Thursday, December 27, 2012

Christmas, updates, clinic, and tickets

     Ahhhhh, Christmas, I love'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 or like the guy with his tongue pierced in the movie Rat Race, listen here, just start the clip at 1:00 (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.

1 comment:

  1. I have been thinking of you all so much! And the pict of Brock on crutches in the Nativity cracked me up! Can I be a fly on your wall someday?