2-25-11

Oh, to see her sleeping so soundly this week made my heart sing!
S I C K – That is what has been going on for the last part of the week! I found out what exhaustion can do to a body. It makes you feel like you are going to implode. I won’t go into graphic detail, but it’s gross and so much worst then the flu, but on that same line. In fact one morning I did not feel like I could even get Quinn out of bed, and Chrissy was wonderful and came and got her ready to go and took her away for the day. Quinn has a cold, and I’m glad it’s not more then that, but she coughs then cries, then tries to sleep but doesn’t get a good quality sleep, because before you know it she starts coughing again, and the cycle goes round and round. She only went to school one day this week, and went to the doctor office right after that. O.K. now that the yucky part of the week is over, let’s go back to the first part of the week, when she had a cold, but was still feeling ok.

Monday she was at Chrissy’s and her teachers, Miss Rachel, Miss Joni, and Miss Diane all went to Chrissy’s to hang out and see her in a different environment. I know Quinn is really good at playing possum, and acting like she can’t do much, and would rather hang out and watch the kids and see what they are doing, so I’m sure like many of you that see Quinn in small amounts, folks think I make up what Quinn does sometimes. So I’m so thankful that these teachers were willing to give Quinn their time and hang out with her outside of school. Well, I hear that at first when they went to Chrissy’s, Quinn looked at them, with the what are you doing here, kind of look. Then Chrissy started trying to get Quinn to show a little bit of what she can do, and at first she was not going to do anything. Then finally after a little discussion she decided to show her teachers what she can do. Then a couple of them tried the same techniques and again, Quinn did not want to show them what she could do, but finally did. I can just imagine her thinking “Oh poop, now they know I can do that too.” Well, then the teachers put Chrissy and Quinn on the spot, as Chrissy was telling them that Quinn knows all her colors, and of course she does not show them that either. So Chrissy had Quinn on her lap, and they laid colors out in front of them both, and had Chrissy close her eyes, so she did not know where the right answer was, and just held Quinn’s elbow to help her reach out to the right answer, Quinn doing all the work, Chrissy just giving assistance. As she was telling me the story, I just kept thinking, please say she got them right, and Chrissy said they would have gotten like a 90% on their little quiz, and I’m so happy with that. Phew, what a busy day.

Tuesday Miss Joni and Miss Rachel came to therapy too, watching her in another new environment. Quinn does not talk much at school, and most folks there don’t ever here her yell, which is good, she does not need to do that at school, but as she was working so hard at standing, they heard her hollering and talk, using real words, so they saw another new side to her. She did not talk as good as she does with Stacie, (her speech therapist,) so they are going to go back and see Quinn with her soon. I once again have to mention how blessed we are. We have such a great support system, and I’m so thankful to have her teachers working so hard to see what Quinn can do too, and then hold her accountable.

Wednesday Chrissy took Quinn to see Dr. Martin. I'm out of vacation time, so Chrissy was willing to take her, and all in all, I thought Dr. Martin would like to hear from Chrissy, as sometimes she does not believe what I say about Quinn. It's starting to be a stream of folks thinking I'm making things up, but it's not just me anymore, there are a handful of us that she is showing off for. Well, Quinn freaked out for Chrissy when they got there, and Quinn did not really show off at all, and Chrissy told Dr. Martin and her amazing staff about what Quinn was up to. The did a few tests, and again, Dr. Martin said Quinn was holding her own nicely. She followed it up by stating how it's kind of amazing that she is doing so good, and is not sure how that is happening. Chrissy told me she knows why, God! I agree, God is amazing and giving Quinn so much strength and I am so thankful! I need to be sure to be thankful and not take her heart for granted, because she is doing so well. To top it off, Chrissy informed me that with help, Quinn can write most of the letters in her name! Phew, what a good day!

Then it goes into the sick portion of the week, and I won't bore you with the details, Grandma Martha came over to help one night, so I could sleep, past that, we listened to stories and music, and laid around like slugs, when we weren't coughing. We did get some good cuddles in, and you can't beat that! I'm looking forward to lots of rest this weekend and then we will be ready to tackle next week. I'm also looking forward to seeing what happens at school, now that Quinn knows the teachers know what she can do.

Oh, Quinn was in the paper again, last Monday. There was an article in the paper about the heart ball, and it had a short version of our story. I thought it was crazy how there was a big BELIEVE sign on the front of the magazine with our story. BELIEVING is our strength, and we do believe in Quinn and so it's just crazy, to see that on the cover. Every once in awhile, I see God talking to us in those little ways, that are not all that little, but more, take the wind out of my breath moments. It makes me excited to see what our future holds. I'm loving advocating for the heart association. I've wanted to find a cause, and this one just fell into our lap, and the folks we work with at the Heart Association are amazing!

2-20-11

You would never know from this picture that we just cut 4 inches of hair off of this beautiful head!
Look at the curls, hope we still get curls after cutting so much of them off. We will see.


Quinn did great getting her hair cut! Good Job Quinn!
A few more fun facts to share about our weekend!

Quinn had her first full hair cut today. We have done some bang trims in the past. Today we cut 4 inches off the back! I really thought I might cry getting it trimmed, but it honestly looks so much better and Quinn and our hair dresser both did great. YEAH for yet another 1st!

Today we went to church, and Quinn officially has Grandpa Harold wrapped around her finger. We had to play musical chairs so Quinn could sit by Grandpa. She is just loving her grandpa. Well we went out to lunch after church, and Quinn again just kept looking at Grandpa. Not much talking, but lots of flirting and eye contact. Actually lots of eating too. Beans, potatoes, and bread with cinnamon butter! It's good to see her being so successful. Well, as we were leaving, Quinn waived bye to Grandpa and Grandma, and Grandpa had to come over and in his fun silly way tell Quinn bye, like 15 times, in 15 different voices. Well, Quinn did not really give any reaction, but like 30 seconds later, as I was putting her in her car seat, she started giggling, not just a little giggle, but a big tummy jiggling laugh, followed by her saying Grandpa. She is finding her sense of humor! Whew, that makes me smile, and so grateful for everyone who touches her life in such a wonderful way. Our faith re-inspired, Silly voices, a lovely lunch, family, and tummy laughs, what more could we want. Thanks Grandpa Harold. Well we did go drive out to look at "Quinn's lot" where we are going to be digging soon. That was fun too.

Here is Quinn at school playing with a switch that triggers the bug to vibrate. I keep hearing storied from school that are so positive and I appreciate it so much! YEAH for Riley Elementary!

2-18-11
Well, over the last week, we have had a few more firsts! I’m starting to feel like I’m missing lots of Quinn’s 1st’s, but with all the love she is getting, I’m glad to share some of her 1st’s with our great group of folks that love on her like I do.

Well, I think I can safely say that not many of you can say that you have gone to a strangers house to have your daughter sit on their potty chair. Well that is what we did. I met Chrissy and Quinn over at Becky and McKenzie’s house to see if their potty chair might work for Quinn. So, thanks to those girls! It was a really good trip on many levels. First, Quinn seemed to like the potty chair, and I did too. It will roll right over the regular toilet and that is a big deal, as I will have less to clean up. Quinn keeps doing great with potty training and is getting faster at sitting and going, instead of sitting and messing around then finally going. I have to admit my parents would get so frustrated with me for hanging out on the potty when I was little, so she comes by it naturally. I was inspired by McKenzie and her mom, she is in high school, and she is dependent on her mom or others to help her with most things, as her mom said, but at the same time, she is crazy smart, and they way she adapts to talk is amazing. I think she is the first to say that she has a super sense of humor, and by the time I left, I was totally in love with that girl. What a great role model for Quinn. It makes me even more excited for the future, well, sometimes I’m excited, sometimes I’m scared, and unsure, and sometimes I don’t want to think about the future at all, but leaving their house last Friday, I was hopeful. So thanks McKenzie, you inspired me! Next, I got a few more ideas for our house, as their house is accessible, with a chair lift to the basement, and the little things that are not so little. We talked about door handles, and light switches, bathroom faucets, and smooth walkways through doorways. So I added even more ideas to my list to give to our architects. Talking about that, we went to the home builders show last weekend, and got a few more ideas, but better yet, we heard that the house is closer to physically taking place, and we should be breaking ground to dig the basement within the month! Yeah! That is exciting and makes me nervous both!

Quinn did great at therapy. They are doing more testing with a computer to help her talk. She did great. I hear they asked her to find the G on the screen for Grandpa, she said “Gu Gu Gu” then looked at Grandpa and then picked out the G on the screen! Yeah for Quinn!

Wednesday we went back to see Dr. Sewell and once again did a bit of maintained on her trach site. When we were there a month ago, the procedure hurt. So when we pulled up this time, and Quinn saw where we were, right away, she got upset. This time we were a bit smarter and had given her Tylenol before we went, but she is a smart cookie, and was upset to be back there. When the doctor came into the room, Quinn would not look at him, in fact she looked as far away from him as possible. He tried so hard to give her some love, but she was not willing to accept any of it. So we got down to business, and again Quinn started screaming and crying, but after it was done, she totally calmed down, I’m guessing it was not as bad as she thought it would be. So we got back to Lincoln, and by then, she was back to doing great! I’m so proud of her.

Well Thursday and Friday, Quinn’s sub nurse was sick, so she once again had a sub nurse, and with Quinn not feeling great due to her procedure on Wednesday, she was not feeling all that great Thursday, and then to have the added issue of not having the usual day. So basically, Chrissy got a call to go pick her up from school. After a bit of love and a good long nap, as well as another dose of Tylenol, and a bit of time,she was doing great.

Past that, the weather has been beautiful, however we have not gotten out all that much, as the path we walk on, has been covered with a mountain of snow, but it has been so nice.

Hmmm, past that, we are looking forward to relaxing, cleaning the house and playing this weekend! Exciting stuff!

Thanks for checking in on us.
Susan

2-11-11

Here is Quinn’s nurse who has been caring for her at school, since her other nurse, Joleen, broke her foot. This is Nadean, and it’s sounding like she is loving Quinn up like crazy, and I sure am thankful!

Quinn with her Bedtime Bear, just look at that snuggle! Love it! Just and FYI: the blue tubing is simple there to give her extra humidity, with the trach.

Well, we have had a great week. I was not sure what could follow up our exciting weekend, but this week was the perfect week to follow up a crazy exciting weekend. So to start off, keep your eyes out for L Magazine. The American Heart Association, rewrote our story, and will have it in that magazine. It sounds like it comes out in the paper in a few weeks.

As for Quinn, she has been a busy girl! A very busy girl. First off, she is loving on her bedtime bear lately like crazy. I remember when she was little bitty, and the therapists would talk to me about how important it was for her arms to come to the center of her body, and how that centers the person. Well, she crosses her arms over this bear, that she holds so tight to her chest, and it first of all, is cute as can be, and I feel so good to see her crossing her arms across her chest, again, such a small thing that is so good to see. I was thinking as I was driving home from school, yesterday the long drive that I spend over 30 minutes most days driving, and I was thinking back to the Heart ball, and all the successes Quinn, has had this last week, (just keep reading) and tears just started pouring down my cheeks again. Tears of joy, and again, I was reminded how lucky we are to have the experiences we have had. I am so grateful for the little things, and they are a big deal. I don’t think I would be as grateful for those things, without all of our experiences and it makes me thankful for all of them. I still would not wish any disability upon Quinn, but we have it so good, and I’m so very thankful for her and how hard of a worker she is. I simply will not take it for granted!

O.K let me say it is 4 in the morning and I can’t sleep. Quinn is doing much better sleeping through the night, but I have not readjusted to it quite yet and so I’m wide awake, thinking of the million things I need to do, so figured I would start here, as the stories I have for this week are amazing! So just keep reading! Amazing I tell you! If it is a bit off kilter, know that it’s early, it’s all true and amazing, but I am a bit tired, not tired enough to sleep, darn it, but, well… just keep reading this is going to get good!

First with the amazing, but not crazy amazing yet. Well, Quinn is 4 and she is now acting more and more like a 4 year old. She is now throwing temper tantrums. Not for everyone thank goodness. As Quinn’s nurse, Nadean was asking Chrissy, if Quinn ever cries or gets upset. Well, I’m glad she does not do that at school, but YES, Quinn can throw temper tantrums like crazy. She has been doing it for Chrissy lately, when she wants something, and she does it for me at home. She can start yelling and crying and can she ever get loud. She has the trach figured out and can totally find her voice now! Now she does not throw fits for her precious dad, but he has stepped in and had a couple big talks with her, that he will not follow through with their special nighttime ritual of singing, and cuddling before bedtime if he hears that she threw any fits. Well, she is to smart, because yesterday she did not throw any fits, so she had her daddy time, but right after daddy time, when I had laid her down, and was getting her situated for bed, she threw another fit. Interesting she did it after her daddy time. She is a smart cookie.

Getting back to school, she did not throw a fit on Tuesday, but did, in fact get her point across that she did not want to be there. Basically the entire morning, she kept her eyes closed. How weird is that. She was not asleep, and would peek out a bit here and there, but has figured out, if she does not want to work, she simply closes her eyes. No tantrums at school, but she figured out a very good way to get out of working. Darn, we are going to have to get smarter and smarter to stay a step in front of her. She was fine the rest of the day, and fine when she went to school Thursday, and kept her eyes open and did great. I don’t know what was up with Tuesday, but a calm passive way to get her point across, I guess.

Tuesday afternoon was therapy and I was not there, as I was at my school doing Parent Teacher Conferences, and was told another fun story. Staci, Quinn’s speech therapist, was telling me about how they were using the computer to have Quinn touch the things that matched. Stacy was behind the computer and helping Quinn that way, so she could not see the screen, but knew Quinn was touching the right things because of the sounds, I’m guessing, when the next picture came up, Quinn said “wheelchair”, yeah, another new word. Staci even peeked over the computer to see the monitor, and yes, it was asking her to match the two wheelchair pictures. That is great! We are starting to look into getting some kind of computer that Quinn can take with her to help her get her point across to the people around her. I’m sure it will be a long process, but if it can help all of us understand her even more that will be great. It might even help with her tantrums, as she might find easier ways to get her point across to us. I just wonder if she things we are morons to not understand her sometimes, and that is why she gets so upset. I don’t know.

Wednesday is where this blog is going to get good! Quinn always stays with Chrissy all day every Wednesday, and after her strange Tuesday, when I told her it was Wednesday, a “Chrissy day”, she threw her hands up in the air, and yelled “Yeah”. Again it’s a big deal in our house to see her throw her hands in the air, as that takes lots of control. Quinn really does love school, and is learning so much, as she is usually excited about it too, but not Tuesday, with her eyes closed, and now giggling with delight to be going to hang out with Chrissy, but really that is nothing new, as she loves Chrissy. Well, Wednesday was a very good day! A very good day. I always try to call over my lunch break to see how the morning is going, and was greeted with great news. Amazing news! Quinn was identifying letters. A truly tangible, no doubt about it, no one can second-guess it, picking out correct letters. Whew, what a big deal. I’m going to use Chrissy’s words here of what happened.

I wanted to let you know that Quinn must really be paying attention at school. On Wednesday she identified 10 different letters. R U B E A P T S C and W when choosing between 3 different ones with 100% accuracy? YEAH! - Chrissy
PS. She would touch the letter I asked for, out of a group of 3. I put my hand under her elbow for support, but she did all of the reaching.

I agree, YEAH! Yeah for Quinn, Yeah for Chrissy, Yeah for School, yeah for a great support system, not taking her at her first impression, which is not always very good, as she acts like she can’t do much, but giving her time and love and, not giving up. Because even on the days where she might not be acting like she is paying attention, she is, as is proven by Wednesday’s events. I've heard that she practices letters at school every day, talking about them, looking at them, tracing them, and writing them. Wow, it's working!

What a wonderful week we have had. We just continue to see Quinn grow and figure things out, and it’s amazing to watch her figure things out, I feel like a broken record sometimes, but again I’m reminded how – Life is Good!

2-6-11 Heart Ball Video

I'm re-posting the Heart Ball Video, I did not think you could see it very well, so I made the pictures bigger! I love it! It was a very Good Night! If the video does not show up, click here to see it. Then click on the Heart Ball.

2-6-11 Heart Ball

Quinn giggling with Annette and Chrissy
All of us at the ball.
Annette Quinn and Grandpa Harold giggling yet again.
Quinn and Daddy
The program
The Heart Ball is over! Quinn and I are wide-awake in bed at 8:30 in the morning now, on this lovely Sunday morning, and the rest of the house is still sound asleep. Which goes to show how much fun we had last night.
We started the night at the Cornhusker Hotel, and walked into the lobby to be greeted with Red Roses in vases all over the place. They were beautiful, as were all the folks who attended. Seeing everyone in black tie attire was beautiful. Especially the 10 of us who went. Quinn, John, Quinn’s cousin Kaleb, Grandpa Steve, Grandma Vicki, Quinn’s caregiver, Chrissy, Quinn’s 2nd caregiver, Annette, Grandma Martha, Grandpa Harold, and me. We got to walk around for a bit to start, looking at the auction items, and there were lots of them. Not a single one of us won any of the auction items, in fact I don’t think any of us bid on any of them. I can say there were a couple of beautiful pieces of art that tempted me, until I saw they were already bid up to way over 600 bucks, so I guess I’ll make my own. Good for the American Heart Association though, that money funds so much research.

When the doors were opened up to the ballroom, we were greeted with even more red roses and a lovely red hue was glowing over the whole room. Dinner was started and we had salad, and a nice dinner, along with lovely little cupcakes. They even brought Kaleb a kid’s plate, which was very nice. Quinn got to eat watermelon, and seems to do OK with that. I think she was having even more fun when Annette was holding her and leaning her backwards, when she would see Grandpa Harold making his silly faces at her, and as I watched her giggle, I was once again reminded how good we have it! Kaleb did a great job staying on task and playing with a few things we brought along for him to play with.

During the dinner I got to give one of the 5 toasts. I got the honor of toasting the Survivors. Survivors like my husband John and our Mighty Quinn. The microphone was very loud, but the toast went well. Next up was seeing all the Heart Ball Sweethearts, who are girls in high school who were all in beautiful red dresses and their job is to help spread positive energy as they volunteer for a few different causes. Good for them.

At this point I think most of my table was starting to get a bit frustrated with me, because they were tired of all the pictures I was taking, but I wanted to get the night captured for Quinn’s journal, this very journal, that I keep a paper copy of. I have to say that I did not get any pictures of our video or any of that portion of the evening, so that kind of stinks, but oh well.

Next up was a live auction, and it was starting to get loud, and you could not really hear what was going on. I started thinking, our video is up next, are these folks going to talk through it too? Well, as I was holding Quinn, she popped the stiches holding the top of my dress together, and I was in trouble, I was not sure if my dress was going to stay folded down nicely without showing off my undergarments, luckily Annette had a safety pin and Annette and Chrissy and I went out to the lobby to fix it. We were going to go to the restroom but it was to crowed, so they had these old phone booths you can step into, so we stood in there to get pinned and rearranged. It was kind of like a Superman moment in that phone booth! We don’t have any pictures of that either, thank goodness.

We had not sat down for more then 5 minutes and our video started. Those 7 minutes went by so fast. It started off with my statement in big dark letters.

Life is Good.

Then went into our story. I can thankfully say that the room was quiet enough to hear a pin drop as our video went on. I started talking about Quinn’s 4-month checkup when we found out about her heart disease. Going through the hospital stays, and therapies. It was followed up by talking about John’s heart attach, and finished with my better u exercise experience. I’m not actually sure how it ended because I was getting Quinn adjusted, because I knew we were going to be asked to stand, so the group could see that we were all there. So as planned after the video, Alexis came over to ask us to stand. We did and the applause started. I actually made it through the video without crying, a big deal for me, who is an emotional mess when it comes to watching our story, but I didn’t cry, well now as I stood there, listening to the clapping, getting this big hug from Quinn, standing at the table with family and friends that love Quinn so much, and I was toast, I could feel the tears coming. I looked out over a sea of people, clapping for us. Then it happened. I kind of expected the clapping, what I did not expect was the standing ovation. Wow, that is when I lost it. Quinn’s head was on my shoulder and I was trying to get her situated so she could see what was going on, and when I looked back out over the crowd of folks in their tuxedos and dresses, I saw a handful of people start standing up. I had to blink the tears out of my eyes, and when I looked again, everyone was standing. Wow, that was an emotional moment. I felt as if love had enveloped the room, and it was then that I knew that our story touched a few people and that was all I wanted, to give out some hope and inspire just a few folks. I’m pretty sure that happened, so the night was a success.

To top it off there must have been 5 to 10 people who came over and talked to us after the video, when the dance was going on. Each person’s story was different. One gentleman talked to me about how the American Heart Association did a story about him awhile back, and he knew how emotional it was for us to get our story across. I agreed with him, but also added, how cleansing it is as well. Another woman talked to me about how thankful she was that I was an art teacher, and how her sons would not have made it through school without the arts. Finally a waitress stopped over and talked about how she was bawling during the video and how it impacted her so much to see us tackle life with such a positive attitude through everything and how she was taking so much of how our story impacted her home with her. Wow, that was powerful to hear. My cup runneth over, and my heart was full, by the time we left. Before we left we did a bit of dancing, and Kaleb was by far the best dancer. John tried to get a bunch of us to dance, and finally he succeeded and got Quinn and I on the dance floor for a bit.

We ended the night when Quinn fell asleep in my arms, and as I put her into her chair, she woke up and told us the night was over, by screaming and crying. I can’t blame her, I hate that feeling of being exhausted and not in my bed to go back to sleep. I ‘ll take every bit of her grouchiness, and so we started for the car. We told Grandma and Grandpa Nelson goodnight. Got a picture by our poster, with Quinn screaming and all. Gave Chrissy and Annette hugs, as well as Alexis, and took our tired grouchy baby, who is not so much of a baby anymore, home. The rest of us crawled into our SUV and headed home, feeling so good. Thanks to the American Heart Association for the night. Coming home with our cups full and hearts happy, what a fun night. I think I will be getting a copy of the video sometime and will post it when I get it.
Thanks for reading and supporting us!
Blessings,
Susan

Now for a short video of the night. Enjoy!
If you can't see this one very well, you can also click here.Then click on heart ball.

2-2-11 / 4th snow day this school year

All across the country, people have been wearing red to show their support for Go Red For Women and to help raise awareness of heart disease. On Feb. 4, get out your red -- sweater, shoes, hat, purse tie, whatever! -- and start the conversation. All three of us will be wearing red. Will you?

Here is our "Heart Heroes Poster" It will be shown around Lincoln for the next year, so be on the look out.
The top corner of the poster says:Heart Patients and Survivors, Volunteers, and Advocates.

The bottom of the poster reads: Four year old Quin and her father John, are both heart survivors and patients. Susan as a member of the American Heart Association's Better U Challenge, has learned how to make their family's lives healthier. Heart issues have impacted this family at every turn - but their positive attitude to persevere through life's most challenging moments make them true heroes.


Well February is American Heart Month, the Heart Ball is here in Lincoln this Saturday, and we are sharing our story. There are also 6 posters that are going around Lincoln for a year, to share stories of “Heart Heroes”, so be on the look out.

Since we are turning into advocates, and I am loving it, here are a few facts:




So, what can you do about it? Get healthier! It's not easy, I know it, but it is necessary! Want ideas? Go to the American Heart Association Website.