Blogs from the Christmas Wish, Which Does a Great Job of Telling Our Story! Thanks Girls

Blogs from the Christmas Wish, which does a great job of telling our story! Thanks girls for sharing your views so nicely!

12-17-08 Here is Quinn at Handprints with the motorized wheelchair. It’s way to big, but if she sits criss cross, it works pretty well. She has her button that makes her go, and she gets so excited making it move. It’s pretty fun to see. She is also sleeping so peacefully on her birthday.

Well we have had an eventful few days. We went in to see Dr. Swisher for her two-year check up. Things are going well, she is 24 lbs and 33 inches. Her head has grown almost an inch, which is what I’ve been praying for, because that shows her brain is working and growing which is a blessing! Whew, I get emotional even writing about it. We are so lucky to have her continuing to improve. We also started a new antibiotic for her sinus. She has been all mucusy and having problems breathing. Well the antibiotic is working. She is coughing out all kinds of gross things, but that is what we need.

That leads to my next story. We woke up Tuesday at 3:00 in the morning, she threw up all over her bed, so I cleaned her up and snuggled her up with me. Throwing up scared her a bit, so she was up for the count. I would close my eyes, and then open them only to see her staring at me, wide-awake. Well I was worried about giving her her meds, because she has not been tolerating her feeds due to the fact that this antibiotic is hard on her stomach, and so she likes to throw it up. So I gave her her meds super slow, over about 15 minutes thinking maybe we will be ok. Then we took off to Virginia’s, going over the snowy covered roads. She was starting to act like she might throw up again, and I contemplated taking her home. Then I thought about how I only have three personal days left, and Quinn already has 4 appointments scheduled, so I really can’t afford to take time off. I am also extremely grateful that Virginia is willing to watch Quinn when she is not feeling her best. So I kept driving. We got to Virginia’s and not more then three minutes after we walked in the house, Quinn was feeling a bit shaken up, and threw up all over. So I was feeling even more guilty for taking her. Virginia on the other hand was telling me it was ok, she was more then willing to take care of her, and I did not know it at the time, but Virginia knew I needed to be at school, along with the fact that she is amazing and is willing to watch her on her not so good days. So I got a few e-mails through out the day saying that Quinn was doing fine, and must have just gotten shaken up a bit on the ride there. I still thank God for Virginia every day.

Well, I was asked to present how I do assessment in the art room to the staff at the beginning of our staff meeting after school. I already had a PowerPoint created, but did spend quite a bit of time fine tuning it for that presentation. Well, I feel like I did pretty good sharing my information, only to find out later that it was just an excuse to keep me at school, and I was almost done when Joe jumped around the corner and yelled Surprise. I had no idea what was going on. To make a very long emotional story not quite so long, my friends Erin and Virginia nominated me for a wish from B107.3 radio station, which I do enjoy listening to. So Jenna and Joe as well as Erin, Virginia, and her kids, and Quinn all came into the library. I automatically started crying, knowing something was happening to me. Well Erin and Virginia went on to tell the story of what has been happening with Quinn and John and I for the last few years. (Remembering I only had about 4 hours of sleep, I was very emotional) I usually can keep my composure pretty well, but I was a mess, to top it off, most of my amazing Zeman staff friends had tears in their eyes as well, so I was trying my best not to fall into a puddle on the floor. I went to pick up Quinn and hold her as the presentation started, but I had to stop, because I was shaking and I was worried about dropping her. I heard later that she did a good job of looking around, and then got a bit overwhelmed and closed her eyes and would peak out on occasion. I also have to mention that Virginia had her dressed up so cute, and hardly anyone got to see her, because I was worried about picking her up.

Well Jenna and Joe had their microphone and recorder to record the whole presentation. Erin talked about our hospital trips and Quinn’s struggles, John’s heart attack, and a few things we have done. Virginia talked about caring for Quinn and how we are working so hard to help her keep improving. Then Donna, our principal ended with some wonderful comments about how I still am doing my job the way I should be. Then Joe asked me if I wanted to say anything. I was still in shock, so I’m not totally sure what I said, so I'll be as surprised as everyone else.

If I were to do it again, I think this is what I would say.

First I am so thankful for Quinn. I can honestly say that after she was born I was so thankful she was healthy. I looked forward to dance lessons, and swimming, playing in the park, arts and crafts. Not that we can't do all that now, it might just be a bit different. I was so thankful for her and thought it could not get any better. Then we found out she had a heart condition, and she might not be able to run marathons or play in very active sports, but I knew there was so much more to life then sports. It was hard to learn that she was not as healthy as I hoped for, but we were still fortunate and I was still so thankful for her. We had her surgery and the day after her surgery there were some major complications, and that by far was the hardest day for me. Quinn pulled through and has constantly continued to improve. We are on the slow track, but she continues to improve, so I don’t take that improvement for granted. When she holds her head up on her own for minutes at a time. When she started looking at who is talking to her. When I get the camera out and she shuts her eyes, because she does not like the flash. When she will repeat sounds or give wonderful hugs. Every little thing is so important and not taken for granted in the least.

I’m thankful for my blog about Quinn. When I’m having a hard day I feel like I can get it out and let part of the stress go, knowing that I will have a few prayers from some dedicated readers and I also have an outlet to share our wonderful continued improvements.

Basically with everything we have been through, I am thankful. I’m thankful for Quinn. I’m thankful for my faith, which has gotten me through some hard times. I’m thankful for my great support system of Zeman Staff and students, who continue to learn about our situation and support me. To my family, and friends who are amazing. I’m thankful for my husband who continues to improve and has never said a single negative thing about Quinn. I’m thankful for Quinn’s wonderful therapists, who teach me as much as how they inspire Quinn to keep improving. For our amazing babysitter and friend Virginia and her kids, who goes the extra mile to take care and love Quinn up, and I’m so thankful for Quinn. She inspires me to be a better person. I see how hard she works to achieve things, and that inspires me.

I’m thankful for Erin and Virginia to have nominated me. I have had a very eventful two years, and Quinn has inspired me to be a better person, and it’s so nice to be recognized. At the same time, there are many amazing parents who have kids with all kinds of issues, and I share this with them. We all, every one of us has amazing things to contribute, sometimes we just have to take the time to find it.

Thanks to the radio station 107.3 and the sponsors, and Gina and Joe for creating the special moments to give a pick me up to so many people. I know I’ve teared up at quite a few of the special wished. On another note, I have to say that I just love to hear Joe’s kids reenact stories that are just delightful to hear. Good job to them.

I want to end by sharing a quote that I look at every day; I love quotes and have them all over.

"The greater part of our happiness or misery depends on our disposition and not on our circumstances" ~ Martha Washington

I can’t control what happened to us, but I can control how I handle it, and our family is working to make our story a success. Thanks!

Our story will be on this Friday so if you want listen to it; it’s on at 7:15 and other times throughout the day. It’s also going to be on their website, so anyone can hear it. It’s http://b1073.com/ChristmasWish.htm Again, it won’t be there until Friday sometime. Well, back to the story. After everyone said such nice things, and so many of us were emotional messes, I was given some fun gifts, Dinner out to the Roadhouse, Children’s Museum tickets, a massage, and some cash. Ironically our dishwasher just broke and we got a new one, so we can pay off that right away. So I am thankful for the stuff, and I’m glad to have it, but for me, it was so much nicer to have Erin and Virginia think of me. It’s also been so nice to have so many friends tell me how it is deserved. I’ve thought about how we give out small slips of paper to kids for “Doing it better then they have to” I feel like I just got a huge one, and I’m thankful. I still say Quinn deserves it more then I do, and over all I’m so lucky to have her. So it was a good day.

We went to bed last night at 7:00 and Quinn and I both were out. I have her propped up so she can breath easier with her cold, and we were up a few times with her coughing, then she would cry because she was so tired and coughing awake is not fun for anyone. So we are still a bit tired, emotionally and physically, but at the same time, I’m really feeling the holiday spirit. I know how good I have it, and continue to be grateful for each and every day. 12-19-08

Our theme matches the Christmas Holiday perfectly.

Keep On Believing! Quinn 2008

Merry Christmas!

Wow, here is Quinn and Elijah. How precious!

Well, instead of doing a Christmas letter, I’ve got two amazing women who wrote the letter for me. Granted mine would not have been quite so focused on myself, but I’ve got to share these with you and have them in her journal for me to read on the not so good days. Merry Christmas!

Dear Gina and Joe,

My name is Virginia and last year I was introduced to the most beautiful family. The Otte family; John, Susan and sweet little Quinn have endured more in the last two years than most families do in a life time. And through it all, they remain optimistic and positive through every struggle they encounter. Their story begins with the birth of their angelic daughter Quinn (who I now get the privilege to watch while Susan teaches art at Zeman Elementary). Quinn was born Dec.13, 2006 with a rare heart condition, only her parents wouldn't know this until she was 4 months old. Quinn has a congenital heart defect, known as Congenitally corrected transposition (L-TGA), this includes ventricular sepal defect (closure of the hole in her heart) and a double switch (inflow and outflow) of the veins. What!? The two lower chambers of her heart were switched and there is a hole in between them, the hole is what kept her doing so well. On May 4, 2007 she went in for surgery, the doctors decided to band her heart so the strong and weak sides would be more equal. The surgery went well and she came out with no problems. However, the next day she aspirated while taking a bottle. She stopped breathing and CPR was preformed. The wonderful team of doctors and nurses and Children's Hospital brought her back. At that point John and Susan were overjoyed that their fighter had pulled through and uncertain what this meant their and Quinn's future. Over the next few months, Quinn continued to take baby steps forward and backward. She continued to have problems throwing up and her doctors discovered she had a Milk Soy Protein Intolerance (MSPI), which may have caused the aspiration. On Aug. 8, 2007 she had another surgery, to drain the fluid that had developed around her brain. This fluid was a result of her aspiration and brain damage due to lack of oxygen. Then on Sept. 4, 2007 she had another surgery to put in a "Mickey Button" to feed her with and a Fundoplication - to keep her from throwing up. Through it all Quinn continued to take baby steps forward, but her parents needed to come to the realization that Quinn had changed. As one of her therapists has said, her crystal ball was broken and she will never be the same. Throughout the next several months Quinn continued to improve and recover. I was introduced to the family in Dec. of 2007. At this time, I had stopped working my part-time job to keep my own family healthier. It just so happened that Quinn needed a babysitter and I no longer had anything going on! God knew we needed each other and through a mutual friend we began our friendship. Although Quinn continued to improve, John began showing signs that something wasn't right. On Christmas day John suffered a heart attack! He went in for emergency surgery and came out ok. John was able to come home on Jan. 11, 2008 only to have is daughter checked into the hospital. Wow, they never get a break. Quinn was fighting an infection and her stay wasn't too long. On Feb. 18, 2008 John went in for another surgery to place a defibrillator and pacemaker in his chest. Things went well and there were no surprises. A clot in one of John’s legs proved difficult for doctors, but as with everything, the Otte’s relied on the power of prayer to get them through. John still struggles with his ankle, but as the family motto goes “baby steps, that’s all we need, baby steps.” As the year progressed John and Quinn continued to improve. While her family grew stronger Susan played the role of man and woman, while juggling doctor appointments, therapy appointments, and working full time without a single complaint. Although they had their share of set backs, the family is amazing. Quinn is living proof! During the spring, Quinn was supposed to undergo a huge surgery for her heart. When they looked at her heart, they were pleased to see it correcting itself! She did not need another surgery this summer and I'm happy to say she grew like a weed and continued her physical progress. She has a wonderful and dedicated group of therapist who have helped her grow and learn. Quinn enjoys walking with the help of a special walker and I know she has a very special bond with my own children. In fact, everyone that meets Quinn can't help but melt for those beautiful baby blue eyes! I don't think I know a more deserving family for a Christmas wish. Just the fact that they are still all together, improving and growing everyday is a miracle! At the beginning of this school year, I started watching Quinn full time. Since then, I've seen her grow and change more than even my 2 year old son! I can't even begin to put into to words the joy of having the Otte family in our lives. Through all of these trials, they remain steadfast in their faith and belief in miracles. Throughout this last year with the Otte's I have truly learned what it means to walk by faith. No matter what the obstacle, Susan can find a way to see the good and she cherishes all of the everyday moments in life. They are truly an inspiration to me. Every time I hear the song, “Superwoman” by Alicia Keys, I’m reminded of all ways Susan is a superwoman. If you would like to know more about this wonderful family and their story Susan keeps an internet blog of their baby steps. The address is:http://isite.lps.org/sotte/web/quinn.htm I hope you are as moved by this family as I have been. And I hope that you can help make their Christmas a little brighter! Sincerely, Virginia McCormick

Hi Gina and Joe

I am writing to you on behalf of my friend Susan Otte, and asking you to grant her and her family a Christmas wish. Susan is a dear friend of mine. We met in 2005 at Zeman Elementary school where she is the art teacher and I was the music teacher. I no longer teach at Zeman, but we have remained friends. She is truly a wonderful person, who is going through some difficult times. She is the most resilient person I know, handling her difficult times with a grace and faith that is truly admirable.

Her daughter, Quinn was born in Dec of 2006. They found out when she was 4 months old that she had a congenital heart defect. It is complicated, but as I understand, she had a hole in her heart, and the two lower chambers of her heart were switched. In May of 2007, she went to Children's hospital in Omaha for surgery. Unfortunately, there were complications after that first surgery, and Quinn stopped breathing for an amount of time, resulting in some brain damage. After a lengthy stay in the hospital, they were able to bring her home, but she had sustained enough damage to give her developmental delays. They have had a long year and a half of dealing with doctors, hospitals, medicines, therapies, and learning to adapt to life with a child with significant delays.

To add to the stress, last year on Christmas Day, Susan's husband, John, had a major heart attack, from a blood clot in his heart. He was in the hospital for several weeks and had a couple of surgeries. They were already faced with a mountain of hospital bills from Quinn's ordeals, then they had to face more bills and a husband who could not work. Needless to say, it was a terribly hard time for their entire family. He has since gone back to work, but they are still struggling. However, through it all, I had never seen someone keep such a positive attitude. Susan keeps an online journal and it is filled with thanks to God for all their blessings and thankfulness for the little things. She takes one day at a time, is always trying to do the best she can for her family, and is always putting herself last. She gives 100% all day long to her students at school, then comes home and gives 100% at home. I cannot imagine how difficult it must be for her to balance everything.

If my Christmas wish for Susan were to be granted, I would ask that you help Susan give her family a wonderful Christmas, but that she also gets something for herself, to help "recharge her batteries" and renew her strength to be the best mother and wife that she can be. I have never met a person more deserving of help and recognition, and I ask that you strongly consider granting a Christmas wish for Susan Otte and her family, John and Quinn. Thank you very much and Merry Christmas to you all.

Erin Niebuhr

Really there is nothing more I can say except that I am blessed. I’ve got amazing friends, may you find the good in each day, and have a blessed and Merry Christmas