Monday, October 31, 2011

steroids.....from 5 mg/day to 55 mg/day.........not the best Halloween ever!!

Definitely not our favorite Halloween ever!  It was fun to see lots of the docs and nurses dressed up at the hospital however; In fact, Buzz Lightyear put Abby's IV in this morning! 

It all started okay, fabulous really.  I was extremely nervous to hear the results of her heart cath because she's had a lot of swelling in her feet and legs this week.  One night last weekend, her ankles were the size of softballs!! She's been walking around with sore feet all week. I thought it had to be because her pulmonary hypertension was flaring up again and I was ready to hear Dr. Day say her levels were too high.....but, he said that everything looked good, the numbers were the same as last week!  Next stop was her echo.......and the results: things looked awesome, much better than last week and much, much better than 2 weeks ago!  I was starting to feel really good about things, I figured all my worrying this past week was for nothing.  Next stop, talk to the transplant team.  They thought everything looked good, and her heart sounded really good too, but then we started talking about Abby's swelling, her lethargy, her headaches, and just feeling kind of blah lately.  This was when they started worrying about the results of the biopsy, which we wouldn't get back until 5:00.  We made 2 plans, one for if the biopsy came back clean, one for if it didn't.  We hopped in the car to drive home, knowing that we might have to go back to Salt Lake tomorrow if the biopsy wasn't good and then spend a few days in PCMC getting IV steroids.....the waiting game began!

I got the call at 5:30, just as we were pulling into the driveway.  Abby's biopsy results looked the same as 2 weeks ago, not worse....but not better either.  She's still in minor rejection.

The good news: We don't have to go back to Salt Lake tomorrow.  This would have been bad because tomorrow is the first day I'm supposed to report back to school.  I don't start with my classes, but I have to be at the school.  This was a relief to me, I was having a hard time thinking of an alternate plan.

The bad news:  We have to increase her Prednisone steroids to 27.5 mg twice a day....almost as much as she was on right after the transplant!  Right now she's only taking 2.5 mg twice a day, so this is quite an increase!  This really stinks for Abby because she'll be back to having puffy cheeks, which is really hard for a 12-year-old girl, and it's taken so long to get them back to normal.   But the worst part about it is that she probably won't be able to go back to school next week.  This devastated her the very most.  She's been counting the days until she was able to go spend the day with her friends.  Ever since she heard the news there's been lots and lots of tears, and that's really hard to see because Abby has been so stoic through everything so far.  It just broke my heart to see her so sad and discouraged.  We're just hoping that this does the trick and the rejection is gone next week and the prednisone taper will happen fast so she can get back to school.
The other bad news: We have to go back up again next Monday.  This is going to be real tricky because that's my first day with my new classes.  I'm not sure how that's going to work, but it's already causing me a bunch of anxiety!  I have to take Abby, but I also have to be to school, hmmmm..... can't do both.  It's a no-win situation for me.  I was planning on this happening a lot, but just not the first day.  Just another thing to stress about I guess.

So, things aren't great.  They definitely could be worse, much worse, so we are so grateful for where Abby is right now and all of the progress that she's made, but we always wish that things were perfect too.  I keep telling myself to expect bumps in the road, but I also keep believing that we won't have any....this is Abby we're talking about and if you've heard our story up to this point, you know that everything happens just how it's supposed to for us!  I know we'll work through this, things will work out, it's okay to be a little sad and anxious sometimes, as long as we can bounce back and keep our chins up, this is just a bump in the road and we will get through it.

Friday, October 28, 2011

Another "Grateful List".......sometimes it's just needed!!!!

I just got the call from PCMC and abby's cath/biopsy is scheduled for 8:30 on Monday morning.  I hate to admit it, but I think I have a serious case of  the "I'm getting really tired of all of this and feeling sorry for myself" blues!  Maybe it's all the driving back and forth, or maybe because I have to try to go back to work next week, or maybe I'm just tired, but hopefully if I make another grateful list, I'll snap out of it.

Things I'm grateful for:

     -Football.  Sounds funny, I know, but there are lots of reasons I'm grateful for football.  First, because it's given Brock a focus through all of this.  I think it's truly helped him to cope.  He's had something else to think about other than just Abby and how she's doing.  Second, it's one of the "normal" things that we get to do.  I used to go to my kids games all the time......Now that Abby isn't playing yet, and Britt is still recovering, I'm down to just being able to watch Brock.  I miss going to games.  Desert Hills needs to win tonight so that they can continue on in the playoffs and so we can enjoy this "normal" thing a little longer.   Plus, Brock is so fun to watch.....who wouldn't be grateful for football when they get to be Brock's mom!
     -My job.  Although I'm a nervous wreck thinking about going back and starting in the middle of the school year while my brain is still kind of a jumbled mess, I am grateful for my job as a teacher.  I have always loved to teach school, it's just what I do.  I also love where I teach, Sunrise Ridge is a great place to be.  The support I've received from my teacher friends, both at my current school and my past schools and teachers from schools that I haven't taught at has been incredible.  I think if I can make it through the first 2 weeks, things will be okay.  It does feel like I should be going back to the classes I had last year because I never officially finished the year with them.  It's just going to be weird to be starting 1/3 of the way through the school year......definitely a new experience.  I'm grateful that this happened when it was summer and so that I was able to have as much time off as I have.  The timing really couldn't be better.
     -Tootsie Pops.  This is my new addiction.  It all started because I would have one when I started getting tired while I was driving, now I just have them all of the time.  And it really is like an addiction.  I was so ticked when I bought a box of 100 at Costco and every time I went to grab one, it was cherry flavored ( I don't like the cherry one's), so I dumped the box out and counted.  55 out of the 100 were cherry!!!!!  55........why would that be???  It just doesn't seem right.  I almost wrote a letter to the Tootsie Pop Company, but decided that might be a little weird.  I just bought lots of boxes and will give all of the cherry Tootsie Pops out for Halloween and save the rest of the good flavors for me.
     -Britt's doggie-heimlich-manuever skills.  That's right, Britt saved our little shih-tzu Gus's life a few days ago.  He was choking on a rawhide bone we gave him and we could not get it out of his throat.  So, as I was rushing to the vet, and Abby was sobbing in the backseat, and Gus completely stopped being able to get air and was dying in Britt's arms, Britt had the smarts and the guts to try to give him the heimlich........and it worked.  The bone dislodged just enough for Britt to grab it out of his throat.  She was truly a hero.  Although we've joked about it a lot now, it would have been extremely traumatic if he wouldn't have made it.....and we've had enough trauma around here lately.  Way to go Britt, you're a hero!
     -That going through the past 5 months made my testimony strong enough to share it in sacrament meeting.  I've always been too nervous and not had the guts to get up there and do it.  Even though I've been through most of my weakest moments since May 18th, this is one area that's gotten stronger.  I've had to learn to have incredible faith and to completely put my trust in the Lord's hands and His plan for Abby.  By doing this we've experienced numerous miracles and been blessed with many tender mercies.  How could my testimony not be strengthened??  I'm grateful that I finally, after 41 years, had the strength to share my testimony in church. 
     -The new carpet in my house.  I had forgotten that  a couple of weeks before we were life flighted up to PCMC we got new carpet, it was a sweet surprise when we got home!!
     -Other heart kids and their blogs and their moms.  What a great support system we, as heart moms, have.  When I started feeling the blues today, I went and read some of the other blogs about kids with heart problems.  It just makes me feel more inspired and less on my own in all of this.  It's so good to have other people that can understand what I'm going through and that can help me feel like I'm"kind of normal" anyway.  It reminds me that we're not the only ones that have had to go through something that's been hard.  I also get strength from seeing their strength and how they handled things.  I love being able to follow their blogs and see their successes as well as the bumps in the road, along the way. 
     -Once again, the simple things.  Dinners together in our house, listening to the kids argue ( I know, most of you probably don't understand this one), working out in the mornings and not needing to keep my eye on the time when we're all in the hot tub after we swim (this all ends next week, back to work-just the hot tub ends, not the workouts), watching Abby practice soccer with her team again, enjoying the firepit in our backyard, friends stopping by just to check on us, seeing Britt and Brock off to school in the mornings, listening to Abby play the piano, my bed, knowing that I finally have all of Abby's meds for the next couple of months, going to church as a family, Lysol wipes, and good friends.
     - All of you, our followers.  I went back and was reading through all of the comments that people have left on our blog, WOW, we are lucky to have so many amazing people in our lives, even if we've never met some of you physically, it still feels like we are friends. Hopefully, someday Abby and I will be able to meet all of you. I loved it as the football game the other night when a sweet lady came up to me and told me that even though we don't know her, she knows us and has been following the blog from the beginning.  Thank you for telling me that my words have made a difference to you.  I wish I would have gotten your name, hopefully I'll see you again sometime.  We have had so much support from the very beginning and we still continue to have it now.......thank you, it's been needed.
When I think about how far we've come, I realize that I have a lot to be grateful for and that I shouldn't ever feel sorry for myself.  I think I've just had a nervous feeling about next Monday's biopsy all week, something just doesn't feel right.  I'm hoping this feeling is just part of being nervous to have to go back to work next week (sometimes it's still a little hard to even be in the school where this all started-and btw, I'm not going back in the gym for a while ), plus I won't be with Abby 100% of the time like I have been since May 18th.  I think I just need to look at this as the next phase in our adventure and I need to remember that even though this has been hard, we've blessed every step along the way so far, why would things change now??

Monday, October 24, 2011

Leave at 4:50 AM-drive to SLC, go to clinic, drive back to St. George-Arrive 4:50 PM

 4:50 AM-Hop in the car and pull out of the driveway...........

I love driving in the morning, I would do it this way every time if I could!  There's hardly any traffic, and it's actually pretty relaxing.  Abby slept almost the whole way up, and I just listened to my ipod and cleared out my head a little bit!  Even after stopping to get Abby hot chocolate, her favorite, we stilled pulled into the parking lot at Primary Children's at exactly 9:15, right on time.  Abby had her labs drawn-only one poke today, and then went in for her echo.  I was stressed, I'll admit it, I was just worried about what they would find today; But, everything looked great!!  After I heard the results, I was able to relax a little bit.  Then we spent some time with the transplant team and Dr. E. 

I decided it was time for me to ask some questions about rejection, because last week I felt like I didn't know anything and I didn't feel good about that.  I'm grateful that they were willing to spend the time with me to answer my questions.  One good thing that I did learn is that having a few episodes of mild rejection is actually good....if there was never any rejection, that would mean that the immuno-suppresant drug level was too high, and that's not what we want.  So, as long as it's minor, and it doesn't happen too many more times, everything is still looking good.  I also learned the difference between vascular and cellular rejection and what the treatment is for both.  I'm not going to go into it, but I actually understood what they were telling me.  If Abby ever has a higher level of rejection, they will probably admit her, and give her IV steroids for a few days and hope that will clear it up.  Her cellular level was 2.5 last week, which is minor, 3 or above is more serious.  The not so good news is that we have to go back up again next Monday for another cath/biopsy to make sure there is no rejection.  An echo doesn't always show everything.  So, we will probably head up to Salt Lake on Sunday night for an early morning visit to the cath lab and another clinic visit.  I don't think the cardiology clinic would know what to do on a Monday without seeing Abby and I there!  It seems like even though they told us we'd only be going every other week, we've pretty much been up there every week anyway....but, I can't complain, we really shouldn't even be home yet.  If Abby's Prograf level is where it should (we are still waiting for the phone call), Abby will get to go off of 3 of her meds!!  No more Valcyte, Zantac, and Nystatin....woohoo!!! She will also be able to come down even more on her steroids, that means we are one step away from being all the way off of them!  Goodbye puffy cheeks :)  But, I'm not counting on it, with some other weird things that happened with Abby this week, I'll be surprised if it comes back where it should be.  Going off her meds scares me anyway because it seems to mess up all of her levels and make other things happen too!  It just makes me nervous.

I felt good about clinic today, I didn't feel rushed and I left much smarter than when I got there....and that's good!  It was kind of strange because Abby's heart rate was really low, and her blood pressure was really high, but they couldn't figure out why.  It just seems like there are lots of little things going on right now....let's just hope they stay little!  Then we got back in the car, grabbed some lunch and were on our way back to St. George. 

4:50 PM-Pull in the driveway at home!

Exactly 12 hours, and you know what?  I'm tired.  That was a long day.  I think I hold my breath the entire time we are in the clinic, I just feel tense, so when we leave I'm always tired; then, to have to drive back was hard.  What am I going to do next week when I'll have to teach school the next day?  I won't get any recovery time!  But, I'm just going to have to suck it up and do it, I have no choice.  I go back to work November 1st whether I'm mentally ready or not, I'm just going to have to make myself be ready.

By the time we got home, I was tired and ready to do nothing for a while....Abby on the other hand, wasn't tired.  So what did she say as we were pulling into the driveway?  "Mom, can I please go to soccer practice, we are only 1/2 hour late and it will be the first time since May that I can play! Please!!!"  How do you say "NO" to that?  So, we got right back in the car and I took Abby to practice.  Abby got to play soccer today and she did great, she is so tough, and I love it.  I didn't dare leave her alone at practice, I'm way to scared to leave her anywhere where she's going to be running, so I stayed and watched her play......and it was perfect  .It was so good to see her doing her normal things, and being the Abby she used to be!!

Tuesday, October 18, 2011 Monday??? Blah!

What I thought would be one of our easy in-and-out of clinic in 2 hours, turned into being much, much more; In fact, I can't remember very many crazier clinic days!  We got there at 7:30, had labs drawn and had Abby's echo with no problems, I think there was only 1 other patient there at the time.  Then we were just chilling, waiting for the transplant team, talking to our "heart buddies," actually kind of enjoying ourselves for a few minutes.  When the transplant team and Dr. E came in, we still thought that everything was good, then they left for a few minutes.  While they were gone, I had the genetic counselor come in to talk to me.  While she was trying to explain to me what was going on (more on this later), Dr. E. came back in and said that they decided Abby's echo showed some decreased heart function so they were in the process of trying to fit us in the cath lab schedule!  Then I started getting a little nervous.  They were coming in and out checking on Abby and rescheduling everything, at the same time the genetic counselor was trying to talk to me, at the same time Medco, the pharmacy company that our insurance company uses,the company that I've been haggling with for the past 5 weeks trying to get Abby's meds from, kept calling me to tell me more problems they had run into.   You know when you're brain goes on overload and it just kind of freezes, I've been there many times the past 5 months, and I almost went there again.  I almost had a breakdown right there in clinic.......but I didn't, I held it in :)   Anyway,  they got her all prepped and we walked into the cath lab before I had even really had a chance to think about what was going on.  They were happy to see Abby in the cath lab, not because she was there 2 weeks early, just because they love her, she's the perfect patient.  While she was having her surgery, I went and had my blood drawn (back to the genetic counseling part) grabbed some lunch and then they paged me, she was already done.  The good news was that her cath looked great, no problems.  The bad news was that when I walked into the recovery room, Abby was sitting up and she was mad, really mad.  I had never seen her so mad in the past 5 months (well, maybe when they wanted her to talk to the psychiatric team!).  She had only been done about 10 minutes and she was saying,  "I'm ready, let's go.  Let me get dressed now, I'm ready to go. Just let me"  I found out later, after they made her actually recover that she was so mad because the anasthesiologist made her go all the way to sleep, she just wanted use propofol, but he didn't want to do it that way, and it ticked her off!  She was not happy, but she got over it pretty quick-thank goodness!   Dr. E then wanted us to go back downstairs and have another echo before we left.  So, finally, at 3:00,  7 1/2 hours after arriving at clinic, we were on our way home.  The results of Abby's biopsy came back this morning and showed that she is in mild rejection.  Nothing to freak out about.  We just have to make some adjustments in Abby's meds and then go back up for another echo and clinic next Monday and hope that things look better.  I just keep reminding myself that I can't complain about all of the trips to Salt Lake, because we really aren't even supposed to be  home yet.  I think that this was just a reminder for us that we shouldn't ever become too complacent or comfortable, things are always going to come up, we just need to expect it and go with the flow when it does.  It was a good reminder.  It was so good to see some of my "heart mom" friends there yesterday, it's always is a good reminder that we're not the only ones that are going through these things right now, and they can understand some of the emotions I go through daily.

Now to the part that's a little more stressful.  It turns out that Abby's cardiomyopathy is genetically linked.  They found a mutation on one of her genes, the TNNI3 gene to be exact.  This is the information that I learned from our genetic counselor-I might not be completely correct on some parts, but If I'm wrong, I'll repost later: 

-Abby has had this gene since birth, it just didn't manifest itself as cardiomyopathy until May 18th.  It can be hidden for many years, sometimes people never even know they carry the gene.
-People that carry the gene often die from sudden death.
-It's possible that Abby received this gene from either me or her dad.  But it didn't have to happen that way, she could be the first one that carries the mutation.  We both need to be tested for the gene to see if we passed it on to her. I had my blood test yesterday, her dad hopefully will very soon.  It will then take about 3-4 weeks to get the results.
-If either of us carry the gene, there's a 50% chance that Britt and Brock do too.  So, if we carry it, they will also need to have the testing done.  We have all had echo's done, so if we carry the gene, we're okay for now.  If either of them carry the gene, there's a 50% chance they will pass it along to their kids too.
- There is a 50% chance that Abby will pass it on to her kids.  But, with the rejection meds she's on now, she knows she probably won't be able to have kids of her own anyway.  We were reminded of that sad fact yesterday too.  My response to that is.....don't worry about it now, because who knows where will be in 10-15 years when Abby wants to have kids, everything could change by then.  10 years ago, Abby wouldn't have even been able to have a transplant and look where she is today. 
-If I carry the gene, my mom and dad should be probably be tested so we know if I got it from them.  If they carry it, then my brothers and sister should probably be tested too. Then we'll have to see if it's passed to their kids.

It's a huge thing to think about.  For now, I'm just hoping and praying that neither Abby's dad or I carry the gene.  If neither of us do, then Britt and Brock are all clear and won't have to worry about it at all; But, if we do, I guess we'll just go from there.

Yes, yesterday's clinic was pretty stressful.  We didn't get home last night until about 8:00, and I still feel wiped out today.    I have lots of questions for the genetic counselor, so I'm glad I have her number.  One question I have is if Abby carries the gene, can it affect her new heart?  I just don't know, but I hope not.  I'm definitely not a gene specialist, or even a scientist (I only teach 6th grade math!) but right now, I wish I was.

My favorite comment I got yesterday was from a good friend and fellow heart mom.  She said that she was amazed that she was picked to be a mom to such a special little girl.  I feel exactly the same way.  I am amazed I was chosen for this and I wouldn't change it for anything!  Just spend a little bit of time with Abby and you'll know exactly what I'm talking about.  Heart kids are special, and even with everything we go through daily,  I'm proud to now be considered a "heart mom!"

Saturday, October 15, 2011

Clinic Monday, but for now.....just a mellow week!

Things have been pretty mellow around, and I'm not complaining about that at all!!  I think that "mellow" is just what we need for a while.  Abby and I are going back to Salt Lake on Sunday night for clinic on Monday.  One interesting thing is that they got back the results back from the the genetic testing they had done on Abby's heart, they are meeting with us on Monday. I'm not quite sure what to think or feel about this, I can't even begin to think what they are going to tell us.  Maybe they'll be able to answer some of the "why" questions we have, but.....maybe I don't want to know either.  I guess we'll just have to wait to hear what they say and deal with it from there.

I think I forgot to mention that Abby made her final decision for her "Make-a-Wish" wish.  After lots of thought, and timing issues, and taking into consideration that she's not supposed to be in the sun too much and can't swim for about 1 year, she's decided on an Alaskan cruise.  We've heard from our good friend Mama Cozz and her family how incredible it is!  So, the day after Abby's 13th birthday, May 25, we're headed to Seattle to board the ship!  We have a long time to have to wait, we'll have to be patient, but that is one thing that we've learned through all of this!!  There are some amazing excursions that go along with the cruise, it's going to be hard to choose which one's we'll be going on, but I think the zip line adventure through the rain forest is a sure thing-I'll just have to convince Abby :)

I've had a lot of questions about the donor family, everyone is curious if I know who gave Abby the gift of life.  I wrote my letter to the family a couple of months ago, but I haven't heard anything back.  My letter was given to our transplant team, then passed on to Intermountain Donor Services, and then given to the family. The family of the donor then chooses whether or not they want to contact me.  I am curious, but I also know that if it's meant to be, I will be contacted.  There might be a reason that we haven't heard anything, and I'm okay with that.  Maybe the family just needs more time, or maybe it's a situation that I just wouldn't want to know.  It's okay, I'm okay with this.  I will forever be grateful to them and think about them daily-whether I know who they are not, they are the reason Abby is alive today.

One thing that I've learned this week, is that there is nothing more frustrating then dealing with insurance companies and pharmacies.  I've spent more time on the phone this past week then ever before and it's making me crazy.  It seems like no one does their job or know what's going on.  I completely lost my cool, and I rarely I do that!  I finally even said to one poor lady that their company was completey incompetent and horrible at communication and then I asked if I could please talk to someone, anyone, that actually knew anything about insurance.   I wish I could hire someone to make all the phone calls, pay and figure out all my bills, and make sure Abby has all of her meds when she needs them, so I can just take care of my family.  Between Britt's 3 surgeries and all of her physical therapy, Mine, Brock's and Britt's echos, and everything that's happened with Abby this past 5 months, it's just a big mess.  It almost makes you just feel like just giving up and saying, "go ahead, take everything I have and just leave us alone!!!"  Frustrating.......just frustrating.

We've been home for almost 2 weeks now, and being here is helping me remember some of the great things that were done for us when we were in Salt Lake.  I'm starting to be able to sort some of those things out in my mind and I know that I didn't thank many of you for your support and prayers, especially things that were done right in the beginning.  Please know that we are grateful, it made things easier for us, we do appreciate you.  I feel bad that I didn't keep up with things better, so if I haven't thanked you personally, I'm sorry, please accept this thank you.

One of the greatest moments of this week was last night, as we were driving to Vegas to see Phantom for Britt's belated birthday present.  I was sitting in the front driving, and just listening to my three kids in the back-laughing together, singing together, just talking and enjoying each other.  It was a complete feeling of contentment.  It made me stop for a minute and remember how lucky we were to even have that time, things so easily could have gone the other way.....really should have gone the other way.  I will always be grateful for times like those. We are one lucky family. 

Monday, October 10, 2011

It's Monday and we're not at PCMC???

Today is the first Monday in almost 5 months that we haven't spent at Primary Children's!!  Wow, it actually kind of felt weird.  We did, however, have to go to Dixie Regional for some labs.  We're hoping that Abby's white blood count is finally up....this house arrest is really getting to us!  Plus, her Celcept and Prograf levels were a little off last week too, so after some medication adjustments, we'll hope they're back in the perfect range!!  The amazing thing that happened today was that it only took one poke!  Abby is almost always a 2-poke blood draw kid, but not today.  It was a little funny, after we had been sitting in with the lab technician for about 10 minutes, just chatting, she stopped and said, "'re the girl that collapsed in PE last May aren't you???"  Then she just stared at us with her mouth hanging open and kept repeating, "Dang!!" over and over again.  Abby and I got a good laugh out of that!  It was so nice not to have to drive up to Salt Lake this week, I actually feel like I've had time to finally start recovering!  We will have to go back for Monday morning clinic, but we won't leave until Sunday afternoon and we'll come back right after her appointment on Monday.  I can handle every other week, that works for all of the Doman crew!

So, what have we been doing this past week, since we've been back home?

-Unpacking and moving in.  This took a lot of time, because I felt like I had to clean everything before I put it away (remember my germ obsession?)  I really just wanted to throw everything we had away and start over, but financially, this wasn't a smart idea, so I cleaned everything.  I did throw lots of stuff away and sent it to the DI.  I realized we had a lot of stuff that we didn't need, so I just tossed it.  It felt good.  I'm still not done with every closet and cupboard....but we're getting close!
-Visiting with friends.  Thank you to everyone that has stopped by to see us!  It's been fun to catch up with you and find out what you've been up to the past 5 months.  Everyone knows what we've been doing, but we don't know what's been happening with anyone else.  Thanks for bringing us goodies and notes too!  To those of you that have been sick or around sick people, thank you for not stopping by....we really appreciate that.  Thanks to everyone for making us feel so welcome and loved.  It is good to be home!
-Keeping Abby caught up in school.  She's getting bored, I think she's realized that school really isn't fun without friends.  She's counting down the days when she can be back in school, November 7th can't come soon enough. 
-We did break the house arrest rules and we went to church yesterday.  We had to because the bishop called Abby up to the pulpit in sacrament meeting to announce that she's moved in to young women's.  She turned 12 last May, but since we haven't been around, she hadn't officially moved up.  It was pretty amazing to see her up there, I saw quite a few teary eyes in the congregation.  Considering everything that we've been through, this was a big deal!
-Watching Brock play football.  Desert Hills is tied for 1st in the region, and with Brock playing both JV and Varsity we're spending lots of time watching games....and I love it!  This has always been one of my favorite things to do, I have always loved watching my kids play sports, but with Britt out with her knee problems and Abby out with her heart problems, I've really been missing it!  I can't wait until I can go watch them all play again!
-Enjoying the simple things.   Sitting down for dinner together, watching tv, helping each other with homework, having the kids' friends over for lunch during school,  roast marshmallows and make smores, going out for icecream, Sunday dinner at grandma's house, my  morning workouts, being home when Britt and Brock go to school, shopping at Costco, working in the yard (I haven't gotten to this yet, but I will soon!), playing or snuggling with the dogs, etc.

Things are good.  Life is beginning to feel more and more normal.  I have 3 weeks to get myself ready to go back to school, and 4 weeks to get Abby ready.  One thing that I've realized this past week is that I wish I hadn't taken my life before the heart transplant for granted.  Things that didn't really matter, used to seem I know better.  I look at how easy things used to be, and I wish I would have realized this at the time.  I guess it's just a matter of stepping back and putting things in perspective.  Although we will never have that "easy" back, things can still be good now.....and they are.

Tuesday, October 4, 2011 last, and it feels good :)

I am typing this from my own couch, in my own living room, in my own house, and it feels good.  We are finally home.  I know I went a whole week without a post, last week just wasn't a good week.  Have you ever had those weeks when you just don't feel like anything is going right?  I had one of those and I couldn't think of anything positive to say on the blog, so I just didn't say anything at all.  I think with Abby being on house arrest, plus the anxiety I was having about her cath/biopsy yesterday, plus she was feeling sick all week, plus the stress of trying to get moved back in our house and out of our Sugarhouse house, it was just a little too much and it threw me into a funk; but I feel so much better now!!

Yesterday was a good day.  The docs told us that Abby's cath looked amazing, her pulmonary hypertension is much improved.  She also had a clean biopsy!  They decided that last week she probably just had a little stomach virus, but she's feeling better now.  Her whilte blood count is still low, that was the only bad news, so we're back to house arrest.  We just can't have a lot of visitors until it gets back to the normal range! This is hard for Abby, she just wants to be with her friends!  We get to be in St. George all the way until her clinic visit on October 17th....almost 2 full weeks!!!  Abby loved pulling into our driveway today and seeing the balloons and banners on the garage and the front door!  Big thanks to grandma and Meri and Rich and the kids for that!  I was lucky enough to come home, drop the kids off, and go to a party with my friends!  I needed some time to do something for myself and it was so good to see friends and just to have fun and some adult conversation for a while.  It was the perfect welcome home!  I have to say that we experienced another miracle this morning when I was packing the car.  There was no way that the stuff we had left to pack was going to fit in my car, there was just too much....but somehow, it fit.  There wasn't any extra room at all, it just fit perfectly!  Thank goodness because I don't know what we would have done if it hadn't.

I'm so excited to be home, but there are many things I will miss about Salt Lake.  I will miss the security of having PCMC so close, I trust them there now, they know Abby and what she's gone through.  I will miss seeing all of our "heart friends."  You all better stay in touch, we will miss you.  I will also miss seeing my friends and family there.  I've gone to lunch many times and had the opportunity to visit with many of my old friends, aunts and uncles and cousins. Lots of people I haven't seen in a while.  I will really miss you, please call whenever you're driving through St. George....and it's not like we will never be back to Salt Lake, we'll still be there every two weeks!  I'm just glad we missed the snow and cold, I hate that!! 

I feel like we are now beginning the next step in our journey.  Yesterday, all day long, I couldn't help feeling anything but gratitude.  I'm so grateful for the doctors and the transplant team for understanding my need to get home as soon as possible.  We were told that we wouldn't be able to go home for 4-6 months after the's only been 2 1/2 and we are home.  I was also feeling so grateful for Abby's donor family.  I think about them every day, and even if they haven't chosen to contact us yet, I know that if it's meant to happen, it will.  I'm still so grateful for the timing with all of this.  I am home and still have about 3 weeks to heal and get settled before I need to return to work.  I need this time, I'm not emotionally ready to teach school yet, but I can be by November 1st.  I'm so grateful for Abby and Brittany and Brock-they are amazing kids and have been so strong through all of this, I can't help feeling like just sighing and saying, "we made it!"  I'm grateful that I no longer ask why this had to happen.  I've realized that it is probably something that I won't understand in this life, but someday I will know.  I also know that the growth my kids and I have experienced the past 4 1/2 months is necessary, it has a purpose....this too will be revealed in the future.  I'm grateful that every time I've felt like I've been pushed to my breaking point, that even just one more thing will be too much,  I've been reminded that I'm not in this alone, He has been there every step of the way and knows how much I can handle.  I have a lot to be grateful for.  Every day we have with Abby is a gift, in fact, every day we have at all is a gift.  I hope I can always live my life remembering to be grateful for that gift!  It's good to be home, it just feels good.