Saturday was Fun day!

Isaiah, Denali, Dad, and Grandma and Grandpa

came to the hospital.

I got to go for a walk and play with Isaiah and Denali,

and we read books to Quinn.

 I love how Denali could not get into the room fast enough, and is so fine with crawling over and under cords that are attached to Quinn.  They don't phase her one bit.  Isaiah always has to hang back a bit and check things out but after just a couple minutes, he is right in there too!  Oh I love how my kids love each other!  It makes my heart so full!

Then Sunday we got to come home!

Yeah!  Home is wonderful!

Better yet, our nurse Selina came and worked, so I got to get some sleep before school started today!

Quinn was not happy this morning when she found out she was not going to school, so in turn grandma has asked her to do a few things, and every answer has been NO!  Oh I love her determination!

It's Friday, and we are still at the hospital.  Wednesday we thought we would be going home, but Quinn did not want to get off the oxygen.  Thursday she freaked me out, and kept the hospital staff on their toes, as she could not get her breathing under control for a bit.  Then she was exhausted for the rest of the day.  Finally last night she slept great, which in turn means I also slept great.  This mooring we are going on day 5 in here, and we tried to get onto room air, but she is not quite ready for that yet, but we are going in the right direction!
We caught a case of the giggles this morning and that was so good to see again!

 A pretty big change from a picture from yesterday!  Her color looks better and her mood is so much better.

 We have gotten lots of well wishes and prayers and that is helping so much!

We played bingo yesterday, we did not win, but had fun!  Not many bingo cards have trachs, doctors, nurses, and butterfly needles on it.  That was fun!

We also see that Denali has stepped into the chef role at the house, while we are hanging here in the hospital.  She is much fancier then I am, so we might have to have her keep up the cooking!

So please keep the prayers coming!  

Blessings!

Susan

Well after Quinn hung out with the grandma's last week, we ended up checking into Children's Hospital on Monday.

We packed up a few bags and pillows, because this place is great, but they have yucky pillows!

We drove up here and had to throw some pennies into the fountain, as that is a thing that dad and Quinn always have done, so we have to keep up the tradition.

She had lots of tests, and everything came back good.

So basically it's a virus and she is exhausted.

So she is getting treatments where they vibrate her chest to break stuff up, and

they are giving her oxygen.

We are spending lots of time loving up on each other too.

 As life goes on, Isaiah had a dance performance that dad and Denali took him to.

We have been sending pictures back and forth and video chatting, so that's been nice.

 So now we are going on day three, we are now getting giggles, and lots of singing, so we are feeling better!  Once she gets back to room air and back to tolerating her regular feeding, we will get to go home.

 So as I have always said, we love Children's Hospital, but we are getting tired of it, and are getting closer and closer to going home!

 Thanks to dad and grandma and grandpa for working hard to keep things running at home!  

Blessings to you and we appreciate your prayers!  They are working and we will be home soon!

We sure are thankful for all our grandparents.

Grandpa Harold read books to Quinn the first day she was sick,

Grandma Martha helped her stay calm.

Grandma Vick came down and read and cared for her.

Grandpa Steve gave Grandma tips! :)

We are so blessed to have Grandparents who care and help us!

I don't know what we would do without them.

 Here is hoping Quinn feels better soon!

 Denali loves to hear Grandma stories too!

 We got our Easter Seals brochure, and guess who is on the front cover?

Quinn did love that horse.

Finally, it's so good to see folks focusing on everyone 

and sharing how we all deserve accessibility!

A few more pictures of playing instruments!

 Quinn played the drum at school and loved it!  This is from a few days ago.

Right now she is sick at home, so prayers for my little peanut, to feel better!

Thank you to the grandma's taking care of her so I can work!

We went to the Lincoln Symphony for Valentines Day!

The kids tried out instruments!

 Denali loved the violin, and it planning on starting it next year.

Isaiah plays the cello now, and so he had fun trying out the violin too.

 Quinn loved the violin, and I love how we continue to teach folks around us how disabilities are not going to stand in our way as much as possible.  (just look at that knowledge we are sharing with the two kids in the background) :)  So we got right in there and tried a few things out as well.  The helpers did great and worked with us with such lovely excitement!  Granted, I don't think it is going to work for her to play the violin next year, but I'm hoping she has a teacher who can let her ring a bell or play the hand drums for a small part of a song, to include her.  We will see how much we can educate and how flexible and creative we can all be next year.

 The girls thought the flute was fun.  Isaiah thought he wanted to play the flute, until he tried yesterday, now he wants to play the trombone instead.

 So we had a fun wonderful day, and loved loving on each other!

Valentines Day is all about hearts and cards and parties, as my kids know, they were all three so excited to take their cards and containers to school today to share in the celebrations.

We are also going to parties and celebrations this weekend, but yesterday we focused on Quinn's heart, and it seems fitting to share the news on Valentines Day, since it's all about hearts.

 Once a year, (yes only once a year, because Quinn has been doing so great) we check in with our heart doctor.  Quinn's heart is in her body backwards, basically and at about 5 months old she had her heart banded, and that has worked so well!

 Every year our doctor says, wow, I'm not sure how she continues to do so well, but once again, she is doing amazing!  We know that God has a plan for us, and he is good.  

This picture is a picture of the outside and inside of Quinn.  Can't beat that.

 As we are focused on the machines and what not, we also have to focus on the cute hair do that Selina gave Quinn this morning!  We are blessed in so many ways

 After a good film of Quinn's heart, she needed a fist bump!  Way to go!

 After good results we also have to have bubbles to celebrate!

 Then we have another test to test the rhythms of her heart, once again, God is good and we have great rhythm!

 In case you have not seen her button, this is how she does most of her eating and meds, we are thankful for that little button!

 Phew, it's exhausting getting so many tests done!

 Sometimes I want to worry about things, Quinn's heart, Isaiah's grades, Denali's messy room.

Then I try instead to put it into God's hands!

We still have to work hard, but God keeps me sane and for that I am so grateful!

 She was a great patient!  Granted she does not like to talk to the doctor, and once again did not do so, she did tell the nurse good bye and answered yes.  One of these times she will talk to Dr. Martin!  

Buttercup could not get up to Quinn fast enough when we got home to congratulate her on her good results!  Those two are getting closer and closer!

So a happy heart day to all of you!

We are so thankful for this little girls heart, and band on her heart!

Blessing!

Susan