tag:blogger.com,1999:blog-5348155237652648174.post1070084416697166276..comments2023-10-02T03:16:48.356-05:00Comments on "EB"ing a Mommy: Day 4Courtney Rothhttp://www.blogger.com/profile/01781571778358173399noreply@blogger.comBlogger46125tag:blogger.com,1999:blog-5348155237652648174.post-31221732815125075032010-11-17T12:41:22.307-06:002010-11-17T12:41:22.307-06:00Holy smokes. While I've read Jonah's blog...Holy smokes. While I've read Jonah's blog and yours for a while, I guess even my nurse mind didn't really comprehend what ya'll had to go through. Thanks for giving us this intimate glimpse inside your life with your sweet baby Tripp.kim_broughhttps://www.blogger.com/profile/15266273034368298545noreply@blogger.comtag:blogger.com,1999:blog-5348155237652648174.post-8640222617783837332010-10-29T23:20:23.266-05:002010-10-29T23:20:23.266-05:00I cried almost the whole way through this post! Th...I cried almost the whole way through this post! Thank you for sharing it. It really puts everything into perspective. My heart broke when I saw the picture of his feeding tube area. Poor baby. The last picture though made me smile like crazy...he never ceases to amaze me. He is so handsome ! Continued prayers for that little guy and you !! You are doing such a great job !Brittanyhttps://www.blogger.com/profile/06719179534931718696noreply@blogger.comtag:blogger.com,1999:blog-5348155237652648174.post-63478285528951273542010-10-29T20:20:50.575-05:002010-10-29T20:20:50.575-05:00EB Sucks. Tears for your little boy...and for you....EB Sucks. Tears for your little boy...and for you. I can't imagine. There is nothing like a mother's love. You prove that daily.Leahhttps://www.blogger.com/profile/02085238514257285717noreply@blogger.comtag:blogger.com,1999:blog-5348155237652648174.post-71721228710391690932010-10-29T19:51:44.666-05:002010-10-29T19:51:44.666-05:00Courtney,
Just wanted to say thank you for posting...Courtney,<br />Just wanted to say thank you for posting about Tripp and your life. You and Tripp are a wonderful pair. You know his needs and you do what you have to do with such love and compassion that it is amazing. You and all of us are under such amazing grace. I love to see Tripp's pictures. I think he is so precious and beautiful! Thank you again for sharing him with us.Marilynhttps://www.blogger.com/profile/02119177098252163706noreply@blogger.comtag:blogger.com,1999:blog-5348155237652648174.post-23271090663231852742010-10-29T16:11:55.432-05:002010-10-29T16:11:55.432-05:00This has me in tears only because he is such a swe...This has me in tears only because he is such a sweet baby boy who has to endure so much (as do other EB babies). You are an incredible mom. I am praying for your family.Jenhttps://www.blogger.com/profile/12795571652849272595noreply@blogger.comtag:blogger.com,1999:blog-5348155237652648174.post-84153694107278178842010-10-29T14:43:17.481-05:002010-10-29T14:43:17.481-05:00I suppose it is the first time i'm writing. T...I suppose it is the first time i'm writing. Tripp's is a brave baby and you a wonderful mother. <br /><br />I'm wishing with all my heart that soon a cure to EB will be found, no one, especially a baby or a child should go through that suffering.<br /><br />carla, luxembourgAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-5348155237652648174.post-12534325419922646392010-10-29T13:22:13.098-05:002010-10-29T13:22:13.098-05:00Wow, he is really brave and tough to endure all of...Wow, he is really brave and tough to endure all of that, and you are such a gentle and amazing mother. Thank you for giving us a window into your world. We pray for you each night.Unknownhttps://www.blogger.com/profile/11927080300975064525noreply@blogger.comtag:blogger.com,1999:blog-5348155237652648174.post-36157327875397557392010-10-29T12:50:33.259-05:002010-10-29T12:50:33.259-05:00My youngest son was born with a large wound on his...My youngest son was born with a large wound on his cheek and a much larger wound on his leg. There was basically no skin from his hip socket to his knee and his cheek also had a large amount missing skin. The wound on his cheek was almost star shaped and spread up into his hairline. He had little wounds all over him and healed scars at birth.<br />He was also born missing his left hand.<br />No one really has any answers to how any of this happened to our son. It was a complete surprise to us.<br />It took several months for him to heal from those wounds and several years before they were not raw and sensitive. My husband and I spent a lot of time changing his dressings and keeping him quarantined to avoid infection in those early months.<br />We were terrified but willing to do anything for our boy.<br />I also remember ordering supplies like Aquaphor permeated gauze and special sterile dressings. I remember our doctor loading us down with supplies from her own reserves on every visit.<br />My son does not have EB and eventually his wounds did heal but I remember those first months (and subsequent years) as a very difficult, gut wrenching time for all.<br />I admire you for all you do for Tripp.<br />Is there a way I could donate some supplies to your family or help out with the costs in some way? Is there anything Tripp needs?<br />I can't say I know what it is like to have a child with EB but I do know what it is like to care for a child who is hurting. <br />All my best to you, as always.Lhttps://www.blogger.com/profile/12635877618193159522noreply@blogger.comtag:blogger.com,1999:blog-5348155237652648174.post-6823248399566157642010-10-29T12:49:42.202-05:002010-10-29T12:49:42.202-05:00i don't comment often but i read all the time....i don't comment often but i read all the time..praying for y'all all the time! tripp is just precious and he is blessed to have such awesome parents and family! i know he will teach others great things! you are one awesome mama~ much love and blessings from ga~ erin<br /><br />erinand4boys.blogspot.comUnknownhttps://www.blogger.com/profile/01412896087703076658noreply@blogger.comtag:blogger.com,1999:blog-5348155237652648174.post-84612925720722916132010-10-29T11:36:20.480-05:002010-10-29T11:36:20.480-05:00Thank you so much for taking the time to share som...Thank you so much for taking the time to share something so personal with those who care so deeply for your family. Its truly amazing what you have to deal with on a daily basis, your strength is outstanding and you truly are a hero in my eyes!!! I love you all and GOd bless!!<br />Abby Andersonabbyandersonhttps://www.blogger.com/profile/06098286003887909941noreply@blogger.comtag:blogger.com,1999:blog-5348155237652648174.post-37935043225320740242010-10-29T11:09:46.283-05:002010-10-29T11:09:46.283-05:00Wow. Thank you for sharing. I have tried to imagin...Wow. Thank you for sharing. I have tried to imagine what these things are like for you guys, and Daylon too, and I had no idea. You and your Mom are amazing and dedicated ladies. Seeing this makes it even more amazing when I see pictures of Tripp smiling. <br />Good job! My boys and I pray for you and the other EB babies every night. <br />MemoryMemoryhttps://www.blogger.com/profile/06238644291623631218noreply@blogger.comtag:blogger.com,1999:blog-5348155237652648174.post-58731850068981562572010-10-29T11:00:51.736-05:002010-10-29T11:00:51.736-05:00WOW. Thank you so very much for taking what I know...WOW. Thank you so very much for taking what I know was many extra precious hours out of your day to let us see everything step by step. Thank God you are able to stay at home with Tripp- he could never receive the incredibly scrupulous care you give him from anyone else. Nothing like a determined mama's love....<br /><br />I know all of you eb mama's have made so many sacrifices to stay at home and give your little ones the very best care possible. Blessings to you all. Praying for peace and ease in your hearts, and for a cure to this evil disease.ElleAuvilhttps://www.blogger.com/profile/06500163545469225609noreply@blogger.comtag:blogger.com,1999:blog-5348155237652648174.post-46092679555671499342010-10-29T09:17:52.517-05:002010-10-29T09:17:52.517-05:00Just want to say what a handsome &sweet boy.
...Just want to say what a handsome &sweet boy. <br /><br />Love is sent your wayWanda Wilkinsonhttps://www.blogger.com/profile/13906339828027614897noreply@blogger.comtag:blogger.com,1999:blog-5348155237652648174.post-37047151001040026992010-10-29T08:33:49.695-05:002010-10-29T08:33:49.695-05:00What an ordeal to go through everyday! Bless his ...What an ordeal to go through everyday! Bless his little heart! Hey... we have access to "borrow" too! Email me and we could send some to you!! Dianalin@aol.com I think it's brillant how organized you and your mom are when it comes to the set up! Love to all~ <br />MemeDiana Lesjakhttps://www.blogger.com/profile/06476647718030742111noreply@blogger.comtag:blogger.com,1999:blog-5348155237652648174.post-30133810152960905782010-10-29T08:20:13.645-05:002010-10-29T08:20:13.645-05:00Hi Courtney: Thanks so much for all you have done...Hi Courtney: Thanks so much for all you have done this week for EB awareness. This posting of a dressing change is remarkable. These EB children are so so special, but wow what the parents go through, Holy Cow!!!<br />Give that special son of yours a big hug and kiss for me. Love you guys. Tell your Mom I said hello and God Bless Her for all the help with Tripp. Love and Peace Leah's NanaLindahttps://www.blogger.com/profile/15650120957253451148noreply@blogger.comtag:blogger.com,1999:blog-5348155237652648174.post-27975198452537490832010-10-29T07:43:04.472-05:002010-10-29T07:43:04.472-05:00Thank you so much for all the detailed look of wha...Thank you so much for all the detailed look of what you have to do. So much work but all to keep your Tripp safe and You my dear and your mom are truly admired angels taking care of an angel. It makes me feel happy that Tripp is so well taking care of, yet sad that he has to go thru so much. Keep up the great work mom and grandma!Gildahttps://www.blogger.com/profile/02303055661001498091noreply@blogger.comtag:blogger.com,1999:blog-5348155237652648174.post-87885923046603788732010-10-29T00:16:10.132-05:002010-10-29T00:16:10.132-05:00Courtney,
thank you so much for this post. I reall...Courtney,<br />thank you so much for this post. I really think that to really appreciate an EB babies life and their parents life, you need to see a bandage change. I'mso glad you did this for all the EB kids out there! <br />You're such a great mommy!<br />love,<br />jenniferJennifer Edlinghttps://www.blogger.com/profile/07828194845522082991noreply@blogger.comtag:blogger.com,1999:blog-5348155237652648174.post-18775078193031470682010-10-28T23:23:00.710-05:002010-10-28T23:23:00.710-05:00Hi, I have been following Tripp intermittently fro...Hi, I have been following Tripp intermittently from MN. My baby is junctional also and I am trying to do something each day for EB awareness week. Your step by step is very informative and not too graphic. You asked to not share the photos but I was wondering if I could put the link to your blog on this dressing change on our post tomorrow for EB awareness? You are doing a beautiful job with Tripp! Sincerely, Becky Pop, Elle's MamaBeckyhttps://www.blogger.com/profile/16057251732943794307noreply@blogger.comtag:blogger.com,1999:blog-5348155237652648174.post-38764913106593879042010-10-28T23:00:05.525-05:002010-10-28T23:00:05.525-05:00WOW and AMAZING are the two words that come to my ...WOW and AMAZING are the two words that come to my mind. I cried as I read this post, the dedication you and grandma have to making those sweet cheeks (and every other body part) as comfy and safe as possible is simply amazing. That last picture of the Tripp is just perfect, after bath and with sores he's still a smiling perfect little boy, WOW! He is loved and he is perfect!<br /><br />Keep up the great work Courtney, thanks for sharing!<br /><br />Rebecca in CAAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-5348155237652648174.post-88841512136336500722010-10-28T22:03:21.927-05:002010-10-28T22:03:21.927-05:00Wow, wow, wow, wow, wow. That really is a product...Wow, wow, wow, wow, wow. That really is a production. The spot around Tripps g-tube...I cringed when I saw it. OUCH <br /><br />I am so thankful for your mom...what a great lady to step up like that. Bless her (and Elmo too ;))<br /><br />I caught up on yesterdays post. Bmt...insert me exhaling here. I went on that "ride" with Daylon and Bella...now I ride it with Elle. I cant imagine making that decision. I do pray that they find a better way...quickly...for Tripp, Jonah and other EB babies. <br /><br />Always remember you are one strong lady and one amazing mommy. Tripp is so lucky to have you...just as lucky as you are to have him.<br /> <br /><br />Denise WIDenisehttps://www.blogger.com/profile/13295097495507100702noreply@blogger.comtag:blogger.com,1999:blog-5348155237652648174.post-54160590757636501442010-10-28T21:50:25.852-05:002010-10-28T21:50:25.852-05:00Amazing. I don't know how you do it all, Court...Amazing. I don't know how you do it all, Courtney. And I so admire your organization! We've been in and out of the hospital for the last year with our daughter (congenital heart defect), and most ICU's aren't as organized as you!<br /><br />May God continue to give you strength to deal with each new situation, and peace in the midst of the storms. <br /><br />Nancy<br />http://rebekahgraceellis.blogspot.comNancyhttps://www.blogger.com/profile/03429204860651444534noreply@blogger.comtag:blogger.com,1999:blog-5348155237652648174.post-30105024637714599422010-10-28T21:47:58.179-05:002010-10-28T21:47:58.179-05:00you are tripps angel on earth-bless his heart and ...you are tripps angel on earth-bless his heart and yours! prayers and hugs!The Buchanan Familyhttps://www.blogger.com/profile/15489772426981545564noreply@blogger.comtag:blogger.com,1999:blog-5348155237652648174.post-79019616443545005582010-10-28T21:45:47.594-05:002010-10-28T21:45:47.594-05:00Courtney,
Thanks for doing an amazing job so far...Courtney,<br /> Thanks for doing an amazing job so far this week on sharing your EB knowledge with us. You had every right to decide what to share about Tripp's bath and dressing changes. You are truly blessed to have such a wonderful Mom to help you with his care. The last picture just touched my heart. The "little knight" is one tough beautiful child who is loved by so many people.Rachelhttps://www.blogger.com/profile/07375712785987842904noreply@blogger.comtag:blogger.com,1999:blog-5348155237652648174.post-16139631167072096622010-10-28T20:34:31.724-05:002010-10-28T20:34:31.724-05:00It is just so unfair - I can't even begin to c...It is just so unfair - I can't even begin to comprehend the emotion of all of this for you and your family. I can't even handle the pictures!!! That beautiful precious little boy - I am just so very sorry!!!!! I will continue to storm HEAVEN with prayer for Tripp and your family!!! GOD BLESS ALL OF YOU!!!!!summerhttps://www.blogger.com/profile/00894485783140846404noreply@blogger.comtag:blogger.com,1999:blog-5348155237652648174.post-13027406595382274742010-10-28T20:34:27.691-05:002010-10-28T20:34:27.691-05:00Oh goodness I just want to cry reading all that! I...Oh goodness I just want to cry reading all that! I am so sad for Tripp for having to live like that and the pain that he is in and you ..I can't imagine the pain you feel for him! I am so so sorry that he has this awful disease! I so wish there was a cure! :( You are an amazing mom!!!!Anonymousnoreply@blogger.com