Do I have a beautiful daughter or what!
Wednesday, December 30, 2009
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.
12-29-09
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!
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.
12-29-09
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
12-21-09
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.
Susan
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!
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 - www.creativeeyesstudio.com - 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!
Susan
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 - www.creativeeyesstudio.com - 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!
Susan
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!
Wednesday, November 25, 2009
11-25-09
Happy Thanksgiving!
I’m thankful that Quinn is back in her bed and sleeping so peacefully, after two trips to the Emergency Room, a trip to Omaha, and antibiotics, she is back to her contented self! Yeah for that!
It’s been another year to be thankful for! So a quick list of my thanks!
I’m thankful for Quinn and her continued progress.
I’m thankful for her therapists who continue to bring a positive attitude and helpful hand to our continued education and improvement.
I’m thankful for a husband who overcomes his injuries with a smile and will do attitude.
I’m thankful for an amazing babysitter who loves Quinn and goes above and beyond every day as if she were her own.
I’m thankful for her children who also share their love with Quinn and our family.
I’m thankful for a job that I love to pieces, as well as my 400 and some kiddo’s who make me laugh and learn and I can only hope I teach them as much as they teach me.
I’m thankful for my family who loves all of us as much as we need.
I’m thankful for my friends who I see often, as well as the ones that are loved even when I don’t stay in contact as often as I should.
I’m thankful for everyday events and remembering not to take them for granted.
I’m thankful for my church, where I can find peace, and where Quinn can sing along with the congregation, and thankful when she continues singing for a few seconds that we don’t get dirty looks for her rejoicing!
I’m thankful for simple pleasures, such as reality t.v., morning radio shows, good books, the right pair of shoes, and a good hair day.
I’m thankful for the roof over my head, and the opportunity to make it work even better for Quinn in the future.
I’m thankful for Children’s hospital, we were there again on Monday to find out Quinn had a ear ache and that got so bad it probably lead to her gums bleeding. So we finally got things situated.
I’m thankful for Quinn’s crying to let me know when something is wrong, even though it tears me up inside, it’s good to know she can express herself when she needs to.
Goodness I could go on and on, but instead I’m going to share a story of thanks to a woman who came into our lives when we needed her most!
Here are Chrissy and Quinn at one of our first meetings. It’s also the first picture we got that showed Quinn has it going on, with tracking and understanding.
Here is the miracle moment when Quinn held her head up for the first time since her event. We have had quite a few miracle moments with Chrissy, and we are so thankful for all of them.
So I want to extend a sincere thanks to Chrissy – Our 1st therapist, who God is sending onto new adventures over the next few months. So with happy hearts for her, and a bit of a heavy heart for us, (thank goodness, she is staying in Lincoln, and I consider her a friend, as much as a therapist, so we will continue to see each other) I just wanted to say how important she is to us.
When Quinn was born, we had our beautiful baby who hit all the target marks, and was amazing and we were blissfully happy. At about 5 months old we found out about her heart disease, but again, after reading and researching, I accepted she might not be running marathons, but past that we were on a great path still. The day after her heart surgery when she aspirated and coded, we were worried. I was so thankful we did not loose her, that I was ok with the fact that she might have some issues. As the weeks went by at Children’s we were slowly coming to terms with the fact that Quinn did have traumatic brain injury, but being ignorant about what that was, and at the same time, a bit scared to really learn about it, I just continued to be thankful to have Quinn in my life. We had an experience with one of the Neurologists, who told us, not to expect anything out of Quinn, “the most we could hope for was for her to breath on her own and keep her body at the right temperature. We should not ever expect her to hold her head up or do anything else.” It was interesting that the next day with other doctors in the room, how his story became more positive, but the situation was still overwhelming and we were stuck in a very scary place. I was so thankful to have Quinn, but my prediction of our future was now fuzzy and unclear. My predictions were blasted away and I had to learn to live in the present and not try to predict the future. Just find the love in the moment, and be grateful for every day I have with Quinn.
Coming back to the present, I’ve had to rehash that same basic story to two different emergency room doctors and nurses over the last few days. Just remember, I have been sleep deprived over the last few days, being sleep deprived and so worried about Quinn, but when they asked me about Quinn’s history, both times I teared up just talking about it. So sometimes I feel like I’ve come to terms with everything, other times, I see that I still have some learning and accepting to do.
Well, we did have a physical therapist at Children’s hospital, that came in to see us a few times, and she was positive and hopeful and that gave my heart a bit of a lift and the hope I so needed. Then after we got home, we got signed up with Handprints and Footsteps, and Chrissy was our therapist. I say our therapist instead of Quinn’s therapist, because although Quinn has gotten more then I could have ever hoped from her experiences, I have too. Quinn would relax with Chrissy, she would do things for her before she would do it for anyone. Chrissy is the only person that Quinn held her head up for when laying on her stomach. She is the only female that Quinn has just fallen in love with. Chrissy ranks right up there with dad, and that is a big deal. Chrissy got calls from our doctors to ask if Quinn really was doing what I said, because she does not show off for very many people. Chrissy was always positive and supportive and advocated for Quinn like no one else I had seen.
Basically God brought us to Chrissy. Chrissy brought us hope when we needed it more then anything. She brought us understanding and acceptance. She brought us knowledge and helped us learn so much. She taught me that Quinn can still play, she can still thrive, she can still grow and mature, and can live an amazing life. It might not be what I predicted, but it will be educational and joyful. She was our first concrete true positive experience after experience something that was so scary and not so positive. She has been a great listener, a great advocate, saying just what I needed to hear, when I needed to hear it. At times, I was not ready to hear it, and Chrissy was so safe and supportive, giving me time to absorb the information and then she was ready to keep going after I had the time I needed! She has helped me find an understanding, an acceptance, and at times has helped me see how lucky we are to be where we are, compared to what we planned on when Quinn was born. I cannot ever truly express how lucky we are to have her in our lives. I’m so glad we are not saying good-bye to her, but just switching the role she will play in our lives. I only hope we can all find those people who God brings into our when we need them most. I’m so thankful for God bringing Chrissy into our lives. I would not be the person I am today if it were not for her. We have other amazing therapists who we are so lucky to have, and we are so grateful for them as well, but when we met Chrissy we were broken and battered, and she brought us the light, the hope and peace and the belief we needed at a time where the tunnel was pretty dark. So Chrissy will always have a very special place in my heart. She helped me mend my broken heart and has helped Quinn share information before she was ready to share it with anyone else. I thank God for bring Chrissy into our lives and pray that in her journeys, she will bring that same joy and acceptance to others. She is a rare jem and we are the family we are now, in part to her friendship, knowledge, and support. So Chrissy – thank you! I don’t know if you know what you do for all your families, but we love you will all our hearts!
I hope everyone can be thankful for a special person God has brought into their lives at a time they needed them the most! Happy Thanksgiving!
Susan Otte
Saturday, November 21, 2009
11-21-09
Here is Quinn after a fun trip to the Children's Museum with Virginia, and daddy loved every bit of that Husker Spirit.
It’s been a busy week. To start off, Quinn had a good weekend. We relaxed and played and took it easy, while dad tried to heal up. He is on the slow path again, but doing better this weekend, instead of an all day nap it was just a couple hours, and he is comfortable holding Quinn again, so that’s good. Therapy consisted of working on Quinn’s braces again. We thought we had them fixed on Tuesday, but Quinn had marks again on Wednesday and Thursday so we are back to even watching how her socks are fitting on her feet. We are thinking it might be her crocks that she wears over her braces being to tight, but finding a shoe that is wide enough to go over her braces and not be way to long is difficult. I’m going to start looking for big girl socks with skid bottoms, maybe trying that would help.
So one of the other things I’ve been starting to think about is a bigger bed for Quinn. She does not roll around that much, but I know we need rails. I don’t want to do a hospital bed, and at the same time, she does not really need that. So I was looking at rails that can connect to most beds, but again, that hospital look comes into play, and the price goes from not to bad to out of control. Well one of my therapists suggested bunk beds, taking them apart and using the rails on Quinn’s bed. What a great idea. To top it off at the end of last week, another art teacher was giving hers away, so we now have bunk beds sitting in the garage. I’m going to do some painting, buy a mattress and have a lovely bed with rails that will be perfect for Quinn. I tell you what; God is looking out for us. I don’t always understand the plan, but I feel supported in our journey and that is a big deal for me.
Well the excitement for our weekend is that Quinn and I were at the emergency room this afternoon. The last few days I noticed Quinn was teething, some of those really big teeth in the back and a few others closer to the front, I think that is officially all her teeth once this batch comes in. Quinn has been a trooper with them, not really complaining at all. However, I’ve noticed more blood over the last few days, just a bit here and there, so I was not to concerned, until today. At one point, she was coughing and spitting lots of blood out, and that is trying to keep the story from getting to graphic. So I called her doctor, and was told to go to the emergency room. Of course when we were on the way, blood was dripping out of her mouth, and I was freaking out, wiping her mouth at every stoplight, thinking the lights stayed red for way to long. Once we got to the hospital, the bleeding stopped. Wonderful that it stopped, but were we going to figure out what was going on? Was it the tooth? Is that normal? Was it due to her coughing so much? Well, we got in pretty quick, in fact when we got there, there was not a single person in the waiting room, unlike when we left, the room was full, with a number of people walking around outside. Well, once the doctor got into the room, and we went through everything, he put the tongue depressor into her mouth and barely tapped her tooth, and he said it set off a spout of blood that she was swallowing, and that is why she was coughing. He told me that there was a blood vessel right by that tooth, and the tooth kept rupturing the vessel, that is why there was so much blood. So now we are looking for a dentist to talk to and see if there is anything we need to do with that tooth to help this from happening again. So I have another mission to find a good dentist, I know of a few but need to find the diamond in the rough that is willing to be patient with Quinn, who does not like to have people looking or touching her mouth.
Well, after all the excitement, we got home and Quinn and daddy took a good long nap, and we have not had any problems with her teeth. So I’m happy about that! I am looking forward to a short week next week, and hoping to find lots of time to play with Quinn. Time just flies by. I have a list of people to see and things to clean, and they seem to stay on the list, instead of being crossed off. Maybe we will find the time to play and visit over the break.
Thanks for checking in on us!
Susan
Here is a video of Quinn swimming, she loves the water, this is not her at her best, but it's still pretty good. Turn down your volume, I get a bit loud to get her motivated, but it's a great video. I don't know if I'm doing the video's correctly, since a few of you can't open them, so I'm still working on that, hope you can see her working so hard!
Saturday, November 14, 2009
11-14-09
Hello! Welcome to our new site. Be sure to scroll down for Quinn driving the wheelchair at Handprints.
Our week has been long. Long nights, that is. Quinn has gotten a cold and that affects all of us. I think the two of us had a couple hours sleep total, Tuesday night, Wednesday night we doubled it, after having her sleep in her chair, so she could breath easier, and it has continued to get better. In fact the last two nights she has only woke up a few times, I on the other hand, I wake up and don’t hear her at all, and that makes my heart race and then after I see that she is sleeping calmly, I toss and turn before my heart calms down so I can get back to sleep. Yesterday John added to the mix by throwing out his ankle again, so it’s been an exhausting week for all of us. I was planning on a major cleaning day, but John has been sleeping most of the day, and Quinn and I have cuddled and she is taking her third nap for the day. I really need to get a nap in, but when there is so much to do, I have to pick my battles, I think I’m leaving the leaves for awhile and focusing on laundry and the inside of the house, playing with Quinn and I’m planning on a nap after the football game. The good things that have happened, Quinn finally got her H1N1 vaccine, and had some great therapy sessions. I hear she is now focusing on the color orange and roosters as her animal of choice to talk about. We are having some issues with her foot braces rubbing her the wrong way, but Chrissy is helping us figure that out, so that is good to get figured out. Over all, I’m just so thankful that her cold seems to be improving! So I think I’ll end there. I need a nap, and since everyone else in the house is sleeping, I might think of resting for a bit before Quinn is ready to play!
Our week has been long. Long nights, that is. Quinn has gotten a cold and that affects all of us. I think the two of us had a couple hours sleep total, Tuesday night, Wednesday night we doubled it, after having her sleep in her chair, so she could breath easier, and it has continued to get better. In fact the last two nights she has only woke up a few times, I on the other hand, I wake up and don’t hear her at all, and that makes my heart race and then after I see that she is sleeping calmly, I toss and turn before my heart calms down so I can get back to sleep. Yesterday John added to the mix by throwing out his ankle again, so it’s been an exhausting week for all of us. I was planning on a major cleaning day, but John has been sleeping most of the day, and Quinn and I have cuddled and she is taking her third nap for the day. I really need to get a nap in, but when there is so much to do, I have to pick my battles, I think I’m leaving the leaves for awhile and focusing on laundry and the inside of the house, playing with Quinn and I’m planning on a nap after the football game. The good things that have happened, Quinn finally got her H1N1 vaccine, and had some great therapy sessions. I hear she is now focusing on the color orange and roosters as her animal of choice to talk about. We are having some issues with her foot braces rubbing her the wrong way, but Chrissy is helping us figure that out, so that is good to get figured out. Over all, I’m just so thankful that her cold seems to be improving! So I think I’ll end there. I need a nap, and since everyone else in the house is sleeping, I might think of resting for a bit before Quinn is ready to play!
Sunday, November 8, 2009
November 8th, 2009
This has been a week of continued improvement and education for both Quinn and I. Quinn had a new appointment with her hip doctor and it went well. The x-ray did not show a lot of improvement, a little and that is ok with me. More then that, Quinn herself has so much flexability, her therapists notice it, and so did her doctor. Yeah for that.
Quinn is teething again. She is so tough, she does not complain until it gets to be way to much, then she just wines. As soon as I give her even a little bit of attention, she calms down. I think after this bunch, she will have all her teeth. She has about 4 coming in right now.
Well, my new bit of education is that I am officially starting to educate myself on adding an addition to our house. We won’t be doing it for quite awhile, because we need to save up as much cash as possible. We are thinking of making one of our bathrooms more accessible, and adding either a chair lift or elevator of some sort, as well as a sunroom / therapy room. (Ideally I would love to add in a small pool the size of a large hot tub too, but that will probably have to wait for a long while. So we are once again looking into joining a health center with a pool, because I need to stay / get into better shape so I can continue to be my best for Quinn.) So I am going to start learning about handicapt grants that might be available, contractors that know what to do, what choices I have, what kind of prices are involved, and then after taking all that information into account, how to make it look lovely, not like a hospital. So anyone with any ideas, I’m looking for lots of them. The good thing is that I can still carry Quinn up and down the stairs and get her in and out of the bathtub with out to many issues now, but as I look at the size of some of my 5 year olds at school, I think I might have some issues with that, so I better start figuring out what my options are now. Since I don’t see my fairy godmother flying in to take care of it for me, I better start educating myself! Again, any suggestions would be very appreciated!
My other new bit of education is that I’m getting ready to switch my blog over to a new site, I’m still working a few kinks out of it, but it’s getting close, so when it’s ready I’ll give you that site. It’s going to be lovely!
Past that, Quinn, when she is not teething, she is busy laughing and smiling. She has not wanted to eat by mouth much at all this week, I think it’s because she is drooling so much with those new teeth, so just keeping track of that drool is about all she can handle. She is in the other room singing and singing right now. So I better sign off. Today I’m playing with her and cleaning the house. Yea for a fun day!
Thanks for reading!
Friday, November 6, 2009
You found it! I'm finally switching over to a new format to publish Quinn's weekly adventures.
Feel free to go back to the old site to read the old blogs, but I'm trying this new site out for a bit to see how it goes.
The old site is: http://isite.lps.org/sotte/web/quinn.htm
So feel free to check on all the progress we have made, but check back here often for our new excitement and adventures.
Feel free to go back to the old site to read the old blogs, but I'm trying this new site out for a bit to see how it goes.
The old site is: http://isite.lps.org/sotte/web/quinn.htm
So feel free to check on all the progress we have made, but check back here often for our new excitement and adventures.
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