Tuesday, February 28, 2012

It's official, we have got our elevator. We are putting a downpayment on it this week! We are also getting our track system ordered! These are the two things that were so important to me to get into our house, so Quinn has access to the entire house, and thanks to everyone involved in every aspect of the house, and their kindness, that is why we are getting them. Thank you!

We are also working on stretching more. Quinn is getting really comfortable in strange poses. Her favorite one is where she lays on her back, and shoots both of her legs over to her left side. She is also getting good at kicking her one leg out to the side and the other to the front, so we are thankful for her therapists to keep us in line, and we are once again doing stretches to help keep everything loose and proportional. There are not enough hours in the day to work on everything. Stretches, walking, standing, eating, hand exercises, flashcards to practice our letters, books, eye-gaze, not to mention baths, brushing teeth and all the usual stuff. PHew, we are busy!
So, here you go, after some hard work, and more stretching, I think we found a good straight line posture here.

Thursday, February 23, 2012

Quinn figuring out her eyegaze with her dynavox. She is still figuring out how to use, it but she is getting better every time!

Casey and Quinn reading! So cute!

Tuesday, February 21, 2012

I've got to brag again! First Quinn can totally play uno! Chrissy and Casey play it with her, and in the past they have simply held up two cards and had her pick the one that was right, and now she has figured out how to do it on her own! YEAH!
Also at school they were holding up letters like a Q, and asking her: Is this a Q yes or no, or holding up a Q and asking is this a T yes or no. She got 20 out of 26 right, and the ones she got incorrect were like when they would hold up a T and ask if this was a D? and we wonder if she just heard it wrong, rather then got it wrong! Still 20 out of 26, with a few silly mess ups, pretty awesome if you ask me! I love it! We have an amazing village around us working so hard to help Quinn be successful! How blessed we are!

Wow, we have been busy in the last 48 hours.
Quinn ate star fruit with dad and liked it!
She played Yatzee with Justice and other friends at Chrissy's.
She did walker time at home. This picture was at the end of an hour and you can tell she is getting tired of that walker time, as she has shrunk down into the chair.
She colored pictures, after yellow, she also got to use glitter! Fancy!
She has seen Delrae, said "hi" then looked away, playing the shy card, then we talked about tile and flooring for the house. The cabinets are officially ordered! We did not get a picture of that.
She has danced! She has great teachers who continue to help her be her best.
Wow, we have been busy! I wonder what the rest of the week has in store for us?

Friday, February 17, 2012

Well things are happening!

Way back when Quinn was 2, (now she is 5) we started playing around with the power wheelchair. Chrissy was Quinn's therapist then and she started using a button that Quinn would push and the chair would move forward. At that time, she did not know if Quinn would qualify or not, and that was not the goal, the goal was to simply push the button, and the reward was moving, as Quinn has always loved to move! Well over the last couple years, Stacie and Quinn have been working with different chairs, different controls, working on figuring out different seating options and head supports. At the same time Quinn has had to prove that she can stop when asked and turn or go in straight lines. That is asking a lot when Quinn only gets to drive it maybe 45 minutes a week, but after 3 years of practicing here and there, and lots of meetings and more paperwork and video's we are officially turning in the paperwork for Quinn's very own chair! Now we wait! We have 3 insurances on Quinn so each one has to go through and say yes or no, or what about this or that, and I'm sure Suzanne is going to stay busy with all the questions. However we are onto our next step! Now we are asking for a few prayers that the paperwork goes through and we are hoping Quinn gets her chair sometime this summer, so we can practice with it and send her to Kindergarten in her new power chair! That would be wonderful!

We also had another house meeting with Greg and Delrae, I don't know if it was her cold, or talking about finishes, but Quinn only lasted about 15 minutes into the 3 hour meeting. I heard the word finalize and finish several times which goes to show we are getting much closer to moving in! Sometimes it still does not really seem real. Lately I've tried to write thank you letters to Greg and Delrae and I simply can't get the right words out to say how I really feel. I know we would have figured out something for a house if they would not have come into our lives, but it never would have come close to what we will be moving into. I feel similar to when I did when our heart doctor operated on Quinn's heart and was so successful. I knew there was nothing I could really do to show my thanks, and again, I have that feeling. Quinn is going to be able to successfully be in a house where she can continue to improve and thrive and knowing all the love that is going into it from so many people is amazing! So here are the newest pictures:

I love these last two pictures! Any time we go out to the house Quinn giggles and gets so excited! I think she is going to love the big glass doors that go out onto the porch/patio as she can see outside from her chair, and what a beautiful view!

Wednesday, February 15, 2012


Valentines and Friends - Does it get any better then that?

Sunday, February 12, 2012

Friday, February 10, 2012

It's so cold outside, so sometimes it's just nice to cuddle with a good friend! Casey takes such good care of Quinn in the afternoon's with Chrissy! What lucky girls!

Listen carefully!

Well you have to listen very carefully, but you can totally hear Quinn spell her name! If you watch her mouth, you can see how she is getting those letters formed correctly! Wow! Oh, she did not do this for me, as I get the camera out and she is quiet, but for Chrissy, she finally gave in with the camera on, and talked away! Yeah!
If you did not catch it in the last video, here is one more.

Wednesday, February 8, 2012

I've got to brag about my smart daughter! YEAH!

I was so proud of Quinn's report card, that I've got to share it! Now if you click on it, you can read how smart she is! I've said it before but I'll say it again! We are so thankful for her great teachers and nurses and therapists that keep helping her continue to learn and grow!

Quinn has had some fun with Chrissy lately, as she was playing dolls today and wanted to feed the baby, but not in her mouth, she wanted to feed her through her button, just like how Quinn eats most of the time! Oh, I'm so thankful for Chrissy playing dolls with Quinn, and listening to her and playing the way Quinn wants to play! Casey also wanted in on the action and read to Quinn. Those girls just make me smile! I love it!

Sunday, February 5, 2012

We have a crazy exciting night watching the Super Bowl! Quinn decided the hype was more then she could handle, so she is sleeping through the game, and thanks to all the snow on the ground, we did not have anyone over, so dad has to be quiet watching the game, and we are simply enjoying the quiet as we watch the game! Well, dad has to work hard at not getting to excited about the game, but it's been a good evening!

Wednesday, February 1, 2012

PHew! After all that senate stuff, and house stuff, and paper stuff, and so much work, work, work! Today Quinn got to play! Chrissy and Quinn played a game and Quinn practiced spelling her name. We even have it on tape, so I'll try to get it on here sometime! So Hooray for some play time!

Here we are sitting at the Capital, and speaking to the Senators. We kept the flash off, as not to disrupt the events, so the pictures are a bit blurry, but we were there speaking for ourselves and families. We were there to support a bill to keep nurses in the homes of kids with severe disabilities, as well as keeping therapy and healthcare for all people with severe disabilities. I learned so much, and could go on and on, but as this journal is already pretty long, I won’t go into all the details, but just cover a few of the bigger moments of the day.

Well, Chrissy, Alexis, Casey, Quinn, and I went to the Capital on Monday, to sit in and talk about the bill / proposals dealing with cutting nursing in the homes of kids with severe disabilities, as well as limiting health care and therapy. The room probably sat a couple hundred people, and as it was a prehearing type thing, we only talked to the senators on the appropriation committee that had 12 senators residing on it. So we might be doing this again down the road for the entire Nebraska Senate. We got there around 1:00 and did not leave until about 6:45. The room was packed full of nurses, therapists, and lots of adults and children and families where disabilities are part of their lives. Many doctors and hospital administrators spoke about how loosing nursing in the homes as well as continued budget cuts would lead to overcrowding in hospitals, health and human services talked about how they have continued to come in under budget and don’t understand why these cuts are even necessary. A couple of personal assistants asked who is going to be liable, when they are not allowed by the state to do trach changes or many things that go along with respitory issues and who will be responsible when the person they care for dies on their watch. A few nurses talked about everything they do to give people with disabilities the best lives possible. There were also many heartwarming emotional stories that were shared, and the senators really did seem to be paying attention and learning right along with me. I was thankful for a couple of parents who had their beautiful kids who have ventilators with tubes and machines surrounding them, right up front, so the senators could see how they got feed through their G-buttons, how they got suctioned, how much care they took, as bells and whistles continues to go off when something was not quite right with them! Those kids did great, as I’m sure they were board out of their minds! I would have been at their age! I appreciate those parents for helping educate the senators. Thank you! We were in the back of the room, since we just got there just in time to squeeze into the room, they had folks after us go into an over flow room next door. Quinn was so good the entire time; she listened to music that Chrissy brought along, as I forgot to bring things along to keep her entertained. Alexis and Casey also did great. Finally around 6:30 Quinn and I got our moment to speak to the senators. A couple of the people right before us had stories that got me all emotional, so I was more emotional then I wanted to be when I spoke, but I did ok. Quinn decided to have a big coughing moment, while I was speaking, so I had to stop and wait for her to get herself under control. I hope that made an impact on the senators. Chrissy and I both told Quinn that this is one day where she can cough and be as loud as she wanted the entire time, so she talked a bit here and there but her big coughs in front of the senators were as loud as she got.
So here is the speech I gave the senators. I tried to cover just a few points, as I did not want to bore them, and only had 3 minutes to share our story. I have a few things I’ll change around if I speak to the entire Senate, but I think it’s an ok start, as I am new to this whole adventure. So I ask you to keep praying for all these families that truly need nursing in their homes as well as support with therapy and health care, it’s not a luxury to have, it truly is a necessity for so many of us.

So here is my speech that I loosely followed when Quinn and I spoke:

Hello –
I am Susan Otte, I’m an elementary art teacher, and this is my amazing daughter Quinn, she is a vibrant, smart, amazing 5 year old who is in preschool.

I want to focus on keeping nursing in homes with kids with severe disabilities, as well as giving these kids the opportunity for therapy.

A nurse, who is educated and understands the issues my daughter and all kids with disabilities have is what we need. The nurses and therapists who come into our homes help teach us, the parents what to do. We as parents don’t naturally know what to do to help our children be their best. I did not plan on having a child with disabilities, and I had not educated myself to know what to do, however thanks to all the medically trained people in our lives, I have learned how to care for my daughter, and I’m grateful to the therapists and nurses for caring for my daughter.

If I don’t truly know how to care for my daughter, how can I be expected to teach a Personal Assistant Provider, who simply has to be 19 years old and pass a background check. Would you be comfortable watching my daughter with no training? I have many intelligent caring friends, but I am not comfortable leaving Quinn with them, as they don’t have the correct training to care for her, and asking them to care for her without proper training is dangerous!

I have had wonderful caregivers, not nurses, in the past that were amazing, but they did not understand the medical issues my daughter was having and how to take care, and we 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 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 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.
Currently we have a nurse for Quinn at school, as her school requires a nurse with any child with respiration issues. She keeps Quinn safe and protects her airway, whether she needs to be suctioned, or if her trach gets pulled out. Quinn’s nurse understands when she is under stress or has a cold and how her respirations or breathing will change and how to deal with that. If some of these issues would happen without her nurse present, the ambulance would be called, and I would get a call, I’d take time off of work and meet the ambulance with my daughter, at the hospital for the nurses there to work through Quinn’s respiration issues, not knowing her and her needs. While a trained professional who knows Quinn would have known how to deal with it, in a calm manor while keeping her safe at home or school and preventing a trip to the emergency room.

Financially, having medically trained caregivers, such as nurses, taking care of Quinn saves Nebraska taxpayers money. In the year before we got our current educated caregiver, Quinn was in the hospital over 26 times. After being with our medically educated caregiver, she has only been admitted to the hospital 3 times. If we simply use the cost of the room in the hospital, before being with a medically educated caregiver, the cost of hospital rooms was well over $46,800. While this last year it was less then about $6,000. That is a difference of over $40,000. Educated caregivers, such as nurses have saved Nebraska taxpayers thousands of dollars in hospital trips with just my daughter alone!

So in conclusion, I’m terrified that a personal assistant provider will not have correct knowledge or any knowledge for that matter, of how to care for our daughter. Without a nurse to care for her, we will be back in the hospital numerous times because we have no medical knowledge, which is horrible.
On the other hand, keeping educated nurses and therapists will continue to help our kids with disabilities survive safely in our homes, improving and gaining skills, and saving many trips to the hospital. Our kids with disabilities, no matter what their age deserve to feel safe and secure and we can save Nebraska taxpayers money by staying in our homes with nursing staff rather then spend time in hospitals.

Thank you.