Thursday, November 29, 2012

Quinn with her Dynavox.  (it's the the computer in front of her, she uses her eyes to click on what she wants to tell us)

I love Quinn's dynavox!  (Her chair is still not on my love list)  Her Dynavox however is!  I love it!  (Actually I do love parts of her chair, like how she sit's in it so well, so she can use her dynavox, I do love that)  I love it because she can really tell us what she wants!

Today at school she kept telling her nurse she wanted PBS and her nurse did not know what that ment, then they went to computer class and she got to go into PBS kids, and she loved it.

Then when she got home she told me hello, then asked me to take off her seatbelt, and lower her chair, and move the dynavox and get her out!

How amazing is that!  Technology is giving us a great way to experience life!  Oh how I love the majority of technology right now!  

Blessings!  
Susan

Tuesday, November 27, 2012


video
Wow, wow, wow, check out Quinn walking at therapy with Suzanne!  She took over 100 steps at therapy.  We won't mention how she did not talk to Suzanne for the first 10 or so minutes of therapy, but when she got walking, she did great!  Suzanne said they could walk to the sticker box, and when they got there, Quinn reached right into the box, and that is a big deal too!  Hooray for a great day!
Susan

Sunday, November 25, 2012

Yeah it is official, Quinn does like the tree, as she was in her walker, twice she danced over to the tree and stopped right in front of it, to check it out!  I say dance, because she does not really walk, her one foot is the stronger foot, so she kind of goes at a sideways gate, but she is moving, and I will be very thankful for that!  I just need to get her into her walker more often.  It seems like time gets away from me, and I can't get everything done!  Uggg, if only my personal assistant would show up and help me out! :)
Oh the other fun thing, was that when she was in her walker, she sounded a bit gunky, so I got the suction machine out and sucked out her secretions, I know, kind of gross, but it's the way it is, well, the fun part is that she totally let me do it for a few seconds, then when she was done, she moved away from me!  Wow, that had to feel good for her to do that.  Normally she is stuck and can't move away, and this time, she got to!  Yeah for the freedom of being able to move!
It is finally Christmas season!
I have to say that after being in the apartment the last two Christmas's, I have looked so forward to decorating our house!  I'm going to break you in slowly, as we have quite a bit of Christmas Cheer inside.  So on Thanksgiving we got 4 kids to hang out with us for the weekend.  The two older kids played with John in the basement, but the two younger ones, Quinn, and I got to decorate, and it was so much fun!
I love this set up, this was Quinn's picture from last year, and I love it.  It is also her ornament from last year with her fingerprints, and we do believe, so this is the perfect start for us.

A bit of fun with the Grinch.

We did get to see Santa already, and we messed and messed with poses, Santa and the elves were going to get a good picture, and we finally settled on the two of them looking at each other.  Quinn was not sure about Santa, but as always Santa is amazing!
Then my Thanksgiving project was reworking this cd shelf, I wish I would have taken a before picture, it was the basic black and light wood look.  I actually had it in the goodwill pile, then I changed my mind, and did some painting and work, and I think it turned out crazy cute!  I'll add pictures of the tree later, as I don't want to get this to long.

I do however have to add our fun stuff on the shelf.  It looks so cute.  Oh I was hoping Quinn would be a little more excited about all the Christmas stuff, but I'm hoping she loves is and is just not showing it as much.  Either way, we have had fun with the long weekend, playing with all 5 of our kids for the weekend, but today we are back to just Quinn and I'm looking forward to some good Christmas books and I need some good cuddle time.  I also am writing the big bad letter to her wheelchair company today, so prayers that they are willing to work with us to get this chair into good working condition or help us get into something that does work better, and that I can write the letter that will affect them and help them see how important this is to us.
Blessings,
Susan

Thursday, November 22, 2012

This card was shared with us, from a great friend, and I had to share it.  We are so Grateful!
Happy Thanksgiving!

Here are a few things Quinn brought home from school.  

Last Tuesday was Grandparents day at Maxey, and Quinn had lots of fun with Grandma Vicki there.  It sounds like it was packed and lots of fun!



Do you know what is missing from this picture?
Quinn's power chair!  We love so many things about her chair, as she drove awesome for Suzanne at therapy on Tuesday, but when it does not turn on, it tends to cause problems.  To top it off, Grandma, Quinn, and I were smack dab in the middle of the mall when it turned off and would not turn back on, so we had to put it into manual and push it back to the van, and let me simply say that it is heavy!  We have been told that normally there are not so many issues with it, so we got it dropped back off to get it fixed, and now I am getting all my thoughts in order to call the manufacture and have a good long talk about how these issues can not keep happening and what can they do about it, so we could use some prayers that they help us get it fixed!


Finally, after all the work we have been doing, we are exhausted!
So here is hoping for a restful holiday season!
Blessings!
Susan




Monday, November 19, 2012


 Finally!  After waiting for the heat not to be so hot, we finally got our sprinklers and grass!  How beautiful!  I also got my training on the sprinklers, as I have never had sprinklers or super nice grass like this for that matter!  How thankful I am!
This weekend we celebrated Thanksgiving!  Granted the picture looks a bit more like Christmas, but Grandma Vicki wanted a picture for her cards, and this is the first time that all the grandkids have been together in years, so she got her picture!  
Finally we got Quinn's fancy chair into their house by using Chrissy's awesome ramp, thanks Chrissy!
So she could drive around and use her dynovox to talk with, but instead, guess where she spent the majority of her time?


Yup, right there with dad!


Blessings, and Happy Thanksgiving!
We are so very thankful for our last year,
Quinn was healthier then ever,
John continues to take good care of himself,
I am so thankful for a job that I love,
and a daughter who continues to inspire me and love me.
And to all our friends and family, we are blessed so!
Susan

Wednesday, November 14, 2012

Well, another day another post.  I have to say today I was worn out and tired, and a bit on the grouch side, and that does not happen very often, but Wheelchair dance class is all I needed to get myself in a much better mood!  Check out all these adults, mostly therapists, dancing with these beautiful dancers.  That is what I needed to get out of my yucky mood, and Quinn loved it.  All of us parents sat on the sidelines cheering them on, and talking about how amazing of a program this is!  Thanks to all the helpers and thanks Suzanne for getting it up and running!  What a wonderful night!

Now for a bit of freeze dancing!  If this does not make you smile!  It's pretty amazing!  I'm so glad Quinn gets to be a part of this.  Anyone that wants to see an amazing performance, it will be on December 16th at 3:00 at Madonna ProActive!
video

Saturday, November 10, 2012

Well, things are finally getting back to where they should be.  Wednesday Quinn went back to school, finally!  Well, she did not make it through the day, as I got a call in the afternoon, to pick her up, but she did make it through Thursday and Friday.  This weekend we had a new foster care kiddo, and he is wonderful.  Quinn and I were going to go out to the playground just behind our backyard, but it was to windy, but it sure was fun to watch out the window and see John and our kiddo out there playing.  Both of them are in this picture, but we can't publish who we have, due to safety and respecting their privacy, but since you can't really even see the kiddo, I'm going to say it's ok.  Watching the two of them playing all over out there was sure fun for Quinn and I.  I tell you what, God had a plan having us build right here, and having the priests give us the ok to play with anyone we have here on the playground is sure nice.

The other fun thing that happened this morning was that Quinn figured out how to support herself better when she is on the potty.  Sometimes when she is going potty, she has her head slump forward as she is going potty, and it's hard to concentrate on two things at once, but today she grabbed onto her fancy potty chair, and held herself up very nicely.  This is big for two reasons.  One, she looks so good sitting up in a great position, and two, she does not tend to reach out and grab things on her own, and this time she did!  Oh that is such a big deal to me!  You can also see her other hand giving us the potty sign, as she was still getting ready to go potty!  OK, enough about going potty, I have to say that it is 9:30 and both of the kiddo's in our house are sound asleep and have been since around 8:00, so I got to delve into one of my favorite past times.  A cheesy Hallmark pre-Christmas movie.  Better yet, it was taped from last night, so I could fast forward through the commercials.  Oh, what a great day, granted we all have colds, but past that, we had a great morning watching a few cartoons, we read lots of books today.  We watched a crazy football game, ate kid food that was lots of fun.  Quinn got to teach a new friend about how to play with her, and he was so receptive, and it was truly a lovely day!  A Simple, caring, loving day.
Blessings,
Susan

Tuesday, November 6, 2012

Well, Quinn is doing better.  In fact she has been feeling better since Monday morning, and has honestly slept pretty much the entire time!  So we are making up all the lost sleep from the weekend, and we are going to try to get back to school tomorrow!  So a few prayers and good vibes would be great!

Monday, November 5, 2012


Well, what a difference a couple of days make, after such a great week, things have changed.  Thursday night, Quinn did not want to walk in her walker at all, and I thought, that was a little bit different.


Friday started off on a great note, I woke up ready to go teach my wonderful students about how to be their most creative selves and create amazing artwork.  I even left the house early enough to go work out, so I was feeling pretty good as I got into school.  Only to get a call from our wonderful night nurse, that Quinn has a temp and can’t go to school.  I thought she seemed warm when I kissed her in the morning, but hoped it was just to many covers.

So I was lucky enough to get a sub that I love and figured out lesson plans, knowing a few of my classes would love the change in plans, while other classes were going to be upset not to be using clay, as we had planned to do.  I got things figured out and was back at home by 9:00 in the morning to let Melissa go home to get some sleep, after taking such good care of Quinn over night.  I had to get sub plans ready, as well as call bussing to cancel her bus, call school to let them know she was sick, and call her nurse to let her know Quinn would not be at school as well.  

I think this is the first time since Quinn had her episode at 5 months, in which she coded and had a lack of oxygen to her brain, which lead to her having to be in a wheelchair, and not be able to control her body the way she could before, but this is the first time in 5 years that I have not taken a day off of work for the first 8 weeks of school to take care of her.  Granted she was sick a few days, and Grandma Martha took care of her a couple days this year.  This was kind of surreal that I made it through 8 weeks of teaching before I had to take off, and made me think back to days where we spent so much time in the hospital.  As we relaxed and listened to music today, she rested, and whined when her Tylenol was about out of her system. and giggled when she heard Chrissy walking in the door with Pedilight.  I forget how easy it is for me to take Quinn’s health for granted, and how thankful I am she has been doing so well lately.   So our day started out with watching some T.V., and trying to break her high temp. 

When she was finally trying to rest, I decided to read a book, which was suggested to me, by a friend.  I knew the main character was a girl in a wheelchair, and was told the character made this friend think of Quinn most of the way through the book.  Well, I’ve had this book on loan from our library for way to long, but I knew I had to be in the right mood to read it, as I knew it would probably bring back memories of our past, and fears I have for the future when it comes to Quinn and her life.  So I had to be in the right mood to read this book. 

Well today was the day, and I bawled and laughed out loud through out this book and I really think the author gave a great understanding of what this character and her family go though.  I had to stop and take care of Quinn here and there, as well as love on her and such, but when she was resting, I read, and cried, and laughed, all the way through the book.  Well, the book is called Out of my Mind, by Sharon M Draper, and it is geared toward teens and preteens, so it’s an easy read, and I saw my family in this book so much.  I saw characters that portray friends, and family.  I saw moments that I can relate to on such a personal level.  The character in the book is older, she is in the 5th grade, but she talks about things in ways that really made me think this author really did her homework and really understands the situations we have, when we have children with disabilities.  Talking about how getting ready in the morning is not laying out clothing, and making toast as you run out the door.  It is unplugging machines that monitored heart rates over night, wiping drool off of cute cheeks, and listening to the most beautiful babbling, as you carefully pick up your daughter who is giving you the potty sign, to carry her to her special potty chair, to see if she can get her body to work with her mind, knowing she needs to go to the bathroom.  Placing her into her shower chair to wash her, and have her giggle as you wash her hair, and complain when you brush out the knots.  Get her dressed, after giving her all her daily meds, that you got ready the night before, knowing you would not have that kind of time in the morning to get everything done.  Getting suction machines ready and notes posted for the school nurse letting them know what kind of night Quinn had.  Watching a few jerky movements, as she wakes up in the morning, and hoping it does not lead into a seizure.  Getting braces put on her feet, and trying to make sure she does not drool all over your shirt, when all you really want to do is cuddle her up and love on her for a few minutes before you take off to get to work.  I loved how the author did such a good job showing the real side of someone who is handicap, while still showing how amazing this child is.  Showing how much her parents loved her, while still showing how they struggled with caring for her, sharing how amazing she was, and how good they have it, while being realistic about their life and the challenges they face.  It captured my fears about how I want her to have good friends as she gets older, but I know that might be more difficult for her, and that is hard to accept.  It does makes me so grateful to hear how Quinn’s class has kids that love her and want to understand her, and I hope and pray that continues!  Again, I'm so thankful for the positive role models in her classroom, who continue to show the kids that Quinn is an amazing kid and it's wonderful to be friends with her.

Oh, I strongly suggest to read this book, it’s a quick read, and can really explain how it feels to have a daughter like I have.  Granted the story line is geared toward preteens, but the overall story does show a pretty good view of life for someone like Quinn.  She is amazing, wonderful, and so sweet, and kind.  She is so easy to take care of in so many ways, as she is well behaved, and easy to have around, while in other ways, she does take a lot of extra work. 

I know Quinn has made me a better teacher, a better advocate, a better mom, and a better person.  She helps me slow down and be thankful for the small things.  She brings out the good in others, as we have folks holding doors open for us, and sharing stories about someone they know that Quinn reminds them of.  We see people work so hard to help Quinn be her best, and we are so thankful for that!  At the same time, life is not always easy, but I don’t know of anyone who has an easy life, and with every battle, we become stronger and learn life lessons that make us more apt to handle the next issue we get. 



 Phew, I am getting off my soap box, but this book is wonderful!  I am grateful for it to share a different view point on life.  To top it off it is an award winning book, that hundreds of kids will be reading this year!

Well, back to Quinn.  We are still home today, I think since Friday morning, the two of us, have maybe slept 15 hours total.  I know Quinn is exhausted, but every time she is almost asleep she starts coughing and wakes up.  Finally last night she slept in my arms, and it was so good to see her finally sleep.  As of midnight last night, she has not had a temp either, so I hope that continues.  Now we just need to get over this cough.  I am praying she feels better soon, but it has been nice to cuddle up with her, and feel the love, or see her melt into her dad and rest comfortably.  In all the frustrations we all have, we can choose to focus on the negative, or find the positive, and not that it is easy, but having the time to cuddle up with Quinn over the last few days has been wonderful, granted I'm sleep deprived, and she is sick, but getting a few good giggles and great hugs make it worth it.  Having time to read a great book was also nice.  Seeing her finally sleeping peacefully is also pretty wonderful.



Thursday, November 1, 2012

What a fun week we have had.

We started off, actually last week, by saying "See you Later" to Grandpa and Grandma, who went South for the winter!  We will miss them, and hope they have lots of fun staying warm down there.


Then Tuesday we went to see Suzanne at therapy.  Quinn practiced driving and with just a bit of pressure on her arm, she can do great!  She turned and drove up two curb cuts all by herself!  (We won't talk about how last week she drove into therapy, and was excited to see her friend Matthew, and tried to drive right into him.  We had therapists coming from everywhere trying to get her to stop, thankfully Matthew was not hurt!)  So as Quinn was driving, Suzanne talked to her about how she can talk to me on the way to therapy, or the therapists when we get there using her dynovox, about what she wants to do, since they added that page onto her dynovox.

So Wednesday, Halloween Day, after she got home from school, we got loaded up for therapy, and guess what she did?  She went directly to her dynovox therapy page, and talked about how she wanted to stand up, stretch, and roll down the hill!  Oh, that is amazing.

To put it into perspective, we got her report card back today as well, and it was ok.  She gets her own special report card, and it was mixed.  The teachers and therapists are seeing that Quinn is super smart and can tell them things and write her name, while at the same time, they can't get her to show them other things, that she clearly knows.  Over all, these are new people in her life, and they are all on a learning curve.  I can't say enough good things about them all, but it's still not fun to see that she is not showing them all of what she can do, while at the same time, she has always been selective in who she shares her thoughts and actions with.


So with her dynovox, some days she gets on there and types random letters and I don't know if she is just playing or what, while other times she gets on there and really has a conversation with us.  So having her remember what Suzanne said the day before, and go to her therapy page, and tell me what she wanted to do was amazing, and just what I needed after reading her report card!  To top it off she told a few of the folks at Handprints what she wanted to do too, so I have back up that she did it!  Oh, how I love her!  So we were sure to do standing, stretching, and rolling down the hill!

Then it was time to trick or treat, so we made a quick clothing change in the Handprints parking lot, picked up dad, and (I'm sad to say) went around and met a few of our neighbors.  I have been wanting to get out to meet them sooner, but time has gotten away from me.  Thankfully, I have that done now, and we have some great neighbors!  Then we went out and hit a few friends houses.  By 6:45 Quinn was exhausted, and so we had to call it a night!  For a 5 year old, that is one busy day!  Actually I think I was as tired as she was, as I was sound asleep by 8:45, so I guess I need to say it was a long day for both of us.  You can tell, we have a tired little clown in the picture, but past that, it sure is good to have wonderful friends!
Blessings to you all!
Susan