Home

The drive home was longer then we had hoped.  We got stopped on the pass for 2 hours due to horrible weather.  Despite the drive taking much longer then we anticipated, Kinley did amazing.  She was able to sleep much of the way.  And thankfully she did not have too much discomfort sitting up in the car seat.  

So excited to see all the cards from her friends at school!!!  So sweet!!!  Thank you!!!

Carter sat down next to her and read every card to her!!  Talk about melting my heart!

Reading his sister a good night story.  We moved her bed into our room temporally so it would be easier to give her medications all night long.  And she is also still unsteady on her feet, so I don't trust her to make it to the bathroom on her own.  

Snuggling with Grandpa!!!

We made it home to a super clean house, kids taken care of, and dinner cooking.  I could not have done this with out my parents taking care of the stuff at home.  Thank you , thank you, thank you!!! XOXOXO

Discharge Day

Friday we woke up with the goal to be discharged later in the day.  Kinley was having good pain control with oral medications, so as long as she could tolerate the drive home, then we could leave.

Wagon ride around the unit to get used to sitting up!

What laying in bed for days does to your hair!  I was so nervous to tackle this!

Lots of detangler spray and deep breaths went into getting this hair back to normal. 

The final result!  Pretty impressive incision sites!

Wagon ride to the gift shop got Kinley excited to sit up a little more.  

And she is out of there!!!  Whoop Whoop!!!

All tucked in at the Ronald McDonald house.  Leaving the hospital was more exhausting and painful then she had imagined.  

Recovering

 Midnight Chocolate Milkshake

Thursday was filled with feeling slightly better and sleeping lots. We kept encouraging Kinley to sit up a little, but she was not able to tolerate it for longer then a few minutes.   

Dragon Fly Smiles!

 Unicorn Smiles!

 Fairy Lights made by her Grandpa.  They are on every night by her bed so the Fairy's can watch over her as she sleeps.

Late Thursday, we got Kinley up to go to the bathroom right before bed.  While she was up, she said "I think I need to go for a walk".  And she did!  It was pretty amazing to see her just get up and take a few steps down the hall.  She continues to blow us away with her strength!

Pain

Kinley got done with surgery around 7pm last night.  Dr.E said it was amazing how much obstruction there was.  As soon as he shrunk the right tonsil, he said he could see the CSF starting to flow into her brain, instead of pulsating along when he first got in there.  He said he could just see her brain lightening up!  What a relief that the surgery went so well!

After we got Kinley settled into her room, the pain began.  They like to stay away from narcotics with these kids so her bowels continue to move how they should.  If she were to strain for a bowel movement, it could cause the durapatch to leak, which would be a bad situation.  Unfortunately on top of the pain, Kinley started to throw up also.  It was so hard looking into her eyes knowing how incredibly miserable she was.  Needless to say, we kept her nurse busy last night.  Every 10 minutes she was in the room helping us figure out our next game plan.  I am so incredibly thankful for Tim being there to help push ideas and get her the pain control she needed.  At one point Kinley asked me to sleep with her.  I jumped right in that bed, anything to snuggle my little lady!  She would hold my hand and just wimpier.  It was miserable.  

After the sun came up, Kinley was still feeling horrible. She would wrap her arms around my neck and snuggle me cheek to cheek while crying.  We finally were able to get her some morphine on board, which is seeming to help.  

Kinley has had lots of love sent up to her room today.  It is magical seeing her eyes light up for a few moments when they deliver a package with balloons attached.  Sometimes she could not stay awake long enough to open the gift, so she got to enjoy the excitement all over again when she woke!  Thank you all for your love today.  It helped us get through some really rough moments.  Hopefully tonight we will be able to keep her pain under control and she will be able to get some good rest. 

The prayer bear that sat at Carters bed when he had his Mandibular Distraction.  And Fairy Lights my Dad made her.

That smile!

Brightening up our room!

    

Surgery

Sweet Kinley is now back in surgery.  She was originally scheduled for surgery to start at 12:30, but an emergent case came in and bumped her case back.  So it finally started at 2:00pm.  Makes for an extra long day for her since her last meal was last night.
Kinley wanted me to go back to the OR with her.  So I got to gown up and walk with her back there.  Boy was she squeezing my hand!  All day she was telling me she doesn't want surgery.   It was so sad.  When we got back to the room, she started to really panic.  I picked her up and put her on the table, and she refused to let go of my neck.  I was able to keep it together enough to tell her how incredibly much I loved her and would be waiting for her after surgery.  Poor girl was crying right until she fell asleep.  Hopefully I was able to give her some comfort. 
Surgery is supposed to take about 4 hours.  I'm praying she is able to get good rest tonight and we can keep her pain under control.
Thank you for keeping our sweet little girl in your prayers.  She sure is a loved little one!!!

Skipping

With all the nasty germs floating around these days, we decided to pull Kinley out of school a few days before her surgery.  Our hope is that she stays healthy so we can have surgery on Tuesday.  She can not have any cough in any way, for fear that the CSF will leak after surgery.  So, please stay healthy little one!
So today was spent hanging out at home just playing and giggling with one another!  The girls got to enjoy a spa treatment of getting their finger nails and toe nails painted, and then having a big bubble bath!  They then snuck over to the neighbors to build a snowman in the fresh fallen snow.  And we finished off the day by making a chocolate heart cake to celebrate valentines day.
I have a ton of things to do before we leave for Seattle.  However, today I just enjoyed hanging out with my sweet 5 year old.  Kinley is starting to get nervous about surgery, so we spent a lot of time talking about what will happen when we get to the hospital and how she will feel after surgery. 
You got this Kinley.  So many people are out there praying for you.  XOXO     

Our Village

They say it takes a village to raise a child.  Boy are they right.  And boy has our village started to make us feel loved.  The amount of love people have for Kinley is simply amazing.  One of her friends on her last day of gymnastics gave her a panda because she knew she was going to have surgery.  And that same night we came home to beautiful cookies the neighbor had made just special for little Kinley.  The texts I get from everyone encouraging us and saying they are praying for us gives us all so much comfort.  And we feed off of that comfort.  We can do this, because we have so many loved ones standing beside us cheering us on.