Tuesday, January 17, 2012

The good news far outweights the Not-so-good news!!!!

These clinic days are supposed to be getting easier, aren't they??  For some reason, they just wear me out!  By the time we get back to St. George, I'm just one tired mama!  I'm going to try to break this post into "Good News" and "The Not-so-good News," but lots of the things go into both categories, so it will probably be scattered......oh well, I'm kind of scattered right now too :)

The Good News:
-Abby doesn't have to take Nystatin anymore!!!  This is the greatest news ever, the stuff is nasty.  It's this thick liquid that looks a little like orange juice.  She's been taking it 4 times/day for 6 months...that's a long time!  But, as of today, no more Nystatin!!!

-We had a snow-free drive......again.  I have to apologize to all of you snow lovers for the lack of snow this winter.  I take all the blame.  Abby and I need to get back and forth without having to worry about snowy roads too!   I'm sorry, but you know we have someone watching over us and if that means not a lot of snow this winter, then I guess that's what's going to happen.  Let's just hope it continues!!

-Abby's echo looked great today!  Everything looked perfect.

-Only 1 poke in the lab-that's always a bonus! 

-Abby can start soccer practice again this Thursday :)

-Abby's not sick anymore, the virus she had cleared up really fast-less than 2 weeks!  We are lucky.

-Britt started taking classes at Dixie State along with her high school classes.  This is good because she was getting a little bored.  She's also volunteering in the ER and loves it!  I guess nursing just might be her calling.

-Jon (my brother) and Deedee(his wife) let us stay at their house every time we have to go to Salt Lake.  They only live about 5 minutes from PCMC and Abby loves to hang out with her cousins.  Thanks Jon and Deedee and thanks Mina for giving up your bed so much!  This sure makes our trips easier.

-My body has been working so hard to fight off Abby's virus and Britt's virus, and so far I'm hanging in there.  I've felt them both coming on, and other than making me extremely tired, I've been doing okay.  I just keep telling myself that I can't be sick right now, it just can't happen.  So far, it's been working.

-Abby's 6 month "heart-a-versary"  was awesome!  We loved seeing all of the Team Doman shirts and people wearing red.  A big thank you to everyone that supported Abby on January 12th.  We loved all of our visitors that afternoon too, we will post some pics soon.  We haven't been too good at taking pictures, but that's my goal, I will do better.  We could feel your support, and that felt good! 

-My blog helped a woman in Ohio feel peace.  Her son was recently diagnosed with hypertrophic cardiomyopathy and they are just beginning the transplant process.  It made me feel good to know that even though it's sometimes hard for me to put my feelings out there for the whole world to see, because I was willing to do that, I made a difference to someone else, I made her feel stronger and that she can do this too!  Thanks Shannon and Melissa.  Knowing that I gave you strength, made me feel stronger too.

The Good News that could also be Not-So-Good News:
-Tomorrow, we're going to start a very slow steroid taper again.  Abby's on 5 mg/day now, and we're going to get her down to 2.5 or even less, but it's going to take a while, we're only decreasing 1 mg every 3-4 days.  This is good news for Abby, she's tired of the side effects.  Once we get down a little farther on her dose, we'll also be able to go off a couple more meds too :)   The reason this is not so good is that both times we've gotten down to 2.5 mg, Abby has gone into mild rejection, so we are scared.

-Brock has started taking driver's ed, he should get his license in a few weeks.  Good news because I have to drive him a lot, or he always has to find rides and that's a pain....bad news because have you ever paid car insurance on a teenage boy??   Luckily, he's a good, responsible kid that I can trust driving.  He's just going to love my old, red van.  It's epic, it's tight  :)

-Today, they tested Abby for everything to see what's going on with her and her swelling and her tiredness.  They filled about 10 vials of blood.  This is good because we thought we'd get some results and be able to take care of the problem....but, so far, everything has come back looking great!  Good news, right??  Well, yes, but then what's causing the swelling??  We don't know, the docs don't know, nobody knows.  Right now it's just a puzzle to everyone.  We are still waiting on a few labs, but so far, we are still in the dark.  I could tell that Dr. E was frustrated today and so was I.  If we could just find the cause we could treat it and move on.  It was a discouraging clinic.  As for now, we are just going to mess with some of her meds again and see if that will do the trick.  We don't want any more swelling, it's painful for Abby!

-Britt has had some stomach virus for 5 days.  She's been feeling like crap and can't keep anything in her stomach.  It stinks for Britt.....but, she's lost about 10 pounds in 5 days (that's why it can be good news too.)  I need this virus.

The Not-So-Good News
-Abby is tired of not feeling good.  It's been too long and she got so frustrated today because they couldn't figure out what's going on.  She even had a little meltdown in clinic.  It was so sad and so hard to see her crying.  She's been so strong for the last 8 months, but this is just too much.  It made my heart hurt to see her be discourged.  You know that if Abby is struggling, that it's been hard, really hard.  She needs a break and some "I feel good!" time.  She could use your prayers to help her continue to be strong.  I know just how she feels, we just need things to settle down and for everything to look perfect and for Abby to feel perfect.  I think she deserves that, probably more than anyone I know.

-We have to go back up for a cath/biopsy on Monday.  That will only be 4 days at home, then we hop in the car and head back up on Sunday...again.  I know that the biopsy and the cath will look awesome.  I still don't think any of this is heart-related, her heart is perfect.  But, I'm also glad that they want to make sure.  I think I might have a record....I've put 20,000 miles on my car since the middle of August.  5 months-20,000 miles-that's a lot :(   Oh well, we will do what we have to do. n The biopsy will rule out rejection.

I loved doing this post because there is much more good news than not-so-good news!   Eventually, things are just going to be good, I can't wait for that time and either can Britt, Brock, and Abby. I will post again on Monday after the biopsy!  Thank you for your continued prayers and support, we are one lucky family!!


  1. Dear Abby:

    My name is Heather, I knew your mom in High School. I have seen her posts about you on Facebook and am floored at everything you have had to endure over the past year. I recently read some of her blog here regarding what you are going through, and wanted to send you a message.

    I think you are an amazing person! Everything you are going through with such bravery and keeping your head held high is just AMAZING!!!

    I wanted to share with you.....I know a little of what its like to be TIRED of being sick. I had cancer, and had to go through 6 months of chemotherapy with steroids and other medications that made me feel awful. When I was done with the chemotherapy, I just wanted to feel better. But then I had to have surgery, and after recovery from that, I still wasn't done. I had to have radiation that made me very very tired and burned my skin. I had lots of side effects from everything, and some of which I still have today (3 1/2 years later). Anyhow, I understand what it feels like to just want to be better already! Although having cancer is not the same as a transplant, but I get what you might be feeling.

    Abby, from everything your mom has written about you - you are strong fighter! I used to look at my treatment as a very long journey that I was on. Each part of the journey had its own hurdles some of which I had to feel crappy during, but I had to get through each part to find the end -- where I finally felt like myself again. I had to take each day, week, month at a time, and just go with the treatments, and the time to recover. I know you want to feel better now, this week, but it takes steps-- sometimes baby steps to get there. Sometimes those steps take time to get there, but you will...just one day at a time.

    Hold on to finding something positive in everyday, something fun you like to do, something that makes you laugh, and find it or do it every day -- it helps the yucky times go faster, and its a good distraction.

    My love and blessings go out to you, that you may continue to be brave and fight like you have! Hang in there! The light is at the end of the tunnel...its just sometimes is a really long tunnel. You can do it!!


    Heather Elswood

  2. Congrats on more good news than bad! And what a sweet friend Heather is so write such a loving note. Heather I don't know you, and I've never even met the Doman's, but I feel like I know them through their blog. I hope you are feeling well.

    Michelle we are headed to Primary's next Tuesday for an Echo. You are always welcome to use our place if you need another option. Although I'm sure you have lots of places. We bathe in sanitizer and stay as healthy as possible.

    I hope your next visit has all good news. Feel better sweet Abby girl! You are making the impossible POSSIBLE!

    Lots of love,
    Jenn (Zeke's mommy) :)

    1. Thanks Jenn! If for some strange reason we are still up there on Tuesday, we will have to meet up for sure, and thanks for offering us a place too! Good luck with your echo!!