Monday, November 23, 2009
I haven't updated in forever. I guess that's good bc things have been stable. I feel like a new person. The home dialysis is working great for me. I really have nothing to complain about. I did find out that my hospital in STL doesn't feel comfortable at this time doing a kidney transplant. That was a let down but I am dealing with it. Life on PD (home dialysis) is not too bad. They did, however, refer me to the Mayo clinic. SO soon I will be Minnesota bound to see what they have to say. I am cautiously optimistic and know whatever happens, God has a plan! Happy Thanksgiving to everyone. I have SO much to be thankful for this year......and the day after Thanksgiving, my baby turns 4!!!!!! Where does the time go?
Sunday, September 20, 2009
I havent blogged in a while. Life has been so busy. We got a new puppy, made trips to STL, Madeline got glasses, she started Pre K, I started peritoneal dialysis, Madeline started tap/jazz class, I cant drive because of three grand mal (tonic clonic) seizures, joined our church St. Paul Methodist,became addicted to Rockband, learning to play a dulcimer, working 4 hours a week, kickball is starting, trying to become an advocate for kidney patients, staying healthy and trying to get a kidney transplant. And trying to be a good wife, mother, daughter, sister, friend, niece, cousin, occupational therapist and patient. I got some discouraging news this week. Barnes will not be able to give me a kidney transplant. I am too risky and have an 80-100% chance the HUS will come back of they operate. Which would immediately kill a new kidney. They have refereed me to the Mayo clinic. The Mayo clinic has a study going on with the drug solaris that has been successful in other HUS cases. I believe God took me out of fabulous hands (Barnes) and is placing me in an even better place (Mayo). They are my last chance for a transplant unless medicine makes some breakthroughs. I believe God can do anything though. He could lay his hands on me this very moments and make my kidneys flow. So, I am not giving up. And the few times I want to, Chris is pushing me on to keep fighting. SO I will. And someday this will all make perfect sense.
Monday, July 6, 2009
I got some wonderful news last week. I found out my mom, dad and brother are all matches to be a kidney donor. Mom and Dad had 4/6 markers and Matt was 5/6. Markers are variables they use to see who is a better match. I am SO blessed to have 3 good matches. After finding this out, I had to make the hardest decision of my life. Who to pick??? After praying, soul searching, and asking my friends and family their opinions over and over and over I decided on Matt. He has told me from day one he would donate his kidney to me. So really all along I knew it would be him. I would have never dreamed that I would be so blessed with 3 potential kidneys!I am grateful to all of my family members who got tested for me (mom, dad, matt and chris)and to everyone else who was willing. I am forever grateful for my brother. He is so generous and selfless. He so graciously will give me one of kidneys with no second thoughts. I don't know how I will ever repay him. I am so full of excitement and joy knowing that this nightmare will soon be over. And just like Matt said, my family can be normal again. God bless him!
2 days after seeing the Little Mermaid, we had tickets to Beauty and the Beast. Uncle Matt went with us. She did not enjoy this performance very much. From the beginning she was scared of the Beast. And in one scene "wolves" cam crawling through the audience and one grabbe Uncle Matt's leg. That was it for her. So we had to leave early. Needless to say, NO character pictures this time!
Thursday, June 4, 2009
Thursday, May 14, 2009
My sweet cousin Sara and her family came to see me on Mothers Day. I felt horrible when I woke up that morning but when I found out she was coming to see me, I cheered right up. We had a really good visit. She has a precious daughter named Ella. Madeline had difficulties sharing her toys but we are working on that. I got to see her husband and my Uncle Dick too! It was a really good time! Thanks for coming to see me!!!!
Monday, May 11, 2009
You may have noticed I have added lots of new songs to my playlist. My blog is intended mostly for Madeline but some of the new songs are not about Madeline. All of these songs have meaning. Some remind me of Chris, my brother, my dad and mom. I just felt like I should add some other memories to the blog. Hope you enjoy my eclectic music choices.
Saturday, May 9, 2009
Today was Madeline's 1st Ballet recital! She did such a good job. I am so proud of her. She was in the Stepping Stones class. She is just growing up too fast. She is my angel!!!! Thanks GiGi for helping me get her to all of her practices. We could not have done it without you!!!
Tuesday, May 5, 2009
Sunday, May 3, 2009
This years autism weekend was a success. I am so sad that I was unable to help out this year due to my illness. The rest of the board and volunteers did a fantastic job. Next year when I am well, I will be back in the game. Here are pics from the great day and some of my best friends!