12-30-10

Well this morning was fun. The American Heart Association is going to do a traveling Heart Hero’s Portrait Gallery kind of thing, that is going to go all over Lincoln, and will have fundraisers, volunteers, heart survivors, and their families, and we are going to be part of it. John survived his heart attach, and as is obvious by all the doctor appointments he still continues to go to, it’s a long recovery, but he is getting there, and I’m proud of him for all the work he puts into trying to get healthy. Quinn was born with Transposition of the Great Artery, and that is what has lead to the brain trauma she currently has, and she also continues to improve, and I started being proactive by getting involved in the heart healthy program, and am now back to exercising on a regular schedule, so all three of us have a heart story. Shane and Sunny from Shane and Sunny photography studio, took our photo, and me being the person I am, brought a few new ideas into them, as we can’t just take a regular picture, we need a little something different, so I’m curious to see what image of us goes into the exhibit. I’ll let you know when it starts.

We have also had our big doctor visit extravaganza. We started on Tuesday and saw the GI doc. We are one med less then when we started, and I’ll take that. Wednesday was the Children’s Developmental Clinic, in the new part of Children’s Hospital, and wow, that new part is nice. It’s fun and very colorful! We got there at 8:00, and took her baby doll and her duck and a few other items to play with, as it’s an all day’s event. We sit in a room and all the staff come to us, so it’s nice. We saw: all kinds of therapists, bone doctors, neurology, general docs, social workers, dietitians, hip doctors, and a few other folks. Then they did a huge blood draw, I feel like I need to give Quinn some extra fluids to make up for all that blood. Then a few x-rays’ and a scan to see how strong Quinn’s bones are, and the only result we got back so far, was that her bones are strong!

To finish up the day we had another appointment with ENT, to look at the trach site. I have to say sometimes it has a funny odor, and I’m still learning what to do, and how to care for it. The appointment went well, and we are switching a few meds around to different times of the day to see if that helps us sleep past 3 in the morning. I’m not sure how much longer I can do that, and Quinn does not mind going to bed at 5 but I have things to do, so that is not an option! So I’m always ready to learn. It sure is nice to have a few days off here, to take care of all of these appointments. A few naps would have been nice, but checking off so many doctor appointments is also nice.

Today we finished the doctor appointments with a bit of a late 4 year check up with our primary doctor, and I have to say it’s nice to go in for a check up, and not have any other issues to talk about. This trach really was such a good thing. Quinn is doing so well with it, and I can tell that I’m not as stressed now, as I was the month before it happened.

So our break has not been one where we lay around the apartment and play and dance, and paint, and sing, but getting all these appointments checked off the list, is pretty good as well. We are also finding a bit of time to play around too, that is when she is not napping!

12-27-10

We spent time with Quinn’s cousin, Kaleb over Christmas, and she is teaching him so much. He understands that Quinn has some health issues, but past that does not quite understand it, but knowing that, he is so good to her and loves her up. He reads to her, asking her questions, and gets a little frustrated, because she answers him and he can’t always understand what she says. He wants to understand so bad, bun instead of getting frustrated, he rubs her hair, and loves her up, and continues to be such a great cousin! What a blessing to have family that gets what is really important!
What a Merry Christmas we have had a blessed holiday. We spent time with family, exchanged a few gifts, and Quinn is feeling pretty good! Yeah! I had another bawl baby moment, I tend to have them more then I use to, and I think it’s due to the fact that Quinn has taught me so much, and is helping me continue to figure out who I am and what I want to give back to the folks around me. So I’m sharing a personal moment.

So, on to the story. We were at our Christmas Eve Service, and there was a man in front of us a bit, who was probably in his 30’s or 40’s and he had some mental disabilities of some kind. He was in his – Jesus is the reason for the season – t-shirt, and looked to be truly happy. I sat through church thinking how differently I think of him now, compared to the past. He brought his camera to the service and pulled it out here and there to take pictures of different things that made him happy. In the past I would have felt sorry for him, wondering where he lived and hoping he would not come over and talk to me. As I sat there last night, I was enamored with him, as well as how the folks around him reacted to him. When it came to singing Silent Night, we do it with candlelight. Watching this man get so excited to get his candle lit with that childlike excitement, and if I would not have been holding Quinn, I would have went up and helped him out. He was trying to figure out where to go to get his candle lit, and was so excited he could hardly stand it. Then it happened, that moment I feel blessed to witness, that simple act of kindness, where an older woman behind him, stood up, to comfort him and help him get his candle lit, she slowed up her line, but the comfort she gave this man, was that motherly comfort that made me start bawling right away. I was so comforted by her helping him out, and giving him that calm feeling, as well as the light he so desperately wanted. Such a simple action with such a powerful reaction from me. So Lord, thanks for giving me time to continue to learn that we all have a mission in life, and thanks for those special moments. I don’t know if anyone else got such a wonderful message out of church, but for me, that is what I will always remember, and I feel blessed for feeling it. Actually at the end of church, another older woman came over to us, and helped adjust the blanket I was draping over Quinn, so thanks to all those special people creating those simple, wonderful acts of kindness! I think that is what Christmas is all about! Jesus came to teach us to help one another, and simple acts of kindness can do so much!

I am grateful that Quinn might be able to give those same – hold your breath – you can’t stop the tears moments. Giving our community the opportunity to make a difference. In fact I’ve seen it starting, and I’m so grateful to be involved to see or hear about them happening! Whew, I need to get Quinn to bed, and get myself a Kleenex. Here is to those wonderful simple loving moments.

Blessings,
Susan

12-22-10

Here are Quinn and Annette opening one of her first Christmas gifts. Look at that determination.

Now that Quinn has a Trach, she also gets a nurse at school. Joleen is doing great with her, and we are thankful for her. She rides the bus with Quinn and works with her all day. We were thankful we did not have to loose her old para, she moved into the classroom as a general para, so Quinn still see her every day. Oh talking about school, Chrissy helped me out by taking some gifts to school to drop off, and I hear, Quinn was not all that excited to see her and told her "bye". What? Quinn was not excited to see Chrissy? That seems crazy, but that is what I was told! I guess Quinn wants school time to be her own time and she was not ready to go yet! I love that independent spirit!
What a fun week we have had. Quinn has been feeling better, in fact she slept through the night last night, and did not wake up until I woke her up this morning. That has not happened in months. When she has a cold, it wakes her up and we have to suction out her nose and throat. The good thing is that she has a very strong cough and is doing most of the work herself. Once in awhile she gets caught in the cough and just can’t seem to stop, and that is frustrating, but now that she is doing better we should have less and less of the coughing. I would love for her to get over her cold and just be well for a while, but we are on the right track right now, so I will simply be thankful for that.

Quinn is starting to talk our ears off again. I love it. The other day we were talking with Chrissy and Ben, and we were trying to figure out who someone was. Chrissy was saying, I don’t think it’s Amy, and Quinn said – no. So Chrissy asked her who is was, and she said – Kim – or something like that. So wow, that was good to hear. Now I’m curious to see if that is really that person’s name or not. Then at therapy on Tuesday, Stacie was trying to get Quinn to say - Ho Ho Ho and Quinn would grin, and say – Ho Ho – what a jolly feeling we were all feeling. To top it off at therapy she said - grandpa - when grandpa walked in. Nice! Granted she is not saying mom as much as she use to, pre-trach, but as long as she is talking again, I'll be happy! In fact, she is finding lots of new sounds, and that is great to hear as well.



Last Sunday the weather was nice, at least nice for Nebraska weather, so Blue and Quinn and I went for a walk. We got all bundled up and walked around our apartment complex. So you can see that in the background. So we are getting ready to celebrate a wonderful birthday on Christmas, by going out for Chinese. Our apartment can’t fit everyone so we are going out instead. Most every place is closed, so we are celebrating by going to church and via the move, The Christmas story, by eating Chinese, just hoping no one shoots their eye out. (Mom, or anyone who has not seen the movie, it's a line from the movie) It makes me smile every time I think of it.

12-18-10

As we look down on these two, I'm reminded of the true meaning of Christmas. Amelia wanted to play with Joseph, while Quinn wanted the Angel! These two remind me how simple Christmas really is. The birth of an amazing baby! These two come in a close 2nd and 3rd for amazing babes!

Merry Christmas! Everyone traveling, be safe. Everyone else, try to rejoice in the miracle of Christmas.

Here is our Christmas Letter.

Merry Christmas!
I feel like we were once again reminded this year that love exists all around us, the love you can’t measure, generosity that can never be properly understood, and though all our struggles, we have recaptured our childlike faith in life and it’s beauty and joy. I believe it’s there for all of us if we can find a certain way of thinking.

We have has such a busy year. Here are the highlights:
Quinn got a trach, and although I fought it at first, it has turned out to be a wonderful blessing. She also started Early Head Start at Riley Elementary, through Lincoln Public Schools, which is basically like Pre-Pre-School, and, her teachers and support staff are amazing. Chrissy is watching Quinn when she is not in school, and we are blessed beyond words, as Quinn loves her so.
John had another surgery on his heart, which seems to be a great success, and he is doing very well, past that he is working hard, studying, and exercising.
I was lucky to be selected to take part in a Better U program with 8 other amazing women, to get heart healthy, and that was a wonderful adventure, and now I have the tools to take better care of myself, and was once again reminded that it’s ok to take the time to take care of me.
As a family, we sold our house, and thank God for sending us a miracle, and a lot of very talented people. We are embarking on building Quinn a new home that will be accessible for all her physical needs. It’s looking like it is going to be a community project in many ways, and I hope and pray that Quinn affects the lives of many of these people who are helping build our home. Helping educate them to see that a disability is only part of who she is, and that she still has so much more to offer.
So this year we feel blessed beyond words, as love and generosity have poured into our lives, and we look forward to this next year that is already looking to be an amazing adventure.
Merry Christmas,
and blessings to you and yours this coming new year.
Thanks for checking in on us and blessings to you.
Susan, John, and Quinn Otte

12-16-10

A few more pictures. This might be the last of Tabi's pictures. So fun though. The grandma's had to get in on the fun too.

12-13-10

A few more pictures from her 4 year pictures by Tabi. These are some of my favorites.


Now a few from her birthday party. She was so tired, but we had fun.




Happy Birthday to Quinn! It's been 4 exciting, wonderful, exhausting, amazing years. I'm so grateful for every minute!

We had her birthday party yesterday, a few of our dear friends and family showed up, and a few others were missed, but these darn colds and it was so so so cold this year.

Quinn was exhausted due to the fact that she did not want to sleep the night before, but she did have fun, when she was awake. We are hoping her true birthday today, she feels better.

Oh on the potty note. She has been holding it at school the last few days and going potty on the potty for Chrissy when she gets to her house. Yeah! She still does not do it for me very often, but she will do about anything for Chrissy!

12-10-10

It's been a good week. Quinn made it to school all 4 days, and I can't remember the last time that happened. She has been doing great at school, and I think everyone is feeling pretty comfortable with her. She does not go to school on Wednesday's to give her some rest time, and some Chrissy time, so she stays busy all week.

She also made it to both her therapy appointments, and did great eating pudding and rolling, so that was good to see. She also started singing on the way home in the car with me, and I have not really heard her singing in quite awhile. So that is wonderful.

She is still having mucas and not sleeping all night, due to coughing, but we are doing better and better, so I'm hoping that continues.

We did make it to the Dreams Unlimited party, and Quinn loved Santa, and cotton candy. So that was fun. This next weekend we are going to my cousin's music concert, and have a small party for Quinn. We have the cake in the freezer and it's beautiful, so thanks to Cindy for making it. She is wonderful! So watch out for birthday party pictures soon!

Other wise hope you enjoy a few more pictures Tabi took, as well as pictures from the Christmas Party.

blessings
Susan

12-4-10

Yeah! Quinn slept through the night! To top it off, when she woke up, there was not all that much coughing or snot! To go even farther, she fell back asleep and did not cry! Yeah we are finally feeling better! I can’t remember the last time we slept for 7 hours straight! What a great morning! I forgot how it feels to get a full night sleep, and it’s so good for her!

Tabi took her 4 year pictures and here are a couple of them, I'll keep sharing over the next few weeks. She is so good with Quinn. If you need pictures you should go see her, her prices are good and she is so patient and calm with Quinn, as well as being so creative. http://creativeeyesstudio.com To top it off, there is a picture of Quinn on her site.

Well I ordered Quinn’s birthday cake and we are getting ready to celebrate 4 fabulous, wonderful, emotional, crazy years! As she will be 4 years old on the 13th. I don’t know what I would do without her, she is such a fighter, so strong, and so willing to work so hard to keep improving. I am so glad she is getting over this cold, so we can get back to feeling good and get out and do some fun activities. Dreams Unlimited is hosting their Christmas party for kids with disabilities tomorrow, and Santa usually shows up, so I'm hoping we can make it there tomorrow afternoon, and if all goes well, we will make it to church in the morning. It's been awhile since we have been there, and I know Quinn is missing singing along with the choir. So here is my prayer, for her to continue improving, because we have lots of living to do!

Love to you all. Thanks for checking in on us.

12-2-10

Hello! We have been going back and forth from doing well and feeling good, to being exhausted and has Quinn ever caught another cold. I’m thankful for my mom being at the house with us last night. I had reached my exhaustion point and was ready to take Quinn to the hospital, but we all calmed down and mom took Quinn for the rest of the night, and I got some sleep, which I needed so much. Today I’m ready to go again. So Quinn is not in school today, and we will see what tomorrow brings. I want her to be in school so much, but wow those germs, so I really want to get Quinn’s immune system up to date, and healthy so we can get back to a routine.

Quinn did manage to get to therapy on Tuesday and we both learned a lot. Stacy has worked with lots of trach kids and she really worked with Quinn. Suzanne also works with Quinn, which works out great, that she gets speech and physical therapy together, which is working out great. I learned that it’s ok for Quinn to cough without just pulling out her passy valve that helps her cough. Sometimes it’s hard for me to see her coughing her so hard, without doing something to help, but I’m learning to give her a bit of time and she can solve her own issue. So patients is a good thing, yet again.

Here are a few pictures of her working so hard at therapy.

11-28-10

AS I was getting meds and supplies ready for the week, I thought it might be interesting to share. I am excited to make our home a home and not a hospital, with everything out of site. Right now, most of it is covered up, but not all of it, and that is the way it is, and it's worth every bit of time and effort it takes to keep it organized! So here you go. Supplies and meds that I have worked with this morning for the week.

So now we are set for the week, let's hope being organized with help us continue to heal up and get to school. Blessings!

11-26-10

Here is Quinn taking a nap, listening to her headphones. I love technology, and am already getting Quinn hooked on it too. She loves music and does such a great job staying relaxed when she listens to it. She loves toddler music, meditation types of music, classical, blues, and lately she has been loving holiday songs.


Blessed are those that can give without remembering and receive without forgetting.
-- Author Unknown

What a great quote, and our little family is trying our best to follow through on that. Especially now, with it being Thanksgiving! We have so much to be thankful for, and with being thankful, we also want to do just as good of a job sharing our love and talents with others. I’m looking forward to continue to pay it forward with all the love and caring folks who are involved in sharing their love, and talents with us.

Another thing I’m thankful for is snot! Yes, that is what I said. Wednesday we went to see Quinn’s ENT, and he said Quinn was looking great. I mentioned how I only had to use the catheter once over the weekend. We use catheter's to put down her trach and suck up the snot. Otherwise, with her cold, she was coughing up all the snot on her own, and Dr. Sewell, sat back and giggled. Quinn blew him away, because she is strong and doing great with her cough. She still is full of snot, and did not make it to school because of all the snot, but she is sure doing great at coughing it out! So I’ll be grateful for that strong cough, and Benadryl.

I’m hoping that she can start back to school on Monday, as every day she has gotten stronger, but she still has a good cough and is taking long naps, but we are getting there. So I’m also thankful for these couple days I have had where I can hang out with Quinn and love her up!

So Happy Thanksgiving and thanks so much to all of you for reading and sharing in our lives!


Gratitude helps you to grow and expand; gratitude brings joy and laughter into your life and into the lives of all those around you.
-- Eileen Caddy

11-19-10

We have posted a new video of Quinn, from 2006 to the present. We also posted a downloadable post on Quinn's history, medical and miracle moments! It's some of the info going into Quinn's House information, but still does a good job sharing her wonderful moments! If you want to check them out, or a few other things, go to:
http://isite.lps.org/sotte/web/quinn.htm

Here is Quinn a few moments ago, sound asleep, but she finally broke her fever and is sleeping nicely! I mention soon, how it is getting so cold, yet I have her in shorts, but it's because she has been so warm!

Quinn is such a trooper, she was not feeling great here, yet she still keeps smiling! We are so lucky to have a daughter with such a good personality! She is just amazing!
Happy Winter! It is getting cold here! Actually colds all around! It’s cold outside, and I have to say that our windows in our apartment are not great, as we sit 5 feet away from them, and can feel the cold air blowing in. I will also say they came to fix them, but so far, it’s not a huge difference. So it’s cold outside and sort of inside. Then to top it off, Quinn’s got herself a cold. She went back to school early in the week, and now she has a nurse with her at school. I’m a bit worried that we might be loosing an amazing Para, but I’m not sure of that, and so far I have not had a definite answer to that question, so I’ll keep hoping for the best. At the same time, Quinn’s new nurse seems very kind, so we will see what happens. It’s just so hard to loose folks when they have gotten to know Quinn and in turn she loves back.

On Wednesday, Quinn does not go to school, so she can have a bit of a break, as she works so hard when she is there, it’s nice to rest up for the rest of the week. Well, Chrissy took her to see our primary doctor for a follow up trach appointment. Dr. Swisher was very impressed with Quinn. In fact he said he shed a tear to see her looking so good, and Chrissy said she saw a bit of a dance he did for Quinn as well! Yeah for improvements!

At the same time, there are always setbacks, and today Quinn did not go to school, as she came down with a cold last night, and could not stop coughing. So we went back to the doctors again, and lucky for us, we did not have to go to the hospital, instead we got a new med, and she finally had a pretty good night sleep! Talking about sleep, I’m lacking it, and Quinn is too, so we are hoping to rest and relax this weekend and get better! We are missing out on our family Thanksgiving, missing out on spending time with my wonderful nephew Kaleb, and my new nephew, but once we get this cold behind us, we will get up to spend time with Grandma and Grandpa and hopefully the boys as well.

One more of our big celebrations is Chrissy, I know I’ve said it before, but she has taken Quinn to doctor appointments and put up with a hard day on Thursday, with Quinn coughing and throwing up. She also gave up some of her events to take care of her Friday. We have been fortunate to have amazing folks in our lives who have impacted Quinn in so many wonderful ways, and we are so grateful, but again, as I was talking to the Zeman secretaries about Chrissy, I was again reminded how good we have it! Thank God!

Again, a negative, is that we ask for prayers for Matthew! He is a little guy that we met through a few friends, and I am a devoted blog reader of theirs, and he is the one that was at Children’s when we were this last time. He is now in Minnesota fighting hard to survive and overcome this difficult time, He and his family are amazing. I pray for them and their journey, at the same time, they remind me, how thankful I should be, instead of being frustrated Quinn missed school today. I’m just grateful she is home and not in the hospital. Sometimes it is easy to feel sorry for ourselves, but I sure can’t go there, because I see what an amazing gift we have with our lives. We have our struggles, but we have it good!

We continue to find things out about our soon to be - Quinn’s House, and continue to have things going on behind the scenes. We have some angels involved in working hard to help us. I’m getting so excited to start sharing information, but just can’t jump the gun. Just to say again, that I’m grateful and humbled and so excited to be part of this upcoming experience.

11-11-10

SMILE!





Well we are settling in and starting to feel good! Quinn, as you can, is feeling good! She is sleeping so much better then she was at the hospital. She started back to therapy today, and did great! We are meeting with nurses and staff from Riley tomorrow, another visit with Home Health, and then as long as all goes well, I start back to school Monday, and Quinn will start back as soon as everything is in place for her. We are still working on controling mucas and drool, but past that, her color is better, her breathing is better, her spunk is better, the brightness in her eyes is even more sparkly. We are looking forward to a nice relaxing weekend, and getting back into the groove of life! Phew! I'm sure thankful for LPS giving me the time off I needed, and I'm thankful for all my colleagues for being so supportive and being willing to share their vacation days with me. Again, so often I am humbled at how amazing the people in our lives are. We are so fortunate!

11-10-10

We are home and doing well, over all! I'm so tired, it's all caught up with me and I'm having issues pulling up words. We have had mountains of supplies delivered, so I'm trying to dig out and figure out where to store supplies. Quinn is doing well. She is figuring a few things out. Chrissy came over today to play with her, and she said Chrissy with her new talking valve! AWESOME! We still have some stuff to figure out, but we are doing well. A few more appointments over the next few days and I'm hoping for a few naps and good nights of sleep! I've got some great pictures of Quinn smiling like crazy! Lots more stories, but right now I just don't have the words. Doing great, just tired!
blessings!
Susan

11-7-10

Well, we are stuck in limbo, to a certain degree. Quinn is doing so well in so many ways. Her cough is amazing and strong, she is smiling when she is feeling good, and kicking and moving so much more and that is wonderful to see. On the other hand, when she starts coughing, her trach seems to be rubbing against the back of her airway, and if she coughs for very long, it moves the trach back and forth against her airway wall, and causes it to bleed. Watching her struggle to cough for 45 minutes and have the last 10 minutes or so bloody, is frustrating, at the same time, it’s good to see her getting the stuff out on her own, so it’s such a mixed bag. So we are now figuring out if we need to do more of a custom trach that will not rub against her wall, or see if once things heal more, we won’t have this issue. It sounds like custom trachs are a pretty usual thing. So I’m saying some prayers that all the folks here can figure out what is best. After the bleeding, we are not sure if we are going home Monday or not, so currently we are in limbo. Over all Quinn looks great, and when she is not coughing, she is just wonderful, and we could party! However we still have some questions on what needs to happen before we go home. We are also going to do a swallow study before we go home, so we can feel comfortable feeding her by mouth, just a bit here and there for now. So we will see how that goes. I’m still more then grateful for tackling this surgery, it’s just hard to see, 8 days after surgery a smallish complication. It sounds like there are a few different things we can do to make this work, so we are just waiting to figure out what to do to fix this issue.

11-5-10

Here is her Passy-Muir Speaking Valve, the little purple thing on her trach, and she has been having fun with it. Smiles all day, or at least 90% of the day. She thought it was pretty cool to have her voice again, but it did freak her out with her breathing just a bit. It also made her start drooling, because she has not figured out she can swallow with it on. Well, after singing for a bit, the most fun she is having with it is: taking a really big breath, and blowing it off so it flies across the room, and mom has to go get it. This has been going on again and again. It is normal for kids to have to get use to it, and it's normal that they don't love it right away, so she is doing great wearing it for a good 10 to 15 minutes right away, and then she sucks in a nice deep breath, and the passy goes flying! Hey it's making for a pretty exciting afternoon, and that being a good excitement, nothing to crazy, just a fun afternoon of learning.


Well, is it to early to be thinking of halloween costumes for next year? We already have a great idea, this picture is the clue to what it's going to be. A sweet as can be little character, and she is precious and amazing, just like Quinn. Annette and Chrissy came to the hospital last night to do their first trach change, and it went great. In fact she is still coughing a lot, but she has not needed any pain meds yet today, so we are starting off on a great note!

11-4-10

Here is Grandma Vicki giving Quinn a massage after a nice bath.
Here are a couple shots of Quinn where you can see the trach better. It will hardly ever be open. During the day it will have a little valve that helps her airway so she can talk, or a "nose" that helps keep her throat moist. They are not her best pictures, but are good at showing our newest addition.
She is just as lovable as ever! In fact lots of nurses and doctors are falling in love with her, as she is pretty amazing!

Well, we are now 6 days out of surgery. Today was the best of times and the worst of times, ok, so maybe it was not that dramatic, but it was her worst morning, when she started coughing and did not stop for over an hour, and through her tears, she kept coughing. While you would never believe that this afternoon, as she was great, smiling, and resting and relaxing so nicely. That will change soon, as Chrissy and Annette get to do her first trach change, not that they will hurt her, but it's still scary for her to understand what is going on. John and I do our change on Saturday, and it looks like we will be going home Monday, to be met with Home Health to work on all the new machines. Then we have a few days with Home Health, doctor visits, and hopefully finding a great calm pattern that can continue for a long time. We will then see if we are ready to start school, or see if we need a little more time to heal up, we will see what the doctors and Quinn say. Sometimes not having a crystal ball is a very good thing. I am learning how to be thankful for every day.
Blessings!
Susan