It has been over a month now since Ember received her life saving gift. I always knew that she was very sick even though on the outside she didn't really show it. She was, generally, a happy, healthy baby who had a slight "tan". There is such a difference! She has more energy now than she ever had before. She is still out little laid back baby, but the difference is very noticeable. Typically she would take several naps throughout the day. Now we are lucky if she takes one for longer than 15 minutes. I am sure that she doesn't nap because she thinks she is going to miss something now. Just like her great grandma. Always has to know what is going on. :) She sleeps all night long no matter what time she falls asleep though - 8pm or 11pm and wakes up at 6:30 on her own. That is good news for us!
We already got all of her Christmas shopping done and despite telling everyone and myself that we were not going to go overboard, we did! Although, I do have to say that the items we got her (aside from the clothes) will last her awhile. Almost all of the toys we got her are 6-36 months. Hopefully she will enjoy them.
She started rolling over in full force again yesterday. Of course, she will not do it while I am watching her, but she does do it. I have her on a blanked behind me when I am working at my computer desk during the day. Yesterday I turned around to check on her and she was on her belly. I let her be because she needs to tummy time and if she is going to do it to herself, all the better. When I turned back around a few minutes later, she was on her back again at the edge of the blanket. I moved her back to the middle and started working again and when I checked on her she had rolled over again. Too exciting! So, after a month, we are back to where she was pre-transplant. I think that is actually pretty good. I know that I wanted it to be faster, but knew that it could take much longer. Now we just need to get her working on the whole sitting up on her own thing.
We are smack dab in the middle of planning a Trivia Night fundraiser for her as well. I am continually amazed at the generosity of people. Especially people who don't know us or our family. We have had so many things donated to us from complete strangers for the raffle and silent auction. So, thank you to everyone who has heard her story and felt the need to help out. It means so much to us.
We are very lucky and have been very blessed in our journey through this disease. My only hope for Christmas this year is that all liver babies out there receive their gift of life and are able to make a full recovery. Please consider becoming an organ donor today. Organ donors save lives, including Embers.
Tuesday, December 23, 2008
Thursday, December 11, 2008
It has been 23 days since Ember's transplant and thinks are going really well. While we did have one small bump in the road right away, things have been good since then. She has been doing really well at home. She does have her days of being a fussy baby, but nowhere near how she was when we first came home. She has started to babble again. Next to smiles, this is the greatest thing ever! She has not really been trying to roll over yet, but I know she will get there. It was her only mode of transportation so I am sure she will figure it out again.
This past weekend we had the opportunity to be honored guests at the first annual Children's Hospital Holiday Festival. They had 30 honorary trees that volunteers decorated for patients of Children's Hospital and then donated to them. Ember's tree is perfect for her! It is decorated in all pink and even has a princess plaque on it! The lady who decorated it even made the tree skirt with a pink fuzzy border and her name on it! We are so grateful to have had this opportunity! It was nice to get to see some of the other tree's as well.
Again, I am very thankful to Ember's Angel. You are constantly in our thoughts! I had always known that I was going to get a mommy tattoo (yes, I'm one of "those" people. *gasp*!), but it has changed slightly. I am going to get a mommy tattoo and a tattoo for Ember's Angel. I know that it may seem silly to most, but it's my way of always saying than you. Even when Ember grows up and moves on. It's something that will mean a lot to me for the rest of my life and hers. So, as soon as I save up enough money they will be added to me! :)
For now, we will enjoy our Christmas and be thankful for every moment we have with her. She truly is our fairy tale.