Update on Kaylee

tammykrumrey · Aug 17, 2007

Please continue to keep little Kaylee in your thoughts and prayers....

FRIDAY, AUGUST 17, 2007 09:43 AM, CDT
Well, I guess it is time that I update on Miss Kaylee. I know many of you wait anxiously to hear how she is doing. It is getting hard again to update. Kaylee's pft's are way down, Wednesday afternoon they were 18% and yesterday they were down to 16%. She has not been able to return to school. She is in a lot of pain, keeping her on the couch or in bed most of the time. Her pain seems to be in her back right side and her head. More medicine is being givin to help with the pain. Her oxygen is turned up as high as possible for the home and she is struggling at times. As long as she stays still she is ok. When she moves around she has difficulty. Her head hurts so bad that she can't hardly lift her head. Blood work was done yesterday to see if this is caused from retaining CO2. Please keep my precious daughter in your prayers. She is so week and so scared. Kaylee says she feels like a butterfly breaking out of its cacoon waiting for wings to fly. We all now see butterfly's in a different view.

sandra

Thank you guys in advance.

Edited to say: Many of you are leaving very kind words for Sandra and Kaylee, but Sandy doesn't visit this site. You are more than welcomed to go to her caring bridge site and leave messages for her and Sandy directly...they are always looking for kind words. Try going to
www.caringbridge.org/visit/kayleemaze
and leave her a message! Thanks again!

tammykrumrey · Aug 17, 2007

Please continue to keep little Kaylee in your thoughts and prayers....

FRIDAY, AUGUST 17, 2007 09:43 AM, CDT
Well, I guess it is time that I update on Miss Kaylee. I know many of you wait anxiously to hear how she is doing. It is getting hard again to update. Kaylee's pft's are way down, Wednesday afternoon they were 18% and yesterday they were down to 16%. She has not been able to return to school. She is in a lot of pain, keeping her on the couch or in bed most of the time. Her pain seems to be in her back right side and her head. More medicine is being givin to help with the pain. Her oxygen is turned up as high as possible for the home and she is struggling at times. As long as she stays still she is ok. When she moves around she has difficulty. Her head hurts so bad that she can't hardly lift her head. Blood work was done yesterday to see if this is caused from retaining CO2. Please keep my precious daughter in your prayers. She is so week and so scared. Kaylee says she feels like a butterfly breaking out of its cacoon waiting for wings to fly. We all now see butterfly's in a different view.

sandra

Thank you guys in advance.

Edited to say: Many of you are leaving very kind words for Sandra and Kaylee, but Sandy doesn't visit this site. You are more than welcomed to go to her caring bridge site and leave messages for her and Sandy directly...they are always looking for kind words. Try going to
www.caringbridge.org/visit/kayleemaze
and leave her a message! Thanks again!

tammykrumrey · Aug 17, 2007

Please continue to keep little Kaylee in your thoughts and prayers....

FRIDAY, AUGUST 17, 2007 09:43 AM, CDT
Well, I guess it is time that I update on Miss Kaylee. I know many of you wait anxiously to hear how she is doing. It is getting hard again to update. Kaylee's pft's are way down, Wednesday afternoon they were 18% and yesterday they were down to 16%. She has not been able to return to school. She is in a lot of pain, keeping her on the couch or in bed most of the time. Her pain seems to be in her back right side and her head. More medicine is being givin to help with the pain. Her oxygen is turned up as high as possible for the home and she is struggling at times. As long as she stays still she is ok. When she moves around she has difficulty. Her head hurts so bad that she can't hardly lift her head. Blood work was done yesterday to see if this is caused from retaining CO2. Please keep my precious daughter in your prayers. She is so week and so scared. Kaylee says she feels like a butterfly breaking out of its cacoon waiting for wings to fly. We all now see butterfly's in a different view.

sandra

Thank you guys in advance.

Edited to say: Many of you are leaving very kind words for Sandra and Kaylee, but Sandy doesn't visit this site. You are more than welcomed to go to her caring bridge site and leave messages for her and Sandy directly...they are always looking for kind words. Try going to
www.caringbridge.org/visit/kayleemaze
and leave her a message! Thanks again!

tammykrumrey · Aug 17, 2007

Please continue to keep little Kaylee in your thoughts and prayers....

FRIDAY, AUGUST 17, 2007 09:43 AM, CDT
Well, I guess it is time that I update on Miss Kaylee. I know many of you wait anxiously to hear how she is doing. It is getting hard again to update. Kaylee's pft's are way down, Wednesday afternoon they were 18% and yesterday they were down to 16%. She has not been able to return to school. She is in a lot of pain, keeping her on the couch or in bed most of the time. Her pain seems to be in her back right side and her head. More medicine is being givin to help with the pain. Her oxygen is turned up as high as possible for the home and she is struggling at times. As long as she stays still she is ok. When she moves around she has difficulty. Her head hurts so bad that she can't hardly lift her head. Blood work was done yesterday to see if this is caused from retaining CO2. Please keep my precious daughter in your prayers. She is so week and so scared. Kaylee says she feels like a butterfly breaking out of its cacoon waiting for wings to fly. We all now see butterfly's in a different view.

sandra

Thank you guys in advance.

Edited to say: Many of you are leaving very kind words for Sandra and Kaylee, but Sandy doesn't visit this site. You are more than welcomed to go to her caring bridge site and leave messages for her and Sandy directly...they are always looking for kind words. Try going to
www.caringbridge.org/visit/kayleemaze
and leave her a message! Thanks again!

tammykrumrey · Aug 17, 2007

Please continue to keep little Kaylee in your thoughts and prayers....

FRIDAY, AUGUST 17, 2007 09:43 AM, CDT
Well, I guess it is time that I update on Miss Kaylee. I know many of you wait anxiously to hear how she is doing. It is getting hard again to update. Kaylee's pft's are way down, Wednesday afternoon they were 18% and yesterday they were down to 16%. She has not been able to return to school. She is in a lot of pain, keeping her on the couch or in bed most of the time. Her pain seems to be in her back right side and her head. More medicine is being givin to help with the pain. Her oxygen is turned up as high as possible for the home and she is struggling at times. As long as she stays still she is ok. When she moves around she has difficulty. Her head hurts so bad that she can't hardly lift her head. Blood work was done yesterday to see if this is caused from retaining CO2. Please keep my precious daughter in your prayers. She is so week and so scared. Kaylee says she feels like a butterfly breaking out of its cacoon waiting for wings to fly. We all now see butterfly's in a different view.

sandra

Thank you guys in advance.

Edited to say: Many of you are leaving very kind words for Sandra and Kaylee, but Sandy doesn't visit this site. You are more than welcomed to go to her caring bridge site and leave messages for her and Sandy directly...they are always looking for kind words. Try going to
www.caringbridge.org/visit/kayleemaze
and leave her a message! Thanks again!

lilismom · Aug 17, 2007

thanks for the update. It breaks my heart to think of a child suffering like this. I hope they can get her pain under control so she can be more comfortable.

lilismom · Aug 17, 2007

thanks for the update. It breaks my heart to think of a child suffering like this. I hope they can get her pain under control so she can be more comfortable.

lilismom · Aug 17, 2007

thanks for the update. It breaks my heart to think of a child suffering like this. I hope they can get her pain under control so she can be more comfortable.

lilismom · Aug 17, 2007

thanks for the update. It breaks my heart to think of a child suffering like this. I hope they can get her pain under control so she can be more comfortable.

lilismom · Aug 17, 2007

thanks for the update. It breaks my heart to think of a child suffering like this. I hope they can get her pain under control so she can be more comfortable.

kayleesgrandma · Aug 17, 2007

For those who missed the original posting by tammy about this dear, precious child, here are the original postings--pray for the family, for little Kaylee, that she may go in peace, and have no pain--that Jesus will come and scoop her up in His arms, and she will have joy everlasting--and that He may give them comfort in this hour of their need--and in the days to come....

06/05/2007 06:04 PM

There is a little girl named Kaylee who is 10 and had a double lung tx in Oct. 05 who is in need of as many prayer and good thoughts. Her body has rejected her lungs, and she is loosing her lung function very quickly. She has dropped from the 50s to the 20s in two weeks. They have tried basically everything possible and is now headed back to St. Louis Childrens to go through options, in which her mom says none are very good.

Her mom says she could be re-listed, but the problem is sustaining her long enough for that to happen. It makes me so sad. She is on O2 24/7 now.

Please, if you are one to pray, please do so. If not, please send her and her family all the good vibes you can!

She also has a younger sister with CF who is doing very well. Just another proof that there is much more than gene mutations determining the outcome of one with CF.

Thanks everyone!

06/11/2007 11:13 AM

First, thank you for all your prayers and good wishes.

My sister just received a call from the little girls mom, and they sent her home and told her that she only has 1-3 months to live. They cannot do anything else, and she is not able to get another transplant. They told her parents to take her home and let her live the rest of her life to the fullest.

My heart is broken! How do you tell your 10 year old little girl this? Her little sister, who also has CF, is scared to death of course. She is only 8 years old and watching her sister loose her battle to the same disease that she is fighting.

My daughters are both about the same age as this little girl and her sister. It is just killing me. I am not an emotional person...my husband has probably only seen me cry about 10 times in the 14 years we have been together. But today when I called him, I couldn't help but cry over this sad news.

We are getting together with the little girl and her family in a few weeks when she is back in St. Louis for a follow up. There is a part of me that doesn't know if I will be able to do it because I am afraid I will just break down.

Thanks again. I think I am going to go to the restroom (I am at work) and let out a few tears fall.

kayleesgrandma · Aug 17, 2007

For those who missed the original posting by tammy about this dear, precious child, here are the original postings--pray for the family, for little Kaylee, that she may go in peace, and have no pain--that Jesus will come and scoop her up in His arms, and she will have joy everlasting--and that He may give them comfort in this hour of their need--and in the days to come....

06/05/2007 06:04 PM

There is a little girl named Kaylee who is 10 and had a double lung tx in Oct. 05 who is in need of as many prayer and good thoughts. Her body has rejected her lungs, and she is loosing her lung function very quickly. She has dropped from the 50s to the 20s in two weeks. They have tried basically everything possible and is now headed back to St. Louis Childrens to go through options, in which her mom says none are very good.

Her mom says she could be re-listed, but the problem is sustaining her long enough for that to happen. It makes me so sad. She is on O2 24/7 now.

Please, if you are one to pray, please do so. If not, please send her and her family all the good vibes you can!

She also has a younger sister with CF who is doing very well. Just another proof that there is much more than gene mutations determining the outcome of one with CF.

Thanks everyone!

06/11/2007 11:13 AM

First, thank you for all your prayers and good wishes.

My sister just received a call from the little girls mom, and they sent her home and told her that she only has 1-3 months to live. They cannot do anything else, and she is not able to get another transplant. They told her parents to take her home and let her live the rest of her life to the fullest.

My heart is broken! How do you tell your 10 year old little girl this? Her little sister, who also has CF, is scared to death of course. She is only 8 years old and watching her sister loose her battle to the same disease that she is fighting.

My daughters are both about the same age as this little girl and her sister. It is just killing me. I am not an emotional person...my husband has probably only seen me cry about 10 times in the 14 years we have been together. But today when I called him, I couldn't help but cry over this sad news.

We are getting together with the little girl and her family in a few weeks when she is back in St. Louis for a follow up. There is a part of me that doesn't know if I will be able to do it because I am afraid I will just break down.

Thanks again. I think I am going to go to the restroom (I am at work) and let out a few tears fall.

kayleesgrandma · Aug 17, 2007

For those who missed the original posting by tammy about this dear, precious child, here are the original postings--pray for the family, for little Kaylee, that she may go in peace, and have no pain--that Jesus will come and scoop her up in His arms, and she will have joy everlasting--and that He may give them comfort in this hour of their need--and in the days to come....

06/05/2007 06:04 PM

There is a little girl named Kaylee who is 10 and had a double lung tx in Oct. 05 who is in need of as many prayer and good thoughts. Her body has rejected her lungs, and she is loosing her lung function very quickly. She has dropped from the 50s to the 20s in two weeks. They have tried basically everything possible and is now headed back to St. Louis Childrens to go through options, in which her mom says none are very good.

Her mom says she could be re-listed, but the problem is sustaining her long enough for that to happen. It makes me so sad. She is on O2 24/7 now.

Please, if you are one to pray, please do so. If not, please send her and her family all the good vibes you can!

She also has a younger sister with CF who is doing very well. Just another proof that there is much more than gene mutations determining the outcome of one with CF.

Thanks everyone!

06/11/2007 11:13 AM

First, thank you for all your prayers and good wishes.

My sister just received a call from the little girls mom, and they sent her home and told her that she only has 1-3 months to live. They cannot do anything else, and she is not able to get another transplant. They told her parents to take her home and let her live the rest of her life to the fullest.

My heart is broken! How do you tell your 10 year old little girl this? Her little sister, who also has CF, is scared to death of course. She is only 8 years old and watching her sister loose her battle to the same disease that she is fighting.

My daughters are both about the same age as this little girl and her sister. It is just killing me. I am not an emotional person...my husband has probably only seen me cry about 10 times in the 14 years we have been together. But today when I called him, I couldn't help but cry over this sad news.

We are getting together with the little girl and her family in a few weeks when she is back in St. Louis for a follow up. There is a part of me that doesn't know if I will be able to do it because I am afraid I will just break down.

Thanks again. I think I am going to go to the restroom (I am at work) and let out a few tears fall.

kayleesgrandma · Aug 17, 2007

For those who missed the original posting by tammy about this dear, precious child, here are the original postings--pray for the family, for little Kaylee, that she may go in peace, and have no pain--that Jesus will come and scoop her up in His arms, and she will have joy everlasting--and that He may give them comfort in this hour of their need--and in the days to come....

06/05/2007 06:04 PM

There is a little girl named Kaylee who is 10 and had a double lung tx in Oct. 05 who is in need of as many prayer and good thoughts. Her body has rejected her lungs, and she is loosing her lung function very quickly. She has dropped from the 50s to the 20s in two weeks. They have tried basically everything possible and is now headed back to St. Louis Childrens to go through options, in which her mom says none are very good.

Her mom says she could be re-listed, but the problem is sustaining her long enough for that to happen. It makes me so sad. She is on O2 24/7 now.

Please, if you are one to pray, please do so. If not, please send her and her family all the good vibes you can!

She also has a younger sister with CF who is doing very well. Just another proof that there is much more than gene mutations determining the outcome of one with CF.

Thanks everyone!

06/11/2007 11:13 AM

First, thank you for all your prayers and good wishes.

My sister just received a call from the little girls mom, and they sent her home and told her that she only has 1-3 months to live. They cannot do anything else, and she is not able to get another transplant. They told her parents to take her home and let her live the rest of her life to the fullest.

My heart is broken! How do you tell your 10 year old little girl this? Her little sister, who also has CF, is scared to death of course. She is only 8 years old and watching her sister loose her battle to the same disease that she is fighting.

My daughters are both about the same age as this little girl and her sister. It is just killing me. I am not an emotional person...my husband has probably only seen me cry about 10 times in the 14 years we have been together. But today when I called him, I couldn't help but cry over this sad news.

We are getting together with the little girl and her family in a few weeks when she is back in St. Louis for a follow up. There is a part of me that doesn't know if I will be able to do it because I am afraid I will just break down.

Thanks again. I think I am going to go to the restroom (I am at work) and let out a few tears fall.

kayleesgrandma · Aug 17, 2007

For those who missed the original posting by tammy about this dear, precious child, here are the original postings--pray for the family, for little Kaylee, that she may go in peace, and have no pain--that Jesus will come and scoop her up in His arms, and she will have joy everlasting--and that He may give them comfort in this hour of their need--and in the days to come....

06/05/2007 06:04 PM

There is a little girl named Kaylee who is 10 and had a double lung tx in Oct. 05 who is in need of as many prayer and good thoughts. Her body has rejected her lungs, and she is loosing her lung function very quickly. She has dropped from the 50s to the 20s in two weeks. They have tried basically everything possible and is now headed back to St. Louis Childrens to go through options, in which her mom says none are very good.

Her mom says she could be re-listed, but the problem is sustaining her long enough for that to happen. It makes me so sad. She is on O2 24/7 now.

Please, if you are one to pray, please do so. If not, please send her and her family all the good vibes you can!

She also has a younger sister with CF who is doing very well. Just another proof that there is much more than gene mutations determining the outcome of one with CF.

Thanks everyone!

06/11/2007 11:13 AM

First, thank you for all your prayers and good wishes.

My sister just received a call from the little girls mom, and they sent her home and told her that she only has 1-3 months to live. They cannot do anything else, and she is not able to get another transplant. They told her parents to take her home and let her live the rest of her life to the fullest.

My heart is broken! How do you tell your 10 year old little girl this? Her little sister, who also has CF, is scared to death of course. She is only 8 years old and watching her sister loose her battle to the same disease that she is fighting.

My daughters are both about the same age as this little girl and her sister. It is just killing me. I am not an emotional person...my husband has probably only seen me cry about 10 times in the 14 years we have been together. But today when I called him, I couldn't help but cry over this sad news.

We are getting together with the little girl and her family in a few weeks when she is back in St. Louis for a follow up. There is a part of me that doesn't know if I will be able to do it because I am afraid I will just break down.

Thanks again. I think I am going to go to the restroom (I am at work) and let out a few tears fall.

jdprecious · Aug 17, 2007