1-31-11

We had fun last night. We should have been sleeping, as it was past 11:00, and Quinn had not had a nap, but she was so giggly, and happy, that I gave in, got my camera out, and we played for a bit. To top it off today was a super day at school for her, so I can't even say that going to bed late was a negative when it came to school. In fact the sub nurse said she understood Quinn say: Corduroy, after reading the book, as well as button, and ball. Yea! It's good to hear other folks are starting to see her spunk, and know that I'm not making it up.

We have a snow day tomorrow, so we will get to hang out and play, which is great, because I was thinking I was not going to see her all that much with conferences, they too were postponed and we will have them next week. We will see if we get more fun photo's or not. Well, I better get Quinn to bed, just had to share our fun photo's from last night.

blessings,
Susan

1-28-11

Quinn's newest addition are new hand splints. When she is stressed she tightens up her hands and will not relax them. It is getting so much better then it was years ago, but thanks to the CDC clinic for asking about it, and Diane and Chrissy making them, we have started them. Quinn does not wear them very much, but once in awhile to help her loosen up, and help her hands stay relaxed. As you can see in the picture, she was snuggling with them.
Next up, Quinn got to hang out with Casey, and still loves her. Chrissy could not even get Quinn to walk that day, but she would for Casey. Casey was trying to help Quinn on head control and walking at the same time. Good work girls! Just look at how long Quinn's hair is getting too. Wow!

Finally these are old ones, but I just got them. Chrissy and a few friends made Christmas cookies. Well that was the plan, but Quinn wanted to make Q cookies and sprinkle them with yellow sugar, so Quinn made Q is for Quinn cookies, and they were very good!


This next week is going to be an interesting one, with Parent Teacher conferences, classes, and getting ready for the heart ball. I'm wondering when I'm going to get some quality Quinn time. Well, Quinn is trying to have quality time at 4 in the morning, which is better then 3 which is when she was waking up it this last month, so we are getting better, but I'm thinking 5:45 is early enough, so some day, we will get back to sleeping in, so I'm now exhausted by 7:00. Talking about that, I've got to get to bed. Quinn had a 3 hour nap today, so she is not acting to tired, but me on the other hand. zzzzzzzzzzzzzzzzzzzzzzzzzzzzz, woops, I'm going to bed.

1-22-11

Here are Kiara, Alexis, Annette, Amelia, Chrissy, & Quinn getting filmed by William.


Here we have a little daddy Quinn snuggle time.
Again I want to thank the guys at NSIGHT Media. They are so nice, not the fake nice, we are getting paid for this, but really good guys, and actually they were not getting paid for this, as I’m almost sure they do it to help out the American Heart Association. So if you need video or media services, check them out at nsightmedia.net, Thanks gentlemen!


Hello! It's been another busy week. We started off last weekend with the rest of the filming for the Heart Ball. The Heart Ball is put on by the American Heart Association and is coming up on Feb 5th, in Lincoln at the Cornhusker. Everyone is welcome, but it's pretty pricy. Lucky for us, we got our tickets for free, because we are the big story of the evening. That is why we have been buying dresses and John and Harold are getting measured today so they will be ready to go.

Well Saturday Grandma Vicki, Grandpa Steve, Grandma Martha, Grandpa Harold, as well as Quinn’s cousin Kaleb all came to play with Quinn for more videotaping. Finally Quinn showed off, laughing and walking, playing, but not much talking. I’ll take what we got. Then Monday we did some filming with Chrissy. I did my interview and finally did not cry like a baby, so thank goodness, I pulled it together. If you want to read my 8-page scrip of our life, go to our download page to download the paper. You might learn a few more things about us. http://isite.lps.org/sotte/web/quinn.htm I think our story is only going to be about 5 to 7 minutes, so a bunch of our story will be in the scrap pile, but I simply could not cut it down any more then I already did. So now it's all in their court.

Quinn made it to school the rest of the week until Friday. We woke up Friday to Quinn coughing, which is nothing new, with her trach, but after about 15 minutes she was ready to start the day, smiling and so happy. So I dropped her off at Chrissy’s and went to school, honestly thinking this would be here best day yet. Only to get a call over my lunch hour from Chrissy to find out that Quinn was at her house, because school called and Quinn could not stop coughing, so she went home early. First, I’m so thankful for Chrissy. I don’t know what I would do if I needed to take off of school to run to get her when she is not really sick, but tired. I wonder if she is acting up a bit because she has another new sub nurse and she is not a big fan of change. I don’t know what the issue was. So Chrissy, thanks so much for taking such good care of Quinn. It means so much to me! So Quinn took a 5-hour nap, when she got back to Chrissy’s and woke up feeling much better. We had one more coughing fit then had a super night. Right now she is lying next to me trying to kick the computer off my legs so I will play with her, she is too cute as she is giggling and jabbering.

Past that we are going to lay around the house, as part of Quinn’s issue on Friday might be due to the fact that she did not take a nap all week, and when we go to bed lately, she lays in bed and sings and does anything possible to stay awake, so she has been so tired. So we are going to rest, or should I say my plan is for us to rest, I think Quinn has other ideas. I finished report cards for about 500 kids yesterday and I need some rest time too. It’s so cold outside that I’m thinking resting sounds very good!

1-15-11

Well, we have been busy! We started out the week with two snow days! Yeah for snow days, they are Quinn’s first official snow days, and she seemed to be ok with staying home. Monday we did a lot of cleaning. It seems like my house shows my mood, or even dictates what my mood will be. When it’s a mess, I’m a bit of a mess, and when it’s clean, I’m light and feeling free. Well, after listening to the Little Mermaid for at least 8 times, Quinn was ready to listen to blues music instead. On Tuesday we hung out and slept in, then it was off to therapy. We braved the cold weather to go walk around the mall, and we picked up some fancy red shoes for Quinn, and a dressy dress for me, and so we are ready for Febrary 5th, and John gets his measurement for his 1st tux ever, in a week or so. I was happy to find a couple choices and something that I think I’ll feel ok in, as I’m not a huge fan of getting dressed up in the first place. After some shopping and a nice walk in a warm mall, we headed to therapy. We met Kurt there, along with Suzanne and Chrissy. We ordered some new devices to help Quinn be even more successful. We got a new walker that is bigger, as Quinn is now 32 lbs, and 35 inches long. We got her wheelchair adjusted and she sits so much better now. We ordered a bath / potty chair so she can go potty easier then having us hold her on the potty, as she likes to sit there for a good 5 minutes before she can relax enough to go. We also got a brace for her neck, to help her hold it up while she is walking or really focusing on something, so she can really focus on that. Her neck is getting so much stronger, so we won’t wear it all the time, just once in awhile. So that was a big meeting, where we really got a lot accomplished. Now Suzanne has a big job ahead of her, because as a Physical Therapist, she has to fill out all the paperwork to turn into insurance, to share why we need this equipment. So thanks Suzanne!

Quinn made it to school on Thursday with another new substitute nurse, who I think will do fine with Quinn. Quinn has a cold again, and is full of snot, and is doing lots of coughing, but at school, she is keeping them on their toes, but they are taking good care of her.

Thursday’s therapy was interesting, as we had our first day of taping of our story. Ironically Quinn was asleep when she got to therapy, and it took a good 10 to 15 minutes to wake her up. After finally waking up, she decided to start coughing for another good 5 to 10 minutes, exciting stuff to be taped. Finally she got herself put together and did some good work with Diane and Suzanne. They we did some taping of me telling our story. I don’t know what my issue was, as I had not really had a lot of time to figure out what I wanted to say, as I had just gotten the questions a few minutes before the taping. Well, after an hour and a half, we might have gotten 5 minutes of usable tape, it seems like the rest was me trying to get myself under control. I am so thankful for Quinn, and she is doing pretty good, but when I really reflex on our struggles, at times I have a very hard time. Having two guys who were so kind and understanding almost made it harder. If they would be a bit meaner, and not be so understanding, maybe I could have done better, but instead they were so understanding and caring, that I was just a mess. So Sunday they are filming the grandparents and Quinn’s cousin Kaleb, while on Monday, they are filming Chrissy and Amelia. So I have two more shots at getting my words out. They even gave me homework to get my words ready and after last night and tonight, I have 8 pages of our story. The more I think about it, I have so much more I could add, but our story should be about 5 minutes to fit into the presentation, but I don’t know if I can take anything else out of our story, so we will see what we get.

I think reflecting on our story helps me accept everything and grow and heal every time I go through it, and that is a good thing. So getting past the tears, it’s good to talk.

Friday she was back at Chrissy’s, because it was a teacher workday, and Quinn was surprised to see Casey show up, and got the biggest smile on her face. When Quinn was in her walker, she was not all that interested in walking unless Casey was helping her, past that, she did not want to go anywhere, she just wanted to stay there to see what was going on. The day before she did walk 45 feet with Chrissy’s help! Yeah for Chrissy and Quinn!

So here is to a morning of cleaning, while Quinn and John sleep. So we can be ready to go tomorrow when everyone shows up to do some filming! I better get in a couple more workouts, to get my body and mind ready for this. Gotta clean first however!

Blessings,
Susan

1-8-11

As I watch Quinn sleep, I still feel so blessed to have such a beautiful, wonderful, amazing daughter, and I'm so grateful for her! Thanks God!



What a week. Quinn made it to school all four days! Yeah for that! Her nurse however only made it three days, as she broke her leg, in 3 places to top it off, so we send prayers out to her. Here they were into such a great groove together, but our sub nurse showed up today, and lucky for Quinn, she knew her from being one of her nurses at school in the past. That was nice. So prayers for Joleen to heal up.

Our other exciting news, as is obvious from the pictures above is her 2nd trip to the dentist. Dr. Scott is so wonderful with Quinn. Quinn bit her once, but after she figured out what was going on, she did great! She did not love the floride or polish, as she is showing that she did not want a picture taken at all!

Quinn is feeling good, sleeping all night, at least for the last 3 nights, so let's keep that going. She is working hard at therapy and is so loose, which is good.

We got results back from the Children's Developmental Clinic. She does have a curve in her back, 23 degree, that was not a surprise to us, and is common in kids that are not mobile, but nothing to worry about yet. Her seizure meds are good, her levels are all good, and we have to keep an eye out for her iron levels, they are a bit on the low side, but mine are too, so that is not a huge surprise. Over all, great results.

We got some pictures from Miss Rachel from school, and the pictures tell the whole story. You can tell that Quinn is loving school, and that is something I am so grateful for.




Finally I went to see a speaker at Bryan Hospital on Thursday night, on Parenting Children with Special Needs. http://www.thehaliproject.org/index.htm I went thinking it was going to be information on where to go and what to do, but instead he was basically a motivational speaker. My bucket was refilled that night, and it was wonderful. Their website actually does not do justice to how great he was. I've got all kinds of information to share, but I'm in need of a nap, so I'll share tidbits soon.

1-5-11

Here are a couple of the pictures from Shane and Sunnny's http://www.shaneandsunny.com that I mentioned a couple blogs back. I'm not sure what picture will be in the gallery, but will let you know when I find out more about it.


We are back into the swing of things, with school, therapy, and life in general. I don't want to jinks it, but Quinn slept through the night with no coughing at all. So that was so good for both of us.

Past that, I feel like I might get myself caught up sometime soon, and feel on the ball, but eventually it will happen! Having Quinn feeling better is a good start, so I'll start with that.