Friday, October 19, 2012

Thoughts After the Walk


I have been waiting for the words to come to me, so I would be able to convey what Saturday truly meant to us.  

Walk Goal: $80,000
Krew Total: $82,000 (now over $85,000 and counting!)
Walk Total:$106,000 (and counting)
Number Kadyn's Krew members counted at the walk 187!

A week later,  I am still waiting because there really are no words that will suffice.  Luckily, my mom is much better at putting her feelings on paper.  So, I will share her thoughts after the walk.


We are stunned and amazed by the incredible generosity of family, friends, and this community! We are certain there are no more generous hearts anywhere. 

It is impossible describe the feelings we had when we looked around at the Great Strides Walk last weekend and saw so many people gathered together because they have been touched by the reality of Cystic Fibrosis and the challenges that our granddaughter and so many others face each day. 

It is understandable, perhaps,  why a parent, grandparent, aunt or uncle of a child with CF would be passionate about dedicating time and resources to fighting this disease. They know personally, first hand, its devastation and cruelty because it affects someone they love. 

It is quite another thing to see friends, acquaintances, fellow workers and total strangers join us and rally in support of this cause. It’s difficult to comprehend this kind of generosity and compassion.

We met a pediatric resident during our last stay at KC Children’s Mercy who told us he is considering specializing in pediatric oncology.  When we asked why he would choose to work in a field with such critically ill children, he said it’s because they have such wisdom and have so much to teach us about living. 

Perhaps that’s why children like Kadyn with CF or other life threatening diseases pull on our heartstrings so forcefully and compel us to want to do something to add to their lives.  They have a way of teaching us how appreciate every moment and to live each day like it’s our “best day ever”. They make us grateful for the blessings of our healthy children, but they also make us realize the blessings of those who see the world through the eyes of ones who don’t take their days for granted. 

Thank you for caring enough to help us help them. 
Jack and Betsy

There are not enough thank you's in the world to express our gratitude.  Kadyn's Krew, we love and appreciate you all so much!

Thursday, October 11, 2012

"This is the best day I've ever had!"


No doctors, no tubes, no shots, no IVs, just pampering.  "Kadyn's Day"  and what a day she had! I am still so overwhelmed by it that I find myself crying at the littlest things!

"Kadyn's Day" happened because our dear, sweet friend Somer (hairdresser at W3 Salon) wanted to do something for Kadyn and to raise money for CF.  Kadyn was scheduled for a princess up-do this morning; however, we were not prepared for the royal treatment she received! Walking up to the salon we saw a large banner full of Kadyn's pictures, inside was a princess haven. Pink balloons, Disney music, pink bake sale items, and her throne was decorated completely!   She was showered with pink princess  presents. For once in Kadyn's life she was speechless.  There is no way for us to explain how magical it was and how much we appreciate all of the love and work that went into making this day special for our princess.  She goes through a lot.  For her to have a day of nothing but princess fun is beyond words!  Somer, everyone at W3, and everyone else who took part in "Kadyn's Day", we thank you with every bit of our hearts.

We love you!



















Sunday, October 7, 2012

Home...Recap

When my mom, Koy, Kadyn, I went to KC on Sunday night we expected to be home Monday afternoon.  Apparently, God had other plans...


Kadyn and I were called back to Interventional Radiology at about 9:00 Monday morning.  We walked into a large Operating Room and immediately Kadyn was nervous.  I told the radiologists she had not had pain meds of any kind.  They assured me this was a routine procedure. The track in her stomach was well established, so they would pull the old tube and insert a new one...easy as that! Luckily, I was able to stay with her during the procedure and we watched the screen of her belly as they tried inserting, reinserting, removing, conferring, (repeating) for over an hour.  Kadyn had some choice words for the "radiologies", as she called them.  I just wish I could remember them. Finally, they told me they were going to have to take a CT Scan to figure out why the tube would not go back in.  This is where things started to speed up....

CT scan was taken
Radiologists showed me the scan and explained that there appeared to be a tear in the track and some leakage from her cecum into her system.  He explained that Kadyn would need be admitted, put on IV antibiotics and Infectious Disease would be in to see us. Another lady was there who told me the GI team was notified and we needed to go to admissions to get checked in, a room was ready for us.

Sitting in admissions, Kadyn began to be in a lot of pain.  We had to wait for over an hour for our room and during that time the pain continually increased.

Once in her room, teams of doctors came in asking me the same questions over and over again and evaluating Kadyn.  Each time someone looked at her stomach the bloating had increased and her coloring decreased.  Once I had finished talking to floor doctors, surgeons,  GI team, and Infectious Disease  doctors, the surgeons came back in and told me Kadyn was showing signs of infections. They would need to operate on her right away.

The surgeon explained they had to find the hole and repair it.  They would try to stay laparoscopically, but if they could not find the hole they would have to open her up to find and repair it.  She went into surgery and prayers went up!









So many people were lifting Kadyn up in prayer and we felt every single one of them.  We knew there was nothing we could do but pray and God was taking care of her.  In our eyes, a miracle happened.  They were able to stay laparoscopically, clear what they saw as leakage, and put a new button in her track so we could continue our home clean outs.  We really could not have received better news.




















Kadyn got out of the hospital on Thursday evening.  I can't believe I am saying this, but she looks better than she has in months!  Koy and Kadyn caught up on their sleep in a hotel Thursday night. Kadyn is still cautious of her belly and her new button, but starting Friday she was running and playing like usual.















We believe in the power of prayer and that miracles do happen.  Our baby girl was sick and getting sicker by the minute.  God healed her and we have all of you who sent your positive thoughts and prayers to thank.  Thank you! Thank you! Thank you!

We love all of you very very much!



Thursday

I accidentally put this on Facebook and forgot to put it on here as well. This was Thursday...



Guess who got the O.K. to go home! We have to wait for her last round of IV antibiotics and RX for home antibiotics, but then as Kadyn says "We'll be out of here in NO time!"
Thank you for all the prayers and positive thoughts that surely put us on the fast track home!

Wednesday, October 3, 2012

Wednesday Night

Big day today! Kadyn was able to get up and walk around. She was slow and kinda dizzy, but she loved being up for a bit.    She ate what she calls "hard food" and tolerated it well. All steps in the right direction. Kadyn also did her first new tube treatment (in the picture above) and so far so good!  We are hoping we will be able to go home tomorrow.  I would love to post more and get some more pics up, but I can hardly keep my eyes open.  Again, thank you all for giving us so much strength through your prayers and love.  We feel them and we send our love back to you!

Tuesday, October 2, 2012

Tuesday Night

Kadyn did ok with the clear diet today.  She had juice, ice, a popsicle and even some bites of jello. Unfortunately, each time she ate her belly hurt almost immediately.  We are hoping this is because it was empty for so long.  Kadyn has been in quite a bit of pain today and required more pain medicine.  I think the plan for tomorrow is to try using her new g-tube/Mic Key button to give her go-lytely treatments.  My mom and Koy have been with us the entire time which is always good thing for Kadyn (and me).  Ryan and Papa Ron came today, so we had some great distractions.  We pray that tomorrow Kadyn will have less pain.  Also pray, whatever steps we take are positive and in the direction that would send us home sooner rather than later.

Thank you is no longer enough for the outpouring of support and love.  We feel so comforted by your all of your prayers and kind words.  It really does keep us going! We are extremely blessed! 

Love, 
Katie
Proverbs 3:5 Trust in the LORD with all your heart and lean not on your own understanding;

No plans yet...




We have been in a holding pattern today. Kadyn is very sore but doing well. Fever has stayed down and we just got the ok to try liquids. That means she finally gets her popsicle! Definitely steps in the right direction. If the liquids stay
down and do not cause more pain we move on to the next step. We are still waiting for docs to decide what that step will be. Praying for the liquids to go down with no pain and that we continue to see positive changes.

We continue to be overwhelmed with your prayers and love. Thank you more than words can say!

Monday, October 1, 2012

Humbled

Right now, I am sitting in a chair facing Kadyn who is lying in a hospital bed...again.  I am looking through the texts, emails, and posts people have sent and I am so completely overwhelmed.  I have been trying to type my feelings for over an hour and it is just too hard! There is absolutely no way to express how much we appreciate all of the prayers, thoughts, support, and love.  Kadyn is such a special little girl.  She is stronger and more brave than I could ever be! Her smile and spirit are contagious.  While getting her IV today, more and more nurses kept coming into the treatment room to listen to her.  One nurse finally said, "I guess we know who we need to visit if we are ever having a bad day"

Yes, she was talking about the 3 1/2 year old who was having tremendous stomach pain,  had just been poked and prodded for over an hour without any pain meds,  told she would not be going home as she had planned, but spending the next few nights in the hospital, had not had a piece of food all day, and then taken to the treatment room for an IV where she was able to make numerous people smile.  

God is so great! He made Kadyn exactly as she needs to be for the obstacles she will endure.  

Today has been a very scary and unexpected day.  Each word spoken, typed, and written about Kadyn was felt by her and the rest of our family.  Kadyn was lifted up in prayer by so many people today.  There is nothing more powerful than a group of people praying to God for the same thing.  THANK YOU!

Kadyn will get better.  She has been on a very hard road for a long time.  She is still fighting.  We continue to pray!

THANK YOU! THANK YOU! THANK YOU!

Love, 
Katie