Thursday, March 28, 2019

Our 6th grade band concert with a few other schools happened.

 Both girls are in band.  
 Grandma and grandpa were there to cheer them on.
 We love how things can be adapted to make things work.
 Quinn is loving percussion.
 Her team.

Denali is loving her clarinet.

Tuesday, March 26, 2019

We had a busy dance weekend.
Denali with her troop.

 The exhausted parents,

 Hair and makeup are part of the day







 Then 6th grade did Genus hour, and Denali and Quinn did theirs together on Tea.  
They did a great job!


 Friends after their presentations









Thursday, March 21, 2019

We had our CDC (children's developmental clinic) appointment today at Children's in Omaha.  This day is where we go sit in a room and have over 10 folks come see us.  We see Neurology, bone doctors, therapists, and specialist after specialist.

Both Denali and Isaiah wanted to come to support Quinn, so yes they do get out of school, but they learn so much on this day, and do a great job asking questions and answering questions.

We share what is going well, and we are so thankful for so much going well, but also talk about what things we see that need to be addressed.  I think it went well, but it is emotionally exhausting!  Afterwards we did blood tests, and as Isaiah said, they wanted a lot of Quinn's blood, and she screamed bloody murder the entire time they were doing her blood draw.  Then we also did some x-rays.  So much gets done on these days including switching some of her meds around and getting ideas for things that could help her.

Then we get a ton of papers on what happened during the visit.  So I go over the paperwork to get her new medications listed and changed to have everything up to date, and then I see the notes, and I still have a hard time every time I read notes like this on her.  I am realistic and understand she has a lot going on in her life.  However reading words like lack of normal this or that, slow, unable, chronic... these words are part of her life, and I understand that, but I want to add in so many more words.  Patient, kind, funny, loving, smart, hard worker.  I know the people coming to see us give the facts, but I want to share facts too.  

Her weight is now 59 lbs and her height is 4'2", and that has not changed very much in the last year, so we are keeping and eye on that too.

Here is the list of folks we see and this paper was full of information by the time the day was over.

We would have moments like this where we would relax and enjoy some technology time.

and other times where we would be poked and questioned about this and that.
There are many caring people who we chatted with yesterday.  Denali is still back there behind the doctor.

After all was said and done, we have a tradition of doing something fun after an exhausting morning, so to the zoo we went.
Denali and Isaiah took Quinn and off they went.






 That peacock, came over to check Quinn out again this time.  So interested!
Denali just jumps in and helps Quinn with anything and everything.
Isaiah, holds back a bit, but loves her so.  He was so good answering questions, and when we met up with dad at the end of the day, he knew his stuff and could tell him about things I did not think he would remember.  He also held her hand all the way home when she was upset and exhausted from the day, reminding her that he was there for her, and we would be home soon.  
I say it often, but God blessed us with a family that does love each other oh so very much.

Tuesday, March 19, 2019

Quinn's spring break, we spent some time cuddling before Denali left and as soon as she got back they were cuddling again.  Love how these two love each other.

 Grandma Vicki and Grandpa Steve were here to watch Quinn part of the time.

 Quinn said as long as she got to spend some time with Chrissy she would be fine staying home.  So that is what they did.  They practiced on her drum.
 They did standing, and reading and cuddling!
 Then grandma and grandpa got to stay with us a couple extra days, because Nebraska flooded, and they could not get home.  Their town had so much damage, but their house and land were ok.
Then we started a new dance routine with some friends.
We are so thankful for this!

Monday, March 18, 2019

I feel like I am always walking a strange balancing act.  I want to keep things  as fair as possible for all my kids.  I talk about how fair is not even, but giving them all what they need.

They are all in dance, and two of them are in more dance classes, but Quinn has therapy, and she loves it, so it evens out.

I want them all to feel they get what they need and no one is getting more or less than anyone else.  That gets to be hard sometimes, and so I am always praying that I can give them good lives with many experiences.

So Quinn can not fly, due to her heart condition.  She understands that and accepts it.  So I told Isaiah and Denali that I will get them on a plane before they get out of middle school.  We were thinking of driving down to Memphis to spend time with family over break, but that did not work out, so I found a good deal on plane flights to Vegas.  John could not get off of work, but was ok with us going.  Quinn said we could go if she could have one fun day with Grandma and one fun day with Chrissy.  I love how accepting she is.  So some of us were Vegas bound.


In the Omaha airport.

In the plane we were nervous!






 All over Vegas.



out of the hundreds of shirts they could get, they both got the same one! :)



 Watching the knights and eating with our hands.


Denali was loud and cheered on and did a great job being heard!

 We got to see the cupcake ATM


 we saw the secret garden with lions and tigers and dolphins.



 also saw flamingo's across the street.


 Saw lots of flowers and palm trees, and fountains.



 We got silly and loved on each other.
 Isaiah thought it was pretty cool that we saw the porta potties getting lifted up over the top of one of the buildings.








 
We walked over 7 miles each day, so when we complained, I needed them to give me good grouchy faces.





 tried out different soda's from around the world.
Some were good and some were not!

 Went to a restaurant where the waiters were silly and a little bit naughty!









 Had to try out lots of different deserts at the buffet.



 We tried to find the beauty all around us.
 And the plane flight home, the kids were now pro's and ready to go.

So much fun!  But good to get back home too.
One more thing crossed off our bucket list!

Will blog about Quinn's fun time next.