Monday, March 31, 2014

FISH FOR A CURE! Ozarks Charity Fishing Tournament May 3, 2014 at Mill Creek - Table Rock Lake benefiting The Cystic Fibrosis Foundation via Kadyn's Krew. CF is a devastating disease that impacts 30,000 people in the US...70,000 worldwide. We will not stop fighting until a cure is found! As always, ALL money raised by Kadyn's Krew goes directly to The Cystic Fibrosis Foundation.

FISH FOR A CURE! Ozarks Charity Fishing Tournament May 3, 2014 at Mill Creek - Table Rock Lake benefiting The Cystic Fibrosis Foundation via Kadyn's Krew. CF is a devastating disease that impacts 30,000 people in the US...70,000 worldwide. We will not stop fighting until a cure is found! As always, ALL money raised by Kadyn's Krew goes directly to The Cystic Fibrosis Foundation.

by Kadyn's Krew



March 31, 2014 at 12:34AM

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Friday, September 13, 2013

September 13, 2013

Tests are done, the tube is out and we are excited to be heading home at last!!!

Thursday, September 12, 2013

Tuesday, September 10, 2013

September 10, 2013


Tomorrow, Kadyn will have a CT scan of her sinuses and lungs. She will also get to practice PFT's. Pulmonary function tests (PFTs) are noninvasive diagnostic tests that provide feedback about the function of the lungs. People with CF usually start this test when they are 5, but Kadyn's doctors feel it would be a good idea to start practicing. Thursday, they will test Kadyn for reflux. This test requires a smaller version of the dreaded NG tube to be inserted in Kadyn's nose down to her stomach and left for 24 hours. She will have to eat while the tube is in for the test to work accurately. As we know, this is what Kadyn "hates the most". We are not sure she will talk, let alone eat, in that 24 hours. But, if there is a possibility that she has reflux and is aspirating into her lungs we really need to know so we can start treating it. Please pray for comfort and ease during the next few days. If all goes well, the plan is to go home on Friday!

Again, we continue to be overwhelmed with the support, prayers and love we have received. God and our Krew are what get us through these particularly hard times.

We love and appreciate you all so much!

Monday, September 2, 2013

Here we are again...


It has been very difficult for me to write this update. I've tried and failed several times. For one, it is hard to believe Kadyn is back in the hospital and we are going to be here at least two weeks. Another reason is when I write things down they set in a little harder and become more of a reality. I truly cannot remember the last time I thought Kadyn felt 100%. We got home from the hospital in May and have been on a roller coaster ever since. An antibiotics 6 out of 13 weeks roller coaster. Thankfully, it is summer and we have been able to distract ourselves and have a lot of fun! There were lots of laughs and smiles, but as a mom there was constant worry. I decided to push back the "what if's" and let Kadyn play as hard and long as she physically could. I knew that when it was too much for her she would rest. I knew that when those rest times became more frequent I would have my answer and it would be time for intervention.

Once I finally saw the exhaustion take over playtime, my heart sank. We had so many fun things coming up and I couldn't believe that this disgusting, bully of a disease was going to ruin them for Kadyn (and Koy). Luckily, Koy and Kadyn were able to go to their first day of "tutoring" with Ms. Abby and attend their first day of preschool. However, we missed Labor Day weekend at the lake with close and extended family and will miss a trip to the beach. Since we really don't know when Kadyn will be cleared to go home... Heartbroken, we postponed our family trip to Florida planned to start September 7th. I haven't had the heart to tell her, and when she says things like "after Columbia we are going to be so much closer to going to the beach! I will really need to burn some energy. I am SO excited!" my heart breaks a little more.

These things may seem insignificant to some people, but to a 4 year old they mean everything.

Cystic Fibrosis is a devastating disease. It does not care how old you are or what you have planned. It knows that even the strongest most positive spirits do not stand a chance against it.

Anyone who saw Kadyn this summer probably had no idea there was a war raging inside her little body. How could they? Seeing her incredibly large smile or hearing her contagious belly laugh, you'd never know every breath was a struggle.

We know we are dealing with a couple of components. Kadyn's compressed airway does not allow much more than air to move through. When you have CF and your mucus is extremely thick this is a very big problem. We have added a new treatment (in addition to her nebulizers and vest) called IPV. This seems to be helping already. So far, Kadyn is not culturing any new bacterias. However, she recently cultured, and has been on treatment for, a bacteria that could have caused the excess amount of mucus in her airways and lungs. Once Kadyn's cough is better they would like to get a CT scan of her sinuses and lungs. They may also test for reflux to make sure she is not aspirating into her lungs.

Right now, I am sitting here watching Kadyn sleep. I cannot believe she has endured so much this year. There is no way to get through any of this without a strong faith. Mostly, because there is no way to understand why such a little princess would have to fight like such a warrior on a daily basis. But, she does! Kadyn wakes up smiling EVERYday. She does exactly what she is supposed to do and she does it all like a true champion. We are all in constant awe of her strength, maturity, positive spirit, sense of humor, and grace.

Your continued prayers, love, and support also keep us going. We are going to fight and will not give up until we win...thank you for fighting with us!
We love and appreciate you all so much!



Thursday, August 22, 2013

Great Strides 2013






The Springfield Great Strides Walk will be held this year on October 5th at Rutledge-Wilson Farm Park.  If you can't make it to the Kickoff, but would like to register for the walk, please go to www.cff/org/great_strides/katiecarroll.  Even if you have signed up in years past, please do so again so we'll know who we can expect to be joining us.  

Please remember that for the walk this year we are wearing last year's Kadyn's Krew t-shirts.  If you don't have last year's shirt, please email us your size at kadynskrew@gmail.com and we will have a shirt waiting for you at the walk.  

Thank you for being a part of Kadyn's Krew and for caring enough to stand beside us, to walk with us, and to help us fight this fight for Kadyn and all those who struggle with CF.  We hope to see you at the Great Strides Walk on October 5th!

Wednesday, August 21, 2013

August Update




Kadyn had CF Clinic last Wednesday and it went well. However, on Friday she began coughing and has been very tired. We got the call today that she is culturing a new bacteria called Stenotrophomonas maltophilia. We don't know much about it, but we've upped treatments and started oral antibiotics. Now, we pray they do the trick. Our hearts are heavy and we so wish Kadyn could catch a break. This picture was taken today. As you can see Kadyn is still smiling...so we are taking her lead (as usual). Things will get better!


"Do not let your hearts be troubled and do not be afraid" -John 14:27

Saturday, July 13, 2013

Please click here to see  Kadyn's Interview

Thank you Claire for all you do for Kadyn's Krew. You have raised so much awareness for Cystic Fibrosis. We feel extremely blessed to have you fighting this fight with us!  We will see CF stand for Cure Found!!!

Wednesday, May 8, 2013

Update


Update:

I apologize I have not done a very good job updating lately. Mostly, because there has not been much to report.

Kadyn -
As always, Kadyn keeps a smile on her face through it all. She wears her princess dresses with headbands and a positive attitude everyday! She started having some retracting and labored breathing (again) a couple days ago. This makes her pretty tired... instead of running 10 races in the room she runs 2, instead of dancing to 3 songs in a row 1 seems to tire her out. Not sure what this is all about but we are keeping our eye on it.

Kadyn's culture -
She cultured human metapneumovirus this is a virus very similar to RSV. Finding a virus is actually a good thing because we know the reason she got so sick so fast.
Kadyn is not culturing any new bacteria (just her normal staph A). This is wonderful news!

Treatment -
Still on IV antibiotics, breathing and vest treatments 4x/day, and
due to the compressed bronchial tube (airway) we added a new treatment called Ez Pap. We stop her vest 3 times (every 10 min). Then, Kadyn blows against air resistance 10 times and coughs against air resistance a few times.
This is to help open the compressed airway so mucus can move up and out. We will be doing this at home too.

X-ray -
Kadyn had an x-ray today. We have not talked to Kadyn's doctor about it yet. However, the report didn't show much change from a week ago. It also stated mild to moderate hyperinflation...I believe this just means she still has trapped air in her lungs. But, we will know more what it "really means" when we hear from the dr.

Home?
Praying for soon!!!!!

We really miss being together as a family. For some reason this stay has been harder on me than the last few. I don't know if it's the fact that we have been in the hospital 42 days in 4.5 months, that my little girl is 4 and continues to endure so much discomfort and pain on a daily basis and I cannot help her, or because I am actually seeing how devastating Cystic Fibrosis can be.
After writing this, I think it's safe to say it's probably the combination...

I've said it many times before... God gave Kadyn a little extra "something" when He made her. Her spirit and smile are contagious. You cannot help to laugh or at least smile when she is around. She knows no other way to live and she makes the most out of every single second.

We feel so blessed to have such incredible prayer and support warriors in our Krew. Thank you and we love you all!


And we know that in all things God works for the good of those who love him, who have been called according to his purpose. - Romans 8:28

And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus. - Philippians 4:7

Wednesday, May 1, 2013

X-ray






Kadyn's x-ray showed some decrease in secretions, but also more trapped air than before.  They have decided a bronchoscopy is necessary to get a better idea of what is going on.  This will also give us a better culture of the bacteria(s) growing in her lungs. 

Of course this feels like a punch in the stomach because it is the reality of CF rearing it's nasty head and waging war inside our sweet girl once again.  But, in a way, it also a relief that her doctor will get to really see what it looks like in there.  

The bronch will be on Friday and she will be sedated for the procedure. As always, prayers and positive thoughts are greatly appreciated!

WE LOVE YOU!

Now faith is being sure of what we hope for and certain of what we do not see.    
Hebrews 11:1

God is good all the time.

Monday, April 29, 2013

Columbia...again


April, 29, 2013
Kadyn is staying true to form...

We expected to see a significant improvement from the IV antibiotics by now. That is not the case. Kadyn still has a lot of crackles in her chest, labored breathing, and low oxygen levels.
We are continuing this course of action and will reassess on Wed. with an X-ray. If it shows no improvement or she has gotten worse, then they will do a bronchoscopy on Friday. This will allow the doctors to see into her lungs and take a better sample of what might be growing. It will also give them the chance to flush some saline deep in the airways to help break up any mucus plugs that may be stuck.

I feel like a semi-expert on CF belly issues, but pretty lost when it comes to the lungs. We haven't had any issues in this area since 2011. Therefore, we will wait for the doctors to tell us what comes next. As always we appreciate your support and prayers. We love you!

We live by faith, not by sight.
- 2 Corinthians 5:7

Pray continually.
-     1Thessalonians 5:17


April 25, 2013

Fantasy to reality...
Yesterday, we found out Kadyn's x-ray showed a lot more mucus in her lungs. It was decided that she needed to be admitted today for 1-2 weeks of IV antibiotics. We just got checked in and she will be going down to get a PICC line any min. Kadyn did not do too well with anesthesia last time. I am asking for prayers that she wakes up smoothly with no problems. Also, that the PICC is placed easily and stays strong as long as we need it. Thank you Kadyn’s Krew. We love you



Wednesday, April 10, 2013

Results

I just finished talking with the Dr. DiLorenzo about the results from the motility study. Short version, there is no large bowel motility disorder. In comparison to the results from Kadyn’s first motility test in (Dec. 2012) there were signs of improvement. This is most likely because the cecostomy tube is doing its job and letting the bowel rest, in turn, becoming less dilated. When they gave Kadyn a stimulant to challenge her bowel contractions it showed to really help. The doctor’s recommendations were for us to lower the volume of go-lytely, but add the stimulant to each cecostomy flush. She will also discontinue the Miralax (for now) but continue the Amatiza pills increasing the dosage if necessary. We now know what to do to keep the large bowel clear. However, Dr. DiLorenzo did say she could fill up again because she may still have problems in her small bowel. There is no good way to test small bowel motility and CFers are prone to small bowel disorders like DIOS (which Kadyn has). This is good news because there is a way to keep Kadyn’s bowel clear without surgery. But, I would be lying if I said I was not frustrated. I want a fix for Kadyn and we are not leaving here with a clear solution. Bottom line…CF is causing these problems and that reality is a very very hard thing for me to hear.

Monday, April 8, 2013

Columbus





A Day of Blessings

I am not a person who likes change. The thought of a new city/ hospital/ doctor was a bit overwhelming. As always, God had us covered.  Mom, Koy, Kadyn, and I got into the car this morning headed to the hospital and took a wrong turn onto a highway. This is usually a good indicator of how ones day will go...  Not today! The wrong turn led us right to Nationwide Children's Hospital.

The hospital is incredible! Extremely clean, open,  bright colors, nice/helpful staff, and very easy to navigate.

After talking with the Nurse Practitioner we not only found she was a retired CF nurse, but also Kadyn's new doctor has a son living with Cystic Fibrosis.  We prayed that God would lead us to a place where the doctors would take everything (CF and GI) into consideration....answered prayer!

We were told that depending on the KUB Kadyn might need an NG tube after all.  She, of course, heard this and her anxiety skyrocketed.  Results were ok and orders were given to clean her out through her cecostomy instead of NG tube...another answered prayer!

Tomorrow Kadyn will have 6-8 hours of testing.  They are going to take her button out and insert a motility catheter.  She will be asleep for the change, but when she wakes up she will be extremely anxious and scared because of past experiences with her button.  I am not only asking for prayers for answers but also peace and comfort for Kadyn.  She is a tough incredible little girl who has been through so much.  I am constantly in awe of her resilience and tenacious spirit.

We will get results on Wednesday and I will continue to update as much as I can.  Thank you for all of the continued prayers and support.  We love you all very much!

Thursday, April 4, 2013

UPCOMING KADYN'S KREW EVENTS


Kadyn's Krew Events

We are so humbled by all the support and love.  Kadyn's Krew, you are remarkable!  By raising awareness for Cystic Fibrosis, you are getting us one step closer to making CF stand for CURE FOUND. We love you all so very much!


April 18 

WCR of Springfield Charity Auction - Proceeds to benefit WIN and Cystic Fibrosis/Kadyn's Krew

Here is just a sampling of some of the amazing packages that will be up for auction on the 18th!
* Millwood Golf Pkg with a former PGA Pro!
* 2ND AMENDMENT SHOOTOUT with Mike Green
* 2 Night Condo Stay at Indian Point!
* Dance Classes
* Camping pkg., Branson Shows, Spa Day, Professional Home Photo Shoot, Professional Electical Service, Springfield Cardinals tickets & merchandise, and we’ve heard rumors of …something about…. a First Pitch possibly!


April 24

Male Beauty Pageant at Glendale High School - Proceeds benefiting Cystic Fibrosis/Kadyn's Krew

Kadyn's Krew Night at Slim's Chicken
From 4:00-10:00 Slim's on JOYCE in Fayetteville, AR

May 2

Riffraff in Fayetteville, AR will be donating 20% of all sales from 6:00-8:00 on May 2 to Kadyns Krew 
**** Springfield friends, you can buy online at www.shopriffraff.com * Just make sure to put Kadyns Krew in the notes!




May 4

Great Strides walk in Fayetteville, AR
Very Big THANK YOU to Claire Turner for organizing this and all other Fayetteville events.

May 5 

Benefit Bass Tournament  - Table Rock Lake, Baxter Launch Ramp - Proceeds benefiting Cystic Fibrosis/Kadyn's Krew
Very Big THANK YOU to the Sponsors of this event - 
SRC Holding Corp
Marisol International
Davis Lynn and Moots CPA’s
Fabick Cat
WorldWide Logistics

Application and Rules may be printed here.  


***As always,  100% of all money donated to Kadyn's Krew goes directly to the Cystic Fibrosis Foundation***





Friday, February 15, 2013

Friday



Thought day 23 might be THE day...Liver enzymes are way down, but Kadyn's x-ray showed little to no improvement. As always trusting in God's plan and in His timing. I know we will be home when He feels she is physically ready. Until then, we are making up lots of new games to play within our four walls�� So thankful for our visitors and constant support from friends and family everywhere. Love you all!

Here are some pics from Valentine's Day. Ryan and Koy came and Aunt KyKy made a surprise visit! So fun and extremely blessed!!!






Wednesday, February 13, 2013

Day 21....

We have now been in the hospital the same number of days Kadyn was in the hospital from Oct. 2011-Oct. 2012.  Positively thinking...We could just be getting it all out of the way the first few months so we can enjoy the rest of the year at home!

Today we are just hanging out.  No x-rays or labs at all today.  Kadyn's CF doctor is not doing hospital rounds this week. The doctor taking his place is the CF Infectious Disease doctor.  Laughing, he told Kadyn this morning "I like listening to you talk and always have fun visiting with you".  He is very nice!  With that, he has taken her off the antibiotic she was on for the infection around her button.  It was the 7th day and he would like to see if it is going to flare up again.  If so, he wants to culture it and see if anything comes up.  He has also been going through all of her records and called her KC doc about her intestinal biopsies done in April.  Obviously, something about them caught his attention.  I decided to try Kadyn on a gluten free diet (again) to see if it will help with the distention of her belly and retention of stool.   I got all of her favorites at the store, so she is very happy about the change.

In the meantime, we wait for our next step.  I am hoping they will draw labs tomorrow because I am curious to see if her liver enzymes have stayed down.  If so, maybe we can think about heading home!?!  Besides the acceptance letter we have not heard from Columbus yet so we are waiting on that as well.  All in God's time....I have to remind myself of that quite often these days.

We love you all and appreciate your love, support, and prayers more than ever!

Jeremiah 29:11-13: “‘For I know the plans I have for you,’ declares the LORD, ‘plans to prosper you and not to harm you, plans to give you hope and a future. Then you will call on me and come and pray to me, and I will listen to you. You will seek me and find me when you seek me with all your heart.’”





Monday, February 11, 2013

Monday Update

Over the weekend Kadyn's liver enzymes increased again and her x-ray showed she was very full.  Her cecostomy tube is doing it's job, but her upper (small bowel) is not.  On Saturday, we put her back on a clear liquid diet and as you can imagine she was NOT pleased.  Not only the liquid diet but 12 caps of Miralax and a new "helper" medicine called Amatiza.  She was not able to take Amatiza before because she couldn't swallow pills. No longer a problem for this warrior! We were doing everything in our power to avoid another NG tube.

IT WORKED! The x-ray on Sunday showed that she was clear.  It also showed that her insides were very very distended (not sure why). We got Kadyn's labs back and her liver enzymes increased...AGAIN (also not sure why).  Kadyn was able to start back on the soft mechanical diet along with a daily regimen of: 12-15 caps of Miralax, 1 Amatiza pill, 1000ml go-lytely via cecostomy tube. She was so happy about the food she was willing (as usual) to do whatever else was necessary.  It is amazing to me that Kadyn does not talk much about going home.  She knows we are here until she feels better.  However, you take her food away and she is screaming to go home from the rooftops.  I don't blame her one bit!

MONDAY...

Great start to the week! Liver enzymes DECREASED over night...PRAISE God!! Her x-ray showed normal patterns and her distention has lessened.  We will continue what we are doing and have an another x-ray tomorrow.  They are going to hold off on labs tomorrow and test her again on Wednesday.

All in all, this is the most positive news we have received in awhile.  Prayers are definitely working!!!
Still no word from Ohio on when they want to see her.  We are all hoping to get a call and date this week.

Thank you everyone! You are keeping us strong and we continually feel the love! Please keep up the prayers.  God is good ALL the time and they are definitely working!!!!

"Do not grow weary and lose heart" Hebrews 12:3

"And whatever you ask in prayer, you will receive, if you have faith.” Matthew 21:22


Here are some pictures from the weekend...Koy and Ryan got here right when Megz left so it was fun  filled!! Gamma gets here today and you would think it's been a month since Kadyn has seen her. She is about to burst with excitement! Our family and friends are simply incredible! There is no possible way we could do this without each and every one of you doing what you do! We love you all!!







Friday - GOOD NEWS DAY


"
Good News! Yesterday, we got an "acceptance" letter to Nationwide Children's Hospital in Columbus, Ohio. This means that Kadyn will be seen by a motility expert! We have been praying for something like this for a very long time! We do not have a date yet, but they said they will be contacting us very soon.

From good news to today' s news...
Kadyn had labs and an x-ray this morning. Her liver enzymes have increased again and her x-ray showed that she is very very full again. She is back on a liquid diet and we are going to do everything we can (12-15 caps of Miralax daily) to avoid another NG tube. There is no real explanation for any of this, or none that we can find so far. It is like her stomach and intestines have just stopped working all together. I thought we might be coming home this weekend, but it doesn't look like that anymore.

We continue to trust in God and give thanks that Kadyn's spirit has remained positive and strong. She is happy and doing her best to understand all we have to do to get her healthy. I say it all the time but I swear God gave her some of the most amazing gifts when He made her. Kadyn teaches us something new everyday. I am so proud of her and feel incredibly blessed that God chose me to be her mommy.

I have to thank all of you as well! The cards, calls, texts, balloons, flowers, gifts, prayers and love are so appreciated! We love you and know we could not do what we do without all of you standing with us and cheering us on! THANK YOU!!
"

Thursday, February 7, 2013

Updates from Wednesday and Thursday


Wednesday...



Found out yesterday that the pain in her button is from an infection in the abdominal wall at the button site. Started oral antibiotics. 
Kadyn's liver enzymes started going back up yesterday and increased more today. We will continue to monitor those as well. 


Thursday...


I'd say today is one our best days yet! Enzymes are still going up but not by much so they are not too worried about that. Hopefully the antibiotic will continue to do its thing on the infection so we can get back on her regular clean out schedule soon. They overnighted all Kadyn's latest records to Columbus and her doc is calling the specialist today so they will have the most current info when they review her case on Friday.

Gamma and Koy just left and Kadyn is sleeping peacefully. So sad they are gone, but very glad both will be able to be home for a bit. Megz is coming to see us tomorrow, then Koy and Ryan will be back on Saturday.

So thankful, for the incredible love and support we have felt this entire time. Still trusting in God and His plan. Love you all!



Monday, February 4, 2013

Monday

Sorry for the lack of updates, but there really hasn't been anything new to report. Kadyn has been very bloated and experiencing a lot of pain, mainly on her right side and around her cecostomy button. We started her home bowel regimen yesterday. This includes, 2 go-lytely cecostomy clean outs and 6-9 caps of Miralax orally each day. She had her x-ray this morning. It showed that the cecostomy is doing it's job as usual, but she is starting to hold stool on her right side above the cecostomy tube (this is why we were here in the first place). So, we decided to go to our max 9 caps of Miralax daily to see if it can move it along. She was in so much pain this morning she was in tears. We are so confused because she is hardly ever in pain at home (more of a discomfort when full rather than pain) and we cannot figure out where the pain is coming from. 
Kadyn needs at least one full day of minimal to no pain before we can come home. So, we just are hanging tight. Today, we are focusing on all the positives: liver enzymes are still coming down, no NG tubes, Kadyn is able to eat some food, no IVs right now, we are back down to 2 breathing/vest treatments a day, Gamma and Koy are here, I get to spend time with my babes without having to look at laundry or dirty dishes :) We would rather be home but we don't have that option yet, so we will take full advantage of the quality time we get to spend with each other.

Again, we thank you for the incredible amount of support you continue to show us! We are so blessed to have such an amazing krew of family and friends. We feel your prayers and have never felt alone on this journey...we have all of you to thank for that!

"I will hope continually, and will praise you more and more." Psalm 71:14

"We do not know what to do, but our eyes are on you." 2 Chronicles 20:12b