Friday, December 30, 2011

2012 Here I come...

WOW! Happy New Year everyone!! 2011 was a tough year, but we finally made it through, and with some great memories too.
It was a big year for River! He turned 5 years old, lost his first 2 teeth, started kindergarten, and discovered Youtube.

In April, we did our second annual Donate Life walk (Yaeh, go Team Larry) Did you know that 1 life can save 8 others and help hundreds more? You did! Well, did you know that I can count on one hand the only reasons someone couldn't donate their organs (and religion or cancer ain't one of them)... you knew that one too huh. Well then I guess you probably already know that April is Organ Donation awareness month and we will be doing the Donate Life walk again this year, and would LOVE for you to join us!! (Now back to last year)

 We had our family camping trip in July (ok not really camping - we stay in a hotel) Here is a good time for me to add some good advise... always take extra's of any appendages you have. Not only did I bust my second bile bag while gone, (the first bile bag mishap happened at the Donate Life walk) but I also forgot the charger to my feeding pump. (every hour I had to manually push my necessary cc's of formula with one of those cartoonishly large syringes - and let me say, I got more awkward stares then a woman breastfeeding in public does, and you didn't even see anything on me) Anywho, it was a great trip and we really needed it. I was actually pretty sick by then and needed the reminder of all the beauty I was fighting to live for (besides my family and friends of course).

I had my second liver transplant soon after that. I thank God every day for my two heroes. This time around was a lot tougher, even coming out of surgery I had more tubes, stayed in ICU longer and was pretty much in the hospital most of the time in the following months. I missed out on a lot in 2011, life definitely does not wait for anyone. 

My little sister graduated high school (And turned 18),  another event I missed (...not to beat a horse to death, but Valentines, Mothers day, and Rivers first day of Kindergarten, just to name a few) But I think I  handled missing out on things a little better in 2011 (It took me a LONG time to get over missing out on Rivers first feeding, diaper change, bath, cry, smile... I think I'm over it now, maybe - he is almost 6, hehe) 

When the holidays started creeping up, I noticed I was feeling a little better, had some more energy. Was even able to participate in some stuff. By the time we headed up to Salinas for turkey day I was feeling better then I had in a long time. These last few months have been great. I also got my feeding (G and J tubes) removed... well, I got one removed, the other I accidentally removed myself) First time I have been without any tubes or bags attached to me in YEARS. As a matter of fact I just took my first bath in years the other day. Very cool. Sometimes I can't believe it, it truly is a miracle. There are still some little things, aches and pains. But I ain't complaining about that (just mentioning it. hehe). I've only thrown up a few times in the last month (MONTH, not day! Amazing!) and I haven't had to stay overnight in the hospital since October. And that was when they were sending me home saying that there wasn't much more they could do for me. Like I said, it was a tough year, but it was a great one too! And 2012 really is a year full of hope (well unless you believe in that whole "end of the world thing") 

In the new year I want to 
  • get organized
  • keep anything (or anyone) toxic out of my life
  • get River eating more of a variety of foods. He used to eat good foods - he even loved lettuce wraps, but because I haven't really cooked in the last few years, he has gotten used to some really basic (dad cooked) or restaurant food. When I first started cooking again a few months ago, he asked me what I was doing in the kitchen... EPIC MOM FAIL but I am already working on this. 
  • I want to keep in better contact with my friends and family (whether that be by phone, computer, snail mail)
  • write more 
  • travel somewhere new
  • and I want to become an ambassador for Donate Life
A very important thing that I have been trying to do, and I want to finish by the end of January, is my letter to my donors family. I have written it and re-written it, but it never seems perfect. How do I tell them how sorry I am for their loss, but how grateful for their decision to donate their loved ones organs I am, that I will try to live each day to the fullest in honor of them. I don't know..., but I hope it will come to me soon. I know that a lot of these things I couldn't do because I was sick and always exhausted, but that doesn't make me feel any less guilty. I was once a semi-funny, social, active, and not flakey person. It seems like so long ago, but lately I have found myself doing things and I think to myself, Hey... I remember I used to do this before I got sick. So I've got confidence that I'm getting better, I'm coming back baby... 2012!! 

A very Happy and Healthy new year to you and yours!  <3

Tuesday, December 6, 2011

3 more days and I'll be tube free!!

Just a  little holiday update. Just 3 more days and my last and final tube will be coming out! 2 years -- nay... OVER 2 years of bags and tubes... it was just months ago that I referred to myself as "the bag lady". Literally hours daily (still) spent daily cleaning and or venting and unclogging tubes no more! Hundreds of washcloths saved from feeding and liquid medicine spills, hundreds of dollars and landfield space saved from Q-tips, guaze, and alcohol pads used! hehehe (Oh the dramatics)
Anyways, FRIDAY, the G-tube is coming out. No more getting caught on things (cabinet knobs will no longer be my enemy) No more trying to find clever ways to wear clothes, River can now sit ANYWHERE on me, walking won't hurt!!  I have already noticed a huge difference walking with my J-tube out - sooo nice. Oh, the things we take for granted. And without as much pain, I haven't needed as much pain medicine, which means I'm less sleepy, which gives me more time to do stuff like this...
Another home made wreath

Frosty out of an old lightbulb

Getting our tree!!

Rivers handprint reindeer

Happy holidays everyone, and remember - especially around this time of year to cherish life... Yesterday is history, tomorrow is a mystery, and today is a gift, that is why they call it the present. :) And I'll say it again, if you are out there this season (and even if your not) donating your time, money, food, and/or toys, don't forget to sign up to be an organ donor. Give the gift of life to others some day!

Friday, December 2, 2011

Lucy... You have some e'splaining to do!

How do you accidentally pull out 6" of tubing?
Tehehe, so I still have yet to call the doctor, but I am thinking for sure tomorrow... really this time. I'm just not sure how I am going to explain that I "accidentally" pulled out my darn J-tube. And then tell him, "By the way, I want the G-tube out too!" I don't have a clinic appointment until December 9th, but I am going to have to suck it up and go early because the G tube is just to painful right now and ice packs aren't cutting it anymore. But back to the J-tube, I believe it is the doctors fault it ended up coming out anyway. When all of the stitches (painfully) started popping off, they told me just to keep it taped and it should be ok. Well, it wasn't, it slowly started getting longer and longer, but this last time I had to take all of the tape off to clean it, the tube came out a few extra inches all at once, and those few inches that came out looked all dirty and gross,  so I wasn't about to try to shove that grossness back in. I guess that is just what I am going to have to tell the docs, it is the truth after all... unless I can convince them that a stray dog ran up to me, saw the tube hanging (since the docs put in one that hangs to my knees, instead of putting in what they call a button - which is much easier and less painful to take care of... but anyways) So, this stray dog runs up, grabs the tube and just keeps on running... what?? It could happen. Ok, I'll stick to the truth and let you know how it goes, but for now I am going to get back to bed. I had to get up and make some jello so that it will be ready in case I get sick later on in the night. Nighty, night my friends!!

(Just to let you know, in case you are reading this and have a G and/or J tube yourself... Both of my tubes were placed after my second transplant. Before these stupid tubes, I had a great combined G and J tube that was placed about 4 or 5 inches above my belly button. It was not painful and hardly leaked anything at all. If I would have even tried to pull that one out it would have not only been very difficult but probably very painful. It had to be removed and placed in a different spot because it was in the way for the transplant, but when they put the new tubes in -- or in my opinion, just threw them in anywhere, they only put in a temporary type. I knew this when I removed the one, so basically what I am saying is, don't try this at home. teheheheee)