tag:blogger.com,1999:blog-7399327306744554324.post8449209768228585228..comments2023-12-24T04:06:28.281-08:00Comments on a day in the life of a CF mom: In the beginning...Lucy's momhttp://www.blogger.com/profile/06126095986715998848noreply@blogger.comBlogger13125tag:blogger.com,1999:blog-7399327306744554324.post-12080845904373630152011-11-27T21:12:53.400-08:002011-11-27T21:12:53.400-08:00I plan on reading much more of your blog. You have...I plan on reading much more of your blog. You have a very positive, upbeat way to your writing. Your daughter is lucky to have such a caring mother. I have never met anyone with CF, in fact I know very little about it. I plan to learn more about it through your blog. I'll pray for a cure for your family. I'd say enjoy every moment with your daughter, but I'm sure you already do! :DAnonymoushttps://www.blogger.com/profile/14947287064200874571noreply@blogger.comtag:blogger.com,1999:blog-7399327306744554324.post-51366303193955380532011-11-05T23:12:50.382-07:002011-11-05T23:12:50.382-07:00As a stepfather to a cf child I say Thank you for ...As a stepfather to a cf child I say Thank you for this page. It gives a great account for the daily lives of parents and the children. It also shows that there is a happy ending to these stories and that we as parents can enjoy the lives of our children for the fact they are children instead of what the mutation is doing to them. Again THANK YOU from Georgia.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-7399327306744554324.post-70416955754740048412011-07-04T14:34:04.748-07:002011-07-04T14:34:04.748-07:00Hello Kacie, I was touched by the pure love and jo...Hello Kacie, I was touched by the pure love and joy that comes from every word you have written, and I did cry a lot at the same time :) You and Lucy are blessed to have each other, i admire your strength and optimism and i was amazed how unbelievably brave Lucy is when reading the story for the blood test! She is so beautiful and wonderful, I wish her to be very healthy, to grow into a wonderful young lady that you could watch and adore every day! <br />All the best wishes from distant Bulgaria,<br />MilenaAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-7399327306744554324.post-58899162900414611652011-05-03T18:47:21.243-07:002011-05-03T18:47:21.243-07:00Kacie, I am not the mother of a child with CF, my ...Kacie, I am not the mother of a child with CF, my daughter has SLE. My daughter has a son with SLE and ectodermal dysplasia. I found your blog by accident, perhaps, if these things really are accidents.<br />Your strength and determination is very moving. Lucy is blessed to be born to a woman who sees the potential in her child, a woman who sees joy.<br />I believe God gives us this attitude to just 'do it' in caring for our children. When my daughter was small theree wasn't any time to look around and wonder what would become of all of this. Just time enough to 'do it' and enjoy those wonderful smiles. I have SLE and I have taught school for almost 30 years. Some people have said we are stubborn but I don't think so. I think, like you, we just have a different appreciation for life.<br />As strange as it sounds we are among the lucky ones.<br />God bless you<br />KarenKaren Ardagnahttp://www.ardagna.netnoreply@blogger.comtag:blogger.com,1999:blog-7399327306744554324.post-58917236055712465272010-04-28T23:23:26.582-07:002010-04-28T23:23:26.582-07:00Ahhh, Kacie, this has made me weep. Jillian, who i...Ahhh, Kacie, this has made me weep. Jillian, who is close to 9 months now, has CF, but she wasn't diagnosed until about 2 months. She's doing well so far. Your photo of Lucy's belly at birth did me in. Waterworks.<br /><br />I just read your car wash post and it made me cry too. Guess maybe I should head to bed, LOL.<br /><br />Take care! Hugs to Lucy.Unknownhttps://www.blogger.com/profile/10238240578939546529noreply@blogger.comtag:blogger.com,1999:blog-7399327306744554324.post-25308398360616643732010-03-03T18:04:51.632-08:002010-03-03T18:04:51.632-08:00Thank you for your blog. Our stories are very simi...Thank you for your blog. Our stories are very similar. My son is now 24 months old and was diagnosed with CF when he was 4 weeks old. Initially, when I received the news I thought I would never get over it and that my life would never be the same. I remember thinking " I will never smile again in my life, what a shame" and actually feeling it. <br /><br />Little did I know that after digesting the news and moving on I have not stopped smiling. My son, the love of my life makes me laugh and smile always. He is the smartest and sweetest little person ever. Before him, I had never smiled so frequently as I do now. <br /><br />If someone would have shown me a picture of my life today it would have saved me months of crying myself to sleep. We live a normal life. I give him his meds and take to his regular checkups at the CF clinic (every 2-3 months) Besides that....nothing is different then any other 2 year old. He has been hospitalized only once for 4 days due to an intestinal obstruction that was resolved without surgery. Yes, it wasn't fun being at the hospital for 4 days, but it only made me stronger. These experiences only make us stronger and better human beings. <br /><br />We are lucky to have had kids with CF born at this time. Meds and research on this condition are advancing so much! I do strongly believe that both your daughter and my son will see and be part of the cure for CF. <br /><br />I will continue reading your blog. You have inspired me to share a piece of my story on this comment and for that I thank you. It's the first time I actually write somewhere about him, me, and what we have been through. It actually feels good and somewhat liberating.<br /><br />Keep writing! I will be here reading : ) I wish you nothing but the best..... - A FanAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-7399327306744554324.post-42947189737741038872009-12-24T07:15:54.259-08:002009-12-24T07:15:54.259-08:00Hearing your story really resonates with me. My d...Hearing your story really resonates with me. My daughter was also diagnosed at 2 weeks old and now at almost 4 months I am just starting to journal my acceptance of all that is happening to us. Thank-you for sharing. It helps so much to know that there are people out there who have experienced the same thing we are going through.CanadianCFmomhttp://canadiancfmom.wordpress.com/noreply@blogger.comtag:blogger.com,1999:blog-7399327306744554324.post-43727133732320560112009-12-11T13:30:22.150-08:002009-12-11T13:30:22.150-08:00Thank you for sharing. I am new to the world of C...Thank you for sharing. I am new to the world of CF. My 2 month old was just diagnosed and it has been a rollercoaster ride so far. It has been so helpful to read the blogs of others who have been there too. I started my own blog and would like to connect with other cf moms! Stop on by.<br />www.teamcap.blogspot.com<br />AmyAnonymoushttps://www.blogger.com/profile/03279966678682706356noreply@blogger.comtag:blogger.com,1999:blog-7399327306744554324.post-69114063022130976502009-11-04T09:20:32.744-08:002009-11-04T09:20:32.744-08:00I want to thank you for what you are willing to sh...I want to thank you for what you are willing to share on your blog. I am a mom with CF. My husband is not a carrier, so luckily our daughter was spared. I admire your strength and all that you do for your beautiful daughter.Jenny Livingstonhttps://www.blogger.com/profile/03492192240694173631noreply@blogger.comtag:blogger.com,1999:blog-7399327306744554324.post-26768674591416010062009-09-06T20:12:41.362-07:002009-09-06T20:12:41.362-07:00Hi Kacie,
My name is Margaux and my son was born ...Hi Kacie,<br /><br />My name is Margaux and my son was born with CF. I found your blog through other CF moms blogs and I thought I'd introduce myself. We have a lot in common. My son was prenatally diagnosed with CF but when he was born at Sutter Memorial (the hospital I assume Lucy had her surgery at) he had a blockage. Dr. Greenholtz operated on him at 30-hours-old to clear his MI. We were in the hospital for 2 1/2 weeks so I know what a stay in the NICU is like. I currently live in Santa Rosa but will be moving back to the Sac area at the end of the month with my husband and son. I was seeing Dr. Perez but when we moved I ended up at the UCSF CF clinic and I plan on staying with them. I love meeting other CF moms for the support and love seeing that you are in the same area. I'd love to meet up sometime. Let me know!<br /><br />Margaux<br />www.margauxandryanhughes.blogspot.comMHugheshttps://www.blogger.com/profile/10877795396247295099noreply@blogger.comtag:blogger.com,1999:blog-7399327306744554324.post-41644041544125659322009-08-18T20:41:47.108-07:002009-08-18T20:41:47.108-07:00I am not a mom of a child with CF (at least I dont...I am not a mom of a child with CF (at least I dont think, I am carrier but I do not know if my fiance is one and our first is due any day now) but on August 1 I lost my very bst friend Corey to CF. He was my first love and to this day I never stopped loving him. I know how hard it is to watch someone you love go through that battle, though Corey isnt my child, even though we were broken up, he was still a very big part of my whole world and watching him hurt and battle for his life killed me and when he passed a part of me went with him. I have read you entries and you are such a great mom, your daughter is a very lucky girl to have you. I will continue to read your blog, since Ive met Corey I feel a bond with others who face this battle as well. After med school I plan on working with CF children. We dont know each other however I am a great listener should you ever need someone to talk to please feel free to email me, Ill keep praying for your family and I hope Lucy continues to do well. My email is cryssygurl90@yahoo.com should you ever wish to talk more. God bless.Crystalnoreply@blogger.comtag:blogger.com,1999:blog-7399327306744554324.post-81616909076658623782009-06-29T15:17:14.076-07:002009-06-29T15:17:14.076-07:00I am a mom of three kids and two have Cf. I have ...I am a mom of three kids and two have Cf. I have a son who is three in August and a girl who is 10 months old with CF. I understand what you're going through. If you need support or a person to talk to about Cf let me know. She is adorable and I think it's great that you are still nursing her! I'm still nursing my youngest too! I love it!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-7399327306744554324.post-3763597768495486562009-05-27T11:15:00.764-07:002009-05-27T11:15:00.764-07:00I can never tell you enough how amazing I really t...I can never tell you enough how amazing I really think you are. Seriously. Reading your blog makes me cry I can't imagine living it. Lucy is so beautiful and smart and lucky to have such a great mama!Jenilynnnoreply@blogger.com