Thursday, June 28, 2012

Sometimes it's hard to put thoughts into words

Lots of random thoughts on my mind tonight, here goes........

First of all, last night, I decided to look back at the blog from last year at this time, to see what exactly was going on then.  One year ago today, Abby's listing status moved up to 1A because her heart had gotten so much worse.  She was admitted the CICU again.  Brittany and Brock were getting ready to go to Hawaii with my family, and I was so sad that they were going to be gone.  I was a wreck, but I was still hanging in there.  I was still completely clueless about the heart world and what was really going on with Abby, I sounded like I knew what was going on, but I really didn't.  I know so much more now.  I couldn't stop reading the blog and my words from last year, so I read all the way through July, and I'm so glad I did.  It made me remember to feel grateful that I'm able to be living in my own house with all of my kids together now, I didn't have that last year, I had forgotten how much I wanted that.  I also hadn't read a lot of the comments left by all of you, I just never did, and as I was reading them last night, I was just bawling.  We have always had so much support, we are so blessed in that way.  I never would have survived without the love I felt from all of you.  I also loved reading the last post I wrote before we got "the call."  I ended the post by saying, "Tomorrow, when I've got all my family back home, it will be the perfect time for us to get Abby's heart, don't you think?"  I guess it really was!  Also, as I was reading through just June and July of last year, I can't believe how everything just seemed to fall into place.  Even though it seemed like it was the most random, crazy thing to be going through, when you step back and look at the big picture, it was the most  "orchestrated" random event ever. I hope that makes sense, I'm having a hard time putting it into words, and that's not usually a problem for me :)  I know that everything had to happen just as it did.  It's just so obvious to see Christ's hand in everything that happened, every little thing had it's purpose and it's reason.  I guess that It's just easy to see it now that it's more like a story, not just a bunch of single events. I'm not making sense with this, I just can't explain it, but I can definitely feel it.
I think how fast this summer has been going compared to last summer, and I bet most of you were thinking, "what is Michelle's problem?  they haven't even been waiting 2 months!"  But, believe me, that 2 months of waiting felt like 200 years.  Abby's whole story is just beautiful.  I'm going to read through the rest of the blog a little at a time, It makes me feel so blessed and so full of strength and it helps me remember to be grateful for where we are today.

And where exactly are we today?  We are only 9 days away from Abby's Make-a-Wish trip to Florida, that's where we are!  My kids are so excited, all 3 of them, they talk about it every day.  I am very nervous still......very nervous.  We have to go to clinic on Monday, we haven't been there in over 3 weeks, and last time we were there was when we found out Abby had Parvo and we haven't been doing anything to treat it.  I'm scared to death of what they are going to find when they do her echo.  Abby's blood pressure has been doing some weird things the past week or so and that makes me nervous too.  Poor Britt, who has been taking her CNA classes, has had to learn to take blood pressure so she's been practicing on Abby.  It's kind of weird for her when she gets readings like 90/80, and then of course I question if she's doing it right, who wouldn't?  But, she is doing it right, Abby's blood pressure just hasn't been her normal. So, I'm nervous.  I'm worried that for some reason we are going to have to cancel the trip.  It's not that I'm being negative, I'm just worried.  Maybe, I'm just scared to get my hopes up too much.  I probably won't really think we are going to be able to go until we are on the plane!  Please keep praying that Abby will stay healthy so we can go, I know it seems like a frivolous thing to pray for, it's not as serious as when she was sick, but I also know that this family needs some time away.  Monday is a big day, It's going to be one of those clinic days where I don't really breathe the whole time I'm there, I just have a nervous feeling about this one.  Send lots of positive vibes our way on Monday!!

We are so excited for July 12th.  We've been getting so many great emails and texts from people telling us how they are planning to Pay it Forward for Abby on that day, we love to hear the great ideas.  Abby will also be on the Mormon Times TV show again, on Sunday, July 8th.  She'll be talking about her 1-year anniversary idea, as well as some other things, it should be awesome.  She also did an interview with the Spectrum this week, the story should run sometime around the 10th, I'll let you know for sure when I hear back.  On that day, it is our hopes that everyone will just think "Today is July 12th, Abby's had her heart for one year. We are so grateful that she's still here with us today.  What can I do for someone else today in honor of Abby?"   Wear your Team Doman shirts that day for sure too!  We'll be sporting them in Disneyworld!!

Please keep Abby's little heart friends Matthew, Kaidence, and Kylie, and their families in your prayers.  All 3 of these kids are waiting for hearts and have been for some time now, they each need a heart ASAP and they need to feel comforted until that time comes.  Two of them are in need of their 2nd heart transplant, this could be, and will likely be Abby someday.  Their parents are all so strong and I look up to them so much, they are my friends and they are in need of your prayers. This is just so hard to go through, but I know the power of prayer, it's something I strongly believe in.  This is one of the few ways I know of to help them at this time, please help me to help them in this way. 

Lots of things to pray for, I know.  This "heart" world we live in now isn't easy, but I'm honored to be a part of it.  It continues to help me put things in perspective and to remember what's important.  I know that I wouldn't have that perspective without the experiences we've had this past year.  We are so blessed in so many way, I hope I never lose sight of this!

Wednesday, June 20, 2012

"Pay it Forward for Abby"

Abby is far as we know anyway!  This whole past week has been pretty uneventful, as far as Abby's health goes anyway.  It's been really nice to have her feeling pretty good almost all the time.  She gets worn out a lot, but considering all of the things we've been doing lately, along with the St. George heat, it would be weird if she didn't get tired!  We don't know if Abby still has Parvo in her heart tissue, but because she is feeling so good, we're assuming that if she still does, it's not getting any worse.  All last week, I had a very uneasy feeling about her Parvo and that we weren't treating it in any way, and after spending some time researching it and trying to learn more about it, that uneasy feeling was getting worse.  I'm so thankful that we've got a transplant team with doctors that are willing to spend time talking to us.  I called Dr. Molina and let her know about some of the things that I had read.  While I was researching, I learned that Parvo in the heart tissue can lead to early coronary artery disease as well as heart rejection and heart failure, of course this made me nervous.  But, after talking to Dr. M, I felt a little better.  Apparently, there have also been studies done that say it isn't the parvo that caused these results.  Even if it could potentially have these results, we wouldn't be doing anything different than what we are doing right now anyway.  We are doing everything we can.  Dr. M said that the fact that Abby is feeling good right now, and the blood tests have come back negative, we shouldn't be too worried and that we might test for it again during the next biopsy.   Then, I finally got the guts to ask her the question that I've been afraid to ask anyone, I've never even dared to bring it up, but it's been in the back of my mind for a few months now.   It's something that I've been thinking more and more about, especially with all the struggles we've had the last 5 months.  I asked her if the heart transplant patients that have a harder time during the first year, tend to have a harder time throughout their lives with their new heart.  I just held my breath while I was waiting for her answer.  But, she said absolutely not.  Sometimes, kids go through everything the first year, then they turn the corner and they don't experience problems for a long time!  What a relief.  She also said that we've learned a lot about Abby this past year.  She is very susceptible to catching viruses, even more so than the normal immuno-suppressed kid, so we will have to make some changes to her meds in order to keep her healthy.  We also know what to watch for now, and how Abby responds to being sick.  Right now, we are just going to be grateful that she feels good.  I'm so worried about being able to keep her healthy for the next 3 weeks so we can go on our Make-a-Wish trip to Disneyworld.  It will be the longest amount of time she's been healthy since she got her new heart.  We just pray every single day that she'll be okay, I think cancelling another trip would be devastating to all of us, we are looking forward to it so much.  We are down to 17 days, she just needs to stay healthy for 17 more days, and the 7 we are in Florida of course, we can do it!!

For those of you that aren't on Facebook, I have to share our idea of how we are going to celebrate Abby's 1-year heart anniversary on July 12th.  This is what it says on our "Pay it Forward Abby" facebook page:

Abby Doman got her second chance for life when she received a heart transplant on July 2nd, 2011.  Abby and her family are so incredibly grateful for this gift, a gift that we think about every day.  To show how thankful we are, we would like to make July 12th "Pay it Forward for Abby" day.  Even though we don't know who it is, we want this to be our way of thanking Abby' donor and their family.  On this day, we would like all of you, Abby's friends and family, to think of a way that you can pay it forward or do something for someone else.  It can be as simple as letting someone go before you while you are waiting in line or babysitting for someone that really needs a break without being paid, to something that might take even more effort, like making the first step and apologizing to someone that you've wronged in some way and been reluctant to approach, or forgiving someone that has wronged you even if they haven't apologized for what they have done.  On this day, July 12th, show how grateful you are for your life and Abby's by doing something for someone else.

"Consciously or unconsciously, every one of us does render some service or other.  If we cultivate the habit of doing this service deliberately, our desire for service will steadily grow stronger, and will make, not only our happiness, but that of the world at large."  Mahatma Gandhi

We then want everyone to share with us either on this blog, my email, or facebook some of the things that they did or what others did for them.  As a family, we are so excited for this day.  We will be in Florida on this day (we better be anyway!) and we are planning so many great things to pay it forward, we can't wait!  We really want as many people to be involved as with this as possible, what a great way to show thanks for Abby's gift of life!   Spread the word, share this with others, then let us know how it goes!

If you would still like a Team Doman shirt, or need one for July 12th, we still have lots.  If you don't live in St. George, just email me your address, and I will send one to you, the cost is $10 and I'll send a couple wristbands too.  If you do live in St. George, just email me and we'll find a place to meet.  A big thank you to those of you that recently bought shirts, it's helping with the bill that Fargo's never paid.  I would really like to sell the rest of these shirts, it's for a good cause, I promise :)  Start thinking of how you will pay it forward on July 12th!  Be watching for a newspaper article and listening for some radio spots on that day, possibly news stories too!  It's going to be awesome!

Friday, June 15, 2012

Boating videos and pics......I can't believe it hasn't even been 1 year!!

Abby is doing pretty good right now.  Things finally seem to be pretty stable, and we're enjoying our summer.  The Make-a-wish plan is still set for a trip to Florida the second week in July, we are all excited!  When we decided on the date, Abby's comment was, "Oh no, I have clinic on July 2nd.  I hope nothing happens and that we can still go!"  So, we are all praying for good health for the next month.  Abby has already let us know that if this trip gets cancelled, she's not planning another one.  As for now, we spend our days swimming, going to movies, and just hanging out.....we are loving it!
We went boating this week, for Abby and I it was our first time in 2 years, we never got to go last summer.  At first, Abby was real nervous.  She didn't think she was strong enough to pull herself up on the kneeboard.  But, she got out there and did it no problem!  She was going in and out of the wake just like before, and even was back to doing her 360's!  She had the biggest smile on her face ever, and so did all the rest of us in the boat, it was amazing.  After Abby realized she could do this, she decided to try surfing, and got up her first time!!  She is awesome, totally inspiring.  After spending the day on the lake, wakeboarding, surfing, tubing, and cliff jumping, we went home and Abby slept for the next 3 hours, I think it wore her out!  The one thing I learned from seeing Abby out there doing all of those things that she didn't think she could do yet was that we are always stronger and can do and handle more than we think we can.  Way to go Abby!!!

**Sorry the pictures are all over the place, I can't figure out how to put them where I want!  If anyone wants to teach me, please do!

Abby heading out of the wake

Abby and her cousin Leah

Abby surfing :)  It won't be long until she figures out how to let go of the rope

Britt on the wakeboard


Abby's cousin Luke

Cliff jumping

Britt always wants to go faster on the tube!

Abby's Uncle Rich getting some air!

Monday, June 11, 2012

Parvovirus is for dogs......isn't it???

My last post talked about how clinic was so great and that everything was perfect last week, and it was, for 3 straight days.  We didn't worry about anything or even think about the transplant for 3 days. Then, on Thursday morning I got a call from the transplant team.  Honestly, I didn't even want to answer, but I did.  They said that the results from Abby's heart tissue sample, that they had sent to Cincinatti after her biopsy, had come back positive for Fifth's Disease or Parvovirus-we finally knew the cause of the mysterious "crackle."  We were sent to get a blood test at Dixie Regional to see if it was in her blood as well as the heart tissue.  Then the waiting began, I knew we wouldn't be getting the results until today.  Of course, I knew nothing about the virus, so I started the researching.   No, you can't get it from dogs, it's the human Parvo, not the dog I guess my dogs are off the hook.  In "normal" people, people that aren't immunosuppressed, it's not a big deal.  But in people with no immune system, it can cause some problems, one of them being chronic anemia, which requires blood transfusions or IVIG infusions.  I got worried about this, because even though Abby always tests negative for anemia, she has a lot of the symptoms, I was a little worried that she could be developing this.  It was a long weekend full of lots of worry, but, we got the results today, and it came back negative.....hooray, no Parvo in the blood!!!  So, we probably won't even have to treat the infection in the heart tissue, hopefully it will just go away on it's on rather than get worse.  The only problem Abby is having now is everytime she stands up, especially in the mornings, she gets real dizzy and almost passes out!  We adjusted some of her meds last Thursday, but it's only gotten worse.  It's not her blood pressure, that has been really good, so we're not sure of the cause.  It could possibly have something to do with the virus, so the transplant team is sending out a holter monitor for Abby to wear one day this week to track her heartrate.  Hopefully, this will turn out not to be anything either.  You know Abby, she always likes to have something going on.......NOT!!!  Right now, we are still on schedule for clinic on July 2nd.

The not-so-good news came from Make-a-wish today.  We are not going to be able to go on our Caribbean cruise or any cruise, they are all full already.  The first available week is August 12th, but that's my first week back to school, and I don't think it would be good for me to miss the first week of another school year.  So, then we asked if we could go to the new Disney Resort on Oahu, we really wanted to go to a beach.  But, they couldn't accept us on such short notice either.  Then we decided to ask where we could go sometime in the next month, and the answer was................Florida!  Abby is thrilled.  We will spend the week going to Disneyworld, Seaworld, Epcot Center, Harry Potter Land, Seaworld, etc.  Not the relaxing vacation I was looking for, but whose wish is it anyway??  We will definitely stay busy, and I will try not to worry too much about all of the germs.  Actually, as I'm typing this, I just realized that we haven't really gotten the okay from the transplant team for this wish yet.  We technically won't even be 1 year out from transplant.  Hmmmm..............I guess I better give them a call in the morning before we finalize any plans.    So, as of this very moment, we are planning on going to Florida the 2nd week of July for Abby's wish, and she is extremely happy about it.  I should know more of the details tomorrow.  If any of you have gone on Disney adventures for your wish, please let us know how it is!!

This past week we've spent lots of time at the pool, with lots of sunscreen of course, and tomorrow will be mine and Abby's first trip boating out at the lake in almost 2 years!  She's worried she won't be strong enough to kneeboard and wakeboard, but I told her she's stronger than she thinks!  I will post videos and pictures of her jumping the wake and doing 360's just like she did last time we were there.  As for me, on the other hand, I will be surprised if I can still wakeboard.  I'm not nearly as fit as I was 2 summers ago and I'm much, much older now in so many ways.  But, maybe I'm stronger than I think I am too!!

Thanks for sticking with us through the all the rough patches, I really think we've turned the corner and things are only going to get better and easier now.  We deserve it.

Monday, June 4, 2012

Finally, the post we've all been waiting for :)

 Even though Abby had just had clinic , her annual biopsy, and an echo at Dixie Regional all in the last week, she still had clinic again today.  We packed our bags for a whole week, we always do now, it just seems like we've had to stay up there more times that not lately.  But that wasn't necessary this time; In fact, we got home at 4:00!!  So far we've only gotten good news today, all good's about time!!!  Here are some good things that have been happening with Abby and the rest of the Doman Crew:

-Abby's eosiniphilic colitis symptoms (diarrhea, no appetite, upset stomach) disappeared 9 days ago!  That's right, she woke up 9 days ago and it was just gone, she hadn't even started the new meds yet.  Baffling?? Yes!  But we're going with it anyway, and just hoping that it never comes back!

-Abby's "crackle" is still there, but Dr. E thinks that it will eventually just go away on it's own.  It's fun to listen to though, everyone wanted to listen at clinic today!  I don't like it, it makes me nervous, but everyone else is okay with it, so I will try to be too.  I just don't like it when she can't breathe when she's laying on her back, or it hurts her when she breathes in deep.  They think it's just pleurisy and will hopefully go away soon.

-Abby's 3rd CMV test came back negative-that means it's all the way our of her system!

-We're starting to decrease one of Abby's meds, Tadalafil, and it's one of the expensive ones!  woohoo!

-Britt graduated from seminary and from High School!  Way to go Britt!  Britt has always been an excellent student and takes school very seriously.  She's now taking classes to become a CNA and has a job interview tomorrow for her first "real" job!  It's a CNA job at a elderly care center.  Keep your fingers crossed for her to get the job!!  She'll start taking classes at Dixie State in August, and hopefully be accepted into their nursing school in a couple of years.

-Brock is getting stronger and tougher and is going to tear it up at football this year.  He will probably be playing both sides of the ball come August, not bad for a junior.  He went to football camp last week and loved it, even though it was 2-a-days and was 100 degrees every day!  His ankle was hurting a lot by the last day, but we're still just hoping and praying it will hold out until the season is over and then he'll have his surgery.

- I am doing 100 million times better than I was 2 weeks ago.  I'm out of school now, which makes me feel like I can finally have a minute to breathe again.  I even made it to the gym 5 days last week!!  I read my book, spent some time at the pool, and even took a daily nap!  I honestly feel like it's my turn to finally recover a little.  When you don't sleep for a year, you get kind of run down......I can finally catch up! I plan on continuing to relax and take care of myself, I need it, I have a lot of work to do.

- If things continue to look good, we don't have to go back to clinic until July 2nd, almost 1 month!!

- They gave Abby the okay to swim (as long as it's not in pools with lots of little kids with poopy diapers on).  We'll take it, we thought she still had one month, so I think we both almost passed out when Dr. E said to go for it!  We need to get out on the boat again....I can't wait!

-The shave ice places are open, ahhhhhh, nothing better!

And finally, the best news of all..............are you ready for it???????

They gave us the okay to plan our Make-a-wish vacation!!!!  When I asked when we could go on a vacation, Dr. E. said,  "Plan it now!  Just go!!"  So we are.  We even stopped at the Wish House on our way home from Primary Children's.  Since Abby can swim now, she's decided she wants to go on a Caribbean cruise.  As soon as we got home we starting looking them up and we already have our top 3 choices.  It's a little hard to plan because of Britt CNA class schedule, and Brock's football schedule, but we found 3 cruises that work.  I have to call our wish planner tomorrow and see if they are available.  She said that because they do everything they can to treat the wish kids like superstars, they only allow 2 on the ship at one time, so we have to make sure these aren't full yet.  I will be calling tomorrow, and we could possibly be heading to the Caribbean in 1 month!!!  Woohoo!!!!!  You don't even know how happy this makes me, I need a vacation so bad, I can't even explain it.  After Dr. E said it was okay to go, I was thinking on my drive home that if I was rich, I would go home and buy 4 tickets to Hawaill and we would be leaving tomorrow.......hmmmmm........If only I was rich!  Let's just hope that one of the 3 cruises we can go on will work out for us.

Right now I'm feeling pretty good about things, but we haven't gotten lab results back yet, and these results might shed some light on why Abby keeps getting all of these inflammatory problems.  We are still waiting on the results from Cincinnati too.  They are still trying to find the underlying cause of everything that's been happening this past year.  But, for now, I'm just going to be happy and enjoy our perfect clinic day!!!