I can't believe blogspot has left this blog up.....

I have completely neglected my sweet maddie blog.....and she hates being called maddie. She is seven years old, soon to be eight and 100% Madeline. I am so thankful I made this blog years ago. Many of these pics I have forgotten about. So since my memory isn't what it use to be, I am going to pick up where I left off and be thankful seven years from now that I documented so many important things in my baby girl's life.

Matt's Valentine Party

We had a nice evening at Uncle Matt's house. Of course there was Rockband and a fun game called Apples to Apples. Really enjoyed getting out. We took some dorky "prom pose" pics just for fun and he demonstrated how to use his new snuggie Kasey bought for him. Fun Times!!!!

Happy Valentine's Day 2010

I am so thankful to everyone who follows our blog. Sorry I haven't kept it as up to date as I would like. Hopefully 2010 will be more normal and I can keep pictures current. Thanks for being interested in out little family! I love this little girl so much my heart just overflows!

Out of Sequence

This wonderful picture was taken at Christmastime in Memphis. This is my cousin Emily and her daughter Amelia (left) and my cousin Sara and her daughter Ella (right). I really love this picture and had to post it! All 6 Nokes girls!!!!!

My Sweet Valentine 2010

Madeline had her school Valentine's Day Party this past week. It is a big deal in schools now. I would have to say the Valentines Day party is bigger than Christmas! She new I was coming to the party but we surprised her with GiGi coming too! It was a fun party!!!!!

Chris and I

My sweet brother and his girlfriend babysit for Chris and I from time to time so we can have very much needed date nights. They watched Madeline for us Friday night so we could go celebrate Valentines Day. We had a great dinner and it was nice for the both of us. Thanks Matt and Kasey!!! And we don't feel guilty because Madeline loves it when Matt and Kasey come over! Its a win win!!!!

So Many Snowdays!!!!

Jonesboro has been a bit of a "winter blizzard"! We have gotten 3 rounds of snow and lots of snow days. They have been fun but mama is ready for routine again. Here are some pics of the second snow, which was the biggest and best. BTW- That is a weenie dog snowdog, which was a really hard dog to make!

Ballet Promotion

Madeline started back to ballet in January. She decided she likes ballet more than tap....and wants to be in the Nutcracker someday. We were told at the end of last ballet season she would need to repeat stepping stones ballet before progressing on to beginning ballet. But on our first day back this semester, she was PROMOTED to beginning ballet! She was very excited to say the least. Now she is in the "BIG GIRLS" class. I hope she really enjoys it and it is something she sticks with. She was also very happy to find out she will now be in the same class as her friend Lexi. They are a pair!!!!! Now I cant wait for the recital in May!

1 year Anniversary

Well,
Today January 7, 2010 marks my 1 year annivesary of when kidney failure began. Since last year life has changed in so many ways. Some good and some terrible. Today is a spooky day because I am thinking back to how I felt last year and wondering how I made it through. Well, I know that answer. God. That is why I am still here. I pray all of the time to please let me see my daughter grow up. I know he won't let me down!

HUS, PD, clinic, renal diet, phosphorus binders, blood pressure, doctors visits, shots, labs, fluid restriction, pills, pills and more pills are now, just a way of life. Almost cant imagine life before.....well yes I can. And I know someday I will live that life again!

Since aHus became an unwelcomed member of my life, lots of good things have happened. First of all I have become closer to God. He has always been in my life but now I lean on him more than ever. I am reassureed everyday of my life how lucky I am to have Chris as my husband. He really spoils me. He helps carry all of my PD solution at night and sets my machine up for me. All I have to do is connect. Sure, I can do it myself, but there is something about him doing it that makes me feel more normal....I dont know why? I love him so much. I also appreciate Madeline more than ever. I try to soak up as much of her love as I can. And try even harder to be the best mom I can be. She is my rock. I have realized what a lucky and blessed girl I am to work for Sensational Kids. They have stood beside me every second of this year. I could not ask for better collegues. My family has been very supportive in so many ways...too many to list because I will leave someone out on accident.....and we know how that goes! LOL!!!! I have an amazing network of friends and family who took me to dialysis every single time I had to do hemo. I never sat alone in that chair. I have a loving church family and more friends than one person deserves. People from all over have reached out to help me and my family. I have met others with HUS and have developed some special friendships with them. I wish we could have met under different circumstances, but I love them and they are wonderful people. My sweet girl started Pre K, ballet and tap this year. She is growing up too fast. We got another dachshund to add to the family, Mr. Gus. Gracie and Gabbie have adjusted well. I have one sibling named Matt. We have become very close this year. We were close before, but we have a bond now that I dont think I would trade for a kidney. He is donating his kidney to me if they ever figure out a way to do it with me and my HUS situation. He always makes me laugh and is always there for me. Kidney or no kidney he will always be one of my heros. The other hero in my life is Chris. He has had to do things for me, that no husband should ever be required to do. He made sure I was getting good medical care when I couldn't help myself and has taken great care of Madeline when I was sick. He is a wonderful husband, father and best friend.

Chris and I ended 2009, which I was glad to see end, by making the long trip to the Mayo Clinic. We learned alot about my HUS and possibilities for the future. We made a vacation out of it too. We spent a few days in Chicago where he surprised me with tickets to the Joffrey Ballet to see the Nutcracker. We went to art museums and galleries in Chicago. Once we made it to MN, we went to see the bodies exhibit, Mall of America snd we went ice skating.....(bad idea with low platelets....but still fun!!!)

Just reflecting back on 2009 brings back bad memories but I think my good memories totally outweigh the bad. I am so thankful to Barnes Jewish hospital in STL, who saved my life.....twice. Anyway, I pray 2010 has even more positive memories and that medicine and science makes some breakthoughs in aHUS. God Bless

Update

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?

Meet Oscar "Gus" Ziegler

More News......

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.

Good News

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!

Beauty and the Beast

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!

The Little Mermaid

Madeline really enjoyed the Little Mermaid play put on at ASU. She even took her picture with Aerial...which really surprised me. Normally she won't go close to characters.

Swimming at PaPa and GiGi's House

A Fun Day in the Sun

The Girls

Just a cute picture of Gracie and Gabbie

Members

We are so excited that we joined St. Paul United Methodist Church on Sunday May 31, 2009. They are such a wonderful church family and everyone has been so welcoming to us. We will always remember that we joined on Pentecostal Sunday. What a wonderful day!

The Neighborhood Girls

Todays Project

Since I have been sick and Madeline quit going to daycare we try to do a project at least every other day. Today we did 2 projects. She painted a canvas and a plate. She loves art!