Thursday, June 7, 2018

3 Month Check Up

We got to take a trip to Seattle this past week for Kinley's 3 month post-op check up.  We got into town the night before, so we had to stop by Frankie and Jo's to make Uncle Jason jealous.   Boy was that some good vegan ice cream!

The next morning, we got to the Children's hospital for another MRI.  This is number 3 for Kinley since November. Seattle has this process down pat. We checked into the hospital at 7:45 and by 8:20 Kinley was sound asleep ready for them to place her IV.  The MRI took about an hour and then we were able to see her and help her wake up. 

A few hours later we had our appointment with the neurosurgeon.  The news we received was not what we expected.  Kinley's cerebellum has shrunk back up into her skull, so that is good.  It does not look to be impeding the flow of the CSF any more.  However, her syrinx is still there, and just as big.  This is so discouraging since we were hoping that it had completely collapsed.  Kinley has a huge syrinx, that goes along her whole spine.  So we really needed it to start to shrink.  Dr. E was upset it had not changed.  He said its possible it still just needs more time.  Maybe a year or even longer. 
So, not the news we wanted to hear.  After all Kinley has been through, we wanted to be able to tell her the surgery did amazing things, and that she was going to be all good.  But, now I sit here wondering if my baby is doomed for a life being in and out of the hospital.  Is she going to develop pain and never be able to function normally?  Will she be able to go to college, and get a degree in whatever her heart desires?  So many unknowns for her future. 
As we are still processing the fact that we got crappy news, we came home and got to celebrate Kinley finishing up kindergarten.  Despite all she has gone through this, she has learned so much in school.  She is able to read like a champ, and she has made huge strides in math.  And she has made the cutest, sweetest little friendships. 

We will be following up with Dr. E in 6 months to do another MRI and hopefully we will see huge improvements then.  And the best part is we will be able to get all of it done in Missoula!  So we don't have to travel all the way to Seattle for our check ups! 
Thank you for loving our baby girl and for always praying for her and sending good vibes her way.  She needs them so badly.  We all do!     

Friday, March 16, 2018

Back to School

Kinley has been back to school for 2 weeks now.  It amazes me how well she is doing.  She gets tired earlier at night, and is bear to wake up in the morning.  But, she is doing so good sticking out all day at school.  On the first day back to school, her sweet teacher had planned a surprise welcome back party with balloons all over the classroom and cupcakes.  It was so sweet to hear Kinley talk about how special that was.  Kinley is not able to participate in PE or recess.  So during those times she has to stay in and play on the ipads or color.  I think this down time is helping her survive the long days.  She is also able to have a friend stay in with her, so that has helped her not feel too left out.  Her school has been so amazing working with us in accommodating her needs. 
I am so thankful to be past the surgery and the hospital stay.  Handing over your baby for a huge surgery is so incredibly hard and stressful.  It is hard to push out the "what if" thoughts.  When Kinley was throwing up after surgery I had a moment of complete freaking out in my mind.  Her face was so swollen from the surgery and her eyes would not focus on anything.  I got panicky thinking what if the surgery had gone bad and they had snipped the wrong things.  What if my baby never walked again or what if she forgets who her family is?  The panic was real!  Thankfully after some medications had worn off, I could see sweet, feisty Kinley in there.  That first and second night, she would be crying out in pain saying "I told you I didn't want to have this stupid surgery".  That's when I knew she was going to be able to get through it all.  Nothing can stop that stubborn kid!
We have been blessed by so many people sending gifts to Kinley (including people we have never met!), praying for us, and sending good vibes our way.  Kinley is slowly working on thank you cards, and will hopefully have those out in the not too far future.
Not too long after Kinley was diagnosed with Chiari Malformation, I ended up coming down with impressive headaches and neck weakness.  I have since come down with quite a few symptoms of Chiari and continue to have neck pain and headaches daily.  Because Chiari can run in families, I am going to go ahead and get an MRI to rule it out.  My doctor is pretty sure it is just a tension headache that wont go away since we have been under so much stress.  Hopefully he is right and these headaches just go away on their own.  This mama just wants to focus of getting her baby healthy!     

Wednesday, February 28, 2018


Its now been over a week since Kinley had surgery, and its hard to tell she had anything done!  This girl is a rock star!  Besides having a stiff neck and an impressive scar on the back of her head, she looks like any other kid.  I cant believe that a week ago she could not even sit up for a few seconds.  The poor baby was in constant pain.  And now she pushes me away when I ask her if anything hurts.  "I'm healing fine mom!"  That's the response I get now.
The hard part about it all is that Kinley may feel great, but we cant let her do the things she is used to doing.  She still needs to stay calm.  No running, jumping, and just plain being a kid.  Its hard!!  This is the girl who comes running into the living room, sees the couch in front of her, and does a back flip to get herself on it.  And then continues to stand on her head while watching TV.  So I'm a little scared to take my eyes off of her.  No telling what she would do when I'm not looking!
I think Kinley will be all ready to go back to school next week.  She misses her friends dearly and is sad every day when Carter leaves for school. 
We are so blessed to have Kinley healing up so well.  We go back to Seattle in 3 months.  At that time they will do another MRI.  Our hope is that this surgery has allowed the Syrinx in her spine to start to shrink.  Which would hopefully result in her spine going back to the midline.  And then we can eventually get rid of the brace she wears.  Hopefully things will just keep getting better and better for sweet Kinley.

Tuesday, February 27, 2018


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.  


 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!

Wednesday, February 21, 2018


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!