Tuesday, December 31, 2013

Reflections and Predictions

2013.....One thing I can say is that it was definitely easier than 2011 and 2012!  Things settled down for us a little bit this last year and we were able to start finding our new "normal."  That doesn't mean that we are normal in any way, we're definitely not, but we've found a place that can seem normal, for right now anyway.

Things I learned in 2013:

Sometimes when you think you have a new boy puppy named Milo, you really have a new girl puppy named Marli.

There's nothing sweeter than seeing one of your kids succeed at something they've worked so hard at and care so much about.  Watching Brock's reaction to winning the state championship was something I'll never forget.  Pure joy.

Sometimes, when you've taken on too much, it's okay to say no or to give something up.  I had to do this recently and it wasn't easy.  I was feeling too overloaded and like I was drowning, something had to go.   I backed out of something I was supposed to do.  I felt guilty for a long time, but I know it needed to be done, it was the right choice.  I'm okay with it now, I think that sometimes you need to say enough is enough.

People are weird.  Okay, I already knew this, but I relearned it this past year.  Some of the people that were the most involved and concerned with Abby during her transplant, are the same people that now never ask me about how she's doing, her name is rarely brought up; But some of the people that stayed in the background when things were crazy are now the ones that are the most concerned with her and continue to ask about her and how she's feeling.  It's strange.  This isn't true for everybody, just a few.  I  haven't been able to figure it out yet.  I don't think it's because they don't care or don't want to know,  but I'm not sure why.  Like I said, people are weird.

Never count on anything.  A month ago, we were pretty sure that Brock was going to be playing football on a scholarship at SUU next year.  The coaches had even asked him if there was anyway he could graduate early and come up to play spring ball with them.  But, a couple of weeks ago, 3 of the coaches, including the one that had been recruiting Brock, left SUU and went to Weber.  Now things are up in the air again.  We'll just have to wait and see how things play out.  I think that signing day is the first week in February.  It will be so nice to have things settled and not worry about it.  We are lucky though, if nothing else works out, Brock can always play at Dixie State, they've been interested in him and in contact with him for a long time.  I'm sure that things will work out just as they should.

You can't lose weight with just good intentions, dang it.  I wanted to get back in shape and work hard, I wanted to really badly, but it didn't happen.  I guess I have to act on those good intentions.

Abby and holidays don't mix.  She was sick on Christmas this year too.  For some reason, Abby is always sick on holidays.  It breaks my heart, it really stinks.

I love it when my family is all home and together at the same time.  I know these days are numbered, my kids are getting old and are going to be doing other things soon, but for now I'll just enjoy it as much as possible.

There's no better, more peaceful and relaxing place, then the beach in Hawaii.  I love it there, it's heaven for me.  I wish I could live there.

It's really hard not to properly be able to say thank you for a gift.  Especially a gift that saved the life of your child.  We hope and pray that someday, we'll be able to meet Abby's donor family to let them know how grateful for we are for the decision that they made back on July 12th, 2011.  Without them deciding to donate their loved one's heart, Abby might not be with us today.  I just want to thank them in person.  Maybe it will happen this year.

Probably the most important thing that I learned in 2013 is that I can survive anything and come out okay.  We had 2 really hard years, really hard and I'm still here and I'm doing well. It didn't beat me, in fact, I'm better for what we went through.  I'm stronger than I thought.

Shell's 2014 Predictions (I'm sure that some of them will be way off, but I'm going to try anyway):

Britt will apply to and get into nursing school at Dixie State.  She'll be applying soon, keep your fingers crossed for her, she deserves it.

Brock will be playing football at SUU on a full-ride scholarship.

Abby will be a sophomore at Desert Hills and will pass the driving test and get her learner's permit in May.  Scary, I know.

I will get in shape and lose weight.  I'll get back on my bike and back in the pool.  This is the year that I have time to take care of myself again.

Abby will have a hospital stay.  I'm not being negative, I've just been feeling it.  Hopefully, this is the one that I'm wrong about!

I'll still be in medical debt!  Ha!  I can predict this for a long time :)

We will have trials, I don't expect things to be easy, but we'll be okay next December 31st too.

There you go, my predictions.  I actually am not a real fan of New Year's.  It just means that the gym is going to be crowded for a couple weeks, but it is a good time to reflect and refocus.  I know that most people look forward to adventure and excitement, but I'm looking forward to peace and normalcy, that's what I'm hoping that our new year brings.  I've heard people say that for the new year they choose one word to focus on and to live by, a one-word resolution.  My word for 2014 is contentment.  "The acknowledgement and satisfaction of reaching capacity,"  "A source of satisfaction," "ease of mind." I want to be content with where we are today and where I am at the end of this year.  I want to be content with the decisions that I'm making.  I want to have a life full of contentment in 2014.  What's your one-word resolution?

Saturday, November 23, 2013

Crappy Halloween, clinic, changes in meds, and a championship!!!

     My last post was on October 14th, since then, we've had lots of ups and downs around here!  I can't believe that I didn't even post about Abby's clinic either, but I've been busy just trying to keep up.

Things started out great in October, and then, in a typical Abby and October manner,  she got sick, really sick.  She was feeling awful.  So crappy that we ended up calling the transplant team and getting her in to see our pediatrician.  Abby wouldn't eat or drink anything and she was feeling so tired, she was sleeping all day long.  She ended up going in to the hospital twice to get fluids and lab draws to find out what was wrong.  The first time was a fiasco!  The nurse tried 4 times to get blood and didn't have any luck, so she had to call up backup to help her.  It wouldn't have been so bad, but Abby also had a serious migraine at the time.  The one funny thing that happened, was that after about 45 minutes of the nurse poking and searching for blood and Abby crying, Britt called to talk to Abby to try to make her feel better.  Abby was too upset to even talk to her, so Britt said to put her on speaker phone.  Then she said, out loud so everyone in the room could hear her, including the nurse, "Abby, just because you have an idiot nurse, doesn't mean you have to be a butthole!"  Yep, out loud for everyone to hear, it was awesome.  I hurried and turned the phone off speakerphone.  I got a good laugh out of it, Abby not so much, and I think that Britt was just embarrassed...and the nurse didn't know what to say!  A few days later it was back for more fluids, this time we tried the ER and we had a lot more luck.  The bad thing was that it was on Halloween....Abby's 3rd year in a row being in the hospital on Halloween.  What a bummer!  Thankfully the labs all came back negative and after almost 2 weeks Abby started feeling better.  I guess it was just a nasty virus and she has been feeling better since then.

Right after Abby got feeling better, she had clinic.  We went 10 weeks without a clinic visit!  The transplant team told us that her heart, as well as everything else, looked perfect and that we wouldn't have to go back for another 3 months, that was good news!  We made it into a fun weekend while we were there.  We celebrated by going shopping and out to lunch with Abby's transplant friend Miabella and her mom. It's always fun to see our friends from up north!  Then we got to watch Brock win his quarterfinal football game, and I was able to spend some much needed, quality time with some good friends as well.  All in all it was a good weekend.
But, to keep us on our toes, about a week and a half ago, Abby started getting the swelling and redness that's usually in her legs and feet, in her arms too.  One day, it was even in her cheeks.  This is something that has been hard for Abby since transplant.  Sometimes we think that it's something that she can just live with if necessary, but then it flares up and we think that we need to figure out what's causing it, this was one of those times.  We heard from some other transplant recipients that it could possible be from one of her blood pressure medications, so I called the transplant team to see if we could make some changes to see if we could finally get to the bottom of this.  They have always been extremely reluctant to make any changes to Abby's meds because every time they've made a change, it throws everything off.  But after talking to the doctors, they came up with a plan, this was just last Wednesday.  The plan was for one week, to lower her dose of Amlodopine, which regulates her blood pressure, but also helps with her pulmonary hypertension, that's why they didn't want to take her completely off of it.  We have been tracking her blood pressure, morning and night during this time to make sure that it doesn't raise too much.  They really didn't think that this would help her swelling, but it was worth a try.  The funny thing is that since Wednesday, her swelling has actually been worse, not better!  She had to leave school early on Thursday, and she had major problems yesterday after our drive up north too.  I'm supposed to call again on Wednesday and let them know how things go.  If we don't see an improvement, we're going to be referred to a vascular specialist to see if that's where the problem is.  If they can't figure out, we're going to keep searching.  Something is causing this, and for some reason it seems to be getting worse.  I don't think it's something that Abby can just live with anymore.  We've got to figure it out and do whatever is necessary to fix it.  Thankfully her blood pressure has remained steady even going half off of one of her meds.  I just feel good that we are finally trying to do something about it!  I will keep you posted, but I have a feeling we'll be making a trip up north this month to see another group of doctors.

.......and now to the "up" part of our past month.  We've spent the last 3 weeks traveling up north every weekend to watch Brock and the Thunder play football!  They just kept winning, and last night they won the state championship!  I've never seen Brock happier than he was last night after the game.  He couldn't stop smiling and crying and yelling and hugging everyone, it was just too awesome.  I know that many of you have already seen the pictures and read the Facebook posts, but I have to put it in our blog too for when I print up our blog book again.  It's our family record of what's going on.  The game last night came down to the last second.  It was the perfect ending to a sweet high school career.
Brock had an incredible season this year, he played really well.  Brock loves football, he loves to work hard, and he loves the game.  He's been very blessed to play for Desert Hills, he's played at Rice Eccles each year since he was a sophomore, finally, this year, they took home the trophy.  The senior class that he plays with is full of talent and good kids as well.  The coaches are amazing.  They've always been good to Brock both on and off the field.  I've always been grateful for the coaches in Brock's life because his dad doesn't want to be a part of his life.  It's good for him to have some positive role models to look up too.  Brock is also lucky because he has the shape and size of a football player, but he also has the desire and motivation, he knows how to work.  It isn't official yet, but there's a pretty good chance that he'll be playing football for SUU next year, we'll just have to see how things play out from here.
Brock and Coach Franke, I love how happy they both look!

Britt.....nice earmuffs!

The captains heading out for the coin toss.

Brock and some of the greatest kids ever!  It will be hard to see all of these boys head their separate ways after this year, I hope they'll remain friends forever.

This is the crew at the semi-final game, it was much colder at the championship.

Abby and  Britt with their Thunder gear and ready to go!

The Game!

Brock after the semi-final game, already looking forward to the state championship.

Crazy, but proud mom at the game!!!  I will truly miss watching Brock play high school football, I think I love it as much as he does!

It's been quite the month at my house.  I always think that things will settle down, but I'm starting to realize that they never will.  I feel stretched pretty thin most of the time, but mostly I'm just so thankful for where we are today.  I've been blessed with the greatest kids, they're amazing in every way, what more could I ask for??  I'm the luckiest and most blessed mom ever!

Monday, October 14, 2013

Doman update!

I can't believe it's almost 2 months since my last post!  Either I'm slacking, or I just don't have too much say, or maybe a little of both.  This will be a catch up post, I really don't have too many updates.  But, to start with, here's some humor.  We've been looking at some old pictures and slides and movies at my parent's house, and we came across a few old family favorites.
I had to wear this on my head after my mom put my pink, foam curlers in my hair.

Pretty cute, I know. 
I love my brother's leather vests.  We always joke that they were made out of old couches.
I don't know what my mom was thinking.  Nice Polygamous dresses on me and Meri, and my brother's collars are so stylish.

 And now for the more current news.........

Britt-I don't have any pics of Britt, and not a whole lot of new stuff to talk about either.  Nursing school applications start after this trimester.  We're hoping and praying that she's accepted to Dixie State's nursing school.  She's done everything that she can, so it should happen.  Lots of school and night shifts as a CNA is what Britt is up to.

Brock-Football, football, and more football.  The Thunder has lost their last 2 games, but will rebound this week against Snow Canyon on Wednesday.  Brock has been playing really well and gets emails, texts, facebook messages, and postcards for schools all around the US.  But, we'll see what scholarship offers he gets after the season ends.  I can't believe it will all be over in about one month.  They only have 2 more regular season games, and then it's playoff time.
We did have a big scare last month with Brock at the West High game.  A player on West did a total cheap shot at Brock's leg during a play at the end of the game.  Brock heard a loud popping noise and couldn't walk on his leg at all.  He was carried off the field.  When I saw that happening, I knew it was serious, Brock has never been hurt so much that he missed any playing time.  After being checked out on the sidelines, we thought Brock had torn his ACL and would be missing the rest of the season.  He was devastated.  I was so impressed with the outpouring of love and support that we got, not only from the players on the team but the parents and our friends as well.  I think that everyone was thinking, "are you kidding me?  this cannot happen to the Doman's, they've had their share!"  The boys on team were especially amazing.  I could truly see the love they had for Brock, not only as a player, but as a brother.  They were all crying right along with Brock, some of them even more than Brock was!    No matter what happens the rest of this season, I know in my heart who the greatest team in Utah is.  We went straight to the ER in Salt Lake and thankfully, my cousin was the doctor working that night.  It was good to have him be there, he was in on the blessing that Brock was given along with some coaches and my dad too.   The xray showed that nothing was broken, so that was good.  We spent the rest of the weekend waiting for an MRI and believing that Brock's season was over, not only his season, but potentially his college scholarship as well.  I know that I was in a very dark place.  It kind of scared me that I was that close to being in a place I never want to be in again.  I think I had given up on my life being easy and trouble free and I wasn't willing to try to climb out of that hole again, I've had to too many times this past 2 years.  Finally, on Sunday afternoon, and thanks to some serious help from a friend, Brock had his MRI.  It came back showing no tears in either his ACL or his MCL.  What a relief!!!  After visiting with his doctor the next day, we found out that he tore his gastrocnemius muscle.  We were also told that it's a good thing that Brock is as strong as he is, or his knee would have been blown out for sure.  The hit was cheap, very cheap.  Brock missed about 3 weeks of football and is now feeling good again.  The biggest problem with this injury is that that muscle has a tendency to tear again after it's been torn once, so I now sit on the sidelines just praying that it doesn't happen again or his season will be over.  But, it's not going to hold him back from winning the state championship this year.  I think it will be as sad for me as it is for Brock when it ends, I love watching him play football!

Abby-Abby has been doing pretty good since we made a few changes in her schedule.  For the first month and a half of school Abby got sick.......a lot.  Nothing major, just stomach bugs, then sore throats, then coughs, etc.  etc.  She finally came to me one day and told me that she was sick of feeling crappy and being sick too tired to do anything fun after school and that she wanted to try online school.  At first, I was completely against it, school and friends is where the fun is!  But, after lots of conversations (and arguments) we decided to compromise and it's been perfect.  Abby does her core classes online, and her electives at the school.  She only has to go to school every other day for just the afternoon.  Abby has loved it!  She is very self-motivated, so the online courses work well for her, and she still gets to have the social with her friends at school.  Abby said that she has learned more this past month then she learned the past couple of years because she's had to miss so much school.  For this year, we're sticking with it and then we'll re-evealuate again next year.  This is Abby after her choir concert last week.  It's always awesome to see Abby do anything.
We haven't gone to clinic since August 19th and aren't scheduled to go until November 6th.  I can't believe we're going to make it almost 3 months.  In fact, I've only missed 1 day of school all year!  We're both nervous about making it through October because the past 2 years Abby has been in rejection in October both years.  We're hoping it's not a curse and that we miss it this year!  Abby does feel pretty good most of the time.  She's been having some stomach issues lately, but after chatting with other transplant parent's tonight, it seems like the majority of these kids are having issues with one of the anti-rejection med levels being too high for some reason.  I might request a blood draw just to make sure that all of her levels are where they're supposed to be.  We don't need any shockers at clinic in November.

Me-I've been good.  The hardest thing I'm dealing with is trying to stay on top of medical bills, they're never ending.  My insurance deductibles just started over in August too, so I'm right back where I started plus what I didn't pay off last year.  I sometimes feel like I will always be in medical debt, in fact, I know I will be.  I just got Brock's new MRI bill today and I still haven't paid off his surgery and MRI's from last year!  ughhhhh, it's never ending, but I can deal with it.  I'm going to be selling my book at the Dicken's Festival down here in St. George in November and hopefully that will help.  OTher than that, things are good.  School is hard, but fun.  I love teaching, it's just what I do.  It's been nice to be able just focus on the regular for a while.

I saw this on Facebook today and I like it.  If you ever start thinking that I'm crazy or find yourself asking, "What is wrong with Michelle???" just remember this saying.  And someday you might find me acting like this again, it's not that far off, some of you have seen it already (I'm the one on the bed in the glasses and bandana, singing Guns and Roses, Sweet Child O' Mine......I remember it so well!)

Monday, August 26, 2013

Lots to talk about!

I know, I know, it's been a very long time and a lot has happened.  Thankfully, none of it has been medical, Abby had a very healthy summer; In fact, she didn't get sick once!  I'm just going to update on a few things that have happened since my last post.

I talked in our last post about our new puppy "Milo."  Later that week, when we took Milo to the vet for the first time, we had a great surprise!  We found out that we didn't have a boy puppy, we had a girl puppy.  You'd think it would be obvious, but really, we were told it was a boy and we never checked. Why would we?  The dogs legs were only about an inch long so we just couldn't see it, we would have had to intentionally check it out, and we just never did.  Anyway, Abby and I had a good laugh over that one!  We now own a girl puppy and her name is Marli. She's probably the funniest puppy I've ever seen, great personality.  She's the cutest puppy too!  I think she's already doubled in size since when we first got her.  Rebel still thinks she's annoying, but she'll grow up eventually.

One fun thing that Abby got to do this summer was that she got to go to our church's girl's camp.  This was the first year that Abby's really been able to go.  Obviously 2 summers ago she couln't go, and last summer she only was able to make it for one day.  So, she was pretty excited to go this year.  I'm also in the young women's so I got to go too.  We had a blast!  It was fun to be able to see Abby do one of those things that most girls probably take for granted.  This was our group and what a great group it was!  We spent the days hanging out and playing games and the the nights were spent laughing by the fire!  We can't wait for next year.

The week before we went back to school, my dad decided that he wanted to take us on a trip to SanFrancisco.  Unfortunately, Britt and Brock couldn't go because of work and football, so my mom and dad, me, Abby and my niece Mina, spent 5 days hanging out and school shopping in San Fran.  We had a great time.  The girls loved riding the cable cars everywhere and trying on every article of clothing in the stores.  We ate delicious food, spent time at the Wharf and Pier 39, and the girls got completely spoiled!!!!  It was the perfect get-away to end the summer.  The only problem was that we walked so much that by the time we got back to the hotel, Abby's ankles were swollen bigger than her thighs.  But, she would get up the next day and be ready to go again.  Thanks dad!

After our trip, it was back to school!  School started on Wednesday, the 14th, and on the next Monday, Abby had clinic, so we had to miss the 4th day of school.  But, it actually ended up being perfect timing.  My sweet Grandma Lambert passed away that same week and her funeral was on the Saturday before clinic, which was perfect for us because we were already going to be in Salt Lake.  Her funeral was so perfect.  All of my cousins and their families were there.  I can't remember the last time we were all together.  It was fun to catch up with all of them.  During the funeral each one of the grandkids stood up and told a short memory of my grandma.  It was so interesting to hear each of the things that stood out to us......It ranged from her obsession with Aloe Vera, to being a Ute fan, to stories about the cabin in Midway, to just the times we were able to sit and chat with her.  My favorite part of her funeral was when the grandkids and great grandkids all stood up and sang the closing song,"Families can be together Forever."  I know my grandma loved seeing that, it must have made her proud.  Hopefully, it won't take a funeral to get us all together again.

Abby and I stayed in salt Lake all weekend, but Brock and Britt had to go home after the funeral.  Britt was starting school again and Brock couldn't miss football.  Clinic for Abby couldn't have gone any better.  Everything, and I mean EVERYTHING looked perfect!  Her kidney function looks great, her heart is perfect, even her med levels were right on.  Absolutely no problems.  We don't have to go back for 3 months!  The longest stretch ever.  We also delivered another letter for Abby's donor family to our social worker.  Maybe now, they'll be ready to make contact.  We're not going to push it too hard, when they're ready, we'll be ready.  We all feel like if it's supposed to happen, it will.  We will continue to send them occasional cards and letters thanking them and letting them know of Abby's continued health, but we know that they'll contact us when the time is right.

Later that night, Abby was lucky enough to be able to speak at the Primary Children's Medical Center Foundation golf fundraiser at Jeremy Ranch.  What a great opportunity for Abby!  We thought that there would be other speakers there too, but when we got to the dinner we saw that Abby was the featured guest!  We had written her talk together the day before.  She was supposed to tell her story and talk about all of the things that she's been able to do since her transplant.  There were about 60 + people there, most of the them were men.  Most of them had tears in their eyes as Abby talked about what happened to her and how thankful she was for her donor family's decision to donate their loved one's organs.  When she was done talking, they all stood up and gave her a standing ovation, it was awesome.  I was extremely proud of Abby!  She was confident, yet humble, and so sincere.  I'm so grateful she was able to do this and we both hope she has even more opportunities to share her story.
To be honest with you, I've had probably the busiest start to any school year that I ever remember.  In the last 2 weeks I've helped both Abby and Brock write talks for church, helped Abby write her fundraiser talk, taught 2 young women's lessons, given a short talk at my grandma's funeral, written a letter to Abby's donor family (this is one of the hardest things to do!!), had back to school night, and started back to school.  I'm officially beat up already.  I decided that it got so busy so fast that when things slow down again, it will seem easy.  Even though it's so much busier than our summer was!

To update what Britt and Brock are doing:  Britt just started her 2nd year at Dixie State.  She'll be applying for nursing school after this semester.  We're hoping she gets into the nursing school at Dixie State, but this won't be easy.  She's been working almost full time as a CNA at the Cliff View care center.  I'm so thankful every day that she worked so hard in school and got a scholarship.  We haven't had to pay a penny for her schooling yet, and we shouldn't have to for her first 4 years.  I love it when hard work pays off!

Brock is a senior this year.  They had their first football game last Friday and won 12-0.  Brock played great.  He's going to be fun to watch this year.  I think the team is capable of winning the state championship this year, how sweet would that be for his senior year?  For our friends up north, they'll be playing at West High on September 6th at 7:00 if you want to come watch.  He won't play up there again until the state games in November.  We're still not sure where he'll be going to school, we'll just have to see how he plays this season.  Once again, his hard work should pay off when it comes time to go to college.

Game Night.  Desert Hills 12, Stansbury 0
My favorite part of the game....Brock is #77!

Although things are busy, they are good.  We'll get back in the swing of things again here very fast.  We're hoping and praying for a school year full of good health for everyone in the family and maybe even a little bit of peace and down time :)

Sunday, July 7, 2013

Milo and Derek

**Notice the link on the right side of the blog now that you can click on to buy "Abby's Miracle."  Thanks for the help Britt, and if you still need a copy of the book, you can buy it on the link or email me and I'll get it to you: domans4@yahoo.com.

I can't believe summer is halfway over already!  The first 5 weeks was the craziest for us.  Not only did we go to Hawaii for a week, but we always made 4 trips to Salt Lake, that's right, 4 trips in 4 weeks!  But, as far as I know, we won't be going up again until August.   Coming home from Hawaii was extremely depressing, I had no worries there, it was perfect; But, life goes on and we've had a couple of exciting things happen since we got home.

First, we've had two little Shih Tzu dogs for about 4 years.  They were twins and looked almost exactly the same.  Well, one of them, Gus, was having some skin problems that the vet was having a hard time figuring out.  We had tried many things, even Prednisone, but we couldn't determine the cause or the cure.  It was making Gus miserable, he was scratching all the time and was sick too.  I finally decided that we weren't being good owners if we continued to make him suffer like he was.  It was not easy, but I took him to the vet to be put to sleep.  I hated it, Gus was my buddy, but it needed to happen.

Our other dog, Rebel, followed Gus everywhere and we were afraid he was going to be lonely, so we decided to get him a new friend.  We got another little, 6-week-old Shih Tzu puppy, and after a lot of arguing and debating, we decided to name him Milo (or should I say that Abby decided to name him Milo.)  Brock's top choice was Zeus, and when you see the puppy, you'll understand why that wouldn't work, and Britt wanted to name him Kevin, I don't think we even need an explanation about why we didn't choose that name. Nobody really cared what I wanted to name him, so Milo was the name.  He's adorable.  I don't know if I've ever seen a cuter puppy.  He's Abby's dog and she just can't get enough of him, actually, none of us can.  He's a lot of work though, but I think we can handle it.  We sure miss Gus, but we love our new Milo.

He's actually pretty smart too.  He's now only 7 weeks old and he's already using our doggie door.  Our goal is to have him completely house trained by the time we go back to school in August.  Milo mostly just annoys Rebel and tries to bite his tail, but I bet they'll be friends when he gets a little older.

Last week I also got an email from the foundation director at Primary Children's.  We had been in contact the past few weeks because they had asked if Abby would be willing to be a speaker at their big golf fundraiser coming up in August, which she is going to do.  But, this time they wanted to invite her to the new music therapy room ribbon cutting at Primary Children's.  Of course that meant another 600 miles of driving, but Abby really wanted to go.....and good thing we did!  As we were standing out in the hall waiting to go into the ceremony, Abby and Britt's biggest, most famous heartthrob walked by. It was so funny, Abby's cheeks turned bright red and she couldn't even talk.  I couldn't figure out who he was, but finally Abby whispered, "It's Derek!!! Derek from Dancing With the Stars!"  How could I not know that?????  As soon as he walked by again, and after Abby wiped the drool from her chin, we were able to get a picture, and Abby was set for the day!  When we sent the picture to Britt, she was so mad that she didn't come with us!  She was so jealous, I think she maybe even shed a tear or two :)

When we got home, I had to make the picture memorable, so thanks to Costco, Abby now has a poster of her and Derek hanging in her room.

The rest of the day at Primary Children's was also fun and we were able to spend the day with some of heart friends too.  Abby and the other kids had a front row seat to listen to both Linkin Park and the Stone Temple Pilots perform some of their songs.  We were able to tour the new Forever Young zone and the new music therapy room too, they are both amazing.  Abby actually said that she'll be excited to spend some time in there next time she's admitted, which is hopefully never!!!  It was a good day and I think it was even worth the drive.  Here's a link to the story that was on KUTV: http://www.kutv.com/news/top-stories/stories/vid_5626.shtml

Linkin Park
Stone Temple Pilots

Matthew Sperry, a heart transplant friend,  cutting the ribbon!
Abby and Steve Young

Last thing....This Friday, the 12th,  is Abby's 2-year heart anniversary!  We are going to do the same thing that we did last year and make in the 2nd annual "Pay if Forward for Abby" Day!  If you're on Facebook, go to the page and see what we did last year.  Or, you can click this link and see what we did last year: http://www.abbyninja.blogspot.com/2012/06/pay-it-forward-for-abby.html
To honor Abby's donor family and to show how thankful we are for her new heart, we ask everyone to do something for someone else on July 12th, Pay it Forward for Abby!

Friday, June 21, 2013

Abby's 2-year biopsy.......We couldn't be more grateful!

We are so grateful!  Abby's annual biopsy was perfect.  We decided to do a picture blog to show the events of the day.

Check in was at 7:30, we loved this because usually we are first case and check in is at 6:00.  But, even thought I didn't have to, I woke up early anyway, I was a little nervous.  Abby was nervous too, I've never seen her as grouchy as she was on Wednesday night.
Wide awake and driving to Primary Children's.

Check in at the surgery desk.  There are always so many kids in the waiting room that we wait in the hall.

Abby sporting her hospital digs, looking hot!

We always have to wait an hour and a half  before they take Abby to the cath lab, so after they take her weight and height and take her vitals, she always asks for warm blankets and then falls asleep while we're waiting.

The doctor that's performing the biopsy usually walks upstairs to our waiting room and talks to us before walking us down to the cath lab.  We thought it was going to be Dr. Gray today, but we were surprised when Dr. Martin walked in instead.  Abby had never had Dr. Martin before, but we loved her from the start!  Right when she came into Abby's room, we loved her!  She knew everything about Abby and knew exactly what to say to ease our nerves a little bit.  We walked down to the cath lab together, and as soon as Abby walked in, all of the cath nurses were so excited to see her!  They love Abby down there, they've really gotten to know us and we always spend a few minutes chatting with them before I have to give Abby her kiss and hug and leave her (this is the worst part of the entire process!  I hate it).  Abby always get to choose what flavor of gas to have as she's going to sleep, but today they chose pineapple for her to remind her of our trip to Hawaii!  Hopefully she was thinking about the beach as she was drifting off.

I walked down to the waiting room, and was so thankful to see my heart mom friend Shauntelle waiting for me!  Even though I told her not to come because she already spends so much time at that hospital, she came anyway, and I was grateful.  Abby's biopsy was supposed to take 90 minutes, and that's a long time to sit alone worrying.  Shauntelle helped make the time pass so much more quickly.  We definitely didn't run out of things to talk about!  No only that, but she also brought the much needed chocolate and diet coke.  Thanks for being there Shauntelle, that meant a lot to me!  Have I ever said how much I love my heart mom friends???  They are the greatest!
My hero for the day!

When the pager went off saying that Abby was done, was when I really got nervous. As soon as  I hear the pager, I have to walk down to the cath lab to meet the doctor to go over what they found.  Dr. Martin sat down with me and showed me the pictures and videos of Abby's heart and how amazing her coronary arteries look!  There is absolutely no narrowing, they are perfect.  Abby's heart pressures were all the same as her last cath too, this was a huge relief!  I loved how Dr. Marin took the time to really show me and explain everything, she's really good.  She said the entire cath/biopsy went perfectly, no problems.  Seeing Abby's heart looking so strong is always an amazing thing.  I so wish that I we knew Abby's donor family so that we could share the good news.  Maybe someday.

The next thing I had to do was to walk upstairs to the waiting room and wait until Abby had waken up enough for me to come back.  At the top of the stairs I ran into one of our heart transplant heroes, but I forgot to take a picture, duh!  Laura Hofheins received her transplant over 20 years ago and she's still going strong!  I loved that I saw her and got to talk to her!  She met me because she wanted to buy a book.  Thank you Laura!  Seeing Laura always gives me so much hope, she's an inspiration to us.  Then I ran into another one of my biggest heroes, Dr. Kaza, Abby's transplant surgeon.  We love Dr. Kaza, he's one of the greatest men that I've ever met.  We've spent a lot of time with Dr. Kaza talking about many things, and he's definitely a person that I look up to.  Not only is he brilliant, but he's also very spiritual and so completely caring.  From the very beginning he's had a soft spot in his heart for Abby, he always asks the transplant team how she's doing and he makes it a point to see us whenever we are there.  We appreciate this man so much, he is incredible.  A few weeks ago, I sent him a copy of "Abby's Miracle,"  and he was so complimentary and so thankful for it. I could tell that he really did read it, he'll always be a hero to us.  My next step was the waiting room.  Because of all the time we've spent there the past 2 years, I've become friends with ladies at the desk.  When I walked in, they were so excited to see me because I hadn't seen them in such a long time.  I had brought one of my books to give them, and as soon as they saw it and read the back cover, they were in tears.  They insisted on buying it and wouldn't accept it as a gift.  It's always touching to see how many people truly know Abby's story and care about her!

I finally got to go down and see Abby in the PACU.  Then they told us that she would have to be there, laying flat for 6 hours!!  That's a long time, we were expecting only 4 hours. She was extremely drowsy when I saw her, but she said she was feeling good.  She got a big smile on her face when I told her the initial results of her cath, and an even bigger smile when I told her that I had seen Dr. Kaza and he was asking how she was.  Then the waiting began.  I actually got Abby to give a thumbs up even though she was so incredibly tired!

We were excited because we got spend the next 6 hours in our own private room where it was quiet.  During her last annual biopsy we didn't get our room and we spent the day listening to a baby right next door crying.  It was awful.  This was like heaven.  Abby stayed awake on and off for the 6 hours and I fed her lots of slushies.  I set up my own little office and we had many visitors that knew we were there and wanted to stop in and see us and to buy a book.  Thank you to everyone that stopped by and for buying "Abby's Miracle."  Every book I sell helps me to try to get caught up on some of Abby's medical bills. The time actually went really fast.
When she could sit up a little bit, she ordered some food from the cafeteria.  I had to go downstairs and get one of their amazing sandwiches for me too!

I love this picture because even though Abby is sound asleep, she still has her phone in her hands!  Typical teenager.  I'm glad that Abby slept a lot, it made the time go faster for her too.  While we were waiting, the transplant team came up to to talk to us about her lab results.  Everything, and I mean EVERYTHING, looked amazing!  Her blood counts are up, her kidney function is good, she's not anemic anymore and her BNP, which is a measure of heart failure was only 29.  The lower the score, the better.  BNP levels below 100 indicate there is no heart failure, and Abby's was all the way down to 29.  SWEET!  The transplant team was thrilled with everything.  I talked to them about possibly taking Abby off a few of her meds, she's still on about 9 prescriptions, but we decided that because everything is where it needs to be, were not going to mess with anything right now.  It was good for us to just sit and chat with the transplant team for a while.  They're still trying to figure out if Britt and Brock need to have echoes done this year, or if they can wait for 5 years.  They're going to do some research and let me know next week.  After the transplant team left, Abby had to have an EKG,  this was just another part of the annual tests that needed to be run.

Then, finally, it was almost 4:30 and time to go down to clinic to for an echo and a chest x-ray.  Abby's echo was done by a lady that had a heart transplant when she was younger.  It had been 22 years since her first transplant, and 13 since her second.  It was fun for Abby to talk to her and ask her questions while she was getting her echo.  She was even asking why she decided to become an echo tech and what was involved.  I think Abby loves to talk to other recipients, she always has questions.  
Also while she was getting her echo, the transplant team and Dr. Tani came in to tell us that they had already gotten back the biopsy results and that it was "squeaky clean," meaning that it couldn't look better!  Best news of the day for sure!  Finally, Abby's appointment was over!!  But, we still had to make a couple of stops before we were ready to leave.  Our first visit was with a family that I had spent a lot of time messaging on Facebook and texting, but that we had never been able to meet.  Sara is another transplant friend.  She didn't receive her transplant too long ago and was still living away from home and family and trying to recover from her transplant.  It was fun to finally be able to meet Sara and her mom and to spend some time just sitting and chatting together.  They were so much fun to talk to, it was so comfortable and it felt like we had known each other for a really long time, even though we had just met.  We'll definitely keep in touch with them, it's good for Abby to have transplant friends.  that she can keep in touch with, and it's good for me to have other moms to talk to as well.  It's reassuring to talk to someone that knows what I'm going through, it makes me feel more confident in how I'm handling things and it makes me feel like less of an oddball!
Our last stop was up to the 3rd floor to visit with some of our nurse friends and to meet a little 2-year-old that is patiently waiting for his heart right now.  Christopher hasn't been listed for too long, but we're hoping that his heart comes fast!  Thank you Holly for buying a book, I hope that by reading our experience, it will make your next few months a little more peaceful! I know this isn't a great picture, Abby will probably kill me when she sees it, but it's the only one I got.

It was now 6:30 and Abby and I were completely beat.  I felt so emotionally drained and Abby was physically drained.  Her leg wound was sore and we needed some dinner and to go get some rest.  Thankfully, we didn't have to drive all the way back to St. George.  We stayed with my brother in Lehi for the night and left to come home this morning.  I am so lucky that my brothers both live up north, we'd be in trouble if we didn't have someone to stay with up there every time we have to go.  What a day!  What a long day, but what a good day, it was perfect!!!

While I was driving home this morning, and Abby was sleeping, I had some time to reflect on things.  I'm scared to share this out loud, but finally, after 2 years, I feel like things are really going to be okay for a while.  Every time I've said that before something has happened, but I don't think it's going to this time, I think it's our time to just "be" for a while.  I don't know how long, and I know that something will come up again at some point, that's just how it is when you're living with a child that has a new heart, but for now I'm going to let my guard down a little bit and just relax.  Unless something comes up, Abby doesn't have to go back to clinic until September!  That's a long time.  I also felt so incredibly grateful for so many things.  We are so lucky to have the transplant team that we do, they care so much about Abby and truly love her, we couldn't ask for better care anywhere in that hospital.  I'm also so grateful for all of you.  We had so many people send messages and texts and Facebook posts asking about Abby and letting us know that they were thinking about her and praying for her.  It's very humbling to have that happening on your behalf.  Thank you, we could feel your prayers.  I'm still so in awe about how our past 2 years have played out.  Everything has happened just how it was supposed to happen.  People have been put in our lives at the exact time we've needed them to be.  It's just been perfectly orchestrated.  I'm grateful I've had this experience because now I have a story to tell that can hopefully inspire other people and strengthen their faith too.  I can finally, honestly say that I am grateful for the events of the past 2 years.

July 12, Abby's second heart anniversary, is coming up fast.  It will be time for the 2nd annual Pay It Forward for Abby Day!!!  Think back to what you did last year, and start thinking about what more you can do for someone else on July 12th this year!!!  You've got about 3 weeks to figure it out.  Remember that we want to hear about it again too......post it on our Pay it Forward for Abby Facebook page, email it to us (domans4@yahoo.com), text it to us, whatever.  But be sure you do something for someone else on July 12th to show your support and to Pay It Forward for Abby!!!