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!
video

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!

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!

here is Quinn driving all by herself! Horray Quinn!

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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.