tag:blogger.com,1999:blog-3682325313690034350.post3519977952932922814..comments2023-10-05T09:30:46.006-05:00Comments on Baby Daylon: Halloween and moreJennifer Edlinghttp://www.blogger.com/profile/07828194845522082991noreply@blogger.comBlogger10125tag:blogger.com,1999:blog-3682325313690034350.post-18949479247002198132011-12-25T05:08:55.150-06:002011-12-25T05:08:55.150-06:00December is almost over..and you've been silen...December is almost over..and you've been silent.That is scary :-(Titus 2 Thandihttps://www.blogger.com/profile/04682041725252115845noreply@blogger.comtag:blogger.com,1999:blog-3682325313690034350.post-47743066505650418942011-12-04T19:12:07.244-06:002011-12-04T19:12:07.244-06:00Wow! What great comments! You are doing so much ...Wow! What great comments! You are doing so much good Jen!Cherylhttps://www.blogger.com/profile/05135456666823026419noreply@blogger.comtag:blogger.com,1999:blog-3682325313690034350.post-62673444919497023292011-12-02T01:52:04.434-06:002011-12-02T01:52:04.434-06:00HI I found you blog via a comment left on another ...HI I found you blog via a comment left on another blog. What an awesome little man you have. My daughter has also been disgnosed with EB, her type is unknown as she has had 2 inclonclusive skin byopsies(?) but most probably EB simplex as hers is very mild and mostly contained to hands and feet, although she has wierd traits with it, her nails are affected, she has suffered corneal abrasion and at 3 days old pyloric atresia. My daughter is 7 and even though we don't have to go through 90% of what you guys do I do know what its like to see your child suffer, I have only skimmed the surface of your blog but congrats on the success of the BMT, amazing!Clairehttp://shermanoaks91403.blogspot.comnoreply@blogger.comtag:blogger.com,1999:blog-3682325313690034350.post-87321038622383933632011-11-25T16:49:45.680-06:002011-11-25T16:49:45.680-06:00Your kids are adorable! Love how they all have th...Your kids are adorable! Love how they all have those trademark super thin Edling lips! Yay for Daylon being able to go barefoot now ! No more bandages, whew !!Beckynoreply@blogger.comtag:blogger.com,1999:blog-3682325313690034350.post-46305720338045220562011-11-25T14:57:12.257-06:002011-11-25T14:57:12.257-06:00Hi,
We are a family from Belgium. Our son, Jesse,...Hi,<br /><br />We are a family from Belgium. Our son, Jesse, was born on april 14, 6 weeks to soon. But we were lucky, he was healty, so we tought... One week later our world collapsed! He had junctional EB Herlitz! We had a wonderfull team to support us. EB nurse arranged a network around us (a palliatieve team, a nurse who would help us at home, cooperation with our GP, contact with the local hospital...) Our little boy past away on july 5. I could not believe when I found your blog and read your story! It is amazing that your little boy is 2 years old!! I would love to chare our story with you and follow your story. I'm sorry, my English isn't that good. I'm trying to write without misspellings.<br /><br />Can you give me your e-mail adress?<br />KatrienAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-3682325313690034350.post-81529971966268216432011-11-21T10:30:28.932-06:002011-11-21T10:30:28.932-06:00Hi, there, Jen. (I surmised that your name is Jen ...Hi, there, Jen. (I surmised that your name is Jen from Tim and Angelique ☺) <br /><br />I have been reading your blog for a little while now. I have learned so much from you and I am truly grateful. I found your blog because I was googling treatments for my hand psoriasis and Google featured some pictures of Daylon...so I clicked over. I had never heard of EB before and I think you are doing a fabulous job of raising awareness. I have another blog friend (I've never met her in person, I must admit ☺) that does a highlight every Friday on her blog of children with special needs. I told her about your incredible blog...so she may contact you. I'm not sure how she finds candidates to highlight...but I wanted to give you a heads up in case she contacts you. I just love both of your blogs so, so, much and have learned so much from both of you. Thank you for sharing your journey with Daylon. He is amazing and I just love him. ☺<br /><br />Her blog address is... http://wearetheraddest.blogspot.com/Lauren in GAhttps://www.blogger.com/profile/06182008314143458272noreply@blogger.comtag:blogger.com,1999:blog-3682325313690034350.post-72529716937336054202011-11-16T11:34:12.171-06:002011-11-16T11:34:12.171-06:00Your kids are adorable. Much love to you and your...Your kids are adorable. Much love to you and your familyAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-3682325313690034350.post-5402934648235534902011-11-15T23:48:50.608-06:002011-11-15T23:48:50.608-06:00Oh Jen, these pictures are adorable! I love the s...Oh Jen, these pictures are adorable! I love the sight of Daylon's FEET... not foot! Yay! Daylon already is a miracle, so anything is possible when it comes to his renal function. Much love to you all!<br /><br />Tim and AngeliqueBella's Blessingshttps://www.blogger.com/profile/09372603162401786615noreply@blogger.comtag:blogger.com,1999:blog-3682325313690034350.post-55430989804086171742011-11-15T15:34:04.134-06:002011-11-15T15:34:04.134-06:00So glad to see your post and that Daylon and the o...So glad to see your post and that Daylon and the other kiddos are doing pretty good. Looks like they all had a Happy Halloween. They are such cuties and so precious. Hope things go well at the Dr. on Wed. for Daylon. Miss seeing the kiddos, love them so much. What a wonderful family you have. The pictures are really great and such beautiful children. Can't wait to see all of them again. All of You are in our thoughts and prayers. Hang in there Daylon! You Little Batman. You are a true Miracle. Take Care<br /><br />All Our Love;<br />Myrna & DwightAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-3682325313690034350.post-60381213599761750262011-11-15T11:37:31.485-06:002011-11-15T11:37:31.485-06:00My daughter was intrigued by the fact that Daylon ...My daughter was intrigued by the fact that Daylon has not had candy. She wonders (not that you would try it) what someone's response would be after never having had it. I told her even babies like sugar. <br />Interesting thought. <br /><br />I have been taking care of this wound on Tyler's hand each day and it had made me think of how much time you must spend even still on wound care. <br /><br />Glad to see your post. <br /><br />CherylCherylhttps://www.blogger.com/profile/05135456666823026419noreply@blogger.com