Wednesday, April 13, 2011

I Need Ice Cream.

   The palsy is doing better. I still have trouble with my eye and my face sagging, plus I have trouble eating and drinking. My condition changes everyday. Some days seem worse than others. Today was actually a good day.
   I had my labs drawn on Friday and my score went back up. I have a score of 20 now. My coordinator told Lois that they transplanted someone last week with that score, but I am willing to bet that it wasn't my blood type. I looked at the UNOS website last night and there are a couple dozen people with my blood type on the list.
   I am tired a lot and ache all over. My muscle cramps havc returned and the Gabapentin doesn't really help. This past month or so has been trying on all of us. Lois and I have both been in the hospital and recuperating hasn't been easy. Lois' surgery doesn't seem to have helped now that we are a month or so out. I continue to try to stay healthy and each day is a little different.
   I mentioned in a previous post that I was hoping to take some pictures in American Fork, but that didn't happen. The photos I wanted are no longer there. I was kind of bummed about that. I guess I just need to get out and take a walk around the block and take some pictures. Lately Aly has been taking my camera to school for her photography class. I am happy about this. When I get better she can help teach me how to use it. She seems to really love the class and is excited about using photoshop for some of their assignments. Jenifer, on the other hand, is happy with her drama class. They just did "Suessical the Musical" and she played Jojo. She was absolutely stunning on stage and her songs were beauitiful. I am so proud of both of them.
   That is all.


  1. Hiya, Beaux. So sorry to hear how rough things have been lately. I suffered from a lot of muscle cramps prior to my transplant and it was unbelievably painful and frustrating, especially when cramps woke me up in the middle of the night.

    Congrats (?) on your higher MELD score. I hope this means that a healthy new liver is coming your way soon. You're certainly due for some blessings.

    PS - I love reading about your daughters. Aren't kids wonderful? Sounds like they're both blessed with artistic gifts - lucky girls!

  2. What a neat post! Looking forward for more post from you. Thank you for sharing!

  3. Nice to hear about your daughters. Hang in there.

  4. I'm sorry you are feeling so sick Beaux and Lois too. Why is life so challenging for the nicest people? I hope that you receive your new liver soon...its enough waiting. You both remain on my prayer list!

    I'm so glad your girls are finding ways to enjoy life...I know how hard it is on my kids having a sick Mom...but a sick Mom and Dad...that's a lot to deal with...and yet one thing I've witnessed is how beautifully compassionate my girls are. Rosie in particular, because she too lives with chronic illness (crohn's), so she really gets it...but you know, when she's in remission and feeling pretty good, she's still a teenager...a little less self absorbed than the average 14 year old though. Belin, my 17 year old... well she's in that separating from M & D phase...healthy and normal. Anyway...they have their activities they love and their friends and it really helps for them to have things to do that hold their interest. Rosie was in a play a few weeks ago too and Belin is getting ready for a trip to Paris with her French class next Friday...really amazing opportunity!

    As Laoch says, "hang in there."


  5. We could all use a little ice cream every once and a while :-)

    I hope you feel better soon :-)


  6. thinkin' about you and Lois and the girls today:-)