Friday, January 29, 2010

Well, I let the blog get the brunt of my pity party yesterday. I guess this blog gets to be therapy for me. I felt better after venting and I woke up with a brighter outlook this morning. It reminds of the song that I sang when I was little for an Annie look-alike contest, "The Sun Will Come Out Tomorrow." I talked to a nurse yesterday about my concern with the weight difference, and she is going to talk to the doctor and let me know why. That will be good to know what she is thinking. Because of the blood in her stool, a nurse came to get a blood draw this morning. The results showed her hematicrit levels are dropping so they scheduled a blood transfusion for tomorrow. Pending no complications, it shouldn't be too traumatic for Lydia because they should be able to do it through her picline. I was really concerned about her getting the picline, but it has been a huge blessing for her to not have to be poked for blood labs like she used to be so often. Even though I get impatient, I really am grateful for the excellent care Lydia recieves. I know she is in good hands with her doctor. I also know that Heavenly Father is mindful of her and our family. He has blessed us immensely over the past several months (often through our angel family and friends). I am truely grateful for His love and grace.

Thursday, January 28, 2010

Lydia had an appointment on Monday at the liver clinic. She had gained about half a pound so it was good to be on the upswing again. However, I am frustrated because at the last two appointments the doctor has said Lydia needs to be bigger than what was originally discussed to be able to use my liver. On Mon. she said Lydia should be about 10 kilos which is 22 lbs. They originally said she should be about 18 lbs. Lydia is now on TPN(IV nutrition) for 18 hrs. a day instead of twelve so we are toting around two big bags with her instead of one. She scoots around on her bottom on the floor, but gets frustrated when she is stopped by reaching the end of her cords. She is more jaundice. Her blood labs are getting worse. She cries from pain when she is in certain positions. Her skin on both cheeks has been bleeding when we remove the tape to replace her feeding tube. All in all she's not getting any better the longer we wait for the transplant and I really don't want her to be hospitalized before transplant if possible. I know this is a lot of griping, but I'm just feeling ready to get her on the improving side and I'll bet if she could talk she would tell us she would love to feel better, too. Eden is doing so great with her new liver and I'm anxious for liver to join her on that side of things. So anyway, I'm going to ask why Lydia's weight requirements are going up, because I really doubt my liver size has changed much over the past few weeks.
Thank you everyone for your love and support and caring. I love you all very much!

Saturday, January 23, 2010


Whoa, if you want to see what a really diseased liver looks like, check out Lydia's liver BFF, Eden's. Her blog is: Our sweet little girls must really feel sick with such livers inside of them.

Tuesday, January 19, 2010

Many people often tell us that they are praying for Lydia. How grateful I am for these prayers! I know that Heavenly Father hears and answers them. Considering the condition of her liver(which Dr. Book says is very small now) and the other systems in her body that are showing symptoms of her disease, she has been relatively healthy. She hasn't been hospitalized since Oct., which is amazing! I have also felt our family being strenghtened and our load lightened over the past several months. Thank you all for you prayers in behalf of Lydia and our family. Thank you also for all the hard work that family and friends have been giving us on fixing up our home. This was something we intended to shortly after we moved in here a couple of years ago, but because of a few unexpected setbacks(Lydia's disease included) the house was put on hold. My family came to help on Saturday and Brian's family on Monday and, wow, things are really moving along. We have had so many family members and friends help us in so many ways that our hearts are filled with gratitude. We love you all and appreciate your love and support!

Saturday, January 16, 2010

Lydia's sweet liver friend, London, recieved her transplant yesterday. It has been very touching to me to follow her story. She comes from an incredible family and has a mom who has taught me a lot about love. Her blog site is:

chillin' and grubbin'

Spenc and Lydia enjoying some brocolli (at least the taste of it for Lydia since she just sucks out the flavor and spits it out)