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. 


  1. oh michelle... what i would do for a job like that.... especially at 13. seriously!!! taking care of people is what i love to do.... i know it seems like a lot, and i know its hard on you, even then, im jealous of it... Also i wish i could just take a big load off your shoulders... prayers always with you... STAY STRONG!!!!

    oh and btw... idk if abby has told u but, i have decided 100% and i know for sure and wont change my mind.... i am going to be a Pediatric Cardiologist Surgeon... the heart is fascinating and abby and you guys have all inspired me... haha thanks for that :)) :)))

    Derek Kraft

  2. I went on an Alaskan cruise with my family a few years ago and it was amazing! You will love it. And all the food is seriously to die for. No cooking and all play, can't beat it.

    As for insurance, I totally feel you on that. I hate being on the phone. My bill paying days consist of getting a babysitter for the kids so I can spend all afternoon on it. I do it once a month so I don't have to do it everyday. I keep all my bills in a plastic box with hanging file folders. We have a zillion billion dollars to pay and obviously can't so we just pay $25 at a time to everyone. I end up with about 20 envelopes plus a few automated credit card payments taken by collections. All for $25 as well. You simply can't squeeze water out of a rock so there is no use trying. As long as you are paying something your credit should be okay for a while. But it's more my sanity I'm worried about. Just do what you can. I hate being on the phone and seriously people don't know anything about REAL insurance. After I talked to literally 30 people over the course of a few months I finally got someone by chance who knew my plan and what she was talking about. I have her extension and I ONLY ever call her. She knows the story and I don't have to take 5 years to tell it every time I get on the phone. We have a compound pharmacy who knows us and strangely enough our insurance doesn't cover sildenafil so we've worked out a price with the pharmacy. Anyway, I don't mean to babble. Just try to find one person to talk to every time and figure out your coverage online so you don't drown in papers. Let me know if you need any ideas. I am figuring out how to keep up with it...until I win the lotto or something. Good luck!

  3. I guess i dont understand the medical bill side of it. Does everyone not have an out of pocket on there insurance so anything over two or three or four thousand dollors a year per family is covered at a hundred per cent. I know a lady thats a school teacher and she loves her insurance for that reason. Anything major and she only has to meet that out of pocket. I though all insurances came that way. We have had to meet ours at five thousand a year more then once. But at least for rest of year for rest of family its covered a hundred per cent.

  4. There were a few things on my "bucket list" after transplant and Alaskan Cruise was one of them. My husband and I loved it. Alaska is absolutely gorgeous. Glacier National Bay was one of our "must see" and only two cruise lines can get into it.. Princess and NCL. Feel free to email if you have any questions.