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