Wednesday, December 30, 2009

I've been meaning to add a few of Quinn's pictures from her 3rd birthday pictures. If you need great picture, check out Tabbi, she is wonderful! Her site is
Do I have a beautiful daughter or what!

These first three pictures are from therapy. Our last therapy with Chrissy and Stacie had this great machine that has i-gase on a dyanvox computer, that was fun to see her work with.

The rest of these are from Memphis, or the trip there. Ethan still loved on Quinn, and all the Mook family was wonderful to be around.

What a happy holiday we have had. Let’s start off with last Tuesday. Quinn had therapy with Stacie, and she had a new piece of technology. It was a computer with an eye movie feature. It had a camera on it that followed her eyes so she can operate the computer with her eye movement or touch movements. She is a stinker and showed that quality off again that Tuesday. Right when she got started on the machine, she did great for a good 5 minutes, then she started grumbling at me – “Mama mama” – then she promptly closed her eyes and did not open them. So I stepped out of the room for a few minutes and as soon as Quinn heard the door close, she opened her eyes, giggled, and worked super hard for Stacie until I got back into the room, then she heard the door open, saw me, and did not want to work again. So I pretended to leave, and stood behind her, where she could not see me, and then she started working again. Wow, she has spunk and I love it. Then we had our final therapy session with Chrissy. The last session, Quinn was mad and did not want to be good, this time was the opposite, and she was showing off and working so hard for Chrissy, working on hands and knees, as well as walking. It was so good to see her end her therapy session with Chrissy in such a great way. We are going to have to work hard to get Chrissy time fit into our schedule outside of therapy now, but are looking forward to it. After therapy, we started out on the road to Memphis. We stayed in a Hampton Inn on the west side of St. Louis, and got to get Quinn into the pool, it was a bit on the cold side, so we jumped into the hot tub and then got back onto the road.

Our Memphis trip was opposite of the Nebraska weather. I heard about how so many friends and family got snowed in and did not get to spend time with their families, and that is not right. We on the other hand, camped out at my Aunt’s house most of the time, and it was great. Quinn loved it, and in turn, she did not get as much sleep as she needed, but it was well worth it. It’s great to see how the whole family just loves Quinn up, every time I turned around someone was talking to her or snuggling up with her, and that means so much to me. We went to Christmas Eve mass, Chili’s, and opened gifts, Quinn is going to be styling thanks to all the family who got her the cutest gifts. I got a sewing machine, which is ironic, because that is one piece of equipment that I never wanted. I have a few friends and family that have sewed things for me and I finally got tired of asking them for help, and I’ve started finding more and more things I could make to help Quinn be more successful, so now I’ve got some learning to do, so now instead of asking my sewing friends to sew things for me, I’ll ask them to help me learn how to run this thing I’ve got at my house.

Well, the other thing that took up a bunch of our time is that my Aunt Pam nominated us for the ABC Home Makeover Show. Part of me was not going to mention it in this journal, but it was a big part of our trip to Memphis. I think there were 17 pages to fill out, and we sent in 4 DVD’s and Erin and Virginia let us include their nomination letters in with the application as well. Dad, Quinn, and I sent in two sets of information to them. One by express mail, and one by priority mail. I keep thinking our application is going to be like artwork. Our story might really affect one person while another person reading our application might not think it’s the right thing. So we have two chances for it to fall into the right hands. I only pray that if this is God’s will to have it happen. If it’s not the right thing, I know God will have other plans for us. So I am excited to see what the future might hold. The paperwork says that they get thousands of applications and will not get in touch with a family unless they are interested because they don’t have the time to get a hold of everyone. I do think this was a good experience. It gave John and I a chance to really go through our house to figure out what works and what does not work for Quinn, we also had to do an interview part for the application and it was good for my soul to talk about our story. It was also good for my soul to hear what my Aunt Pam, Grandma Charlotte, and Dad, wanted to say about our family, humbling and wonderful at the same time. I also was reminded what a good laugh my dad and grandmother have. We left a few bloopers on the tape where they are laughing and every time I watched it, I smile.

Past all that work, we had some good barbeque, watched a few football games, did a little shopping, watched a few good movies and drive through some rain. The week we were there went by so fast, before I knew it we were on our way home. Quinn was exhausted and driving with her being tired is not a great combination. She gets overly tired and that kicks her seizure tendencies into place much easier. So on the way home, she would not fall asleep, and I could see how she was struggling, trying not to go into a full blown seizure, but not fall asleep, so wee only made it as far as Columbia and had to turn in, even then it took a good hour of calming her down to get her to fall asleep. We got up this morning and made it home. As soon as we got home and did some tummy time, she was so happy. It wore her out and she took a great nap. When dad got home, she squealed with delight to see him, and promptly fell asleep this evening before her bedtime, so getting back into a routine is working good for her today. It’s good she got to sleep, because tomorrow we are going to Children’s Hospital in Omaha to the CDC clinic to see about 10 different doctors and therapists so I’m praying doctors see improvement like I do. I know she does not like to show off for them, so I’m taking some video’s to share. So I better sign off and get to bed. It’s been a long few days, with another busy day tomorrow, so I’m thankful for a great snow free holiday, family who loves us so much, a safe drive to Memphis and home again, John, who was stranded at our house for Christmas, but had a great attitude about it, and Quinn who inspires so many of us. What a great week, exhausting, but great! I hope you all found something to be grateful for over the last week.

A quick update, the trip to Children's went very well. We are going to continue to see the Orthopedics every three months, the Metabolics - bone doctor had us do a blood test to make sure she is getting enough vitamin D, and she was so good getting the blood draw. All the therapists were happy with Quinn's improvement and had a few ideas for us. Most importantly all of them said we need to have her in her walker at least an hour and a half a day. The dietitian has already called me on the way home to go over a few more feeding issues, and thinking back to last year, we are doing so much better with feeding issues. The social worker always stops by and gave me a few ideas on the home renovation front. Finally the Pediatric talked to us about neurology since that doctor was still on vacation. We are going to look into doing another EEG to measure brain scans. Sometimes when Quinn is super tired she continues to roll her eyes back and I am pretty sure it's just her being tired, but wanted to run it by the doctors to make sure I'm not over looking anything. So now we are waiting for a few call backs, but it was an exhausting day, I tend to tear up when talking about Quinn for hour after hour, and when I try not to, it gets even harder not to, so it's a draining day for both of us. Quinn slept all the way home from Omaha, and today we did not go do a fun excursion. I wanted to get home on safe roads, the drive to Omaha this morning was a bit of an adventure due to the snow and ice, but we made it there safely and now we are home, we get to sleep in in the morning and enjoy the rest of the week. Phew, what a journal article!

Monday, December 21, 2009


Here Quinn is singing, she is such a good singer!

Kaleb loves to read and Quinn loves to be read to, so they made a perfect pair Saturday morning.
Here are her cousin Kaleb and Quinn, he is so good to her!

Here are the three of us having fun and taking a ton of pictures, Quinn was talking up a storm.

Here is Quinn holding her balloon. This is a big deal because she does not reach out to hold many things, but she loves her balloons, and reached out and grabbed that string. Yeah, little miracles happening all the time.
We had a great time at Grandma’s this weekend. She loved being read to and cuddled up to with Grandma and Grandpa. We also had a nice time sharing gifts with Virginia and her family. Now we are getting ready to go to Memphis to spend Christmas with Grandpa Ron, Aunt Pam, Great Grandma Charlotte, Great Grandpa Harold, and cousins and it should be a lovely time. Daddy has to stay here and work. We are thankful he has a job to keep him here, but due to the fact that he is still spending many Friday afternoons at the doctors to check blood levels or have them look at ankles, wrists, or fingers, he runs out of vacation time early in the year. So he is going to work then spend Christmas with his parents. We will be back to meet up with daddy soon. So safe travels to all of us traveling, and peace and love to those that are not.
Merry Christmas.

Wednesday, December 16, 2009

Christmas Letter

Here is Santa, created by Quinn
You better not pout! This is at the end of our photo session with Tabi, and Quinn was done, but I love that little pout on her face. I've got many more photo's to share soon.

Merry Christmas! Here is our Christmas letter -

I think Agnes M. Pharo summed it up best -

“What is Christmas? It is tenderness for the past, courage for the present, hope for the future. It is a fervent wish that every cup may overflow with blessings rich and eternal, and that every path may lead to peace.”

I have always loved the spirit of Christmas, believing in Miracles, fairies dancing on the lawn, Christmas decorations hung in the small towns, the childish excitement of walking to the mail box, the lights hung up and all a sparkle, and not knowing what Christmas morning will bring. At the same time, reading the Christmas story, seeing that Jesus started his life in humble beginnings and brought faith and hope to us all. I love the magic that surrounds Christmas. The simple magic, the not knowing, the excitement my students bring to the table. The always-present question I get every year from a group of students – “Is there a Santa Clause?” and I tell them my truth, “I believe in Santa, I believe in the spirit of Santa and the magic he brings.”

I also am realistic, and see so many of my students and friends who don’t have the luxury to enjoy Christmas they way they want to, be it finances, health reasons, or simply not finding the magic. It is my hope that we can all find a bit of the special meaning Jesus brought to us that morning. I pray that this Christmas brings Courage and Hope. A belief in miracles and thankfulness for the past. I do so wish all of you a cup that over flows with blessing and a peaceful new year.

Our year has had it share of stumbles, obstacles, and frustrations, and when I’ve thought, I can’t handle anything else, I am somehow reminded how good I’ve got it. All the new steps Quinn is taking, her joyful laugh that fills the house, all our friends who love and accept us for who we are, and the love that we share with each other. So I’m thankful for that courage and acceptance and I am thankful for the hope we have in our hearts. I look forward to continuing to share our story and as Grandpa Harold said on Quinn’s birthday, “Wow, if Quinn improves as much this next year as she did this last year, hold on!” I’m looking forward to the ride! Merry Christmas and Blessings to you and your family this holiday season.
All our love,
Susan, John, and Quinn Otte

Saturday, December 12, 2009

Happy Birthday Quinn

December 12, 2009
Happy 3rd Birthday Quinn! Well technically it is tomorrow, but the party was today!

What a fun day. We decided with Quinn having a cold to keep her birthday simple. She fell asleep at Virginia’s at around 3ish and slept until 4:00 this morning! Then took another nap this morning from 10-12 so she was ready to go for the party. We painted and glued and ate and opened and Quinn loved it. I love the all the pictures, but I love it how Virginia, Grandma Vicki, and Grandma Martha all helped Quinn paint her box, and she loved every bit of it. She was exhausted after a couple hours, but we had so much fun. A simple day with people who we love and love Quinn. What more could we really want.

We continue to see Quinn grow and this year she has really started interacting so much more. Listening to her laugh and giggle and to see that smile on her face is the best thing ever. What a fun day we have had!

Tuesday, December 8, 2009

December 8th, 2009

Here is Quinn getting ready for the holidays. She is loving Virginia’s Christmas decorations, today is the first day that I have seen her even a little bit interested in our decorations.

Dreams Unlimited and Handprints and Footsteps had a holiday party and Santa was there. He was amazing with Quinn. She was in her fancy chair and I was not going to as him to hold her, but he came over to her and started talking to her and holding her hand, then asked me if it was ok to hold her, and he talked and talked to her, and she just loved him. He makes me love Santa even more! Thanks for taking time out of your busy schedule to be so wonderful Santa. The party consisted of some games that we played, and again one of the girls that ran one game was so good with Quinn. We had food, and Quinn loved the cotton candy! A new one that she will eat and eat.

Here she is a few hours after the party. She had a long nap. I still just love watching her sleep.

Here we are today notice how white it is outside the window. No school for us today or tomorrow. I’ve gotten a bunch of things done today, yet my list is still pretty long. Quinn was so tired and would not take a nap until she laid down with me, so we took a nap together. It was pretty wonderful!

Two days of no school due to snow days has given me a chance to do an extra update this week. The sad part is that we missed one of Quinns final three therapy sessions with Chrissy, and the big meeting with all the LPS girls tomorrow. So we will just have to do a lot more stuff together. We did not get a lot of therapy done today. We were getting ready to and Quinn objected big time, so we took it easy and I got a bunch of things done instead. She was really excited about cuddling up and watching our tree. Past that the pictures tell the story of everything else we did. Oh thanks to Jodi, I did order some new shoes for Quinn that should fit over her braces much better without squishing her feet. We are also getting ready for a few fun events on Saturday for her birthday. I have to admit I have not really gotten things together very well, but a few things are falling into place nicely! Oh, talking about birthdays, Saturday we got her 3 year pictures taken. Tabi has a studio and is a fellow art teacher and friend. She was wonderful and let us take up most of her morning to let Quinn calm down in a new environment and she was right there with me being creative and unique in her approach of taking pictures of Quinn. I have to say we got some amazing pictures! If any of you need to get some here is her information - - she is amazing!

So thanks to Mother Nature, we had a calm relaxing day today where I got to do some cleaning, and catching up on things, and I was reminded that sometimes it’s nice to just sit back and enjoy the moment! Hope you can all find that moment!
Blessings and thanks for reading!

Friday, December 4, 2009

December 4th

Here are Quinn and Dad, where the rest of the world just fuzzes out and the two of them are the only thing that matters! It’s so good for both of them!

Here are Quinn and Grandma Martha, they had so much fun together this last week. Look at how long Quinn’s hair is getting too!

Here is Quinn after our Thanksgiving walk, all bundled up and loved the first 20 minutes of our walk, then she was done!

Here she is this morning, not quite awake, but this is the first day for piggies with braids!

What a great thanksgiving we had. We spent time with Grandma Martha and Grandpa Harold. It was calm and relaxing, and that is just what we needed after a crazy week. Quinn is feeling so much better. We finished off the antibiotics, and by Sunday Quinn was back to wanting to exercise and move around.

Our first story is about Quinn throwing her first full-fledged temper tantrum. She was sitting at the table for thanksgiving, and she did not have her braces on, yet another reason to have her wearing them all the time. Well she kept pulling her feet out to a ballerina dancer's 5th position and that is not where we want her to hold her feet. Well, her new chair has a place for her feet to go where they will stay in proper alignment. Well I told her if she continued to hold her feet out, I was going to put them in the chair straps. So she looked at me and pulled them even farther out, so I put them in the braces. After a minute she started grumbling and it turned into a full-fledged scream, not an I’m hurting scream, but a rescue me from this chair scream. So daddy took her out, and once again he was the hero. She look at him like he saved her from a pit full of snakes and at the same time looked at me, like I was the mean witch. I’ve started using my mom’s line of I’m a mean mom. Grandma Martha got a big kick out of her tantrum, it shows she is just a regular kid in so many ways!

Here is our fun story for the week. I was reading her a book about farm animals, it’s one of my personal favorites. Well we talked about what animals said, and Quinn was very talkative that night. I said what does a pig say, she says something I don’t quite understand, which is what happens most of the time, but then I said what does a cow say, and a nice loud Moo is what I hear, then I say what does a horse say “moo” she says and smiles. What does a chicken say, pause “moo”, what does a duck say “ moo”, and she kept grinning and smiling, what a fun moment!

We have been working on walker time again, since we did not do much of it last week, I was thinking we would start slow. She did great. Her head control keeps getting better and better. I see her working hard in her walker on it, as well as sitting in her chairs working on it. As for walking, I see her getting better at understanding how things work. She is doing great moving those feet if I move her walker. When she tried to walk on her own, her feet just slide out of under her and she sit’s in her walker, So with just a bit of help, she is totally walking across the room. It’s great to see her improving! Now I’m trying to find some new shoes to help her get some grip on those toes! Yeah Quinn!