Liver Families 4th Birthday

The above montage is from a board that I joined right when Ember was diagnosed with Biliary Atresia.  Liver Families has helped me through SO much.  I am so blessed to have such great internet friends as the people on Liver Families.  I am sad that we share the common bong od liver disease, but I am glad that we have a place to share stories.  Please sign up to be an Organ Donor today.

Prayer Reqest..

Ember would like to ask any of you who read her blog or my 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 Ember 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.  Please keep little Jax in your thoughts as well as the families who are saying yes to saving other lives. 

Special little girl...

As the months have passed since Ember has become a big sister I have been wondering several things.  One of which has been whether I was going to love her sister as much as I love her. I do...surprised? Me neither. Another is how I am going to manage to show Ember that she is still a very special little girl.  I have to admit that I have been failing in the second point that I just mentioned.  Ember has become a happy, healthy little toddler and I sometimes forget how extraordinary she is, even if it is just for a moment in time.  I want to stress to her that she is important and that she is oh so special and I have been neglectful of that since her sister has been born.  Let me state right now that I do not believe in playing favorites with your children or grandchildren.  I went through that with one of my sets of grandparents through most of my life and I will not stand for it when it comes to my children.  So it is not a matter of showing favorites for me.  I guess I mean to say that I think that Ember is feeling a little neglected because she doesn't have exclusive mommy and daddy time anymore.  She hardly ever shows it though because she is so in love with her sister.  She always wants to hug, kiss, and love on her.  She is also very good at helping when I need a burp cloth or a blanket.  We are still working on getting her to leave a blanket on her sister when she is in the bouncy seat. 

While Ember is a special little girl becuase of her transplant and her opportunity to change lives through her story, that does not define her.  She is special because of her love, her sense of humor, and her creativity.  She shows unremarkable love towards everyone she meets.  She truly watches people and wants to hug or high five or wave to them.  She LOVES babies and children.  She is so small, yet she has an incredible amount of compassion.  She comforts her sister when she cries.  Admittedly, she has also comforted me when she has caught me crying.  Her sense of humor is like nothing I have ever seen before.  Well, I have...it's her father's sense of humor.  She finds the smallest things funny and has this infectious laugh.  She thinks that the cat is funny even if he is just sleeping.  And, you know what?  He is sometimes. :)  And her creativity is amazing.  She loves to draw, but she also loves to figure things out.  She can figure out how to turn a toy into a stool to sit or stand on in 2.5 seconds flat.  She can also figure out how to fill and dump out any container you could ever imagine in less time than that. 

I can only hope that as she grows she can share her story, become an inspiration to others, and teach her sister how to love, laugh, and live as joyful a life as she seems to have right now.  I hope she can teach her sister that she is also a special little girl.  I hope that I, as her mommy, can teach her that both of my girls are extraordinary in their own way.  Ember is a special little girl, but not because she is defined by her transplant or her disease.  It is because, at the ripe old age of almost 21 months, she has defined her transplant and her disease as part of her life.  She has made herself and her life the story and we are all along for the ride.  I hope that along the way she can teach me how to enjoy the things that she does along with her sister.  Oh, and if she could decide that she would like to be potty trained sometime soon that would be great too, but I am not holding my breath!!! 

I love you my beautiful, special baby girls.  Live long and prosper. Yes, I like Star Trek. Don't judge.

Crazy toddler

Ember has been getting along pretty well since Autumn has arrived. The novelty of having a new baby has not worn off yet. I am waiting for it to happen, but so far so good. She constantly wants to love on and hug Autumn. She even tries to help us burp her whenever she can. Though, sometimes she does try a little too hard!

Aside from getting along with Autumn, she is getting into EVERYTHING! I do mean everything. She is absolutely her father's daughter. She is way to smart for her own good. She is trying to figure out both baby gates that we have. She watches us open and close them and then walks up to them later and tried to push on the buttons. Luckily she isn't strong enough for that yet. She has also been tyring to figure out how to plug the cord back into the swing. Every once in awhile she will get a hold of the cord once we have unplugged it from the swing and the wall (off of mommy or daddy's desk!) and walk up to the swing, with the correct end mind you, and try to plus it back in. It is neat to watch how she figures things out, but it is also not such a good thing.

Right now she has been getting into a lot of trouble for grabbing things off of mommy and daddy's desks. Especially drinks. I can't tell you how many times I have had to change her right before we leave the house because I turn my back for two second and she has dumped a drink down the front of her! I should have learned long before now that I can't turn my back at all!

She also knows exactly where her snacks are in the pantry. She will run right up to the door and knock on it if it is closed. If it is open, she just dives right in and grabs a few snacks then runs away! She is always laughing when she does it. I fail to find the humor in it sometimes. :) Other's I must admit that she is just too stinking cute.

One of her latest laughs is standing in front of the humidifier mist. She stands there and just laughs and laughs. Then she walks about for about 0.2 seconds and runs back to it and laughs some more. It really is cute. She just can't quite figure it out. She is also a big fan of music. Almost any music at all will get her dancing. Especially anything from The Laurie Berkner band. Any time something from them comes on, she drops whatever he is doing and just starts dancing away. It used to just be one big screaming and spinning in a circle fest, but now she is actually getting some moves down. She bends her knees and bounces and swings her arms! Too cute as well! I know that I am bad about leaving the TV on all day for her, but I do it because of all of the music. NickJr is very good about having tons of music videos in between their shows. Most of the shows she actually plays through so I feel that it is a good compromise.

As far as LuLu the Liver is concerned, she is happy. Ember's numbers have all come back great. We are going again next week for another round of labs and hope to hear that they are just as good. She is growing tall and gaining weight as expected which is very good. We are just so blessed to have her as healthy as she is.

I'm the big sister!!!!

On 11/24/09 Ember welcomed her new little sister Autumn Therese into the world. She decided to make her grand debut a little earlier than anyone expected so Ember was a little less than prepared. She thought that she was just going to have a fun day at home with Grandpa and then mommy would return to her. Well, that was not the case. Autumn decided to be too lazy for the Dr's liking so he said she needed to come early. So, Ember did get to spend the day with Grandpa, but mommy nor daddy returned to her. Instead, that afternoon she got to take a ride to the hospital to meet her new baby sister.

We were all worried that the minute she got into the hospital and saw the nurses and dr's she would freak out. She has been having a lot of major anxiety about dr's and dr offices lately. Enough so that she just starts crying at the sight of a white coat or blood pressure cuff. However, she did amazingly well. She was also VERY happy to see her baby sister. She immediately wanted to touch her and love on her. Due to this event she also got to have another first. She spent her first nights away from mommy and daddy. The first two nights she stayed in her own crib with grandparents staying at our house, but the third night she stayed the night at Maw Maw and Paw Paws house. Her first official sleep over!

Since we have been home, Ember has been great with the baby. She has been a little fussy, but it's not really from being jealous. It is because mommy can't pick her up on her own yet. Not sure when I will be able to, but I want to so bad. Now, two weeks out, I can have her put on my lap and I can hold her, but it's not the same as being able to just pick her up whenever she wants/needs to be held. Plus, she has gotten a cold and has been very stuffed up the past few days. She has continued to be VERY loving towards Autumn and loves hugging, patting, and kissing her on the head. It is so sweet.

Today we had a slight meltdown however. Ember wanted to love on Autumn and hold her like mommy was so I told daddy to sit her on the couch. We then let Ember "hold" Autumn. She was beaming and just kept staring at her. We did take some pictures. The meltdown happened when we tried to take Autumn back. Ember yelled at us and held onto Autumn. So, we let her hold her for a little bit longer. Then I tried to take her again and Ember did the same thing. She yelled and tried to pull Autumn closer to her. I explained to Ember that Autumn was not a baby doll and then took her back. Ember threw an all out fit. Crying and yelling and actually laying down on the floor kicking her feet!!!! It was actually pretty different. She has thrown mini tantrums before, but nothing like that!

The rest of the night she was alright with her. She continued to want to try to hold Autumn, but didn't really throw any fits when we said no. I am sure that the novelty will wear off soon and Ember will want us to take her back! hehe For now though, I am enjoying that she is being such a great big sister. I look forward to them growing up together and becoming fast friends. They are both such beautiful little girls and I feel confident that they will be best of friends and love each other no matter what. At least that is what we are going to try to teach them. We are truly blessed to have Ember still with us and now we are doubly blessed to welcome a new little girl into our lives. Hopefully Ember will teach her all of the things that she has taught us the past 18 months and even more as they grow up together. The picks below are Ember meeting Autumn and Ember in her "I'm the big sister shirt". She also got the puppy she is holding as a present.

Pictures of me

Here are some pictures of Ember from the vacation we took to branson. I have also added them into her slide show along with a few others taken from that vacation!

Butt changing time!

Daddy took me on a ride. Doesn't he look comfy?!

Vacation wears her out!

I'm going to be a great big sister!

Ember has already started to display the qualities that everyone wants in a big sister. Much to the dismay of the cat. I can see where she would be confused that he is a little person. I mean he does way 19 pounds and for the first 8 months of her life, he weighed more than she did! I'll give you some examples of what makes a great big sister and how she meets these requirements!

1) Be loving and caring at all times - This includes sitting on, laying on, and using the cat to push off of when standing.

2) Help out with feeding time - eat goldfish while running around the room and then notice that the cat, as thin as he is, looks like he needs food. Proceed to chase him around the room, goldfish in outstretched hand, trying to get him to take it from you. Never mind the fact that if you DO happen to catch up to him, you hit him in the face with said goldfish!

3) Help out wherever you can - If mommy is cleaning up, try to clean up to. By cleaning up, this includes the cat. And it means that he needs to move from where ever he is so it can be cleaned. This can be done by either patting him on the head or trying, unsuccessfully, to pick him up. Who cares that he still weighs over half of my body weight!

So, I have a feeling that this big sister stuff is going to come SO naturally to her that we have nothing to worry about! (uh huh!) I do have to say that she does really well, most of the time, around other babies. Here's hoping!