Then He said, "I'll see you again in four years......"

This last week, Abby finally had a perfect clinic, perfect, like EVERYTHING looked good!  Every single thing!  Her echo, her blood counts, her labs, everything!  It was so nice for a change.  In fact, I think it could have been one of her first perfect clinics!  It's about time too.  It's been 20 months since her transplant, we were due for a perfect clinic.  Dr. Everitt wanted her next visit to be her annual biopsy in June, but I had to nix that idea.  We won't be doing her annual until after our Hawaii trip the first week in June.  So, we'll just return for a clinic visit a few days before our trip.  I just want to make sure that everything looks okay before we leave for a vacation.  We'll be doing her annual the first week in July instead.  The transplant team didn't want to make very many changes since things looked so good.  The only change is that we're lowering her prograf level(anti-rejection meds) to between 5 and 8 rather than between 8 and 11.  I guess this is standard for the second year post transplant.  It makes me a little nervous, but I always trust her transplant team will do what's best for Abby.

And now for the thing I've been hesitant to write about, but I feel like I should.  Last month I was going to teach a lesson in our young women's about finding comfort when a loved one dies.  I thought it would be perfect to have Abby talk about her near-death experience.  I was a little nervous to ask her to do it, because in the past she was nervous to talk about it to anyone but family.  But, she said she wanted to do it!  Our plan was for me to give the background about her transplant, then for Abby to read her experience, then to let the girls and other leaders ask questions.  Abby didn't want to just teach them, that made her too nervous.  We talked for a while about everything that had happened to Abby since May 18th, then Abby started to read what she had written about her experience.  She made it about half way through and then the tears started falling.  I think by that point everyone in the room had tears in their eyes.  I helped her finish reading and then she asked if there were any questions.  I couldn't believe how quiet it was in that room.  I don't think that anyone knew what to say, it was just too much to take in and they had to think about it for a minute.  Finally, after a few minutes of silence, they started to talk and ask questions.  Abby was completely calm and confident in everything that she had to say and the girls listened to every word that came out of her mouth.  It was actually a very spiritual experience.

Near the end, as Abby was talking about some of the things that Christ said to her, she said something that I had never heard her talk about before.  Something that I kind of wish I never would have heard her say.  She very peacefully said that while she was with Christ, one of the things that He said was that He would see her again in 4 years.  WHAT????    She went on to say that now she was now almost to the halfway point.  First of all, I couldn't believe that she said it at all, then I couldn't believe that she hadn't ever told me that little fact.  I had the biggest lump in my throat, but somehow made it through the rest of the lesson.  I didn't know what to think, and I couldn't believe that Abby could be so calm about it. As soon as we got in the car I asked her more about it.  She said that she had told Britt about it and that they decided that it was better for me not to know.  They thought it would scare me too much, and they were probably right!  When I asked Britt about it later that night, she said that Abby had told her about it one night.  I asked Britt if Abby was upset about it, but Britt said that she wasn't at all, she was just very matter of fact.  It's just what  He said.

I've been throwing this around in my head for last couple of weeks.  It took me a long time to tell anyone, I think that I was afraid that if I talked about it, it would make it more true.    It's definitely shocking, and not something that any mom should ever have to think about.  I didn't know what to do with the information that was given to me.  I now know that even though this will always be in the back of my mind, I can't live my life in fear of what could happen in 2 more years.  Abby doesn't want to live like that either.  I've convinced myself of the fact that time in heaven is much different than time on earth.  Four years to Christ could be a lifetime for us.  Am I still scared??  Yes, but I was scared before I learned this anyway.  Living with a child that has had a heart transplant is already living with the unknown.  I already knew that things could change at any second.  Abby's heart transplant didn't "fix" her, I know that.  So, what do we do now?  We continue living our lives like we already do.  We remember to be grateful for every day and for the little things that happen.  We focus on the good and try to live each day like it's the last.  We spend time with the people we love and we appreciate every last second that we get with Abby!  Hopefully, there will be many, many more....I'm counting on it.

One whole month without a post, no way!

I can't believe that I haven't had to post anything for one month, I think that's the longest we've gone since May 18th, 2011.  You know what that means?  Things have been good, much better.  A few weeks ago we  had a major bout with the stomach flu around this house, Abby started it, then it went through all of us, and Abby still had it.  It took her so much longer to get over it than the rest of us.  I think she thought it was awesome that she passed something to us this time rather than the other way around!  Other than that, Abby has been feeling better.  Her legs haven't gotten swollen since we changed her meds back, now they just turn bright red and become burning hot, like mini heaters.  Sometimes they look like this, mine is the normal colored foot of course.  It's weird because sometimes it goes all the way up her legs, but sometimes just to her knees.  The transplant team asked her to keep a "red leg diary" to see if we can determine what's causing it.  So far, it's just random......just weird.

Her Prograff (anti-rejection med level) came back really high last week too, so we cut back the dose this week and she goes for another lab draw tomorrow.  Abby's creatinine level is still high, but we're still working on pushing the fluids to keep those kidney's healthy.  The only thing I still worry about Abby is her energy level.  She will have one great day where I think she's feeling good and doing great and she has lots of energy, but then the next day she'll sleep most of the day.  It's like it just exhausts her.  It makes me worry, but I'm just trying to make myself think that it's just because she's still recovering from the past year and half.  She has gone through a lot and might just be taking her a little longer to recover.  I won't say that I'm not nervous about her annual biopsy that's coming up in June, I already feel the anxiety.  We decided to push the biopsy back until after our trip to Hawaii, sometimes it's better not knowing, right??  For now, we'll just keep plugging along until clinic on April 8th.  Another thing that worries me a little bit is that in May, since it's been 2 years, Britt and Brock need to get echocardiograms again too.  Just another little thing to stress my little brain.  I will be relieved when their echo reports come back normal and Abby's annual biopsy comes back showing no rejection and and no coronary artery disease!

A couple of weeks ago, Abby and I were able to spend some time volunteering at the Dixie Regional Health Fair at the Intermountain Donor Services booth.  It was a great opportunity for Abby, it was fun for me to hear her talk about her story and to promote organ donation.  We had to laugh at a couple of the old people that came up to us and said, "I'm not a donor, I won't be a donor, I don't know why, but you won't change my mind!"  They couldn't think of any good reasons, they were just against it.  I think that they're too set in their ways to want to change, even though they know it's the right thing to do.  Abby also got to meet another heart recipient.  Dan Martin received his heart only one year ago.  It was neat to hear them compare what they've been through.  I also enjoyed hearing the unique perspective on life that they both have.  They know what's important and how to truly live their lives.  It was a great opportunity for Abby and I hope we have many more chances to give back.  Big thanks goes out to Jordan Woodward who chose to do his Eagle project on promoting organ donation and made it possible for us to have a booth at the fair.

Britt and Brock have both been doing great.  We're all trying to get in shape for Hawaii, so we're working hard.  Brock was so frustrated at his last ankle appointment though.  Dr. Leitze told him he can't do the shot put or discus this year, he doesn't want him putting that much pressure on it yet.  It's been hard for Brock because it feels so good that he thinks he's ready to go full speed ahead.  I think they're being very cautious, the goal was to be ready for the first football camp the end of May, and I think that's exactly when he'll say it's time.  For now, it just frustrates Brock.  Britt is still working hard and doing well at school.  She's been learning all about the heart in her anatomy class this past couple of weeks and she took in the pictures of Abby's old, sick heart and us holding it.  The class thought it was awesome!  Whenever I think about it, it reminds what a surreal experience it was, something we'll never forget.  

Thanks to our friends the Brickey's, I found a company in Salt Lake that's going to help me publish my book.  It's at the copywriters now.  I should get it back next week, then I send it on to a graphic design company.  I'm still working on the cover, I have a couple of ideas, but I haven't settled on anything yet. I think it would be great to have it ready to go by Abby's 2-year anniversary on July 12th.  That might be pushing it a little, but I'm not sure.  I'm trying to think about things step at a time, otherwise, it gets a little overwhelming.  I can't wait until it's ready to sell, I have lots of good ideas about promoting it.  I still can't believe that it's really going to happen!

We just got done with our spring break, and it's back to school tomorrow.  We had a great break filled with lots of fun, relaxing, and spring cleaning!  This spring break I learned that:

- as a family we stink at bowing (Brock is the worst, a total score of 44 is pathetic).  Abby was so excited she beat him, with a whopping score of 45.

-it's worth it to drive to Salt Lake for my sis-in-law's baby shower, even if it was only a 1-day trip.  It was fun to see and catch up with everybody!

-Abby is a major procrastinator.  She's finishing up some science homework right now.  She's had the assignment for how long??  Maybe 2 weeks, arggghhh.  (Sorry Rich-Abby's teacher and uncle!)

-Britt is obsessed with getting perfect grades and will not settle for anything less than an "A".  She's so determined and when Britt is determined, don't get in her way.  Even if it is spring break.

- I was rundown and tired and in need of good rest.  The break was perfect for me, hopefully it will sustain me through the rest of the school year.

-My mom stinks at hearts......actually, we already knew this.

-Brock needs money.  He will do almost anything for money.  He can't find a job, but he likes to go do things on dates and with his friends, and he is in desperate need of money.  If you need anything done, call us.  I'll hire Brock out for a day....or lots of days.

-We HAD a lot of junk in our house.  But, it's all gone now!  I love spring cleaning.

-We like to play games.  Settlers of Catan is our new favorite, but it's not fun if you win every time so sometimes you have to let others win too (right Meri and Rich and mom and Britt?)

-The greatest feeling is when Abby's med cases are filled for the next 2 weeks and all of her prescriptions are full too!

- We are ready for summer break......always

-We still make fun of Britt and how she talked when she had her tonsils out.  If you still can't figure out what it sounded like, go see the movie Jack the Giant Slayer.  She sounded just like the 2-headed giant's second head.  Sorry Britt, we just can't stop.

-I ran out of time.  I got my house done, but need another week for my yard!  Thank goodness for weekends.

We did have a good break.  I can honestly say that our house is cleaner now than when we moved in, and that feels good!  When I was cleaning out drawers I came across a pile of cards and letters that people gave me right after Abby's collapse.  If I didn't thank you then, I'm sorry.  We had so much support, and I know that's what helped me get through those first few weeks.  Reading through those notes made me cry.  We are so very blessed to know so many amazing and thoughtful people.  Thank you for being there and for helping us.  I know that many of you still think about and pray for Abby and my family and we will always be extremely grateful for that.  We've definitely had a rough couple of years, I think we've had our share of trials, but we still feel so grateful for who we are and for the blessings that have been given to us.  

Hopefully, I won't be posting again until after clinic on the 8th.  Last year at this time Abby came down with CMV and she spent 2 weeks, including Easter, in the hospital.  Good thing we can cross that off the list :)

Clinic (last) Monday....I forgot to post!

Abby just informed me that I forgot to do a post after clinic last week and that I needed to get on that, so here goes..........

We did go to clinic last Monday.  Abby and I both felt like her blood counts were still going to be low and that they would have to do something about it, so we packed our bags for more than just one day (we always do this, but this time we were more serious about it.)  Abby's echo looked great...that is always a huge relief, but her labs came back with low blood counts, both white and red, again.  Because they had slightly increased from the previous lab draw, Dr. E told us that we weren't going to do anything to treat it, we were just going to keep our eye on it.  Abby will have another lab draw the beginning of March and we'll keep our fingers crossed that things have turned around.  Abby doesn't have to be on house arrest, she just needs to be extra careful.  Lots of sanitizer and hand washing.  I think we both almost fell off our chairs when Dr. E said that if things look good with the lab draw in March, we won't have to go back for clinic until April!!  Almost 2 months, that is our record for sure.  I think that the longest amount of time that Abby has gone between visits is 6 weeks.  We were out of clinic and back on the road to St. George by 10:00, it was awesome.

So, this past week Abby had the okay to go to school, the problem was that she didn't have the energy to go.  I think it was because she's anemic, but I don't really know.  She went a couple of days in the morning, but that was it.  The other problem was that they took Abby off of one of her blood pressure meds to see if it would help bring her white blood count up.  But, the day she went off of it and every day she wasn't taking it, her feet and legs would turn red and get swollen and really hot again.  They were hurting her so bad that she couldn't walk very well, and it was very uncomfortable.  When we were at clinic, Dr. E decided that we had to put her right back on that med, but it took 5 days of taking it to get the swelling to go down.  Weird, I know.  It's baffled all of the doctors.  It's just a weird problem that Abby has that has no known cause.  Luckily, the past couple of days has been better.  The plan for tomorrow is for Abby to finally go back to school!  Yahoo!!  That will make everybody happier.

One funny thing about school that happened a couple of weeks ago was that we met with her teachers and school counselor to officially write up Abby's 504 education plan.  We talked about some things that we could do to help Abby if she needs it, and the counselor asked about her being able to participate in PE.  I told them that Abby was completely able to go to PE classes, but I guess that the teachers are too nervous to have her in their class.  I guess it would be pretty scary since her heart did stop beating and she collapsed in PE and people just don't know what people with a heart transplant are capable of doing.  They also mentioned that the other kids were probably still pretty shaken up as well and it could scare them too.  Many of them were in the gym when Abby collapsed and they saw her on the floor getting CPR.  So, for now, unless we find a gutsy PE teacher, Abby is exempt from taking gym classes at school.  Abby said that she didn't care about that, but I have mixed feelings.  Since it's such a little thing, I'm just going to let it go.  It really doesn't matter as long as it doesn't make Abby feel different.

Other than that, things are good.  We had a sweet 3-day weekend full of lots of friends and family and fun.  I wish we could have a long weekend every week!  The weather in St. George is finally starting to  feel like spring.  I can't wait until it's hot down here, I love it!  Brock had another appointment with the surgeon that fixed his ankle and he said that things are looking good, he's even ahead of schedule. He's already started getting ready for football next year.  My book is written and edited and ready to be published, I'm just trying to figure out who to send it to and how to go about taking the next step. It will happen, it's just taking me some time.  We're all looking forward to spring break in March, and Hawaii the end of May. Things always look brighter when you have something to look forward to :)

Brock's birthday and bad news again!!!

Tomorrow, February 6th is Brock's 17th birthday.  17, wow I can't believe it.  For those of you that have never had the chance to meet Brock, I wish you could.  He's one of the greatest kids ever!  Everyone that knows Brock, loves him, he's so personable (except on the football field anyway!)  I love it during school when I get a text from Brock, because I just never know what it will be, but it usually makes me laugh.  Sometimes it's just a "funny" joke.   Usually, it starts with "Guess what?"  and then he won't tell me until I text back, "What?"  Or sometimes he just sends me pictures like this one:

How can I not laugh when I look at my phone during a break and see Honey Boo Boo's sorry mom looking at me?   Brock loves to tease his sisters and me, but he's really just a sincere, nice kid.  He knows how to work hard and be dedicated, he's played sports since he was 4 years old.  I can't even begin to write about how many all-star teams and championship teams he's been on.  He just loves to be on the field competing.  Another thing about Brock is that he's got a natural ability to lead, people always tend to follow Brock and they look up to him and watch for his example.  I'm proud to be Brock's mom, I know he can do whatever he wants to do in life....and he was so cute when he was a little kid that I just have to add some pictures.

Kindergarten

This was Brock's first year playing football, he's 8-years-old.

Happy Birthday Brock!  For his birthday he wanted his own football helmet with a sweet face mask, and his own personalized cleats.  He's going to be so ready for football next year, he already can't wait.  His ankle is healing perfectly.  Physical therapy is really helping, in fact, he feels like he's ready to run on it again, but that's not allowed for a couple of months still.  Luckily, he can be doing lots of other things to stay fit and get stronger.   He should be 100% by the first football camp of the season!

Britt's tonsils have almost completely healed too.  She hasn't had a sore throat for almost 6 weeks, which is probably a record!  I have to laugh at Britt because she's such a good student, she works hard and always does well; But, for the past few weeks she's been constantly complaining about how horribly hard her chemistry class is this semester and how she just doesn't get it, and that it's too hard, and that she needs a tutor, etc. etc.  Then she takes her first test and gets a 91% on it!  Whatever Britt, I know you'll always do well.  I can 't wait until she's in nursing school, she's going to love it.  

Abby survived her Neupogen injections.  It was 5 rough days, they just make her so achy.  It was hard for her to be on house arrest and not go anywhere for that long!  But, last Wednesday we got the word from the transplant team that they did their job and her blood counts were almost right where they needed to be......until yesterday anyway.  Abby had labs drawn again yesterday to see if they were maintaining, and unfortunately, her blood count was right back where it was at clinic at couple of weeks ago.  Not good.  Thankfully, they don't want to do more shots yet.  We're going to try to make a few changes in her meds to see if this will help.  Personally, I don't feel like this is the problem, I think that there's something more going on, but what do I know??  The other problem is that the shots gave Abby a rash on her face, we're still trying to figure out what to do to make that go away!  Abby goes back to clinic on Monday and they'll draw labs again then.  If they still haven't come up, I'm not sure what the next step will be.  For now, Abby is on house arrest again.  It's discouraging for her, she was just trying to get back into school and going to the gym again.  

Britt giving Abby her shot.  She had to fill in when my dad and sister were gone.  There was no way that I was going to do it, I have to draw the line somewhere!

Cute Abby, her color isn't looking the best, but she's been feeling okay!

This is my sister giving Abby her shot when my dad was gone.  Thanks Meri!

I  absolutely hate leaving her everyday when I have to go to work.  Sometimes she spends the days with my parents, which is good, but she wants to be at school with her friends. It makes me sad.   I guess we'll have anther stressful week of waiting.  I was talking to the transplant team a couple of weeks ago about how after a transplant, most families eventually begin to somewhat "normalize."  Things are never completely back to normal, but they start to get back to some kind of a routine.  But, they were saying that because of all of the crap Abby has gone through, we still haven't been able to get to that point.  I think that's true.  It seems like every time we get to the point of doing our regular things, something happens.  I have to admit, it's not easy.  Not for me, Brittany or Brock, or especially Abby.  It really starts wearing on you.  I seem to wake up in the morning as tired as I am when I go to bed.  I've been trying to go to the gym at 5:00 most mornings before school, but it's hard.  Some mornings when my alarm goes off, I really question whether I'll be able to make it through the whole school day if I get up that early.  It seems like there's always something to worry about, we seem to trade one set of problems for another.  I know everyone told us that after the first year things would get easier, but maybe they meant to say after the first year and half!  That's what I'm counting on anyway!  If you have any new ideas to keep Abby busy for the next few days, let me know, I'm sure she's already bored.

Sometimes when things seem like they're perfect, they're really not :(

     We just got back from Salt Lake, and I agree with everyone that has been posting about how cold it is there.  Yes, it is cold, very cold.  We also got to be a part of the ice storm today, luckily, we were already at clinic so we missed all the fun on the roads!  When we walked, or more like skated, out to our car after clinic, it was covered in a thick layer of ice.  I've never seen anything like it before!  Thankfully clinic lasted long enough that we didn't have to be a part of the mess on the roads.  The drive home wasn't too bad, lots and lots of rain.....but we can handle rain!!

     Now to talk about clinic.  This was the first clinic, in a very long time, that we were certain would be perfect.  Abby has been feeling so good lately.  She's been going to the gym and running and going to school all day.  She also hasn't had any swelling in her feet and ankles for almost a week now.  We have had almost one full week of "normal" around here, and it felt good, really, really good.  We felt so confident that they would say that everything looked great and to come back in 6 weeks.  But, as we're learning so quickly, things aren't always as they seem in this transplant world, it can be very deceiving. Abby's labs came back showing that her white blood count is extremely low, too low to just wait and watch and see what happens.  Low enough that it has to be treated, and that's the crappy part.  She's extremely neutropenic.  For now, Abby is back on house arrest.  She's not allowed to go anywhere for at least 5 days, possibly more.  She just doesn't have anything to help her fight a virus or anything else that she could so easily catch right now.  Not only is she on house arrest, but she also has to start Neupogen injections again.  We went through this last April when Abby had CMV.  The Neupogen stimulates her bone marrow to make white blood cells, and it makes her ache all the way down in her bones.  Abby said there has only been one thing more painful than the Neupogen shots, and that was getting her chest tubes taken out after her transplant.  It was bad enough that she asked the transplant team today if they would admit her for the next 5 days so they could give her the medication through an IV, because that's less painful.  With all the sick kids and germs up there right now, I knew that wasn't a option.  I know that the transplant team felt so bad that they had to give her the news because when Abby started crying, they looked like they were going to as well.  It broke my heart to see her tears.  I know it wasn't just because of the injections either, she was just discouraged too.  It's hard to think that things are going so well and then to get crappy news thrown at you.  Not only does Abby have Neutropenia, she's also slightly anemic as well.  This is something we're just going to have to watch for now and not treat.

      So, the big question is, what's causing her to have a low white blood count?  They decided they wanted to run some more labs to try to determine the cause.  We got to visit the "Suction Shack" for the first time ever today, and we thought we knew that entire hospital!  Abby didn't have to get suctioned, but they did stick a thing way up her nose.  It was pretty gross.  The results already came back, and they were negative.  It tested her for all of the most common viruses.  It sounded to me like Dr. Molina was thinking that it could possibly be CMV again.....ugh.  This makes sense because this is exactly what happened to her blood count when she had CMV last time.  But, for now, we're just going to give the injections for the next 5 days.  Then Tuesday, she'll get some more labs.  At that time will test for CMV and EBV as well as see how much success were having with the Neupogen.  We also have to watch very closely for any fever or other sign of infection.  We have to call immediately if we see anything, that would probably be a sure ticket to being admitted.  Even if things start looking better, we will still have to go back for another clinic day in 2 weeks.  I swear they promised we were going to start spacing our clinic days apart, I think we're supposed to be up to 3 months in between!  Unfortunately, I don't think we've ever gone more than 6 weeks.  Oh well, why would we ever want to just stay home and relax a little bit and have things be easy??  That would be boring, right??

Yuck, 5 days of Neupogen injections.  Not fun at all!

Thankfully my dad will give her the shots.  I just can't do it.  Day 1=complete, only 4 more days to go.

Justin Bieber Concert by Britt and Abby

Hey everyone! This is Britt and Abby. We just wanted to do a blog post about the awesome concert we got to attend. Yes, this amazing concert was by Justin Bieber. It was probably the greatest thing that Abby and I have ever witnessed. So, here are the memories that we will never forget.

On the drive up to Salt Lake we were so excited! By the time we arrived I think we listened to his album 5 or 6 times. We got to the Energy Solutions Arena and waited in line to go inside. It was freezing! But we didn't care because we were so stoked to go see the Biebs (Justin Bieber.) We finally got in the doors, and we started looking for our seats. We walked around the entire place and then realized our seats were on the second floor. So, once we figured that out, we decided that we definitely needed some souvenirs. The lines for these souvenirs were extremely long. Abby and I couldn't believe all the people there! But we decided it was well worth the wait. So, we got in line. When we finally got to the front, Abby decided she wanted to get a hat and jacket that both said the word swaggy on it. So, I got the opportunity to order a swaggy hat and a swaggy jacket. It was great. So, we got those swaggy items, and then went and found our seats. Well, what we thought were our seats. We sat there for a while admiring the stage, and watching all the crazy teenage fans. Then some of Abby's friends came and said hi, and they were just as excited as we were! Then Carly Rae Jepson came on stage! She sang a few songs, and then she sang her most popular song, Call me maybe. Abby and I were singing along, and having a great time. Then she ended, and said that Justin Bieber would be on shortly. When she said Justing Bieber, you would not believe the sound level of the screaming fans. It was insane! But, of course, Abby and I were also screaming our guts out.

After Carly Rae Jepson got off stage Abby and I realized we were in the wrong seats! So, we went and found our right seats.. which were closer than the other ones, so we were happy! Then we waited for the Biebs. We got some cotton candy and ate that while we waited. The crowd also did the wave.. for at least 15 minutes. Then the 10 minute countdown started. Every time the minute would change, the stadium would scream. Abby and I were ecstatic. Then the time ran out, and Justin Bieber was on the stage. We were in awe. It was Justin Bieber! We both agreed that he was even more attractive in person. We listened and sang along to his first song. We were in shock that we were actually seeing Justin Bieber in concert! It was amazing! The stage was also very cool! This was our first concert, so everything was new to us. For me, the craziest thing was how loud it was!! There was always some sound going on. Abby kept saying that she wanted to be "The one less lonely girl."  If you don't know what that is, it is when Justin Bieber picks a girl from the audience to go up on stage, and he sings a song to her. Abby did not get picked but I told her it was because Justin wanted to serenade her without all these other people watching. haha. The concert went on, and we sang and danced, and listened. It was some of the best hours of our lives! We were literally smiling the entire time. It was a blessing to me to be able to see my sister so extremely happy. We are so thankful for the Cook family who donated the tickets to us. Thanks for giving us this opportunity.

Christmas, updates, clinic, and tickets

     Ahhhhh, Christmas, I love Christmas......it's always such a bummer when it's over!  Despite Britt's sore throat from her tonsillectomy, and Brock being in a wheelchair, we had a great Christmas.  Thankfully, Abby was feeling good too!  We were able to do most of our regular Christmas traditions, and then we even added a few more new ones.  This is the first year......ever..... that I haven't given any neighbor gifts or friend gifts, I just couldn't get it together enough to get it done, and a Christmas card just wasn't going to happen this year either, but that's okay, we did what we could.  Even though it was a pretty small Christmas, we as a family, knew that we had a lot to be grateful for.  The holidays always make me feel so thoughtful, yet curious, about Abby's donor family.  I can't help but wonder who they are and how they spent their Christmas.  I hope they were able to feel some peace through the holidays.

Abby and her cousins loving the chocolate fountain I bought for my mom and dad , it definitely was a hit for everyone!

The traditional nativity.......kind of anyway!!  We even tried to get Maggie involved, she was disgusted with all of us!

Update on the kids:

Brock went to his post-op appointment last week.  Dr. Leitze said things were going as planned.  He took the splint of Brock's ankle and then told him to try to move it around a little bit.  This was too much for Brock, unfortunately for him, he has the same weak stomach as me.  He went completely pale and broke into a sweat.  We thought he was going to pass out for sure, but he hung in there.  He's still not allowed to put any weight on it until at least January 14th when he sees the doctor again.  The crutches and wheelchair were tricky the past couple of days while we were in Salt Lake in the snow, but he managed without any falls!

This is what it looked like when the doctor took the splint off,  maybe you can understand why Brock was feeling queasy!

Finally today, day 14 of the tonsillectomy, Britt is feeling better!  It has been a rough 2 weeks though, she has been feeling really crummy every single day for 14 days.  It was miserable, just like everyone told us it would be.  Britt was great though, she was so tough the whole time, even when we were all making fun of how she's been talking.  Just in case you're wondering, it sounded a little like Young Frankenstein in this song http://www.youtube.com/watch?v=co6-tYS9k1U or like the guy with his tongue pierced in the movie Rat Race, listen here, just start the clip at 1:00 http://www.youtube.com/watch?v=JeHrARnPfOs (this is one of my favorite clips anyway, a hilarious movie too, you should watch it if you haven't before!) Yes, we couldn't help but tease her, my brothers especially enjoyed the teasing, it was just so hard not to.  But really, she was such a good sport and I think that finally today she's made the turn around and is almost back to feeling really good again!  Unfortunately, she wasn't feeling good enough to come to Salt Lake with with the rest of us, so she just hung with grandma and grandpa while we were gone.  We sure missed her though.

This is the back of Britt's mouth when she was able to open her mouth again.  Pretty gross, but the scabs are all gone now :)

Abby had clinic today.  I wasn't very excited to have to go to Salt Lake, some down time at home sounded pretty good to me, but it was time, so we knew we had to go.  We ended up leaving on Christmas night because of the storm that was coming in.  Clinic wasn't until Thursday morning, but we had to be up there by Wednesday at 4:00 to meet some amazing people!!  A few weeks ago, I got a call from our social worker at Primary Children 's.  She knew we had been going through a rough time and that Abby had had a hard year, and was wondering if Abby would be interested in some tickets to a big event in January.  A family had purchased some tickets and had decided to donate them to a patient at Primary Children's that was feeling well enough to use them, luckily for Abby, Julianna had thought of her!  I said that of course she was interested, I think that Abby really needed a boost.  So, yesterday we were lucky enough to meet the Cook family and they gave Abby her gift.  What great people they are too, I don't think they could even realize what their gift meant to Abby, it was amazing!  Sometimes, it's the unexpected things that make all the difference!

What an amazing family-thank you for making Abby so incredibly happy!

Here's the tickets!  I don't think there's anywhere in the world that Abby would rather be on January 5th than watching JB in concert!!

Abby hasn't stopped talking about it since yesterday, she's so excited!  Brock and I are both shocked that we weren't the people that Abby invited to go with her, she decided on Britt instead!  The two of them are going to have the greatest time ever, we promised to take lots of pictures and post it to the blog.   I'm so grateful for people like the Cook family.  We've been so blessed to meet many selfless people the past year and a half, that's the greatest part of what we've been going through.  We get to see  the good in people, and we get to be a part of their lives.  We are grateful.

Clinic went well today.  Abby's echo looked great and her heart sounds really good.  Her labs all came back looking good too!  As for now, we aren't making any changes in her meds.  The only thing that's been a problem recently is that the swelling in her feet has gotten worse, last night was the worst it's ever been.  She said it felt like needles were stabbing her in her feet.  I took a picture to show the transplant team today.

 Notice the left ankle especially, it's been getting especially huge, and look how red her feet are too.  Since her pressures in the cath lab have been looking good, The transplant team has a few other ideas about what might be going on and they are going to do some research and talk to a couple of other doctors so we can see if we can figure it out.  They think that maybe it's something other than her pulmonary hypertension that's causing this.  Hopefully by our next clinic visit in one month, they'll have some more information or be ready to run some other tests.  Abby was willing to live with a little swelling now and then, but then it got worse and is extremely painful, and that's not okay.  Last week I spent some time talking to Dr. Guthrie, Abby's GI doctor, to see if we could figure out her stomachaches too. He thought we should try Abby on a non-dairy diet.  She's been doing it for one week now, and she hasn't had one stomach complaint since!!  I think it's weird that an allergy like that can just pop up out of nowhere, but if going non-dairy is working, we're sticking with it!  We'll keep trying it and then we're scheduled to see the GI team on the same day as cardiology-January 23rd is going to be a busy day for us.  It's a relief to at least have something we can try, I was feeling like everyone had given up on making Abby's stomach feel better.  It always feels good to have a plan.  Now we just need to keep Abby healthy through the rest of the "sick season!"

I will admit that it's been a rough month around here, but I think we're handling things really well.  I was talking to a friend the other day that's going through a rough time, and he said to me, "I know things are hard for me right now, but then I look at you and I feel grateful for my struggles!"  I didn't think about it at the time, but after we got done talking, I had to laugh a little.    I'm glad that I can be the one at the bottom of the barrel, I can be the one to make everyone feel better about their situation!  "At least I'm not the Doman family right now!"  HA!!!!  Really though, I hope that people don't truly see us in that way, because we don't.  Things are hard, but they could be so much worse in so many ways.  We try to look at it as being blessed.  My dad was lucky he didn't have his heart attack while he was out running in the desert, we're lucky he's still with us today.  Brittany and Brock are getting closer and closer to being back their normal again.  I know that Brock will never take being able to walk for granted again.  We were able to spend Christmas home, all together.  Sure, Abby has had a rough year and a half, but she's been able to be home and happy, and just a normal kid most of the time.  Maybe this past month had to happen so that when we get through it, I'll be more willing to accept our "new normal" of Abby with her new heart.  I know that I'll be grateful when we get back to that normal, I'm looking forward to it.