Monday, January 30, 2012

Here is the link to our story in the Lincoln Journal Star. It made the front page! The facts are not totally correct, but really close to telling our story! Thanks Nick!
Click here to go to the Lincoln Journal Star
The best story to happen after the story in the paper, after getting lots of warm fuzzies from friends and family, is that one of my students came to see me outside of class and wanted to give Quinn $1.00 of her allowance, along with a big hug, to help pay for Quinn's house! Oh how I love to share our story and affect others in good ways! Sometimes it's hard to be open and honest about everything, but knowing that we are making a difference and educating people around us to see that everyone is important and we all can make a difference, makes it more then worth it!

Friday, January 27, 2012

Well, we have been busy!

Get ready because this is a long journal!

Wow, we have been busy! I mentioned how Quinn was an amazing dancer at dance class, she was walking around like crazy. Tuesday Quinn worked with her dynovox and we are still working out the kinks with it! Then when we got home we worked on Quinn standing. We try to get at least 30 minutes of standing at a time. Well, I decided to change it up and let Quinn stand with me, holding onto my legs and me helping her stay up and she did great for 20 minutes. I did not work that hard to help her stand. A few times she wanted to sit back down, but after I helped out a few times, she did amazing!

Wednesday was a big day! I left school an hour early to meet Quinn, Casey, Chrissy, Delray, Greg, our electrician Brent, and Robert, a photographer from the Lincoln Journal Star out at our house. We had a photo shoot where we looked at cabinet colors, and electrical work. Robert even told me how he was the one that took pictures of Quinn with both her Grandma's almost 3 years ago, after our path took a different turn and the grandma's were taking care of Quinn. As to why we were doing a photo shoot? Nick, a journalist for the Lincoln Journal Star was going through old stories and wanted to do a follow up to see where Quinn was, and how she was doing. Well, we have a pretty wonderful update to talk about.

So Nick, called me up out of the blue, to ask if he could do a follow up story, if we had anything to update? Um, YES! So I talked about Quinn and her progress in every area of her life, and some of our many miracle moments. I talked about her teachers, nurse, and therapists, and how they continue to teach all of us and have helped Quinn learn so much. I talked about our amazing care giver, Chrissy, and how fortunate we are to have her in our lives. I also talked about our house and how so many folks are helping us build "Quinn's house". Then Nick talked to Greg and John as well. As Nick was talking to John, he started asking lots of financial questions, and as John is a total open book, he was willing to share everything! What are we putting into the house? How much has been donated, what tracks, and lifts, and sinks and faucets that help Quinn be her best cost? At first I was heart broken that our story was going to come down to numbers, as I like to think we are so much more then numbers. Then after sleeping on it, and talking to Chrissy, I changed my mind. If we can help folks see what it takes to make a house work for kids with disabilities, I'm ok with that. Like did you know that a power chair costs around 15,000 to 30,000 bucks. Yet, shouldn't these kids be able to move around like the rest of us? The vans that we are looking at start new at 65,000 dollars and up, we are not going to be getting a new van! The only assistance that I can find to help, is up to 6,000 bucks and that is only on a new car, for every year it is older, we get less financial help. So we are looking at older vehicles and they are still way up in the high 20,000, with lots of miles and quite a few years under their belts. The track system that we are looking at getting is over 12,000 bucks. A track is what helps a person with a disablity get out of bed and into their chair with help. So in my opinion none of the above purchases are luxuries or extra's, they are things that we need to help Quinn with the every day life. As I really start playing with numbers, I totally understand why most folks in our situation don't have the ideal set up's for their family members with disabilities. Here we are getting so much help from our amazing community, we both have full time jobs, and we save our money, spending very little on extra's, yet at times I still am concerned how we are going to afford getting a van, and keeping things covered. Again, anyone in our situation has most probably had medical bills before getting to where we are, and with all those medical bills, savings disappear, and things get tough. I truly am not complaining, as I'll pay every penny we have paid to medical bills, as I've got an amazing little girl sitting by me singing and getting upset that I'm not playing with her, but I'm trying to embrace the fact that our finances are probably going to be shared in the paper, but Nick said it was just going to be a small part of our big story, and as long as it's educating someone, I guess I'll be ok with that!

Well, after the photo shoot, (the story should be in Monday's paper) Chrissy, Casey, Quinn and I went down to the capital to start talking to Senators! I guess we did our first bout of lobbying. As there is a proposal to cut nursing, and therapy, and other things for kids like Quinn that have pretty sever disabilites. I feel like Quinn is a wonderful spokesperson to have with me to share my sadness for this proposal. If you are not tired of reading yet, I'll attach my first paper I gave to the senators. Say some prayers for us, as Monday we are going down the the capital again to see what happens with this proposal. From what I hear it's going to be an emotional day, as many adults and kids and families that are affected with disabilities are going to be down there to share our stories and put a face along with the finances. Ugg, I could go on and on, but I'll let my paper speak for me instead, as I don't want to get myself all upset again. So prayers would be appreciated, as I'm new at this, but I hear there are a few folks that know what they are doing, will be down there. So I've got a lot of learning to do in the next few days.

Here we are after delivering all our letters to the senators!
Senators -
I am writing to you about Vivianne Chaumont’s proposal to the Nebraska senators with regards to the 2012 Medicaid budget cuts. I am absolutely appalled by this proposal. I truly thought that Nebraska was better then this proposal. Please support LB952 to stop this proposal.

I am a parent of a child who might need nursing in our home at some time in the future, and have many friends who have wonderful kids in their homes and do have nurses come in at times to help care for their children.

Factually – Kids that have trachs, g-buttons or wheelchairs, or something different don’t make them any different then other kids, except they work harder to survive and over come obstacles that come into play. These kids and families did not ask for this to happen to them. All of the parents of kids that I know that have nurses or may in the future, have solid jobs, they make their communities better and they don’t ask for anything more then the bare basics to keep their children with them, and a bit of support at times. These are good families that need a bit of help. Needing time to work or get groceries or get a good night sleep occasionally, so they do not have to worry and listen for their child through every night. Help in the form of nursing, and therapists, help that understands the issues that these wonderful kids have.

Factually - My daughter has a trach, a g-button, and a wheelchair, she also has a great sense of humor, is smart, cries when she is upset, talks when she wants to, is beautiful and teaches so much to all of us that come in contact with her.

Emotional and socially we know that all kids grow up best in their families; I can’t imagine Nebraska choosing to put kids and adults in dangerous situations with folks that don’t really know how to care for them correctly. That is dangerous and scares me for the child, the family and a person coming in that might not understand the medical issues that are involved.

Physiologically – I have had wonderful caregivers in the past that were amazing, but they did not truly understand the medical issues my daughter was having and how to take care of her in the best medical way, and I found that was not good for the care giver, my daughter, or me. Our caregiver did her best and was an amazing person, but she finally had to stop because she was to worried something would happen to my daughter and she would not know what to do, and was not willing to live with that kind of guilt. I could not blame her for that at all. Now we have a few different people who are medically educated and understand the medical issues, they are confident and understand the issues involved with my daughter and we are all better off emotionally and physically for being in the capable hands of people who understand Quinn’s medical issues.

Financially – It’s proven that kids that have nursing in their homes stay healthier, and that keeps them out of the hospitals and saves taxpayers money. That also goes for kids that grow and improve through therapies, making their lives better and the lives of everyone around them. I know of a few different documents and a few families that can attest to that.

Discrimination – I think so, if you let this proposal pass! Please don’t let this proposal pass; we have come to far to go backwards!

Safety and Knowledge - Therapist and nurses also teach us, the parents, what to do and how to keep our children safe and how to help them move and stretch correctly. Because of the education we get from therapists and nurses, we can learn how to help our children be their best. So many of these kids can contribute so much to our world, if we give them chances to stay healthy emotionally and physically. I’m afraid that with unskilled people doing these jobs, kids will be hurt, but more important, no one will understand how to care for them, and they will simple lay in bed and not achieve the wonderful lives that they deserve to live. That would truly be a tragedy. It makes my heart hurt.

Please stand up for the kids and families that want to stay where they belong, in a safe, educated environment with their families and the people who truly understand what they need and can help them improve and stay safe and healthy! Support LB952

Please contact me if you would like to talk to me about anything farther.
Susan Otte
Lincoln Nebraska

Tuesday, January 24, 2012

We started back at dance class on Monday evening, and Quinn did great. They were working on a new dance style. Can you tell what it is? Belly dancing, I have to say that I smiled more watching them, the kids, the assistants, and the teachers. It was wonderful! Quinn walked all around the room and wore her assistant out! I took this after we got home, can you tell she is tired? I can! All the girls got special stickers (there is a name, but I forgot it.) places on their foreheads along with the story as to why they do it, but I don't remember all of it. I however will never forget all the hip action I saw, it was priceless and the girls are pro's! What a fun night!
This one was from Chrissy, how cute is it, can you find Quinn in the assortment of animals?
Quinn has her very own dynovox now. We are still working on getting it to work just right, but we are slowly getting it figured out! All I can say is Quinn is crazy smart, because as I've tried making it work with my eyes, it's hard work. She on the other hand is getting it down pretty well already! There is a camera under the screen that reads her eyes, and what she looks at will light up. So she can answer questions or play a few games or ask questions. What we can do with this is limitless, I just need to figure it out, and dad needs to read the 400 page manual. So we are getting there.

Sunday, January 22, 2012

Fun at Preschool. Quinn was the helper one day and just look at her looking at Miss Rachel. Then they played with pretend snow and made fun art. Quinn also was tested on colors and numbers and such, and from what I hear she got almost all of them right! Yeah Quinn! What a smarty we have!

Wednesday, January 18, 2012

John is always talking about how one of his favorite memories as a child was making bread with his mom. So the tradition continues.

Today was our big day of doctors at Children's Hospital in Omaha.

Today Grandma Martha, Quinn and I headed to Omaha to the Children's Speciality Clinic, for Quinn's yearly day of doctors appointments. We saw lots of doctors, therapists, and all kinds of folks. It's a great day because we spend one morning in our own little room, and everyone comes to us. I'm so thankful for today because having all these appointments happen in one day saves us so much time. We got a few ideas for a few changes to help Quinn be her best, but over all, we had a great report after great report! So it was a good day. We got on the road home by around 3:00 and as we were going home, I was exhausted. It's one of those days where I try not to stress out ahead of time, but no matter how much I don't want to stress, I do. So Quinn was as happy as can be when we got her back into the car, and smiled and smiled. She was also tired and was sound asleep before we even got home, and once we got home and grandma was off, we both took 3 hour naps. Phew, today wore us out. I'm so thankful for Children's and a day to get so much done. I'm also glad we got it over and now that Quinn is in bed sound asleep, I can look back on the day and be so thankful for it. Thank you Lord for letting us have such a successful visit this year.

OH a fun story from Children's. First I've said it before and I'll say it again, I love the feeling I get when I'm there. It's so accepting and loving, from the staff as much as the kids and parents. We talked to two different families that had kids Quinn's age and both kids had power chairs, they were driving them great! Quinn and I talked about how hopefully the next time we are there, she will be able to drive her chair around like they are. One of the families talked to me about how their son can't use his chair in their home because of their stairs. They can't get it into the house. So they are in the process of getting ready to sell, so we talked about how we had the same issue. It's really nice to talk to folks that truly know what you are going through.

Monday, January 16, 2012

More on Quinn's Home front

Well, Quinn, John, and Grandpa and Grandma and I went to see what is going on with our house. We now can only go out with Grandpa or our friend Melody, because the two of them can get the lock box undone, and John and I can't get it! Nice!
Well, some of what is going on: The arch is going to be a build in with a super cute picture of Quinn. The next couple pictures are the stairs and the elevator. Then we have stone work starting to go up, and our sidewalk goes all the way to our doorway so we can get Quinn into the house easily now. Electrical is going in, you can see the heating lamp and different outlets. We also have one of our bathtubs in. So lots going on! How thankful we are!

Saturday, January 14, 2012

What a beauty we have!

Guess what happened yesterday? Quinn stayed dry all day! She went potty on the potty 4 times! In fact her hands were covered with stickers, as she gets a sticker for going potty! Yeah Quinn!

Guess what happened today? Quinn got to hang out with Grandma and Grandpa while John and I went to our first foster care parenting class. It's going to be a long process, and we won't even think of a new family member until we get into "Quinn's House" but we will have all our classes done (8 weeks worth) before we move in.

After all that work, we needed a nap!

So it's been an exciting few days here!
Blessing to you all!

Wednesday, January 11, 2012

Well we are starting out the new year with a brand new cold! Darn! So as Quinn was resting, Blue wanted to make her feel better! I'm not totally sure he succeeded, as she gave him a dirty look, but it's nice to know that he cares, and has always been so good to her!
Oh, I mentioned she was not talking for about a week, and has totally made up for it. Once again she is talking to Chrissy and a few of us. She is going potty on the potty like a champion. Doing good in school (minus the cold) and working hard at therapy. So past the cold, we are doing good!

Friday, January 6, 2012

More on the home front. Quinn and I went with Delrae out to check out lights. That was fun and overwhelming at the same time. We also went out to the house. Plumbing pipes are now in the house and holes are where they should be. We also have electric boxes here and there and all over. The deck is part way done, and we are going to have a playground right behind our backyard. That is fun. We are also getting ready to add stone to the front of the house, I'm learning so much on how these things are done. Building a house is a lot of work, and I know that I'm not even doing all the work, thanks to Greg, Delrae, and Ken. We are so thankful to everyone helping us build Quinn's house. It's humbling and so wonderful, did I mention exhausting as well! It's going to be so worth it so I'm ready to keep working hard to get it done.

Monday, January 2, 2012

Happy New Year

Well after Christmas Quinn and I took off for Memphis to spend time with family after seeing all the other grandparents over Christmas, we had to go spend time with the Great Grandparents, Grandpa Ron, and all our other family!

We went to the Memphis zoo and the weather was in the 60's and it was beautiful! We got to see kissing giraffes and ...
We got to see Panda bears. in fact did you know that they eat 40 pounds of bamboo a day! Wow, he was cute as can be!

More then anything it was nice to spend time with family. On New Years Eve, Aunt Pam found out Quinn has ticklish feet, and got her to laugh and laugh. She also found out that Quinn loves head massages until she is done and when she is done, don't touch her again. As for Quinn showing off? Nope! She did not talk, just baby talk, she would not walk in her walker, not a step, she would not really show off at all! Some day I know she will! She did love being loved and that is at least something!