Wednesday, April 16, 2014

So, what's going on with Abby?

First of all, our trip to Hawaii during spring break was awesome of course!  We love it there, the beach never gets old!  It's always good to spend some time as a family, this is going to get harder and harder to do the next few years with Brock and Britt getting older.  We were able to spend time with friends while we were there as well, in fact, both Brock and Britt went on dates with some friends from home!  Mostly we just hung out having fun.  One really great thing, Abby's legs and feet didn't swell up at all on the flight!  I'm so grateful that we got that problem taken care of.  A couple of really weird things happened with Abby while we were there were that:  we did a really good job keeping sunscreen on her, she didn't even turn red at all, but the third day we were there, she broke out in little blisters all along her chin and her mouth.  It was very painful.  The other weird thing is that after the second day, she had a very strong sensitivity to sun, so much that just walking from the car to the beach in the direct sunlight would physically hurt her.  It was so strange.  She had never had anything like this before, not even when we went to Hawaii last June.  It really stunk because for the rest of the trip she would either have to be in the shade, or in the water, or else she hurt, a lot.  We still haven't figured that one out.  For the most part, we loved our trip and can't wait to go back!

hanging out at Laie point.  I love how happy we all are!

Spending time at the Laie temple

This is one of the beaches right by our house

It was when we got home that Abby started feeling sick, and now, 4 weeks later, she still feels crappy.  She's had a lot of GI issues, stomach cramping, throwing up, diarrhea as well as migraines and she's been exhausted, lots and lots of naps.  The other problem she's having is that her arms and legs keep falling asleep, this would happen 3-5 times every day! The first couple of weeks we thought she just had a virus, and we were just waiting it out.  Then things didn't change, so we talked to the transplant team and they suggested we see our pediatrician and have some labs done.  So we did, and the lab results came back negative.  We thought she had CMV again, and one of the lab results for CMV came back positive, but when we retested, it was negative.  She continued to feel awful, for 4 weeks, some days worse than others, so that's when the transplant team decided they needed to see her to make sure that her heart was okay and to rule rejection and to figure out what's going on!  We went up to Primary Children's on Monday.  Thankfully, the echo and ekg looked perfect, so that ruled out any issues with her heart.  Her blood pressure has been running a little high, so they're changing the dose on that, and they're taking her off one of her medications that after taking for a while can cause numbness in the arms and legs.  Hopefully this will fix that problem.  Because Abby has been having frequent migraines and headaches, we're scheduled to see a neurologist when we go back up the end of May for Abby's annual biopsy.  Hopefully they'll be able to help with this.  Right now we are still waiting for her lab results.  I think it's her eosinophilic colitis again, she had this back in April a couple of years ago.  Here's the link to that post 2 years ago:    They've also talked about her possibly having an autoimmune disorder, if that's the case, we'll deal with that too.  We're almost to the point that we don't even care what it is, we just want to know so that we can help her start feeling better.  Hopefully we'll hear later today and we can start a new plan!

One good thing that has been going on at our house that has definitely made us happy is our new puppy Murphy.  We new that our old shih tzu Rebel was sick and getting sicker and that he wasn't going to make it much longer, so I started looking for a new dog.  Murphy is our new English Cream Golden Retriever and he is the perfect puppy.  He is so stinking cute and hilarious.  We miss Rebel, but we now have our little shih tzu Marli, and our new Golden, Murphy. Murphy is going to be big, we're thinking around 60 pounds.  So far, he's the perfect dog, let's hope it stays that way.

The last exciting thing that is happening at our house is that Brock has decided to go on his mission before playing football at Weber State.  His coaches told him that he should get his papers done and in as soon as possible so that he'll be back for spring ball in 2 years, so Brock and I sat down and filled out all of his papers and submitted them all last Saturday. I think we probably set a new record for fastest time ever!  He thinks he could get his call as soon as next week and that he'll leave the first part of June.  I have mixed emotions about all of this.  Brock will be an excellent missionary, I've always known this, but I don't like to think about not seeing him for 2 years, that's too hard.  With Britt being in nursing school starting in August and being gone all day, and Brock on his mission, I'm going to be lonely!  I guess it's time, but it doesn't make it any easier. For some reason, Brock's thinking he's going to England, I'm thinking South America....but we'll probably both be wrong!

For right now, we just want Abby to start feeling better!  Hopefully they'll find something today that is easy to fix and she can get back to feeling good right away.  A month is a long time to feel sick and not to be able to go to school or anything.  Lots happening, but summer is just around the corner!

1 comment:

  1. I hope they figure out what is going on with Abby's GI system soon! I'm excited to hear Britt will be starting nursing school this fall! I thought we may end up being classmates this fall at Dixie, but I made the decision to go to the University of Utah due to the fact that being closer to my doctors will probably be better for my health if anything heads downhill!