Monday, February 23, 2009

I can't breathe!

If Ember could talk, that is what she would be saying right about now. She has what appears to be a head cold and, well, she was so kind and generous that she gave it to mommy too. We have both been miserable for the past week. She has been all kinds of stopped up and every time she tried to take a bottle, she would have to stop every few drinks in order to take a breath. The saline drops are a joke!! They do nothing but make her more snotty. Plus, I can't hold her down every hour to give them to her and then suction out her nose. Her poor nose would be too sore and I can't even imagine what her mucous membranes would look like.

She gets SO mad when you use the nose sucker thing on her too. It takes at least 10-15 minutes to calm her down again afterwards. Today has been the first day that she has really started to actually have a runny nose. It wasn't bad at all today, but this morning it was just gross. She was sitting on the floor playing with her blocks before Matt left for work and she looked at me and this big snot bubble came out of her nose!! Blech! Poor thing was so mad when I tried to wipe her face again.

Other than that she has been doing great! So, since we are both grumpy and sick and not feeling good, I don't have a lot more to say. Oh! I did want to let you know to check out my new blog too. (If you are pressure) It is listed first in the Family and Friends blog list.

Wednesday, February 18, 2009

RIP Dr. Morio Kasai

I just found out today that Dr. Kasai passed away on December 8th, 2008. Click here for his obituary Does the name sound familiar? That's because this is the man who pioneered the Kasai procedure that helps babies with BA. I honestly did not know he was still alive, but suddenly learning of his death has hit me a little harder than I expected. It leads me to think of all of the "what ifs" had this man not ever been born, or not ever gone into medicine, or not ever decided to try to help out BA babies. I wonder, also, if he knew the sheer multitude of lives he has touched. Not just BA babies, but their families, their friends, and anyone else who cares to listen to our stories. I certainly hope that he found joy in his life before his passing. So, today is a bit if a sad day for me, but a happy one as well. I got to have a tiny little piece of this man in my life. I am eternally grateful to him for his accomplishments. Without him, Ember may not be here today. She might not have lived long enough to receive her transplant. So, thank you Dr. Morio Kasai. I am sorry that I did not get to say this to you in person, but I think you now know the magnitude of your one action. Please take care of all of our liver babies who did not make it. I hope you have found peace. Know that our family has with your help.

Tuesday, February 10, 2009

Bye Bye Broviac

Ember's Broviac (central line) removal was Friday. She is now free! No more tubes! She has already had two baths (One of them thanks to exploding diapers) and she LOVES them. Pictures will be coming soon. She got to sit in the sink and play with the water. For the bath she had at home, she played with a Duckie and the water thermometer. It was nice to not have to worry about getting anything wet and to see her actually enjoy a bath.

Now hopefully, she scooting or maybe even crawling will happen. I'm not convinced that the broviac was the reason that she has not started to do either one of these, but it could be. Right now, she rolls or scoots on her back anywhere she wants to go. She is also getting more and more stable at sitting up in her own. We bought her (well, I did) a giant bunny from Sam's on Sunday. It is twice the size that she is! Yes, I know she did not need another stuffed animal, but I had a bear that was bigger than me when I was little and all of the pictures are SO cute. Can I help it that I want her to have that too?

We need to get her 8 month pictures done and I think the Bunny might be part of them. Who knows though. ;) She is chattering up a storm also. Big Grandpa Mike taught her how to scream/yell while he has been on baby sitter duty the past week. (Thanks Mike!) Though, I can tell you, it is really, really cute! She yells at the cat, the dogs, and her toys in this little grunting frustrated voice when she can't get to any of them.

So, right now we are a very happy family as far as the liver issues are concerned. There is other drama, but I am sure it will work out in the end as well. I'll try to post some updated pictures of her later tonight.

Thursday, February 5, 2009

Joy and Pain

The joy for today is that Ember will be getting her broviac removed tomorrow morning! She will finally be able to take a real bath! She will get to wear t-shirts without a onsie underneath to keep the hands off the broviac. Hopefully she will even start to try to crawl or scoot once it is gone.

The pain for today is the loss of yet another liver kid. Faith was waiting for her transplant when she became too ill to receive it. Unfortunately, she lost her fight February 3rd. I can't even imagine what her parents are going through right now.

So, for me, today is mixed with the joy that my baby is progressing and the sadness that another liver kiddo is gone. We will keep Faith's parents and family in our thoughts. We understand that this is, unfortunately, the nature of liver disease, but that doesn't make it any less painful. We will remember you always Faith. May the angels wrap you in their warm embrace.