tag:blogger.com,1999:blog-57217490513865226332024-02-19T05:27:17.053-06:00Our journey with CFLiving every day to the fullest regardless of the circumstance!!! Giving God the glory for all of it!!!Debbiehttp://www.blogger.com/profile/17030774681941279099noreply@blogger.comBlogger51125tag:blogger.com,1999:blog-5721749051386522633.post-61930305883964069362013-01-11T10:54:00.001-06:002013-01-11T10:54:18.906-06:00Struggling<div dir="ltr" style="text-align: left;" trbidi="on">
I dont know who is struggling more, me or Cheyenne. Cheyenne will have sinus surgery next week. Hopefully, this will help to slow the frequency of her lung infections.<br />
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She has no clue what all it involves and in a way, I am thankful for that. She asked me last night if we can go out for chicken when she is finished. Poor baby!!<br />
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Debbiehttp://www.blogger.com/profile/17030774681941279099noreply@blogger.com0tag:blogger.com,1999:blog-5721749051386522633.post-60549033056106529362013-01-01T20:19:00.001-06:002013-01-01T20:20:33.521-06:00We are still here<div dir="ltr" style="text-align: left;" trbidi="on">
I know its been a while since I posted anything. I am going to try to do a better job this year...even though not many people read it anyway.<br />
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A lot of up and downs in 2012, CF health wise for Cheyenne. We are very hopeful for 2013.</div>
Debbiehttp://www.blogger.com/profile/17030774681941279099noreply@blogger.com0tag:blogger.com,1999:blog-5721749051386522633.post-1743765553887474032012-02-06T22:10:00.001-06:002012-02-06T22:10:23.875-06:00Hi Julie!!!!I just wanted to say hi to my friend...lol.Debbiehttp://www.blogger.com/profile/17030774681941279099noreply@blogger.com0tag:blogger.com,1999:blog-5721749051386522633.post-90871223664709636642010-11-27T14:24:00.001-06:002010-11-27T14:26:49.930-06:00TrialsCheyenne has been struggling with pneumonia and bronchitis since early October. We thought we had it beat but it is back in full force. She started another oral antibiotic and steroids this past Monday night but so far, there is no improvement. She has been sleeping 10 to 12 hours a night and then resting throughout the day as well. Cheyenne is a pretty <strike>hyper </strike>active child, so this is not normal for her at all. I will be calling the clinic on Monday if there is not a huge improvement between now and then. <br />
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I struggle with how her health is, while she takes it in stride. It is all she has ever known. She is doing so much better than she has in the recent past. I know the Lord touched her and she didnt/doesnt have to have her lung removed as we were told 6 months ago and we are so very thankful but I thought she wouldnt ever be sick again..lol..foolish huh? Satan does like to attack. Attack he will..win, he wont!! By His stripes she is healed. Has it reached its full manifestion, not yet, but it is coming.<br />
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We had a great Thanksgiving. I hope you all did, too. My older sister used to come to my house every year for Thanksgiving so it is still pretty hard not having her with me, but I made it semi-okay despite missing her. My sister and I shared cooking duties and we took it to my parents house so our mom didnt have to do anything. She is a klutz like me and is currently nursing a broken foot and broken elbow...well if you are going to do it, do it good, right?Debbiehttp://www.blogger.com/profile/17030774681941279099noreply@blogger.com2tag:blogger.com,1999:blog-5721749051386522633.post-82388344429064808312010-10-23T00:15:00.001-05:002010-10-23T00:17:06.084-05:00Its everywhere<div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgM3smm0pzZma8a1s9PmZm2wLc34kZvCRWYTAtUbGpuxuxanoLeS5OSa942N63YBUn3ovu1aamC600TG6xxFE-K1oEp3EcxXWZwIMx3IwncAolYD7VoCCLqSyvpdy0d3oMsndU7LZ-QXlI8/s1600/cf.jpg" imageanchor="1" style="clear: right; cssfloat: right; float: right; margin-bottom: 1em; margin-left: 1em;"></a></div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">It seems like everywhere you go, everywhere you look..CF is there also. Today, this site I like was giving away free Ipod songs. I dont have an Ipod but thought I would check out the songs anyway. I clicked on the link and this is the first thing I see.</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
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</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgM3smm0pzZma8a1s9PmZm2wLc34kZvCRWYTAtUbGpuxuxanoLeS5OSa942N63YBUn3ovu1aamC600TG6xxFE-K1oEp3EcxXWZwIMx3IwncAolYD7VoCCLqSyvpdy0d3oMsndU7LZ-QXlI8/s1600/cf.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="317" nx="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgM3smm0pzZma8a1s9PmZm2wLc34kZvCRWYTAtUbGpuxuxanoLeS5OSa942N63YBUn3ovu1aamC600TG6xxFE-K1oEp3EcxXWZwIMx3IwncAolYD7VoCCLqSyvpdy0d3oMsndU7LZ-QXlI8/s320/cf.jpg" width="320" /></a></div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
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I have no clue who/what they are but it still caused my heart to skip a beat.<br />
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While getting new glasses for Cheyenne a few months ago, I thought I would look at frames as well. I turned around to the ladies frames and this is the first pair I saw.<br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDevr2tYR0bQqNUJDbfDIhpC9B8LFI8KQVfL40_ST1KyNh-58VSsgj8nxOQFOsDzd4u9IR1tMjvbf1f78iy8Ea6wmZ4lxtSDmQxZ2nxF2ygH3gBMCYz8awojOkLWbfZ_00Dk6M8BoHM5Li/s1600/cf+glasses.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" nx="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDevr2tYR0bQqNUJDbfDIhpC9B8LFI8KQVfL40_ST1KyNh-58VSsgj8nxOQFOsDzd4u9IR1tMjvbf1f78iy8Ea6wmZ4lxtSDmQxZ2nxF2ygH3gBMCYz8awojOkLWbfZ_00Dk6M8BoHM5Li/s320/cf+glasses.jpg" width="320" /></a></div>Again, my heart skipped a beat.<br />
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Even the card in my camera is a CF card. It doesnt matter where you go or what you are doing CF is a part of your life if it is in your life at all. KWIM?<br />
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<span style="font-family: Arial, Helvetica, sans-serif;">Some of you know some of what has been going on..some of you know more, but none of you know everything. I am going to give you a glimpse into the life of Amber Cheyenne Long.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">Cheyenne was born at 32 weeks, perfectly healthy. She required no oxygen nor a stay in the NICU. She came home with us at 2.5 days old.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">When Cheyenne started having respitory problems, digestive troubles and was failure to thrive…the doctors contributed it to being a preemie. By the time she was diagnosed with Cystic Fibrosis at age 5, she had had pneumonia about 20 times.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">Cheyenne has had many hospital stays over the years, which means, she has had many tests to find the many problems she has developed that are directly related to C.F. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">In January of 2009, during a very severe exacerbation (lung infection) her doctor decided to do a bronchoscopy (bronch). At that time, they found out Chey has left main bronchial stenosis. Which is a narrowing of the bronchial tube leading to the lung. She was also diagnosed with liver disease and placed on medicine to help. She was also diagnosed with CFRA (cf related arthritis), she is pre diabetic. At that time it was decided Cheyenne would start being admitted every three months for intensive treatment of her CF. Her lung functions we declining. She had a port a cath implanted in her chest for all of the IV treatments she would be receiving in the future.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">It was decided she would see a surgeon in STL to see what he could do to help. We finally made our first trip in July of 2009. By that time, Chey had had pneumonia almost 40 times. With documented scarring to the lungs. The surgeon decided it was best to just try and use dilatation on the bronchus to open it up. The hopes were…that it would stay open on its own and wouldn’t require any further treatment. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">For the past year, we have been going to into St. Johns every three months for 2 weeks and then doing home IV’s for 2-4 after being discharged. We have been going every three months to STL immediately following her discharge from St Johns.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">In January of this year, the STL doctor said he thought he may be damaging Cheys airway more than it already was and may not be able to do the dilatation any more.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">In March, Chey was admitted for her 3 months stint in St. Johns and it was discovered that she had high blood pressure and was placed on medicine to help control it, bringing her daily medicine count to 18 different medicines to be taken at least once per day. It was also discovered that she had a minimal amount of air in her left lung due to the fact that the bronchus was closed off again. She had a PFT ( pulmonary function test) done and it showed her lung function to be 47%. When that number reaches the 30’s, they start the transplant evaluations.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">April 7th, I took Cheyenne back to STL for the dilatation. Alan couldn’t go because he was just discharged from st johns after having his gall bladder out. The doctor did the dilatation and then came to speak to me. He was very somber. He said it was the worst he had seen it and said he couldn’t go in there anymore because he was making things worse. He said we have two choices.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">1) do nothing more and let the bronchus close off and kill the lung, then remove it…or</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">2) place a stint, which is not recommended because it will cause problems of its own and especially since she has CF, and when it closes off and kills the lung, then we will remove it.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">I didn’t have to decide right then. We are to tell him our decision at our July visit.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">Chey just couldn’t shake a lung infection, continued to have fever….increased cough and sputum, dispite being on antibiotics…orals and IV’s for all of this year.. So, on May 12th, her local CF doctor decided he would go in and see what was going on in her lungs. He said it was terrible in there and we needed to get her to Cincinnati Children’s Hospital ASAP. He said there is a doctor there that does airway reconstruction and he may be able to help Cheyenne. He continued to say, if this doctor couldn’t do anything to help…in the near future we would have to remove her left lung and list her for a unilateral lung transplant. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">So, off to Ohio we go. We get to the children’s hospital on Wednesday..check in and find all the places we need to be on Thursday. Thursday morning Chey has a CT scan. Followed by a PFT. After that, we met with the surgeon to go over the tests results and get a game plan for Fridays surgery.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">The doctor came in and said he spoke with the STL doctor at length. He said STL doc told him he wished he had never gone in there because it was a mess and he was making it worse. He also spoke with the local cf doctor and he told him the same thing.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">We then discussed the tests from that day. The CT scan was absolutely perfect. Her PFT showed her lung funtion to be 80%. He examined her and said he didn’t think he would find anything on Friday when he went in there. He said he wasn’t 100% sure or he would send us home. He said he would go in there and see what was up and the other surgeon would take a look right after him to see if he could help. And they would decide if they were just placing a stint or doing reconstructive surgery.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">On Friday, we went to the surgery unit..checked her in, got situated and waited on the festivities to begin. They said it would take about one hour and 20 minutes. Forty minutes later, they paged us, she was in recovery and ready for visitors. The doctor came in to see us. He said he didn’t know what the other two doctors saw, but he didn’t see anything out of the ordinary. He also said if Chey was his usual patient, he would redo her CF testing because he didn’t see any evidence of it. Lungs are perfect, no scarring whatsoever. The bronchial stenosis is gone. He did say she has some bronchial malacia but it wouldn’t cause her any trouble.</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">Last Wednesday, I got a call from OH…her culture results we totally normal. She has only had one other clear culture result in her life and that was in May. We had a regular CF clinic appointment and was to be admitted to St Johns right after the appointment. Her doctor came in asking if he wasted our time sending us to OH. We told him what the doctor said, I showed him the pictures. He asked what he said about continuing her medicine and cpt therapy. I told him he said it wouldn’t hurt her to continue..he said he didn’t want to stop it cold turkey, we would wait and when she doesn’t get sick, we will start backing it off. He grabbed my hand and Cheyenne’s hand and said LET’S PRAY AND THANK THE LORD FOR HIS HEALING TOUCH!!!!!</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">This blog has been all about CF and sickness...I will continue to update on here from time to time but I am starting a new blog and I want it to be my main blog. I will try and post on it on a more regular basis.</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;">You can find it by clicking </span><a href="http://www.thelongsjourneyhome.blogspot.com/"><span style="font-family: Arial, Helvetica, sans-serif;">here</span></a><span style="font-family: Arial, Helvetica, sans-serif;">. Please follow me as our journey continues...you never know what might happen.</span>Debbiehttp://www.blogger.com/profile/17030774681941279099noreply@blogger.com3tag:blogger.com,1999:blog-5721749051386522633.post-77929045076407016152010-05-03T20:22:00.000-05:002010-05-03T20:22:15.184-05:00Country meets the field!!<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhMQh8z737sjJm4TE2yxaJhVjGjtb8adwttRCnIdkXEBfwg-a8kuyR6-SpQsOsCSEE0YccGhkfvo0Xs_GH8j5SrZ8MOQY_-Zmr-RVORArIXEm3vqOvUg_2cGa7skUSBQGw-GObIjT4x25K5/s1600/Brent's+pic.jpg"><img style="MARGIN: 0px 10px 10px 0px; FLOAT: left; CLEAR: both" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhMQh8z737sjJm4TE2yxaJhVjGjtb8adwttRCnIdkXEBfwg-a8kuyR6-SpQsOsCSEE0YccGhkfvo0Xs_GH8j5SrZ8MOQY_-Zmr-RVORArIXEm3vqOvUg_2cGa7skUSBQGw-GObIjT4x25K5/s320/Brent's+pic.jpg" /></a> A fun contest on Riggs family blog.<div style='clear:both; text-align:LEFT'><a href='http://picasa.google.com/blogger/' target='ext'><img src='http://photos1.blogger.com/pbp.gif' alt='Posted by Picasa' style='border: 0px none ; padding: 0px; background: transparent none repeat scroll 0% 50%; -moz-background-clip: initial; -moz-background-origin: initial; -moz-background-inline-policy: initial;' align='middle' border='0' /></a></div>Debbiehttp://www.blogger.com/profile/17030774681941279099noreply@blogger.com1tag:blogger.com,1999:blog-5721749051386522633.post-38938446693332233862010-05-03T16:38:00.000-05:002010-05-03T16:38:15.837-05:00NutDucky, how did she get that name?When Cheyenne was born, her hair stuck up all over. It didnt matter what you did to it, it stuck straight up anyway. The director of the adoption agency came into the hospital nursery, took one look at her and said her hair looks like a duck. So we called her Ducky. When she was a little older, I started calling her my Peanut, because she was so small. My older daughter Princess aka Ciara, said we should call her NutDucky instead...so 9.5 years later, she is still NutDucky.Debbiehttp://www.blogger.com/profile/17030774681941279099noreply@blogger.com0tag:blogger.com,1999:blog-5721749051386522633.post-63224194225955077572010-04-18T22:27:00.002-05:002010-04-18T22:27:42.355-05:00kick in the stomachThe clinic visit yesterday was a lot worse than I expected it to be. The plus side is...she is off IV meds and on a strong oral..but only for a few days. He is waiting on her culture results to come back to decide what to put her on. I am sad to say, that is the only plus to the whole visit. He thinks she is culturing one of the big bugs..if the culture results come back not showing anything, he will put her in for a bronch and see what is going on. <br />
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He said it is imperative we get to Cincinnati ASAP..he feels we will not see any improvement until we go...that is based on them being able to help her...if not...he said he doesnt know why some cf patients have it worse off than others but we just have to do what we can...I told him it wasnt as easy as all that from where I was sitting. I felt like I was kicked in the gut.<br />
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Please pray they get all the details worked out with insurance and scheduling and we have the resources needed to go to Cincinatti.<br />
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Thank you,<br />
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DebbieDebbiehttp://www.blogger.com/profile/17030774681941279099noreply@blogger.com1tag:blogger.com,1999:blog-5721749051386522633.post-82037027036230433492010-04-14T10:19:00.004-05:002010-04-14T11:14:15.772-05:00Great Strides for Cystic FibrosisPlease 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.<br />
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Suggested amounts based on information about Cheyenne<br />
$9.19: Chey was born on 9/19/2000. <br />
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$5.11: Chey weighed 5 pounds 11 ounces when she was born .<br />
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$4: Chey weighed 4 pounds at 1 month due to failure to thrive.<br />
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$37: the current lifespan predicated for those with CF is 37 years, if born today. <br />
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$74: DOUBLE the life expectancy for CF…Chey's going to get there with your help.<br />
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$9.50: Chey has beaten this disease for 9 1/2 years already.<br />
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$5: The age Chey was when she was finally diagnosed with CF.<br />
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$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.<br />
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$2: Chey needs her two lungs to remain healthy to beat this disease and they want to remove one of them.<br />
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$60: the number of minutes we spend each day on breathing treatments. <br />
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$20: the number of hours Chey spends getting IV treatment. <br />
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$50: The number of pills Chey takes daily to keep her healthy. <br />
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$100: our dream is for Chey's lung function to be 100% (sadly, its not half of that).Debbiehttp://www.blogger.com/profile/17030774681941279099noreply@blogger.com2tag:blogger.com,1999:blog-5721749051386522633.post-70982406609727453552010-04-06T21:41:00.000-05:002010-04-06T21:41:52.570-05:00Life continuesI picked Alan up from the hospital today. He is doing well but sore. He is not at all happy about staying behind while Cheyenne and I drive to St. Louis in a couple of hours. I really have no choice. His doctor said he cant go and Chey's doctor said I cant postpone her surgery.<br />
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I will update after we return in a day or so.Debbiehttp://www.blogger.com/profile/17030774681941279099noreply@blogger.com0tag:blogger.com,1999:blog-5721749051386522633.post-87317992470868193682010-04-01T09:52:00.000-05:002010-04-01T09:52:15.067-05:00Home IV'sHi all..Cheyenne is doing fairly well. She is getting really bored sitting around the house since she is feeling better. We went to the doctor on Tuesday for a post hospital/IV check. There are some concerns so he ordered blood work..we are still waiting to hear about the results. She will continue on with home IV's for one more week.<br />
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Cheyenne wants to show rabbits in 4H so I told her she had to clear it with her doctor first. She asked him and to my amazement, he said it would be okay..but she had to understand, if she started gettting sick..they would have to go. Since she is sick so much, I am not sure how we are going to know if it is from the rabbit(s) or not..lol.<br />
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Both girls are in 4H and have a Speech and Demonstration contest tonight. I am so shocked Cheyenne is planning on giving a speech. She found out last night that she will be alone on a big stage, so we will see if she really does give her speech...lol. Ciara is doing a demonstration and she is not shy at all so I hope we dont have to tell her to get off the stage..lol.<br />
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Chris is doing pretty good. It turned out to be two bones..one is chipped the other is fractured. He is stubborn (gets it from his dad) and has already returned to work.<br />
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My grandmother was released from the hospital. She is doing pretty good, too. I want to go see her but its not possible right now.<br />
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I found out last night that a friend of mine from forEVER ago passed away. I have known him for about 32 years..we had some good times and he will be missed.<br />
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Another friend of mine needs prayer for her grandson. He is 8 months old. He fell and thought he had a concussion. He doesnt, but some of his other tests are coming back "not normal" so they are trying to find out what is wrong with him.<br />
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Love and hugs,Debbiehttp://www.blogger.com/profile/17030774681941279099noreply@blogger.com1tag:blogger.com,1999:blog-5721749051386522633.post-53776238599009953892010-02-24T11:30:00.001-06:002010-02-24T12:45:47.239-06:00Antisocial 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. <br />
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.<br />
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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, <strike>a million</strike> 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.<br />
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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. <br />
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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.<br />
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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 <strike>cant</strike> shouldnt get together because of the risk of cross contamination to the girls. They have so much in common <strike>besides</strike> <strike>CF,</strike> but because of CF, they cant get together.<br />
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I am sorry to be Debbie Downer...I am just down today!!Debbiehttp://www.blogger.com/profile/17030774681941279099noreply@blogger.com1tag:blogger.com,1999:blog-5721749051386522633.post-20837172027465218152010-01-17T23:29:00.000-06:002010-01-17T23:29:45.541-06:00Firefly Photo Jewelry: { Hope for Haiti }<a href="http://fireflyphotojewelry.blogspot.com/2010/01/hope-for-haiti_17.html">Firefly Photo Jewelry: { Hope for Haiti }</a> Shawna is having a drawing for a chance to win your choice of one of these adorable necklaces. Please check out her blog for your way to help and how you may win.Debbiehttp://www.blogger.com/profile/17030774681941279099noreply@blogger.com1tag:blogger.com,1999:blog-5721749051386522633.post-76313096010422701892010-01-11T23:28:00.000-06:002010-01-11T23:28:56.954-06:00The Life of a parent to a child with CF (Cystic Fibrosis)Every day is a different day - you hold your breath and curl your toes each time they cough, hoping and praying it's not a precursor to something worse. Like any parent, you sit up at night when they're sick with fevers - but amplify this by holding the nebulizer mouthpiece of a snoozing or coughing child while you stare sleepily into the dark night. While the rest of the world sleeps, some tiptoe quietly into their child's bedroom to infuse a 12:00 a.m. IV treatment. Some parents kiss their children good night after reading a storybook and supervising teeth brushing - while some parents of PWCF also hook up a nightly tube feeding. This of course is after the nightly breathing treatment and favored method of airway clearance, e.g. clapping, flutter, vest, pep mask, etc. During these times, you learn how to operate on less sleep - and with an eye on the medical equipment surrounding you, wonder if it's possible to really take coffee intravenously... You learn to analyze the minute details of the monochromatic contents in a spit cup - and nervously watch for flecks of blood. You grit your teeth if you hear them cough up what sounds like a ton of gunk - to learn they spit into the sink and washed it down before you could check it. Changing the diapers of a baby with CF can sometimes be an exercise in gag control... Your toilets might plug up on a regular basis and you consider buying stock in Lysol products and whomever makes Cottonelle and Charmin... Parents of CWCF rejoice at each inch attained in height and every pound gained in weight - and cry at each ounce lost. School-age children take tests in school - our kids do too, but they also take blood tests, sputum tests and pulmonary function tests - some have bone density tests. School children have photos made each year - so do our kids, but they also get a photo taken of their lungs - and sometimes their sinuses and intestines too. Some endure finger sticks if diabetes is present. We aren't lucky enough to have a grading system of A-F - we have to figure out what numbers best apply to our child and hope human error hasn't cost us an extra stay in the hospital or the dreaded news the child is now resistant to a certain antibiotic. You learn how to hide enzymes in the foods of recalcitrant infants and tots. You learn to read labels for the highest calorie content. You learn the meaning of a well-balanced diet and your expertise in food preparation begins to rival that of Martha Stewart - presentation is 90% of the art of feeding any child. Anytime a Certified Freight truck goes by - you get a lump in your throat. Darn those big red and green CF initials anyway... Aren't we allowed to forget for just one minute? But on the other hand - you become a more compassionate, empathetic, and patient person. Despite trials, you have the opportunity to attain the golden awareness that everything you say - everything you do or don't do - really makes a difference in the life of your children. Every moment is precious. Even the smelly moments... Being the parent of a child with CF enables you to develop an inquisitive and scientific mind - scoping out information about genes, cells, organisms, herbs and treatments. Even if we weren't good at science when we were kids - just look at what we can do now! You also become adept at handling insurance and hospitalization forms... You learn to be gracious and tactful even when you don't want to be, like when a stranger or your child's new barber comments on your child's cold, or a clothing salesperson comments upon sizing difficulties because your child is too thin for his sleeve length... You learn how to be assertive so doctors and staff will listen - really listen to what it is you and your child need, because they are not gods nor mind readers... And even though you try not to push the envelope on the words hope and cure - they are always in your heart. Most every parent sleeps with one ear attuned to the littlest sound - but some parents of a CWCF listen for absence of sound, Is the oxygen tank working? Why did s/he suddenly stop coughing? Why isn't the air purifier humming? Sometimes you find yourself doing a load of laundry in the middle of the night - after your child has coughed so much they've finally vomited on their sheets and blankets - or fevers have soaked everything. In the beginning, you wonder, Is this something I should call the doctor to report? Then you learn to trust your instincts - you know when to call the doctor - and you want to be able to go straight to the top instead of dealing with a revolving door of telephone receptionists or approval from an HMO. As a parent of a CWCF your spelling and vocabulary improves. While your friend's minds are turning to mush from Barney and Mr. Rogers, you're learning to pronounce and spell words like: pseudomonas, aspergillus, and cephalosporins. You get a crash course in physiology and biology. You learn about clubbed fingers, oxygen and carbon dioxide exchange, and the role of the pancreas... ...And Part II of the sex ed talk you have with your teen takes on the added vocabulary word: vas deferens - along with the reminder, Just because you might not be able to procreate, doesn't mean you can go out and test the theory... your risk of contracting a sexually transmitted disease is the same as others in your peer group. After Christmas, while some are taking advantage of sales, you hit the pharmacy to pre-buy meds to take advantage of year-end tax deductions. You ignore the jibes of your friends who think you're obsessive-compulsive because you wash your hands frequently. You begin to resent the fact you have to remind health practitioners to wash their hands before touching your child or the things in his hospital room. You seethe when other parents send their kids to school sniffling, their noses caked with green crud. You buddy-up to the school secretary so when your child wakes up sick, she doesn't get tired of you calling and asking, So... just what is going around the schools right now? You teach your child to share - but stand aghast when your son's girlfriend shares her pre-chewed gum with him. At ticker-tape speed, your mind reels off the cost of antibiotics and vitamin c... You understand that when friends and relatives ask about the well-being of the CWCF, they don't mean to exclude the existence of your child w/o CF. Sometimes you feel like you're in a 3-ring circus. You juggle and balance home, work, hospital, and siblings. You often walk a tight-rope of emotions. You're in the lion's cage facing home-health and insurance issues (who else would hire so many Bozos?). You never hear about people running away to join a home - you wonder why people would run away to join a circus... You worry about your CWCF on their first sleepover. You count your blessings when the parent of your child's friend says, Show me how to do cpt so you can get away this weekend. In some parts of the world, there are certain rites of passage. Having a CWCF is also being aware of rates of passage: height/weight rates, O2 rates, sterility rates, insurance rates, mortality rates, divorce rates... And when people quote, It takes a village to raise a child, you realize just how big your village is, and how very grateful you are to have so many caring and competent villagers on your side.Debbiehttp://www.blogger.com/profile/17030774681941279099noreply@blogger.com2tag:blogger.com,1999:blog-5721749051386522633.post-19697145326506170432010-01-07T00:27:00.000-06:002010-01-07T00:27:33.345-06:00The other shoe dropped....HARD!!We got home last night (Tuesday). I thought I would just wait to update until after we went to Chey's local CF doctor today.<br />
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Cheyenne's PFT's came up 10% since they opened the bronchus back up. Dr. C said she can stop the IV's, at least for a few days, to see how she does. Her cough is increasing again, but he wants to wait and see if it is just because of the procedure she had done. He also said she can go back to school on Monday. She is so happy about that since she hasnt been since the 1st of December.<br />
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Doc also said he had a long talk with the surgeon in St. Louis on Monday. They were both discouraged because of the condition of the bronchus. Apparently, it was totally closed off and in light of the new developement, they both feel, Cheyenne will need major surgery to see if they can correct some of the damage that is causing all this problem. Neither of the two docs are able to do this surgery, so local doc will be in contact with Cincinnati Children's, to see if someone there can help her.<br />
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Two weeks ago, one shoe dropped with the discovery of the hypertension/heart thing. Today, the other shoe dropped...along with my heart.<br />
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One year ago today, Cheyenne got a port. At the time, I thought that was a very bad thing. I stand corrected.Debbiehttp://www.blogger.com/profile/17030774681941279099noreply@blogger.com1tag:blogger.com,1999:blog-5721749051386522633.post-21778671412520590172010-01-05T22:22:00.000-06:002010-01-05T22:22:00.561-06:00Long story short....Chey did great...didnt get admitted...the bronchus was narrowed down quite a bit so he opened it back up. He said there is another problem and is not sure which of the two is causing the other.<br />
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It would be major, major surgery to correct this new found problem so right now, we are doing nothing but waiting.<br />
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We are now home from St. Louis. Cheyenne has an appointment with her CF doctor tomorrow. Hopefully, he will say she can stop the IV's and return to school. It has been one month already.Debbiehttp://www.blogger.com/profile/17030774681941279099noreply@blogger.com0tag:blogger.com,1999:blog-5721749051386522633.post-30484296907941250042010-01-01T23:44:00.001-06:002010-01-01T23:51:59.436-06:00Happy New Year!!I hope everyone had a great time while staying safe! We went over to our pastor's house for food, fun and fellowship. It was a great time..Julie, I finally played Bunco!! I got the biggest looser award..Yea me!<br />
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Chey is still on her IV's, doing pretty good. Still has a very wet sounding cough but only occasionally. I am getting pretty good at all the IV stuff and remembering to monitor her blood pressure. <br />
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I had previously said they had done a bunch of tests while we were in the hospital and all the results were coming back normal or close to it. Well, that stopped with the echo.<br />
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The echo showed she has Mild Aortic Stenosis and Left Ventricular Hypertrophy. Hence the reason for the blood pressure problems. He said, while he is not dismissing this as a mild problem, we have bigger problems right now and that is the loss of lung function. He is pretty sure the cause is the Left Main Bronchial Stenosis.<br />
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We are gearing up to leave on Sunday for St. Louis..Chey has to be at Children's on Monday morning at 5:45 AM. I have been on the phone with same day surgery and the surgeons office for the last few days trying to get things straightened out. Same day surgery thinks she is too sick to have surgery..surgeons office said not to worry about what they said...she is so sick because she needs the surgery. The doctors associate also said we may be at a point in treatment that we need to start seeing the CF team in St. Louis. I am not so sure I like that idea for several reasons. 1) We would be saying our local doc is not good enough to care for her. 2) she is so far progressed that local doc cant care for her. 3) we are back to being close enough for them to use the T word.<br />
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We also discussed the fact that the every 3 months thing is not working and they may need to do something different as far as opening the bronchus. She did also say, the main doctor may still want to do the dilitation and just do it every two months. Which would work a little easier for us since her local CF doc wants her to start going into the hospital every three months for a tuneup. He said if she is not sick, it would be for 2 weeks, if she is..it would be for 3 weeks.<br />
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I really dont know how people cope with chronic illness and such if they dont know the Lord. Sometimes it seems too hard with Him. We have to trust in Him....and we do!!!<br />
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I appreciate your prayers and kind words..I will update on Monday after Cheys surgery.<br />
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Love and hugs,<br />
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DebbieDebbiehttp://www.blogger.com/profile/17030774681941279099noreply@blogger.com0tag:blogger.com,1999:blog-5721749051386522633.post-67472274583792121482009-12-20T21:28:00.001-06:002009-12-20T21:29:17.230-06:00Getting ParoledWe have been here for two weeks (today). Things have definately improved and she is supposed to get to go home on Tuesday, providing we get good results on the echo. The tests on her kidneys, came back good except for high protein in her urine. He is not overly concerned right now and will check it again in three months, when she is not sick. <br />
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Chey is still having problems with her blood pressure so we will have to monitor it at home. He wants me to use a monitor that has a print out or records the readings. So I will have to find one that I can afford and get it before we go home. She will continue her blood pressure medicine, also.<br />
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He added a new medicine for her CFRA (Cystic Fibrosis Related Arthritis). So far, it is not helping too much...but we will see.<br />
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She will also go home on two I.V. meds and will stay on them until we return from St. Louis. She has an appointment on the 4th.Debbiehttp://www.blogger.com/profile/17030774681941279099noreply@blogger.com0tag:blogger.com,1999:blog-5721749051386522633.post-75161050763762254632009-12-16T18:31:00.000-06:002009-12-16T18:31:54.690-06:00Day 10 in the hospitalWe are still here...still doing poorly. My beautiful girl is getting upset because she is still here. The doctor said he will decide on Monday if we are being transferred to St. Louis, Mo. We have an appointment for January 4th..but doc doesnt know if this can wait.Debbiehttp://www.blogger.com/profile/17030774681941279099noreply@blogger.com1tag:blogger.com,1999:blog-5721749051386522633.post-5195339184954344902009-12-13T21:59:00.000-06:002009-12-13T21:59:22.768-06:00Too much<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgYebmm5yAu1is5WEIfcb6mA_MEsllma82HSHGHxzXt7y0aknzPNb_qrSscQEBonYN6HI1ULgUoawIt8-4CCYMgwfSoQHuGywh72cEMfWUxXTLx-LaEhHgmk_wTg3IFTs1ey7a0wOzxULnt/s1600-h/feeling+better.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" ps="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgYebmm5yAu1is5WEIfcb6mA_MEsllma82HSHGHxzXt7y0aknzPNb_qrSscQEBonYN6HI1ULgUoawIt8-4CCYMgwfSoQHuGywh72cEMfWUxXTLx-LaEhHgmk_wTg3IFTs1ey7a0wOzxULnt/s320/feeling+better.jpg" /></a><br />
</div>Baby girl was feeling better today and I think she over did it. I had to share this pic of her from earlier today. Now she is passed out and has been for almost 2 hours and it is just now 10PM. She is holding some cookies, in case its hard to tell.Debbiehttp://www.blogger.com/profile/17030774681941279099noreply@blogger.com2tag:blogger.com,1999:blog-5721749051386522633.post-26215076302261641272009-12-12T22:33:00.001-06:002009-12-13T01:03:35.150-06:00Blog Design Giveaway!! You could winBloggy Blog Designz is having ANOTHER Holiday Giveaway!!! Last week every entrant won something, so they decided to do it all over again! They are giving away blog designs and all kinds of goodies. Plus ALL entrants will receive 20%off their purchase through the end of the year! Be sure to check out their website for more information, or to enter yourself. Take a look at their portfolio and packages to see what you want for Christmas ;) With 6 giveaways this week, who knows whats in store for next week? <br />
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The first 5 entrants will receive a $10 giftcard. The giveaway will close on Dec. 13th, so be sure to have your posts done and comments left by midnight! Good Luck to everyone! We are so excited. Merry (early) Christmas!<br />
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(Our Design List is open after January 1. Discounts from this giveaway do not apply to designz in progress)<br />
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http://www.bloggyblogdesignz.com/2009/12/another-giveaway.htmlDebbiehttp://www.blogger.com/profile/17030774681941279099noreply@blogger.com0tag:blogger.com,1999:blog-5721749051386522633.post-18790067415705358762009-12-12T13:41:00.000-06:002009-12-12T13:41:03.000-06:00Hospital photos.<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhSLQAwUFZ1_1CHABR7r6EFZ12ZspMki2X-3bCxFxCXpoBviJX-kHEM7kOO-pu9gLPQKfRTmXySRhyphenhyphena4SNGv7KxF2AQvR7b2IEPdS9d3U3bIW7ba2LagNk85EjGJguoUsXUF8mYl_mKOTKa/s1600-h/IMG_4762%5B1%5D.jpg" imageanchor="1" style="clear: left; cssfloat: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" ps="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhSLQAwUFZ1_1CHABR7r6EFZ12ZspMki2X-3bCxFxCXpoBviJX-kHEM7kOO-pu9gLPQKfRTmXySRhyphenhyphena4SNGv7KxF2AQvR7b2IEPdS9d3U3bIW7ba2LagNk85EjGJguoUsXUF8mYl_mKOTKa/s320/IMG_4762%5B1%5D.jpg" /></a>I love the view from our window. <br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhOs-vzfTMoyZV1X-EdLVCDh0IFYR9gNRHfIcG0kmu6c7vTKkITqQXepCj54vhTdXfnhc5ovFPsnnUxNVQElzfJoUA_1FwD1jywb1TrgcWfm-hzoKSwehNPvL-Ud9vsqFWzW76N-XE22hVj/s1600-h/IMG_4744%5B2%5D.jpg" imageanchor="1" style="clear: left; cssfloat: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" ps="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhOs-vzfTMoyZV1X-EdLVCDh0IFYR9gNRHfIcG0kmu6c7vTKkITqQXepCj54vhTdXfnhc5ovFPsnnUxNVQElzfJoUA_1FwD1jywb1TrgcWfm-hzoKSwehNPvL-Ud9vsqFWzW76N-XE22hVj/s320/IMG_4744%5B2%5D.jpg" /></a> <br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiUw84Un9Iem2M5Sp2ELC4Qd18FewPydq4Yo_n1jneoFoaWBtDOFa_DPGBjfUB85-JmFz7aORsAKhb_hJLTmHmLGz8TI5iv_OWzHByT-JPaBwx9jpvc2HzZTvsSCXPoMvFlxTYLPmC8Pw08/s1600-h/IMG_4743%5B1%5D.jpg" imageanchor="1" style="clear: left; cssfloat: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" ps="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiUw84Un9Iem2M5Sp2ELC4Qd18FewPydq4Yo_n1jneoFoaWBtDOFa_DPGBjfUB85-JmFz7aORsAKhb_hJLTmHmLGz8TI5iv_OWzHByT-JPaBwx9jpvc2HzZTvsSCXPoMvFlxTYLPmC8Pw08/s320/IMG_4743%5B1%5D.jpg" /></a>Killing time painting!!<br />
</div>Debbiehttp://www.blogger.com/profile/17030774681941279099noreply@blogger.com1tag:blogger.com,1999:blog-5721749051386522633.post-9525417570212206762009-12-08T00:41:00.000-06:002009-12-08T00:41:20.459-06:00Chey has been admitted We actually came in on Sunday, but I am not good at updating this blog. She is doing pretty well now. The only thing we know right now is she has pnuemonia and an ear infection. We should know more tomorrow.Debbiehttp://www.blogger.com/profile/17030774681941279099noreply@blogger.com0tag:blogger.com,1999:blog-5721749051386522633.post-28101158184419697072009-10-12T10:35:00.001-05:002009-10-12T10:37:51.911-05:00Surgery update<span style="font-family:lucida grande;color:#663300;"><strong>OMGoodness...We had a major crisis yesterday (grandbaby mama drama) and we also had a death in the family, so that delayed my update. It has been so crazy around here I havent had a chance to update till now.</strong></span><br /><span style="font-family:lucida grande;color:#663300;"><strong></strong></span><br /><span style="font-family:lucida grande;color:#663300;"><strong>Cheyenne's surgery went great. It was closed again, so he had to re-open it. Dr. Huddleston says it will need to be re-opened every three months and he doesnt think it will ever be any longer in between and may become a shorter length of time in between. He doesnt want to do the stint right now because the disadvantages outway the advantages, so we will continue to go to St. Louis every three months for about a year and then place the stint at that time. That is what the doctor has said will happen....well, he isnt THE PHYSICIAN, so we will see what HE wants to do and follow that plan. </strong></span><br /><span style="font-family:lucida grande;color:#663300;"><strong></strong></span><br /><span style="font-family:lucida grande;color:#663300;"><strong>We are home now and Cheyenne is doing great and is in school as I type this.We will follow up with the local CF doctor the end of the week and by then they should have the culture results, so we will see if she will require I.V. antibiotics.</strong></span><br /><span style="font-family:lucida grande;color:#663300;"><strong></strong></span><br /><span style="font-family:lucida grande;color:#663300;"><strong>Please keep my sister, her husband, daughter and mother n law in your prayers. </strong></span><br /><br /><span style="font-family:lucida grande;color:#663300;"><strong>Love and hugs to all and a great big thank you for all the prayers.</strong></span>Debbiehttp://www.blogger.com/profile/17030774681941279099noreply@blogger.com1