5-28-10

It’s been an emotional week! A good emotional week!


First the Zeman Student Council decided to give money to Quinn. That is not just a little deal, but a big deal, coming from lots of hard work! I’ve said over and over how I love my job, I work with an amazing staff, but it comes down to wonderful kids! As shown in one of the pictures where we had a group hug! I feel like I say it a lot, and honestly I don’t always feel it, but more often then not I thank God for how lucky I am. On a side note, I got two cards from two of my kindergartners after the assembly, wanting to tell me how they were sorry my daughter was still sick, and they hoped her heart got better! To be followed up by one of their teachers talking about how they had a talk about why she was crying at the assembly, and how all tears are not sad tears, but happy ones. So again, Quinn taught many kids again today, and she was not even there. I have to say as the picture shows, I was emotional. I don’t think I was a total basket case, but I love these kids and staff and I think every day this week, something has gotten to me, and my tears just start pouring out. I blame part of it on packing, as our school is moving, part of it on me being a very emotional person, and part of it on this time of year, as I look at our 5th graders and mourn the fact that I’m not going to see them next year. We have a great group of kids, and I hope and pray that they know how much I care about them. So I am grateful!
After I got home and talked to Quinn, she was excited too! Grandma Martha, and Daddy agreed!

Stories for the week! We have been playing a waiting game with a number of things. Our water occupational therapist is on maternity leave, so we are waiting until next week to start that up again. We had Quinn’s 6-month review for Lincoln Public School System, and we know she will be starting school half days in the fall, but are waiting to find out where that will be. I am starting to prepare myself for that, but I know I’ll be a mess then too. Not that I should be, she will love it, but as a mom, I want don’t want her to grow up to fast. We are also waiting on getting new windows for the basement, as I broke one of them as I was trying to let some fresh air into the house, so figured we have to take care of that, as there is a nice breeze currently running through the basement. We have gone through the procedure of having the sales guys come out, and now we need to pick, and get them ordered and installed. I can’t believe how much more expensive basement windows are then regular windows, but it needs to be done. I also got a call from Assistive Technology, finally, I called them back, and again I’m waiting to get back in touch with them. It’s looking like we might get the lift installed and a ramp this summer and the remodels of the bathroom will be next year, so we will be patient with that too, but I think we can handle one more year in the tub, I just need to continue to take care of myself, so I can take care of her. Although I’m not really sure of anything, so I’ll have to wait to let you know the details of anything. It’s looking like that appointment will be in a couple weeks.

On a different note, my friend Kathy stayed with us for a couple days this week, and I can always count on her being honest in what improvements she sees in Quinn. She heard Quinn say “yellow, and orange” and said she could see Quinn holding up her head so much better, so that was nice to hear. We had a girl’s night out, Quinn, Grandma Martha, Kathy and I we went to Macaroni Grill, that was nice, and Quinn just does so good getting out and being so good! She is such a good girl! In fact tonight she giggled and giggled for me when I picked her up! Oh, how she can pull at my heart!

As for this weekend, it’s a girl’s weekend too; Quinn and I are going to get more boxing done at school. I’m hoping to get it about done. It’s getting to the point that I don’t know where to put the boxes, and I’m letting myself get a bit stressed about it. I just need to get my job done and let the rest go, but sometimes that is hard for me to do. I’m also looking forward to resting and relaxing, and with this being Memorial Day weekend, being grateful for the country I live in and thankful for the people who have given their lives for our freedom, and who are still giving of themselves for our freedom. As well as my relatives who are looking down on us from heaven. It’s nice knowing there are some angels up there helping us out. I appreciate it and love them so.

Wow, this has gotten long! Blessings and by the next journal, school should be out, the art supplies should be boxed up, I’ll have a week long class to take, then summer, I am so ready, so I guess I’m waiting for that too! I’m not taking the waiting for granted though! We have Lots of cuddling and reading, and walker time, and love and so much more, that will get fit in between all the waiting!

Susan

5-23-10

Quinn has loved playing, and Grandma Vicki figured out how Quinn loves to be tossed around, just a little. She will just giggle and giggle.

Quinn is turning into Dr. Jeckle and Mr. Hyde with her talking. When she wants to talk she is doing great. When she does not want to, she will go for days at a time without saying a real word. Thursday she told Grandma to “hold me”, then as grandma was so excited to do it, and picked her up, Quinn gives her a sour look and says “dad”. That’s our girl. Getting a bit fiesty in her 3 year old age. She is also getting more and more spoiled, wanting to be held and at the least in the same room as who ever is here. Right now she can’t see me and is starting to breath crazy, because I’m not in her site. It is so good to see her continuing to find herself and figure out how to make her body work. Then in turn, some moments it is as if her brain can not really find the connections and can not figure out what to do. Thankfully they are connecting more and more, but the moments the connections are not there make me nervous and worried, then the cicle completes itself again and we see continued progress. So I”ll take it. I also think how some moments I’ve got things going on, and some moments I’m so tired I feel like I can’t do much of anything, so I think of that with Quinn too. We all have our moments where we shine, and our moments where we need a bit of polish. Over all we are doing great. I feel like I should bring a sleeping bag to school over the next few weeks, with packing and meeting and final moments for the year, so I’m sure thankful for all the people we have in our lives to help us take care of Quinn! Again I’m reminded how lucky we are!

5-18-10

Why?
I was thinking how we have been so busy moving boxes and packing at school that I did not have to many stories to talk about! Well, Quinn helped me out by talking to Stacie. Oh, and we got new toys to play with, so I guess once I sit down and think about it, we do have a few things to talk about. Well, first last Friday Jen brought us a few fun new switches and toys to play with. We have been having lots of fun listening to Little Mermaid, and Quinn can choose to play it or stop it, with the push of her switch. So we are having fun figuring them out. Honestly I still have a bit of reading and figuring out so I can teach her how to use them.

Well, to the super fun story. – Quinn was working with Diana and Staci and she asked Staci “why?” three times.
Staci- Quinn we are going to start using 4 cards instead of 3 cards to find what I ask you.
Quinn – “why”
Staci – because you are doing so well, and you can do 4 now.
Quinn – “why?”
Staci – because I said so.
Staci - (looking at Diana) well, she is a three year old!

I don’t know where she got Why from, but I’m so glad she does, that shows lots of smarts in that little girl, and I love it! Today all I’ve heard is – done, done, done, when she was eating apple sauce, but no coughs at all, so I’ll take it! It’s been a good week again!

We just got a fun bubble machine for her to push a button and blow bubbles, but it needs to get a bit warmer first. No hurry though, I like it a bit cool, but we will be ready for the summer weather when it gets here.

5-12-10

Here we are at the art museum where the Egyptian wing just opened. We ran into a pharaoh. Quinn was impressed!
We had a great weekend and Mothers Day! I was reminded again how we need to get out and enjoy life, because we never know what tomorrow holds. Not that I think it will be bad by any means, but after seeing a couple of my kiddo's that I read about back in the hospital, and seeing Quinn and John both doing well, we jumped in the car and went to KC for the weekend. We met friends for dinner, walked around the art museum, where Quinn does so well.
Just look at her in awe of the art. She sings and gets so excited around some of it. I am reminded why God gave us Quinn. We will get to lots of art events at the rate we are going. We relaxed, and both John and Quinn were sound asleep Saturday night by 8:30, I think I wore them out.

Then after a nice breakfast we went swimming. This is the first time John got to see her swimming and after a bit of teaching John took over and Quinn worked so hard for over and hour kicking. If you listen to the video, you can hear her say "go"
and "move". She knows when she is kicking we go and move. I thought that was funny that she had to tell dad to go and move.

We also went to the Crayola store and diner. I wish you could see her giggling in this picture. Well, as the picture shows it's very colorful and Quinn loved it. She even did a good job drinking water in public. Normally she does O.K. eating at home, but when we are out and about there is to much going on for her to concentrate on eating, but just drinking water, she was doing great. Yeah, another multi-tasking event going well. Well a fun story at the Crayola store. As you can see, the store is in a mall and the walls only go up part way. We got a few Quinn fans who had to stop and talk to us about Quinn. Three generations of women stopped and said hello to us, and asked to talk for a minute. They informed us the youngest of their generation had a type of cancer where she gets moles over 80% of her body, and asked about Quinn and we talked about how their girl gets looks and they asked us i
f we get many looks. I honestly said we get lots of second looks, but we really have not run into anything nasty, in fact most folks talk about how lovely Quinn looks. I think something like moles are sometimes harder for kids to accept then a wheelchair. That tends to be the case at school as to what I've seen any how. The more severe it is, or more obvious there is an issue, the easier it is for kids to understand. So that was an interesting conversation. Then it was back home.

Notice both of them were sound asleep before we even got out of KC and slept until we got to Lincoln, so stopped to get groceries and I came out of the grocery store to find them trying to wake up. What a nice time we had. I strongly suggest to everyone to find time to get away from your regular day once in awhile. It does not have to be fancy. Hey the museum in KC is free. Oh, Sunday we went to the plaza and a band was playing so John and Quinn hung out and listened to the music, and Qui
nn sang and sang, so luckily we were a ways away, so not to bother anyone. I thought the combination of music was about as good as it gets. Oh, Quinn is also talking a lot more when the mood hits. She was sure to let Stacie know that her favorite color was yellow, and she even was being funny about it.

Wow! I'm getting excited to spend the summer with Quinn. We have a few weeks left to finish the year strong, and get the school boxed up so we can be at another building next year, so as the art teacher, I have a lot of packing. I've had a little help here and there which has been nice. Still so much to do, but then we have summer to look forward to. So as my kids get antsy and excited and don't want to work their hardest, I have to remember I am feeling the same way, so we will all buckle down and get a lot more learning done, then we all have a fun summer to look forward to.

5-7-10

It’s been another busy week. We have not heard anything back from the sleep study, but I figure no news is good news. I have called to check on it, but am still waiting.

Well, as you can see Quinn has her first war wound. She wants to crawl so badly, and her legs are ready. Her arms are another story, they continue to get stronger and stronger, but have a ways to go. She was doing her daily tummy time and although I would rather her not be hurt, she was working so hard and scooted off the blanket and I am happy to see, once it started hurting her, she changed her position and kept trying. First it shows she knows it hurts and at the same time, she is not giving up! Yeah for that.

Next She is working with Diane and Stacie and she is doing great. They will ask her to find the ball or horse or what is red or what ever it may be, then she looks over the cards, finds the right one, and has to push it our touch

it. She gets it right most of the time with a little help! Yeah for that too.
Finally both grandmas’ are spending more time with Quinn lately. She is getting spoiled rotten, lots of time outside, walks, and all the fun grandma stuff. With Mother’s Day here, we want to thank our Grandma’s! We are so lucky to have them, and even luckier that they want to be involved 100% in our lives! So thanks Grandma’s! We love you very much! As for me, I am so thankful to be a mom, there is nothing more rewarding then seeing Quinn continue to progress, well maybe her smiles and laughs, but watching her work so hard, and seeing her lovely disposition, I feel that even though we have been thrown a curve ball, I am so very fortunate to be a mother to such a wonderful child! How lucky I am!

On the other hand – please say some prayers for two families I know. They both have daughters with special issues. They are two of the three bloggers that I read and their girls are in the hospital and struggling! Oh, it makes my heart hurt for them! Miracles happen every day! God works in mysterious ways, I don’t understand it, but I do believe.

4-30-10

Well we got the beds done and in the room. It’s not the ideal floor plan, but this will only be her room until the house remodel. So we will make it work until then. Honestly they have been finished for a while, and she has not slept in her room yet. We wanted to wait until after the sleep study and then with a monitor, and one of us in there if she needs it. So that is nice to check off the list, and we might be able to use the garage to park in again sometime soon.


Well onto the sleep study. We got to Children’s around 7:00 pm and got checked in and read some books and relaxed for about an hour. Then she got her regular nighttime meds, and got all hooked up. There were wires and tubes to check brain waves, oxygen levels, CO2 levels, teeth grinding, snoring, and breathing by way of nose, chest, and stomach. There were also leads down by her feet to see how active she is when she is sleeping. Well, she did not mind getting hooked up. Our technician was great. She was so sweet to Quinn, and so Quinn loved the attention. Jabbering and singing with her. Then we quieted everything down, had her sound machine running and within 20 minutes she was sound asleep. I on the other hand was not. I was listening for everything. Most importantly, I wanted her to have a few of her unusual sounds but nothing out of the norm for her. She does have tone, and sometimes she controls it and is totally quiet, while other times the tone tends to take over due to stress, or something we have yet to discover. So here is hoping and praying they can let us know if there is something we need to do, or keep doing what we are doing. I’ll find out results sometime next week I think. O.K., now that we have the information covered, lets talk about Quinn. I fell asleep around 12:00 and I was told Quinn woke up at 1:00 and gave the technicians and the security guards quite a show. Oh, did I mention they had a camera on her all night, a close up of her face and chest to see how she sleeps and watch her with any noises. Well, as you might know I tend to take lots of pictures of her, and the techs said that for two hours she posed for the camera, tilting her head this way and that, singing, and smiling. Then she got a case of the hic-ups and the techs were laughing still as they told me, she would hic-up and then look around as if, wondering where that came from. The girls said that was the most entertainment they had in a long time. Finally after a few hours Quinn called in reinforcements. I woke up at 3:30 to “mom,mom,mom,mom,mom” So I crawled in with her. She is a smart cookie, and she knew where she was, and also I believe very smart in knowing that blood draws always happen in the morning, so she was doing everything she could think of to keep herself awake. I have not seen her moving herself around so much. Now when I say that, it’s not huge amounts, but it’s getting better and better. She was so funny, as we were now watching her, me next to her and the techs on the camera. Finally at 4:00 the gal from lab came and poked her, and she totally gave me the “I knew it, and that is why I stayed awake look.” Wow, can she get a message across loud and clear now. Well, then we unhooked everything and got ready to go home. Here Quinn did a great job staying awake from 1ish, to 4ish, and then as soon as she was in her car seat going home, she was sound asleep within minutes. Once we got home, she stayed asleep until 9:40, which worked out well because we had therapy at 10:00.

O.K., therapies have been wonderful lately. Our LPS therapist Jen hooked us up with a vest that Quinn can wear for short amounts of time, I guess I would say it’s kind of like a girdle, it will help her hold her core body up easier so she can focus on her head control. We used one like it at Handprints, and she did well there, so we will see how she does with it at home. We also got arm splints to wear when she practices crawling, and wow, they were working great, she was doing great putting pressure on her arms and her legs were going like crazy, half of her was totally crawling. We just need to keep working on those arms now.

Well, she is getting better and better with her arms, because when she was with Staci and Diane, she was moving cards around, and she did three sign language motions. Go, Stop, and More. You can see how hard she works and how hard she wants to do what is asked of her. It makes me so proud of her and so lucky to see her improving. We also talked about how her head control is getting better. We still have a ways to go, but at the same time she has improved so much!

Whew, this has gotten long! We have just been so busy! Wow! I have to admit it’s much more fun writing about her doing well, instead of struggling. I am so thankful for her being healthy because these last few months were trying on many of us.

Blessings!
Susan

4-25-10

Here is one of my favorite outfits on her, and she was in such a good mood, laughing and jabbering and moving around, I had to get a picture of that.

Here are pictures from right before Amanda’s wedding. I think Quinn was extra cute in her fluffy yellow skirt. She was not all that excited to take a picture with mom, look at her pushing away from me.

After we got home she was out like a light, so we finished working on her new big girl bed. Thanks to Lynette, we got it for free. Thanks to John for stripping it, and then I finished it up. I guess I should say, John finished it the first time, but I changed my mind on the color, and so John stripped it again, and then started staining, and I finished it the second time. Thanks Daddy for helping with my bed! Hey, I can change my mind right? Oh talking about Quinn and daddy. I know I recently mentioned how excited I was to have Quinn calling out for me. Well, dad regained his title. The last few nights, as soon as he gets home and scoops her into his arms she melts, and smiles and they sing together. It really is so wonderful that it almost wants to make you throw up, but not quite. They are amazing together.

What a good weekend we have had. We went to Amanda and Shea’s wedding, and Quinn was pretty good. We stayed close to the back incase Quinn wanted to start yelling. I’m starting to think she likes the echo of her voice in big places like church. It’s funny, even in church today I’m shushing her over and over, and here most of the time we are trying with all our might to get her to talk. In church she sings and sings, and past that she is pretty quiet. Hmmm, makes me wonder. She did great at the wedding, even though she loved the stained glass, and when I moved her to my other hip, she fussed and complained, and we got a few glances, but once she could see the windows again she was just fine.

Past that we have been working on Quinn’s new bed. We are almost done with it, which is good, they are delivering mattresses Tuesday. We will have two beds in her room, I’m just not comfortable with her by herself, so if she is having a hard night, one of us can be with her. While other nights she does just great. So that is good. Past that our sleep study is this Wednesday night. We will see what gets figured out there.