Thank you Liver Families

Liver Families is an online community that I am part of. They have put together this montage for their 4th birthday! Check it out if you get the chance.

When we first learned that Monkey was diagnosed with a very rare liver disease, I joined an online community called Liver Families. Let me back up about 10 weeks. When Monkey was born, she was jaundiced. She literally came out of the womb jaundiced. They did tests at once, but she did not have to be seen in the NICU. The day before we were set to leave the hospital, we were seen by a GI specialist who told us that something was wrong with her liver. She threw a bunch of liver diseases at us. One of them being Biliary Atresia. She told us that she did not think that it could be that disease because it was very rare. For some reason, out of all of the diseases that she rattled off, BA stuck with me. Then, we were told that Monkey might not be able to go home with us because she needed more tests. I lost it when my OB walked into the room about 3 hours later. He calmed me down and told me that he knows what it is like to leave behind your little one. It made me feel a little better and in the end, Monkey got to come home with the promise of returning in 2 days for more tests at the GI Dr's office.


I started searching online for resources about liver disease and especially Biliary Atresia. As the weeks passed, Monkey continued to turn more and more yellow. She was actually on the orange side at one point in time. People told me all the time that she had such a beautiful complexion. I didn't have the energy to tell them why they were so wrong after I had already explained it for the billionth time that day. And as the weeks passed, I found different sites for liver disease resources, but most of them only had extremely sad stories of children not making it past 2 years old or past major surgery. It was deeply depressing and I was verging on panicking, though it really didn't show outwardly.


As Monkey's story goes, she did present her case very rarely. She's my child, why would she not be difficult? At 10 weeks 1 day her stool turned completely white. This was a major indicator of BA. I called her Pediatrician first thing Monday morning. By 5 p.m. that night he had arranged for us to take her to Children's Hospital for evaluation. He also asked me what I thought she had. I told him that I knew she had BA. He said that he thought so too, but was still optimistic. I don't know why I knew, I just did. Two days after we went to Children's, Monkey was in surgery for major reconstruction of her intestine so that the liver could, hopefully, drain bile. Two days after that, I found Liver Families.


I had decided to do one last search for liver disease and include the name of her sugery, the Kasai. Like magic, Liver Families was the first result to pop up. It was like the gods of the internet knew I needed these people. Liver families welcomed me and Monkey with open arms. They, along with our study coordinator and eventually our Transplant nurse, were the reason I remained sane through Monkeys hospital stays. I could ask them anything and they would always share their experience and expertise. I have never met these people, but I hope, pray, and cry for every single one of them and their children. My heart breaks and jumps for joy with every ounce of news I read. I truly hope that I am now helping others who are just starting this journey. Without Liver Families, I don't think that I would have made it to the other side of transplant as well as I did.  Thank you Liver Families.


I can't stress enough how important Organ Donation is to the lives of people around the world. Especially our children, my children and my liver families.

Tell the truth Thursday

I really like last week's installment of To tell the truth Thursday so I thought that I would continue it this week.

1. I am currently rocking out to Adam Lambert's CD on my computer and writing my blog rather than doing much needed laundry.  I mean, who needs undies anyway?!

2. I am secretly going to be crushed when I don't make it onto the derby league. Try outs are this coming Monday.

3. I am throwing around the idea of trying to write a children's book about Transplant.

4. I have zero shows on my Calendar for March and I am panicking!  I really don't want to lose leader for Partylite.

5. I hate my weight (which if you have read this blog for any length of time, you know) and am wondering what needs to happen again to make myself motivated to get back on the 30 day shred/exercise/eating right bandwagon.  If you happen to be on said wagon and are driving by, feel free to pick me up, honk, or run me over!

6. I fell asleep in the comfy recliner yesterday for 30 minutes while holding Mouse.  Not so bad you say?  Well, it happened to be while Monkey was running free about the house!

What do you have to tell th truth about?

Wordless Wednesday.....3 months

That's right, little mouse is 3 months old today.  It's so hard to beleive!

 Here are one month.........and two month too.  Look how she has grown!

Happy 3 month B-day baby girl!

Prayer Reqest..

I would like to ask any of you who read my blog or Monkey's blog to pray for a friend of ours. His name is Jax and he is currently on the Liver transplant waiting list. He is 9 months old and has Biliary Atresia, the same disease Monkey was diagnosed with. Jax is not a candidate for a living donor due to complications with his portal vein. Please pray that someone says yes to giving him a chance at life.



It is a bitter sweet prayer, to ask for one child to gain a life due to someone else losing theirs.  Trust me, I know.   While Monkey was a candidate for a living donor, we received the call before we had the chance to further explore that option.  We were veru blessed and Monkey was only on the waiting list for a total of 28 days.  I can only hope and pray that Jax has such a short wait.  He has already been on the list for 14 days.  Please keep little Jax in your thoughts as well as the families who are saying yes to saving other lives.

Tell the truth Thursday

So, I stole borrowed this idea from Christina Lee over at Write Brained.  It is perfect for me right now as I am completely out of things to say and too exhausted to really think of anything clever.

1. I am SO tired of hearing about Mark McGwire and how we should all just forgive him for doing steroids.  Umm..how about he takes responsibility for his actions because he WANTS to, not because he had to for a job?  How about we, as a society, start telling athletes/politicians/famous people that it is NOT o.k. to do things that are wrong and get away with it?  That teaches NOTHING.  Ugh!

2. I feel completely and utterly guilty about feeling frustrated with Mouse last night because she was being clingy for almost 6 hours straight!  Just crying every time I put her down.  I should feel happy that I have a happy(most of the time), healthy baby.  Instead, I feel frustrated and then sad and then guilty because I think to myself for just a second that when Monkey was her age it was easier.  THEN I feel even guiltier because a thought like that should NEVER cross my mind.  Monkey was in the hospital at this age with her belly as large as a basketball and puking all over me every time we gave her a bottle.

3.  I secretly like Lady Gaga's songs even if I can't stand her as a person.

4. My desk is a disaster and I have to admit to myself that it is never going to be just as I like it.  I keep piling stuff on top of it so of course it isn't going to get any better.

5. I would love to have the time and money to go back to nursing school.  Well, money anyway.  I have the time, but that would mean the girls would have to go into daycare.  In order to put them in daycare, I would have to go back to work full time.  Going back to work full time would not allow me to go back to school since I would have to work so far away in order to make enough money to afford day care.  It's a vicious cycle and I hate it.

6. I want to be a writer, but I don't have the willpower or train of thought to actually sit down and write a book.  I don't even know what I would write about.

7. I am undercover or not so much geek.  I like playing 40K and MMORPGs and reading on-line comics among many many other geeky things.

Do you have anything you need to tell the truth about?

Slacker

I'm a slacker, I know.  I am so sore and tired right now that I just want to curl up right next to the nice warm fan of my laptop and sleep for 3 days!

Derby is kicking my ass.  Why, oh why did I ever think that this would be a good idea just 12 weeks after having a baby?  I am SO out of shape it isn't even funny.  I feel like an idiot becuase I can't even get back up half the time we do one or two knee falls.  Ugh!  I just flail around the floor like a dying whale.  It's horrid, really it is.  Oh, and it doesn't help that my feet got fat with this pregnancy so my skates are too small now.  My feet are cramping like crazy, but we don't have the dough to buy new skates right now.  Plus, I don't want to buy new ones before I know whether I make the league or not.  I have no delusions that I will actually make it this year.  I fully expect not to. 

So, for now I leave you with this parting thought.....Why does the muscle in my underarm hurt and why do I keep punishing myself?!!!!

Wordless Wednesday.....Such a sweet little Reindeer

Since it is a cold and snowy day here, I thought I would post a picture of the cutest little reindeer you could ever hope to see.  The reindeer suit served as Mouse's snow suit for awhile before and after Christmas since she was in newborns for so long. (Now she is growing out of everything in a matter of days!)

Sunshine on a snowy day

I am SUCH a slacker!  I haven't been on the computer much since Thursday night so I haven't posted anything.  I also, just now found out that I was given an award by two great bloggers that I follow.  They are wonderful bloggers and I get a lot of inspiration from both of them.  You can find them at:  Peterson St. Louis and  Acting Balanced.  I hope you go and visit them when you get the chance.  It was such a nice surprise to find on this cold, snow covered day. 

So, I am going to do my duty and share this great award with someone else.

It's the Sunshine Award!

Here are the rules:

•Put the logo on your blog or within your post.


•Pass the award onto 12 bloggers.

•Link the nominees within your post.

•Let the nominees know they have received this award by commenting on their blog.


•Share the love and link to the person from whom you received this award.






Here are the bloggers that I am passing this award along to.....

Motherhood Uncensored - her shred blog is helping to get me back on track now that I have shoes to start the shred all over again.  Check out her regular blog here.

Wee Shenanigans - Momma Shenanigans is a wonderful blogger and may have been the first blog I ever followed.  She had a great sense of humor, wonderful giveaways, and is an inspiration.

In the Trenches of Mommyhood - She is definitely in the trenches. 

Finding yourself, Despite yourself - Fidget is a gluten free mommy who doesn't hold any punches.  Her stories about her family are funny and familiar.  She also posts some pretty yummy recipes.

Write Brained - She is a great writer and makes some pretty cool jewelry too.

Muffin Tin Mom - She has given me some wonderful ideas for Monkey.  Especially for snack time!  Muffin Tin meals rock!!!!

Xmas Dolly - It's always Christmas at her blog (Well, at least the background is)

The pursuit of mommyness - She has some great tips on how to network as well as great support for us SAHMs or those who wish to be!

Cardiocanyography - A wonderful mommy who received a heart transplant just after her son was born.  Yet another story that proves Organ Donation saves lives.

Mamalogues - A wonderful blogger with some funny stories, great discussion topics, and other items that will keep you interested.

a little pregnant - This blog was a great inspiration while we were TTC Monkey.  Great inspiration for me.

Miss Britt - I actually found her on Twitter.  She is funny and is working through some hard issues, but she doesn't pull any punches.  SO glad I found her blog.  She inspires me to be a better writer.

I really hope that you all take the time to visit these wonderful blogs.  I hope you find some inspiration along the way. 
 
P.S. Derby kicked my ass yesterday, but that is another blog for another time. :)

Happy Birthday to me

That's right, today is my birthday. I am the ripe old a young 30 year old woman and I'm o.k. with that. I know a lot of people who have had issues with their 30th b-day, but really, it's not that bad. I am getting to do things now that I didn't get to do when I was 20 so it's all good.


Let me start off by telling you that normally my birthday and Christmas is one of the worst times of year for me. I get very anxious. Not because I am turning a year older, but because of the gifts. I always tell people they don't have to get me anything. Mostly it is because I HATE the feeling of "expecting" gifts when we can't reciprocate the favor. At Christmas the anxiety gets MUCH worse. I truly appreciate anything anyone does for me, but I feel an incredible amount of guilt about it also. However, this year has been a little different. I haven't told anyone that I did or didn't want anything really. Honestly it hasn't come up much and it is kind of nice that I don't have that anxiety.


However, this year the huz did a great job for my B-day present this year. (It certainly wasn't pizza that was ordered at the last minute because he forgot. True Story and I still married him ladies! :) ) Music has always been in the forefront of my life. There has never been a situation that music couldn't help me to cope through. Trust me, we have been through the wringer and music was always there. In the spirit of that, a few years ago my mother-in-law got me my very own MP3 player and I LOVED it. It was the best thing ever. I sat at my desk and listened to it daily so I didn't have to remember how much I HATED my job. I listened to it in the car with the adapter I bought, I took it everywhere with me. Then the unthinkable happened. The media store where I bought all of my music closed!!!! They were no longer going to support my MP3 player. That was over a year ago. I did still use my MP3 player, but I couldn't change anything off of it. Well, the huz got me a brand new 5th generation iPod nano!!!!!!!!!!!


Let me tell you, I couldn't have been more excited! I immediately started to download iTunes and to convert any of the music I still had on my laptop. I see endless opportunities for myself and this iPod. We are going to become the best workout buddies ever! Especially once the weather warms up enough for me to go skating outdoors. The soundtrack of my life currently includes 738 songs. Not as much as I used to have, but we will change that. I have already added several albums and songs to my wish list on iTunes and will start downloading soon. In the mean time, I have been looking for a good holder/arm band for my iPod so I can use it while working out. I haven't found a lot out there for the 5th gen nano yet, but I am still looking. So, thanks hunny! I LOVE it and plan on wearing it out!


Let me go back for a second. I lied when I said that I haven't asked for anything this birthday. I asked for the new nursery to be finished finally and this past weekend the huz, my dad, and my step-father-in-law came over and got it finished. Thank you SOOOOO much! It has been a good thing for me and for Monkey to have her own playroom now. It will be a good thing for Mouse to have a room with her sister in the next week or two when she grows out of the basinet. (She is growing like a weed!!!!!)


So, thank you everyone for everything that you do. I appreciate it from the bottom of my heart! And, so far, 30's not that bad.

Wordless Wednesday.....It's too quiet in here

One day I realized that it was just a litle too quiet in the house so I went searching for Monkey....

And this is what I found!

She apparently felt the need to hide from me while eating the crackers she stole from the snack shack (aka pantry).  Notice that she is still in her PJs.  It was right after she got done eating breakfast.  I swear she tries to make people think that I starve her half to death!

Long Lost Love

I have a love in my life that has just recently returned.  By recently, I mean last night.  I have been missing this love for almost 3 years now.  This long lost love is Roller Derby. 

That's right folks, I have delusions dreams of being a roller girl.  I was a newbie with the Arch Rival Roller Girls in 2007.  Then I got preggo with Monkey after 3 long years of trying.  I left my dreams behind to be a mommy.  No complaints here, just dreams that went unanswered for awhile.  When I had my chance to go back for tryouts last year some rather unfortunate events took place involving Monkey and I couldn't return.  Now after having Mouse, I am still happy to be a SAHM.  It is the best for me and for them.  I am no longer miserable in a job that I hated and I feel almost confident that they are being properly taken care of.  However, there has been something missing for the past 3 years.  Derby was it. 

It is really hard to explain to people who don't get it.  I LOVED skating when I was younger and was good.  I had always missed skating, but thought I would look stupid going to the skating rink as a grown adult and trying to hang with the kiddos.  Then I read an article in our local paper about Derby.  It got me totally pumped.  I looked up their information and found out that they usually have a few people at a local rink a certain night a week so you can ask questions.  I mulled it over for weeks and weeks before I actually decided to go.  I was like a little school girl again.  I was SO nervous thinking that I wouldn't be anything near what they were looking for.  I mean, hello, one glimpse of me and you would never say Roller Girl.  I'm not fit or thin or Derby.  I was there for a whole hour before I worked up the nerve to actually talk to the girl who was there from ARRG.  The huz went with me just to help boost my confidence, which didn't really help.  Then, I talked to her and she was SUPER nice and gave me information on when and where practices were.  The next week began my love affair with Roller Derby.  I LOVED it and I loved the girls.  I've never had a lot of girl friends and getting to hang out with the bravest, smartest, and best girls I have ever met was great.  I've missed them. 

So, I took the plunge last night and went to info night and signed up to try out for the team again.  I have the next 3 Mondays of Booty camp where I am sure my ass will be handed to me more times than not by the hard, wooden floor that we skate on.  Then, the monday after that (the 4th monday) I will have try outs.  I honestly don't know what to expect for try outs. I would LOVE to say "I've got this, I am totally going to rock and make the team", however I am realistic.  I haven't been on skates in almost 2 years.  Save Halloween this year when I was dressed up as a roller girl while 8 months preggo. :)  Yes, I am a freak.

Now I think Jillian Michaels and I are going to have to get close again.  I have taken far too many a few days off and I have no one to blame but myself.  I am also finding myself a little more conscious of my health and different ways to switch up my workouts to keep myself interested.  For example, I went to the store the other night to get curtain rods for the new nursery (which is finally done!!!!) and I picked up a Shape magazine.  I also happened to purchase a New Moon sky bar and a heart shaped Reeces Peanutbutter cup. Don't judge.  I am sure the cashier was thinking "Wow, look at that fat ass trying to convince people she is getting in shape by throwing in a magazine with this junk".  I have one thing to say to her "I have no regrets!"

So, Jillian Michaels and I will continue our hate/hate relationship and I will keep you posted on whether I make the team or not.