Please help in any way you are able. No amount is too small, it all adds up. You can donate by clicking on the link on the right...please feel free to pass this along. If you are interested in joining out team and walking with us on May 15th, please let me know ASAP, as I need to order shirts.
Suggested amounts based on information about Cheyenne
$9.19: Chey was born on 9/19/2000.
$5.11: Chey weighed 5 pounds 11 ounces when she was born .
$4: Chey weighed 4 pounds at 1 month due to failure to thrive.
$37: the current lifespan predicated for those with CF is 37 years, if born today.
$74: DOUBLE the life expectancy for CF…Chey's going to get there with your help.
$9.50: Chey has beaten this disease for 9 1/2 years already.
$5: The age Chey was when she was finally diagnosed with CF.
$40.05: the number of miles, one way, we drive to St. Louis, Mo.(405 miles per Mapquest) for treatment at St. Louis Children's Hospital.
$2: Chey needs her two lungs to remain healthy to beat this disease and they want to remove one of them.
$60: the number of minutes we spend each day on breathing treatments.
$20: the number of hours Chey spends getting IV treatment.
$50: The number of pills Chey takes daily to keep her healthy.
$100: our dream is for Chey's lung function to be 100% (sadly, its not half of that).
Showing posts with label Cystic Fibrosis. Show all posts
Showing posts with label Cystic Fibrosis. Show all posts
Wednesday, April 14, 2010
Wednesday, February 24, 2010
Antisocial disease!!
I am not very good at updating this blog. Maybe its because I was never very good at keeping a journal as a young girl. I often think of what to say on this blog..funny things I want to share. Sad things I think about. I would love to share the Lord with my readers..lol..I dont really have "readers", or not many anyway.
I know when things are not going so well, more people read what is before them. It is human nature I guess. For me, it is an opportunity to pray specifically for someone/something, but also to see how they are doing and offer encouragement.
There are so many things going on with my youngest child, Cheyenne, right now. She is getting sick again. The doctor put her on an oral antibiotic..three times a day until we go to "club med" on March 15th. Right after she is dicharged from the hospital,a million 45 miles from us, she will go back to St. Louis for treatment again. The local doc, is contacting Cincinnati Children's Hospital to see if there is a surgeon there that can fix the problem with her bronchi instead of just temporarily repairing it..which is causing more damage to other areas. Its enough going into the hospital every three months for a tune up, without having to do the other trips to the hospital too.
I am just rambling, really. It is so hard raising a terminally/chronically ill child. I feel alone most of the time. The only support I/we get is from others that are going through the same thing but not really from family. I dont feel like we get much support from the foundation either. We dont raise enough money, or not rich enough ourselves...we just arent in the clique.
I hate cancer with a passion..it took my sister from me...I have wonderful friends suffering with/because of cancer. There are children everywhere suffering with cancer...dying from cancer. I hate it for them...I really do. If there is ever a good thing associated with a disease...at least they have support groups. They have awareness. They have each other.
Cystic Fibrosis is an antisocial disease. I dont mean that to be funny, but its true. Unless you are in the same boat, you have no clue what I mean. Because of cross contamination, Cysters and Fibros cant be together. My best friend has a daughter with CF. Wecant shouldnt get together because of the risk of cross contamination to the girls. They have so much in common besides CF, but because of CF, they cant get together.
I am sorry to be Debbie Downer...I am just down today!!
I know when things are not going so well, more people read what is before them. It is human nature I guess. For me, it is an opportunity to pray specifically for someone/something, but also to see how they are doing and offer encouragement.
There are so many things going on with my youngest child, Cheyenne, right now. She is getting sick again. The doctor put her on an oral antibiotic..three times a day until we go to "club med" on March 15th. Right after she is dicharged from the hospital,
I am just rambling, really. It is so hard raising a terminally/chronically ill child. I feel alone most of the time. The only support I/we get is from others that are going through the same thing but not really from family. I dont feel like we get much support from the foundation either. We dont raise enough money, or not rich enough ourselves...we just arent in the clique.
I hate cancer with a passion..it took my sister from me...I have wonderful friends suffering with/because of cancer. There are children everywhere suffering with cancer...dying from cancer. I hate it for them...I really do. If there is ever a good thing associated with a disease...at least they have support groups. They have awareness. They have each other.
Cystic Fibrosis is an antisocial disease. I dont mean that to be funny, but its true. Unless you are in the same boat, you have no clue what I mean. Because of cross contamination, Cysters and Fibros cant be together. My best friend has a daughter with CF. We
I am sorry to be Debbie Downer...I am just down today!!
Thursday, July 2, 2009
Thank you to everyone that has been praying for Cheyenne and for the rest of us too. We arrived in St. Louis right on schedule. The flight here was great...absolutely beautiful. The water towers we passed over looked like golf tee's..of course I thought of Savannah.Some of the ground looked like my plowed fields on farmtown..lol..I am hooked. The landing was another matter all together. It was very rough, with alot of turbulance. It was so windy here when we landed, the pilot even said, he was scared for a little while...I am glad we didnt know that till we landed and was safely inside the airport..lol.
Cheyenne has been a real trooper through all of this. I know she is/was scared but, she was very brave about it. We did get blessed with a room at RMH. It is a great place, very beautiful old house.We met with the surgeon on Tuesday, did all the paperwork and pre-admission stuff. The doctor said, after looking at records I brought from home, that he was pretty sure he would have to place a stint, something he didnt want to do.
Tuesday night, we went to the St. Louis Cardinals game against the San Fransico Giants. It was a great experience for all of us. I love baseball and have always wanted to go to a major league game..of course, I wish it had been the Chicago Cubs, but oh well. Just in case anyone is wondering...no, we didnt use any of the money from our church. I was able to get some really cheap tickets online (thanks Heather) and I used some money I already had..lol..I would not have felt right doing it any other way.
We came in this morning for her surgery @ 9:30...now remember this is a child with Cystic Fibrosis..she eats almost constantly and she was unable to eat after 4am. They did not take her into surgery until 1:15. He did the bronch and ascertained that he didnt need to open her chest up, the blockage was opened enough for him to get his equipment in there where it was needed to be. That was an answer to prayer in itself...remember, it was blocked before. He was also able to open it up some more with the dilatation. He didnt have to place a stint. Another thing he had said before that we would have to come back every six weeks to have a dilatation on the bronchus..Today he said....every three MONTHS, another answer to prayer!!!! Chey was very full of "stuff", both in her lungs and her sinuses, and he/they were able to do a good clean out while in there. Cheyenne was in surgery/recovery for 2.5 hours and then brought up to her room. Guess what floor and wing it is....7 West...lol..but it is not just like our home hospital. She was desatting..just like she usually does after she is put under. She went down to 78% at one point, but it didnt last too long. She hovered around 89 for a while. She also experience several episodes of Tachicardia...that just about scared me to death...okay, I just exaggerated, but it did scare me. She didnt wake up totally until 8 pm..so she was without food and water/juice for 24 hours. She was starving, of course...so what is new about that? She is very gunky sounding now and coughing more, but they want her too anyway, so that is good.It has been a very long day and I am tired but I bet Cheyenne will not go to sleep anytime soon.I may meet a very special little family tomorrow...not sure if that is still on or not. I sure hope so but I understand if not.Take care everyone and I will update sometime tomorrow (now that I figured out how to get online..lol).
Love and hugs,Debbie
Cheyenne has been a real trooper through all of this. I know she is/was scared but, she was very brave about it. We did get blessed with a room at RMH. It is a great place, very beautiful old house.We met with the surgeon on Tuesday, did all the paperwork and pre-admission stuff. The doctor said, after looking at records I brought from home, that he was pretty sure he would have to place a stint, something he didnt want to do.
Tuesday night, we went to the St. Louis Cardinals game against the San Fransico Giants. It was a great experience for all of us. I love baseball and have always wanted to go to a major league game..of course, I wish it had been the Chicago Cubs, but oh well. Just in case anyone is wondering...no, we didnt use any of the money from our church. I was able to get some really cheap tickets online (thanks Heather) and I used some money I already had..lol..I would not have felt right doing it any other way.
We came in this morning for her surgery @ 9:30...now remember this is a child with Cystic Fibrosis..she eats almost constantly and she was unable to eat after 4am. They did not take her into surgery until 1:15. He did the bronch and ascertained that he didnt need to open her chest up, the blockage was opened enough for him to get his equipment in there where it was needed to be. That was an answer to prayer in itself...remember, it was blocked before. He was also able to open it up some more with the dilatation. He didnt have to place a stint. Another thing he had said before that we would have to come back every six weeks to have a dilatation on the bronchus..Today he said....every three MONTHS, another answer to prayer!!!! Chey was very full of "stuff", both in her lungs and her sinuses, and he/they were able to do a good clean out while in there. Cheyenne was in surgery/recovery for 2.5 hours and then brought up to her room. Guess what floor and wing it is....7 West...lol..but it is not just like our home hospital. She was desatting..just like she usually does after she is put under. She went down to 78% at one point, but it didnt last too long. She hovered around 89 for a while. She also experience several episodes of Tachicardia...that just about scared me to death...okay, I just exaggerated, but it did scare me. She didnt wake up totally until 8 pm..so she was without food and water/juice for 24 hours. She was starving, of course...so what is new about that? She is very gunky sounding now and coughing more, but they want her too anyway, so that is good.It has been a very long day and I am tired but I bet Cheyenne will not go to sleep anytime soon.I may meet a very special little family tomorrow...not sure if that is still on or not. I sure hope so but I understand if not.Take care everyone and I will update sometime tomorrow (now that I figured out how to get online..lol).
Love and hugs,Debbie
Monday, June 15, 2009
Bright Ideas
Sometime we all have "bright ideas", right? Ciara had a bright idea today. I wish it could happen and I am proud of her for thinking in this fashion.
She said she would like to build a time machine and go back to the very first day Adam and Eve were in the Garden of Eden. She would watch them closely and when the serpant tempted them, she would tell them what happened the first time they didnt heed God's warning and they would listen to her. She said, she wants to do that so there will not be any diseases and her sister wouldn't have Cystic Fibrosis, other kids wouldn't either. There would be no cancer, I would still have my sister and Miss Kim could bend her leg and she wouldnt have Alpha Thalassemia.
Somtime, my children make me cry...today, is one of those times.
She said she would like to build a time machine and go back to the very first day Adam and Eve were in the Garden of Eden. She would watch them closely and when the serpant tempted them, she would tell them what happened the first time they didnt heed God's warning and they would listen to her. She said, she wants to do that so there will not be any diseases and her sister wouldn't have Cystic Fibrosis, other kids wouldn't either. There would be no cancer, I would still have my sister and Miss Kim could bend her leg and she wouldnt have Alpha Thalassemia.
Somtime, my children make me cry...today, is one of those times.
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