oxygen police..carries it for me, gets it ready etc...

Tuesday, August 2, 2011

Another great biopsy result and a list of "somthings"

Word from the doctors today......everything is looking good!!! That's right, cath levels improving, no change in echo, nothing funny from the holter monitoring last week, blood pressure holding steady, good looking ekg, pulmonary hypertension improving, and of rejection!!!  It feels good to hear those results!  The only bummer news is that we have to go through it all again next week.  After next week, we'll go to every other week for a while.  So, one more week, then we'll get a week off.

I've had some questions about what happens on the day of the cath and the biopsy, so I'll do some explaining.  An anesthesiologist uses a breathing tube while the surgery is performed.  The cardiologist then inserts a long, flexible tube into a vein in Abby's neck.  The catheter is threaded to the heart and major blood vessels of the lung.    It measures blood pressure and takes pictures of blood vessels and the chambers of the heart.  Then they insert another little tool that removes small pieces of muscle from the inner surfaces of the heart.  Thjs is the biopsy and tells whether Abby is in rejection or not.  The actual surgery only takes about 1 hour, but from the time we check in until she can leave the recovery room is about 3 1/2 hours.  For most people this would probably seem like a pretty big deal, but we're getting used to it's pretty minor considering what we've been through.  Abby doesn't worry about it at all, no stress for her, which is good.  She does have to have another IV and blood drawn, which means another poke and another bruise.  Her poor arms will never stop being black and blue. 

Here are some things that have happened the past few days:

Something funny-Britt and I were waiting for Abby in the car.  We watched her walk out the front door and then she ran to the car....RAN to the car.  Oops, I don't think she's ready for that yet.  I think she forgot for just a minute that she had a heart transplant only 3 weeks ago!  You should have seen the look on her face when she realized what she had done.  It was something I'll never forget; but I have to admit, it sure did feel good to see her running again.

Something interesting- They got the biopsy results back from Abby's old heart.  Instead of restrictive hypertrophic cardiomyopathy, they're now calling it hypertrophic restrictive cardiomyopathy.  The reason that this matters is because now they want to do some more genetic testing on the heart.  We might be able to find out a little more about what caused this.  We also might find out if my kids or their kids (eventually) will have to be screened.  They sent the results of today, we should hear more in about 6 weeks.

Something scary-Because of the results, I finally decided that I better get my echocardiogram.  I have been putting it off since May 19th.  I kept saying it was because we were too busy and in and out of the hospital so much, but honestly, it's because I was too chicken.  I don't ever go to the doctor for anything, and this whole heart thing with Abby has made me a little uneasy.  I feel like my heart is fine, I've never had any problems, but I'm still nervous.  So, I scheduled an appointment at the University of Utah Hospital and I will be getting my echo on Thursday morning.  I know the echo won't hurt or anything, Abby says they're completely relaxing, I just worry about the results.  I will feel a lot of relief when Thursday is over.

Something that cracked us up-We found a song that we want to dedicate to Abby's surgeon, Dr. Kaza.  If any of you have heard the song "Jar of Hearts" by Christina Perry, it has some lyrics that are very fitting.  It says, "Who do you think you are?? running round leaving scars, collecting your jar of hearts......"  Wow, sometimes we think we are so funny.  I wonder if Dr. K will think we're even half as funny as think we are.

Something that was hard for me to do-I just finished writing my letter to the donor family.  I've been thinking about it for about 2 months now, and I thought I knew what to say, but actually writing it was very difficult.  It was hard because I couldn't be specific at all, I didn't know if I was writing to a parent or a spouse, and there's no way to express gratitude for the gift of life.  It was difficult to put into words how thankful I really was.  I did write a letter that I thought was okay, and hopefully they'll want to respond so we can get a little more information on the donor, it's hard not to be curious.

Something that amazes us-We can't believe all of the people that are supporting us by buying and wearing Team Doman shirts. It's awesome, we just love it.  If you still want one you can get one in St. George at Fargos.  They will also be sold at Sunrise Ridge when school starts. If you're in Salt Lake you can contact me.  They will also be sold at the Dash for Donation a week from Saturday at Sugarhouse Park and at the music festival that will be at Daybreak on Sept. 24th.  Thank you Jeff Fargo for selling the shirts and supporting us so much!  Thanks to Deedee, Whit, and Lesley for helping with shirts too!  Thanks to Robb and Melissa for planning the music festival....we can't wait.

Something I loved this week-When my friend Whit invited us over for Sunday dinner!  Not only did we have an amazing barbecue, but we got to visit her neighbor's assortment of animals (emus, a goat, turtles, yorkie dogs, chickens, and a zebra...that's right, a zebra!) and we played an sweet game of nertz!    Thanks Whit, the change of scenery was much needed and we had a blast!  Thanks for the freezer dinners you made us too, that was a perfect way to help us.  You too Meri, the dinners were perfect, thanks! 

Something I always want to do-Whit also bought and gave us a wall sign, that I just loved, I think it was perfect.  It says, "There are only two ways to live your life.  One is as though nothing is a miracle.  The other is as though everything is a miracle."  I hope I can always live my life as though it were full of miracles!!!