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!

My Mini Monet!

One of Madeline's favorite things to do these days is go to Hobby Lobby (her fave store) and but a canvas and paint. She loves to paint on them. She does a really good job too. These are some samples of her work.

My Sweet Cousin Sara

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!!!!

New Music

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.

My Flower Blooming

Spring Showcase 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!!!

http://www.youtube.com/watch?v=YNuQrA8m0f0
I cant figure out how to post a video on here. But here is the link of Madeline singing her version of Ring of Fire. She loves his songs and it is histarical watching her sing them!

3rd Annual Autism Awareness Walk 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!

Temple Grandin!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

I am a little star struck in this picture! What hope and inspiration this brilliant woman gives to families and their children with autism. Such an honor to meet her.

Accepting Proclamation from Mayor Perrin

This is me accepting a proclamation from the mayor on behalf of AANEA. April 21 is now Autism Awareness Day in Jonesboro, Arkansas.

Holly's Wedding Dress Fitting

My beautiful cousin Holly is getting married. Madeline and I were invited to tag along at one of her dress fittings. Madeline had a great time looking at all of the "princess dresses". It was great to see Holly in her dress. That dress was made for her!

Observation Day at Ballet

Every semester Madeline participates in some type of organized art activity. This semester we started ballet. She really likes it. I think we are going to continue with it over the summer. She is in the Stepping Stones class. A couple of weeks ago was observation day so the parents could watch and see what the girls have learned. Her class is made up of 3 and 4 year olds. It was the cutest thing I have ever seen. And yes, I was so proud I cried. Next weekend is the "Spring Showcase" which is her recital at the Forum. I am so excited to see my baby on stage performing.

Easter Egg Hunt at Church

Ready for Easter Sunday!

Easter Morning

The Easter Bunny was very generous this year. Madeline got all kinds of toys. She was so excited!

Easter Egg Hunt at the Frye's House

We had a great egg hunt at the Frye's house on Saturday. They are wonderful neighbors. They have helped me sooo much throughout my illness. I was afraid it would rain Sunday and Madeline wouldn't get to hunt eggs. They were so sweet to have an Easter egg hunt for her and their children. Thanks so much!!!!

Holly's Wedding Shower

These pics are from Holly's wedding shower. Madeline was her "helper" opening gifts.

Snow Day March 09

Chris and Madeline made their first snowman together today. She had such a good time. I really enjoyed watching them put it together.

My Little Ballerina!

Madeline and her friend Anna at Ballet class.


Madeline gettting fitted for her Ballet shoes!

Long Time!

Wow it has been a long time since I blogged. As most people know by now I have been sick. Somehow I got a rare blood disorder called Hemilemic Uremic Syndrome. Not only is it rare but it usually only affects children. (guess I am a child at heart). Anyway it has shut down my kidneys. I now go to dialysis 3 times a week. I spent 3 weeks in Barnes Jewish Hospital in STL. They saved my life. I feel very lucky to still be here on earth. Although, now I am dealing with being a 28 year old with kidney failure! How did this happen......not even the doctors know. This has been the hardest thing I have ever had to go through. There are so many side effects that go along with this disease: high blood pressure, fuzzy vision, shortness of breath, swelling and one of the hardest for me: I can only drink 32oz of fluids a day! That is crazy hard!!!! But I have faith that God will heal me! He will heal my kidneys and restore my health. I have faith! It may take time but I am sure it will happen! I didn't want to post this on Madeline's blog but I felt like I should account for the big lapse in time from blogging.

SNOW DAY DEC 2008!

My Special Gift

I got a very special gift this year! The picture does not do it justice. Chris took pictures of Madeline holding letters that spell "LOVE U MOM" !!!! He then had it framed and matted in a 24" x 18" frame. It is the most beautiful gift ever. I will cherish this forever. Thank you so much Chris! I love you!

Santa Claus brings presents!

Madeline had a wonderful Christmas. She got a Thomas the Train set, a beautiful doll house, barbie dolls, baby carriage with baby doll and way more toys than she needed. She had such a great time opening her gifts!

Party # 3 Chick Fila

Today was the last party of "the Madeline turning 3 celebration!" We had a great time at Chick Fila! The staff was so nice and helpful. All of the kiddos had a good time playing in the play area! Thanks to everyone who made it!!!!

Party #2 Family Party/ Thanksgiving

Madeline had a wonderful day at her birthday party/Thanksgiving meal. She loved all of her gifts!!!! I forgot to buy candles, but she got to blow out a glade candle instead LOL!!!!! Matt bought her a HUGE Thomas the Train tent and tunnel. It was a big hit....just not sure where we are going to put it! Thanks to everyone who was there...and Holly and Matt G. who couldn't be there! You all made her day very special!

Madeline Party #1

Madeline had a party today at snack time at her school. I titled this #1 because we are having 3 parties this year. They are all small though. We had one today with her school friends, the second will be on Thanksgiving Day (her real bday) with the family and the last one will be at Chick Fila on Saturday. That is her favorite place to eat and wanted to have a party there. I try hard to make her day special, especially since it is also Thanksgiving!

Grossology!!!

We visited the Grossology exhibit at ASU. Madeline thought it was funny to make the burp model "burp". Very interesting exhibit!!!

Breakfast With Ballerinas

Today Madeline, my mom and I attended the 6th annual Breakfast with Ballerinas. It is a fundraising event to kick off the Nutcracker season at the Forum. We are going to take Madeline to see the Nutcracker in December and she starts ballet in January. She had a great time meeting the big girl ballerinas. She was the most beautiful ballerina!!!

Pig Tails!!!!

Trick or Treat

We had a fantastic Halloween! My Madeline was a beautiful ballerina and really enjoyed trick or treating!!! Our dogs also participated in the festivities. Gracie was a hotdog and Gabbie was a lady bug. Fun Times!!!

My New Ride!

Okay, so you WON'T see me around J'boro on it, but Madeline and I have a good time in the neighborhood. It was kind of scary at first with her on the back, but I got the hang of it. She really enjoys it and I get some much needed exercise! Thanks Chris:)

Tricycle!

She has got the hang of the tricycle thing. She wasn't too happy about the helmet though! Safety First! Good thing I made her wear it, she had a crash when trying to turn around.

Madeline's First Beach Trip

Zoo 2008

The company Chris works for had their annual company picnic at the Memphis zoo last weekend. Madeline had a list of animals we HAD to see. The main ones on her list were the elephants and giraffes. We had a great day.

A Nasty Day at the Fair!!!

It was a rainy day at the fair. But I promised Madeline we would go today. So I kept my promise. My mom and I had gotten a manicure and pedicure before the fair and then went stomping around the muddy fair!!! Madeline had a good time though.

GiGi and Madeline on the Carousel.

Madeline and GiGi on a hot air balloon ride. This ride went pretty high in the air! Glad GiGi rode it with her!

Madeline in her car! This year she was big enough to ride it by herself...last year she had to ride with another child!

Madeline and I on the Carousel

Walk the Line

This is the funniest thing! My child, my 2 year old, has to be the biggest 2 year old fan of Johnny Cash and June Carter Cash.....Well, not the real ones. Joaquin and Reece! But still, all she wants to watch is Walk the Line. I have to be careful because there are some parts of the movie I don't want her to see. So, I have watched Walk the Line about 10 times since Saturday to censor her watching it! AND, we now have the soundtrack to the movie, which is all she wants to listen to in the car. The minute we get in the car she says, "turn John and June on mommy!" It really is funny to see a 2 year old singing Ring of Fire! Her favorite song is the last one on the track, the duet with John and June singing Jackson!!! It is amazing what little ones decide they like. So, the song on my playlist Johnny and June is dedicated to Johnny Cash's YOUNGEST FAN!!!

WonderPlace....A Wonderful Place!!!

While in Little Rock we stopped by the Wonderplace. It is this wonderful childrens play place! Madeline was so intertained and enjoyed it so much....to bad Jonesboro doesnt have one:(

First Trip to the Capital

Madeline had her first trip to the state capital this week. I went to hear a Legislative Task Force Hearing on Autism. It was a packed house!!!

Let's Play Some Kickball!!!!

Madeline started her first organized sports team this week! She is playing kickball!!!! She has had so much fun so far! And she is pretty good at it.