Just talked to the surgeon and all went well. I will get to see her in recovery soon. Kadyn will be in the PICU tonight for observation. Thank you for continued prayers along with all the love and support.
by Kadyn's Krew
August 03, 2015 at 06:29PM
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Monday, August 3, 2015
The nurse just came out and said they were finishing up. Long day...can't wait to my sweet girl.
Miscommunication...surgery back to 1:00.
Surgery has been moved up and is now scheduled for 10:15. We continue to be amazed and draw strength from the incredible outpouring of support. Thank you all a million times!
Saturday, July 25, 2015
For over 9 months we have been rejoicing in the fact that Kadyn has been healthy enough to stay out of the hospital. Take that CF! We said... We are winning right now! We said... We've got this! We said... Her luck is changing. We said. All the while CF was quietly and horribly attacking parts of our baby girl from the inside. I talked with Kadyn's doctor yesterday. Kadyn's test results from last week showed severe reflux and slow gastric emptying. It is believed that Kadyn has been silently aspirating into her lungs. This is a very scary thing to hear and once again reminds us that CF is an invisible disease... as hard as she fights, CF is always fighting against her. We do know aspirating can cause lung damage. We don't know how long this has been going on or how much damage has been done. However, this does explain the constant crackles in her lung, on and off cough without other symptoms, the ups and downs of her lung function test and the evidence of rather consistent inflamed airways. The plan is for Kadyn to be admitted tomorrow evening for IV antibiotics. Her doctor and surgeon want to make sure her lungs are as stable as possible before surgery. She will do a PFT once admitted and again 7 days into her course of antibiotics. If the test shows stability or improvement she will have a rather long surgery with multiple procedures: Nissen fundoplication with pyloroplasty and g-tube placement. The Nissen fundo procedure is to strengthen the valve between her esophagus and stomach. Pyloroplasty procedure to widen the opening in the lower part of the stomach so stomach contents can empty into the small intestine. G-tube placement is the feeding tube insertion so we may begin continuous feeds throughout the night. Ultimately, resulting in weight gain. I would be lying if I said I wasn't mad, hurt, in disbelief, sad. Every single uncomfortable feeling I've ever felt seems to be running through me right now. CF has truly invaded every single part of Kadyn's body. I HATE IT! In these vulnerable times my faith may seem shaky...these are the times I have to repeat over and over to trust in Him. God's plan not ours. Sometimes I need to remind myself of this 100x a day. This is one of those times. I do NOT understand any of this and if truly trusting in Him I know I don't have to understand. We have not told Kadyn and Koy yet. We are going to talk about it this morning then have as much fun as possible until we leave tomorrow. As always your prayers/positive thoughts/love/support are felt and sincerely appreciated. Be joyful in hope, patient in affliction, faithful in prayer. —Romans 12:12
For over 9 months we have been rejoicing in the fact that Kadyn has been healthy enough to stay out of the hospital. Take that CF! We said... We are winning right now! We said... We've got this! We said... Her luck is changing. We said. All the while CF was quietly and horribly attacking parts of our baby girl from the inside. I talked with Kadyn's doctor yesterday. Kadyn's test results from last week showed severe reflux and slow gastric emptying. It is believed that Kadyn has been silently aspirating into her lungs. This is a very scary thing to hear and once again reminds us that CF is an invisible disease... as hard as she fights, CF is always fighting against her. We do know aspirating can cause lung damage. We don't know how long this has been going on or how much damage has been done. However, this does explain the constant crackles in her lung, on and off cough without other symptoms, the ups and downs of her lung function test and the evidence of rather consistent inflamed airways. The plan is for Kadyn to be admitted tomorrow evening for IV antibiotics. Her doctor and surgeon want to make sure her lungs are as stable as possible before surgery. She will do a PFT once admitted and again 7 days into her course of antibiotics. If the test shows stability or improvement she will have a rather long surgery with multiple procedures: Nissen fundoplication with pyloroplasty and g-tube placement. The Nissen fundo procedure is to strengthen the valve between her esophagus and stomach. Pyloroplasty procedure to widen the opening in the lower part of the stomach so stomach contents can empty into the small intestine. G-tube placement is the feeding tube insertion so we may begin continuous feeds throughout the night. Ultimately, resulting in weight gain. I would be lying if I said I wasn't mad, hurt, in disbelief, sad. Every single uncomfortable feeling I've ever felt seems to be running through me right now. CF has truly invaded every single part of Kadyn's body. I HATE IT! In these vulnerable times my faith may seem shaky...these are the times I have to repeat over and over to trust in Him. God's plan not ours. Sometimes I need to remind myself of this 100x a day. This is one of those times. I do NOT understand any of this and if truly trusting in Him I know I don't have to understand. We have not told Kadyn and Koy yet. We are going to talk about it this morning then have as much fun as possible until we leave tomorrow. As always your prayers/positive thoughts/love/support are felt and sincerely appreciated. Be joyful in hope, patient in affliction, faithful in prayer. —Romans 12:12
by Kadyn's Krew
July 25, 2015 at 08:44AM
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July 25, 2015 at 08:44AM
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Monday, June 22, 2015
Could not be more proud of my dear friend. Ashley has worked so hard, followed her heart, found her true passion and is it all right here on her website. She has a heart of gold and a true desire to help people share their stories in hopes of helping others. Please check it out. You will not be sorry! So incredibly proud of you Ashley Wren Chandler ❤️
Could not be more proud of my dear friend. Ashley has worked so hard, followed her heart, found her true passion and is it all right here on her website. She has a heart of gold and a true desire to help people share their stories in hopes of helping others. Please check it out. You will not be sorry! So incredibly proud of you Ashley Wren Chandler ❤️
by Kadyn's Krew
June 22, 2015 at 06:09AM
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June 22, 2015 at 06:09AM
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Wednesday, June 17, 2015
Learning some new moves at Frozen Frenzy!
So inspiring!!
Saturday, June 13, 2015
This is remarkable!
Sunday, June 7, 2015
Wow. So true!
Saturday, May 30, 2015
CF Awareness Month
Saturday, May 23, 2015
Wednesday, May 20, 2015
Tuesday, May 19, 2015
There are many restrictions and precautions when you have a life-threatening disease. A compromised immune system makes some of the most popular childhood activities dangerous. Every case of cystic fibrosis is different. Therefore, parents must use their best judgement regarding their child. Kadyn gets sick...a lot. She does get to do many many fun things, but she has also paid the price numerous times. While we have always vowed to let Kadyn live and try (as much as possible) not to keep her in a bubble, we have taken a firm stand against some activities that pose a threat. Gymnastics has always been one of those for us. We told Kadyn "no" to classes. She didn't cry or whine. She pulled up YouTube videos and began to learn all she could. She's determined to be a gymnast no matter what. It's been remarkable watching Kadyn work so hard. But, just yesterday she asked "Mom, do you think there will be a cure for CF by this summer so I can start taking gymnastics class?" Because of the incredible kindness of some very special people we didn't have to wait for a cure. Kadyn's dream came true today. It was magical, beautiful, heartwarming, and as Kadyn said..."This was the very best day ever!" There is truly no way to adequately express our thanks to Stephen Morgan, Fox 5 news and the wonderful people at the Springfield Y for giving Kadyn this gift. It is a day none of us will ever forget. We are all going to sleep tonight with smiles that are refusing to fade. You are all angels ❤️ We also want to thank Crystal and Mark Harrington and Indie Blue Salon for hosting such an awesome fundraiser and raising awareness for Cystic Fibrosis! Cannot wait to see who is next!
There are many restrictions and precautions when you have a life-threatening disease. A compromised immune system makes some of the most popular childhood activities dangerous. Every case of cystic fibrosis is different. Therefore, parents must use their best judgement regarding their child. Kadyn gets sick...a lot. She does get to do many many fun things, but she has also paid the price numerous times. While we have always vowed to let Kadyn live and try (as much as possible) not to keep her in a bubble, we have taken a firm stand against some activities that pose a threat. Gymnastics has always been one of those for us. We told Kadyn "no" to classes. She didn't cry or whine. She pulled up YouTube videos and began to learn all she could. She's determined to be a gymnast no matter what. It's been remarkable watching Kadyn work so hard. But, just yesterday she asked "Mom, do you think there will be a cure for CF by this summer so I can start taking gymnastics class?" Because of the incredible kindness of some very special people we didn't have to wait for a cure. Kadyn's dream came true today. It was magical, beautiful, heartwarming, and as Kadyn said..."This was the very best day ever!" There is truly no way to adequately express our thanks to Stephen Morgan, Fox 5 news and the wonderful people at the Springfield Y for giving Kadyn this gift. It is a day none of us will ever forget. We are all going to sleep tonight with smiles that are refusing to fade. You are all angels ❤️ We also want to thank Crystal and Mark Harrington and Indie Blue Salon for hosting such an awesome fundraiser and raising awareness for Cystic Fibrosis! Cannot wait to see who is next!
by Kadyn's Krew
May 19, 2015 at 11:07PM
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May 19, 2015 at 11:07PM
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Monday, May 18, 2015
Saturday, May 16, 2015
Friday, May 15, 2015
Tuesday, May 12, 2015
"In late-stage clinical trials, Orkambi was shown to improve lung function in people with CF and significantly reduce the rate of pulmonary exacerbations, which can lead to frequent hospitalizations and worsening lung function. The drug was developed by Vertex Pharmaceuticals Inc. with significant financial and clinical support from the Foundation."
"In late-stage clinical trials, Orkambi was shown to improve lung function in people with CF and significantly reduce the rate of pulmonary exacerbations, which can lead to frequent hospitalizations and worsening lung function. The drug was developed by Vertex Pharmaceuticals Inc. with significant financial and clinical support from the Foundation."
by Kadyn's Krew
May 12, 2015 at 07:26PM
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May 12, 2015 at 07:26PM
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