tag:blogger.com,1999:blog-7961655801018531468.comments2023-10-18T21:35:45.555-04:00Garrett's HouseSara Denslawhttp://www.blogger.com/profile/09625588629095084632noreply@blogger.comBlogger18125tag:blogger.com,1999:blog-7961655801018531468.post-23617495836921229082023-10-18T21:35:45.555-04:002023-10-18T21:35:45.555-04:00I am happy to chat or text as well I just don'...I am happy to chat or text as well I just don't want to put my phone # out for all to see 😁 Sara Denslawhttps://www.blogger.com/profile/09625588629095084632noreply@blogger.comtag:blogger.com,1999:blog-7961655801018531468.post-30618655813110298852023-10-18T21:34:35.963-04:002023-10-18T21:34:35.963-04:00Congratulations on your new baby 🥰Please email me...Congratulations on your new baby 🥰Please email me, saradenslaw@gmail.com I have more info I can send or look me up on FB. There are support groups for eb on there too. Sara Denslawhttps://www.blogger.com/profile/09625588629095084632noreply@blogger.comtag:blogger.com,1999:blog-7961655801018531468.post-2925311043670093762023-10-18T20:26:12.152-04:002023-10-18T20:26:12.152-04:00I'm a new EB mom, I found out about this page ...I'm a new EB mom, I found out about this page from the child life department of my hospital (a department that tries to make the NICU more like home). Super helpful! I'm already having trouble with morphineMavihttps://www.blogger.com/profile/03505875512557317226noreply@blogger.comtag:blogger.com,1999:blog-7961655801018531468.post-32290355047226923812023-10-18T20:12:43.592-04:002023-10-18T20:12:43.592-04:00Thank you so much for sharing such detailed inform...Thank you so much for sharing such detailed information. It will help lots of parents including myself as we navigate the disease and genetic test results. I'm extremely sorry for your loss. It must have been an impossibly difficult period of your life. I hope better times are to comeMavihttps://www.blogger.com/profile/03505875512557317226noreply@blogger.comtag:blogger.com,1999:blog-7961655801018531468.post-89947311546660560382014-05-27T14:29:45.194-04:002014-05-27T14:29:45.194-04:00Oh no!!! I can' believe it! I'm crying...S...Oh no!!! I can' believe it! I'm crying...Sweet little boy, Rest In PeaceNatalia Kuktahttps://www.blogger.com/profile/04234410595525090149noreply@blogger.comtag:blogger.com,1999:blog-7961655801018531468.post-91245840801049054512013-10-09T10:20:19.164-04:002013-10-09T10:20:19.164-04:00Well written. Janna while in hospital underwent ...Well written. Janna while in hospital underwent many echos as damage from all her severe inflections could have caused heart damage, also her severe electrolyte issues and low iron etc. She had Jeb-H, a very severe case apparently according to doctors. This was one thing they did mention at one point so think it is great info. My friends son passed away from this very condition (albeit he did not have EB he did suffer from another serious multi organ un diagnosed condition. It really snuck up as an issue. Unknownhttps://www.blogger.com/profile/03913130896274479284noreply@blogger.comtag:blogger.com,1999:blog-7961655801018531468.post-41735597944819266092013-05-28T09:01:19.431-04:002013-05-28T09:01:19.431-04:00Hallo, Sara! My name is Nataliya, I live in Ukrain...Hallo, Sara! My name is Nataliya, I live in Ukraine and I have three daughters without EB and son with EB. Would you please visit my blog http://mama-and-son-with-eb.blogspot.com/ and look for "News in pictures" and "OUR HISTORY". There are many photos of my son (clinical pictures). Does he looks like he has Dowling Meara? or Herlitz? It is very important for me to know your opinion because we havn't any specialist of EB in our country. My e-mail: kukta@bk.ruNatalia Kuktahttps://www.blogger.com/profile/04234410595525090149noreply@blogger.comtag:blogger.com,1999:blog-7961655801018531468.post-12192821356098753692013-05-21T11:49:19.633-04:002013-05-21T11:49:19.633-04:00Dear Sarah!Thanks for all the information into thi...Dear Sarah!Thanks for all the information into this blog, for me and my son it's very useful!Natalia Kuktahttps://www.blogger.com/profile/04234410595525090149noreply@blogger.comtag:blogger.com,1999:blog-7961655801018531468.post-87492589409118639432013-01-23T16:20:16.093-05:002013-01-23T16:20:16.093-05:00Thank you Sara for allowing me to share a bit abou...Thank you Sara for allowing me to share a bit about you and your family and thank you for all that you do!ChristieZinkhttps://www.blogger.com/profile/15426332133109576855noreply@blogger.comtag:blogger.com,1999:blog-7961655801018531468.post-76336991484763798342012-10-30T23:48:26.289-04:002012-10-30T23:48:26.289-04:00Hi Sarah,
I have been reading your blogs for some...Hi Sarah,<br /><br />I have been reading your blogs for some time now (ever since I became aware of Trip Roth which introduced me to EB) and I just want to say that you are a terrific advocate. I know that your information, advice, and support has been invaluable for countless families and friends of those living with EB, not to mention to those personally suffering with this devastating condition. Don't second guess yourself. You are fighting the good fight. People don't have to always agree with your personal opinions and beliefs with respect to EB, but I am certain that they have immense respect and gratitude for your unwavering and heartfelt support and guidance. Keep up the great work. I know the entire EB community values you.<br /><br />Kath Young<br />Everett, WashingtonKathhttps://www.blogger.com/profile/07666531463432318219noreply@blogger.comtag:blogger.com,1999:blog-7961655801018531468.post-36809227195723577782012-09-01T04:04:24.174-04:002012-09-01T04:04:24.174-04:00Sara this is amazing!! I hope MANY people read thi...Sara this is amazing!! I hope MANY people read this blog xAnonymoushttps://www.blogger.com/profile/02642156464024697398noreply@blogger.comtag:blogger.com,1999:blog-7961655801018531468.post-2107714194952080662012-08-29T07:15:20.647-04:002012-08-29T07:15:20.647-04:00Dearest Sara: Thank you so much for doing this li...Dearest Sara: Thank you so much for doing this list for new EB parents. It sure is scary when you first hear the words EB, and then you look it up on the internet and really freak. Hopefully new parents will come here and not freak. You are truly a blessing to the EB community and I know that we would have been a little lost without all your help when Leah was born. Thank you for always thinking of others. Love and Peace Leah and Tabby's NanaLindahttps://www.blogger.com/profile/15650120957253451148noreply@blogger.comtag:blogger.com,1999:blog-7961655801018531468.post-29106271396357832712012-08-29T06:17:04.010-04:002012-08-29T06:17:04.010-04:00Sara! I just love you to pieces. What I apprecia...Sara! I just love you to pieces. What I appreciate about you the most, is that you are REAL; you wear your heart on your sleeve. You are such a hard working Mom, you are an inspiration to those in the EB community and those outside of it, (ie, lil ole me). You inspire me to be a better person. Your site is AMAZING!! Anonymoushttps://www.blogger.com/profile/03811954043864220768noreply@blogger.comtag:blogger.com,1999:blog-7961655801018531468.post-31056558793138438272012-08-01T23:49:48.993-04:002012-08-01T23:49:48.993-04:00oops, the links should be, www.littleliamslambs.bl...oops, the links should be, www.littleliamslambs.blogspot.comStaceyhttps://www.blogger.com/profile/12007006923648445023noreply@blogger.comtag:blogger.com,1999:blog-7961655801018531468.post-63441094541863314862012-08-01T23:49:11.326-04:002012-08-01T23:49:11.326-04:00I'm sorry that I missed this fundraiser. Do y...I'm sorry that I missed this fundraiser. Do you know if there will be another one soon?<br /><br />~ Stacey<br />www.littleliamslambs.comStaceyhttps://www.blogger.com/profile/12007006923648445023noreply@blogger.comtag:blogger.com,1999:blog-7961655801018531468.post-23589102673874316022012-03-02T06:54:42.161-05:002012-03-02T06:54:42.161-05:00wow that's really amazing.
Children’s Dentist ...wow that's really amazing.<br /><a href="http://www.me-dentalpractice.com.au/" rel="nofollow">Children’s Dentist Highfields</a>Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-7961655801018531468.post-17345220263807043472011-02-10T22:33:49.327-05:002011-02-10T22:33:49.327-05:00My daughter who has EB Simplex(DM)who is now 4 1/2...My daughter who has EB Simplex(DM)who is now 4 1/2 years old had many of these issues. I wish I would have known about this web page. Thank you for helping new parents know what to expect, some preventative measures and average times to reach movement milestones.Unknownhttps://www.blogger.com/profile/15024191248249490323noreply@blogger.comtag:blogger.com,1999:blog-7961655801018531468.post-24888342043319909152010-10-27T12:12:59.720-04:002010-10-27T12:12:59.720-04:00I found your blog through Little Lady leah's. ...I found your blog through Little Lady leah's. I was surprised to start reading and see you are from Kalamazoo. I live in Kalamazoo with my 4 young children. I started following Tripp's, Jonah's, Bella's and Leah's blog not too long ago and am heartbroken at all you parents have had to endure. But I am also inspired by all the strength you all have in dealing with your little ones. God bless you and your beautiful family :)Laurahttps://www.blogger.com/profile/09477591972503763330noreply@blogger.com