tag:blogger.com,1999:blog-2213584533394907861.comments2023-03-26T02:12:03.598-07:00Jennys BlogJennyhttp://www.blogger.com/profile/00737710882976883294noreply@blogger.comBlogger26125tag:blogger.com,1999:blog-2213584533394907861.post-74984313253563487172010-02-04T03:23:11.613-08:002010-02-04T03:23:11.613-08:00Here is a link to more information about the genet...Here is a link to more information about the genetics of Epidermolysis Bullosa that was prepared by our genetic counselor and which has links to some useful resource for those dealing with this condition: http://www.accessdna.com/condition/Epidermolysis_Bullosa/134. There is also a number listed for anyone who wants to speak to a genetic counselor by phone. I hope it helps. Thanks, AccessDNAshashankhttps://www.blogger.com/profile/00619194751575071216noreply@blogger.comtag:blogger.com,1999:blog-2213584533394907861.post-54350408257848015292009-12-31T07:48:57.040-08:002009-12-31T07:48:57.040-08:00There is a pediatric dermatologist that moved from...There is a pediatric dermatologist that moved from Houston to Austin last year. His name is Dr. Moises Levy and has experience with EB. His contact info: http://www.dellchildrens.net/find_a_physician/levy/moise<br /><br />I found your blog after searching for EB, saw you were in Georgetown. My wife has DDEB. Dr. Levy is partaking in a wound heal study for EB.kdoghttps://www.blogger.com/profile/05584686392269040603noreply@blogger.comtag:blogger.com,1999:blog-2213584533394907861.post-17570477879286762842009-07-06T08:39:40.956-07:002009-07-06T08:39:40.956-07:00We DID have alot of fun. I especially enjoyed bein...We DID have alot of fun. I especially enjoyed being able to spend time with my girls and all of my grandchildren. Let's do it again next year! I'll send my pics as soon as I can download them today!Mariehttps://www.blogger.com/profile/14202545172259333311noreply@blogger.comtag:blogger.com,1999:blog-2213584533394907861.post-65399218924700896972009-07-06T08:37:29.232-07:002009-07-06T08:37:29.232-07:00I am soo happy the boys love their new castle. No...I am soo happy the boys love their new castle. Now we need some knight costumes to go with it! I'll start looking! And a dragon of course! LOLMariehttps://www.blogger.com/profile/14202545172259333311noreply@blogger.comtag:blogger.com,1999:blog-2213584533394907861.post-82086955961024094952009-07-05T12:39:56.630-07:002009-07-05T12:39:56.630-07:00I can't wait to see pics! It sounds like such ...I can't wait to see pics! It sounds like such a great time! (the indoor part sounds very appealing!)Rosehttps://www.blogger.com/profile/01360870434724744043noreply@blogger.comtag:blogger.com,1999:blog-2213584533394907861.post-85921552590185533382009-06-22T10:29:15.805-07:002009-06-22T10:29:15.805-07:00You are SO SWEET! I love it! Love ya girl, let'...You are SO SWEET! I love it! Love ya girl, let's chat REAL SOON!Rosehttps://www.blogger.com/profile/01360870434724744043noreply@blogger.comtag:blogger.com,1999:blog-2213584533394907861.post-4029541265092135552009-05-29T18:35:34.870-07:002009-05-29T18:35:34.870-07:00Love the pictures of the boys. Jaxon really is his...Love the pictures of the boys. Jaxon really is his daddy! And Jamie looks so sweet! Can't believe how big they are both getting. I love to watch Jamie walk, talk with Jaxon about "important" stuff like weddings, etc. LOLMariehttps://www.blogger.com/profile/14202545172259333311noreply@blogger.comtag:blogger.com,1999:blog-2213584533394907861.post-62039598364614116802009-04-20T16:15:00.000-07:002009-04-20T16:15:00.000-07:00We DID have alot of fun. I don't know who was more...We DID have alot of fun. I don't know who was more excited....Papa for seeing Jaxon's smile or Jaxon himself! And Jamie did think he was hot stuff haha. Who would have thought an old sandbox would bring so much fun as a pool??? Wait until we build the horseshoe pit and the putting green. We'll have something for everyone! LOLMariehttps://www.blogger.com/profile/14202545172259333311noreply@blogger.comtag:blogger.com,1999:blog-2213584533394907861.post-50146382408115823732009-04-20T13:11:00.000-07:002009-04-20T13:11:00.000-07:00love these boys!love these boys!Rosehttps://www.blogger.com/profile/01360870434724744043noreply@blogger.comtag:blogger.com,1999:blog-2213584533394907861.post-71366045460667689162009-04-16T07:48:00.000-07:002009-04-16T07:48:00.000-07:00I am so glad I found your blog, your son is very l...I am so glad I found your blog, your son is very lucky! My 9 month old niece passed away from complications with EB in February. I am very eager to keep reading on your blog. I know how hard it is, and i am very proud of your family. <br /><br /><br />SonnyBRONNYhttps://www.blogger.com/profile/14774523511305631577noreply@blogger.comtag:blogger.com,1999:blog-2213584533394907861.post-28178765576707007342009-04-02T13:23:00.000-07:002009-04-02T13:23:00.000-07:00We did have a great day and I look forward to more...We did have a great day and I look forward to more of these once school is out for the summer. Love the photos.Mariehttps://www.blogger.com/profile/14202545172259333311noreply@blogger.comtag:blogger.com,1999:blog-2213584533394907861.post-28661991033659144912009-03-22T13:23:00.000-07:002009-03-22T13:23:00.000-07:00I remember how scared we were when we heard the di...I remember how scared we were when we heard the diagnosis. Jamie has come so far and handled so much. So have you. I am so proud of what a great mother and advocate you are to Jamie. He is doing so well because of your efforts. I know it has been hard, heck we've shared many tears and fears and just as many smiles and laughs.<BR/><BR/>Jamie is a unique little boy and I LOVE LOVE LOVE watching him grow. He has such a "can do" attitude, nothing is going to get this boy down. We all need to take lessons on overcoming life's curve balls. Just witness what he has accomplished. I've never seen a baby walk in casts, until Jamie, or one who crawls and climbs like a little monkey!<BR/><BR/>I forsee great things in Jamie's future and look forward to being there to cheer him on! This is one proud nani!Mariehttps://www.blogger.com/profile/14202545172259333311noreply@blogger.comtag:blogger.com,1999:blog-2213584533394907861.post-25940297318198262392009-03-05T11:34:00.000-08:002009-03-05T11:34:00.000-08:00I can't wait to read more when you are able to pos...I can't wait to read more when you are able to post more! Jamie is absolutely precious, I forgot how very tiny he was.Rosehttps://www.blogger.com/profile/01360870434724744043noreply@blogger.comtag:blogger.com,1999:blog-2213584533394907861.post-36597989829615492142009-02-05T16:58:00.000-08:002009-02-05T16:58:00.000-08:00Girl, you almost got your blogging card PULLED! So...Girl, you almost got your blogging card PULLED! So glad you are back!Rosehttps://www.blogger.com/profile/01360870434724744043noreply@blogger.comtag:blogger.com,1999:blog-2213584533394907861.post-41859118361061972472008-09-25T07:37:00.000-07:002008-09-25T07:37:00.000-07:00Great pictures! Looks like the boys (and daddy) h...Great pictures! Looks like the boys (and daddy) had alot of fun. I may have to "steal: some of these pictures since I don't get new ones too often!Mariehttps://www.blogger.com/profile/14202545172259333311noreply@blogger.comtag:blogger.com,1999:blog-2213584533394907861.post-47159354944679222332008-09-24T18:00:00.000-07:002008-09-24T18:00:00.000-07:00Love the pictures! Wish we could be there!XOXOLove the pictures! Wish we could be there!<BR/>XOXORosehttps://www.blogger.com/profile/01360870434724744043noreply@blogger.comtag:blogger.com,1999:blog-2213584533394907861.post-8792982228549758882008-09-10T12:17:00.000-07:002008-09-10T12:17:00.000-07:00The last photo looks like Jamie is doing "So Big" ...The last photo looks like Jamie is doing "So Big" I hope he likes his shoes more now that he has worn them for a few days.Mariehttps://www.blogger.com/profile/14202545172259333311noreply@blogger.comtag:blogger.com,1999:blog-2213584533394907861.post-66553894278105204262008-09-10T07:23:00.000-07:002008-09-10T07:23:00.000-07:00Great pics of our boy! I am so tickled that he is...Great pics of our boy! I am so tickled that he is enjoying his new role as "school boy" Send me some of these pics! NaniMariehttps://www.blogger.com/profile/14202545172259333311noreply@blogger.comtag:blogger.com,1999:blog-2213584533394907861.post-39621099676119066872008-09-03T18:09:00.000-07:002008-09-03T18:09:00.000-07:00Aww Girl! That is TOO CUTE!Aww Girl! That is TOO CUTE!Rosehttps://www.blogger.com/profile/01360870434724744043noreply@blogger.comtag:blogger.com,1999:blog-2213584533394907861.post-58992782929720866122008-09-03T17:39:00.000-07:002008-09-03T17:39:00.000-07:00He looks so big! WOW girl!He looks so big! WOW girl!Rosehttps://www.blogger.com/profile/01360870434724744043noreply@blogger.comtag:blogger.com,1999:blog-2213584533394907861.post-42197134119509930992008-09-03T14:52:00.000-07:002008-09-03T14:52:00.000-07:00HelloHelloBachelor Paulhttps://www.blogger.com/profile/09568212529484583826noreply@blogger.comtag:blogger.com,1999:blog-2213584533394907861.post-73696415619153205172008-09-03T08:04:00.000-07:002008-09-03T08:04:00.000-07:00I love your list! Especially the unwanted advice!I love your list! Especially the unwanted advice!Rosehttps://www.blogger.com/profile/01360870434724744043noreply@blogger.comtag:blogger.com,1999:blog-2213584533394907861.post-70157384620533132732008-08-30T20:42:00.000-07:002008-08-30T20:42:00.000-07:00hey girl, I tagged you. Go see my blog for deets.hey girl, I tagged you. Go see my blog for deets.Rosehttps://www.blogger.com/profile/01360870434724744043noreply@blogger.comtag:blogger.com,1999:blog-2213584533394907861.post-27581547515573169122008-08-16T22:20:00.000-07:002008-08-16T22:20:00.000-07:00Jamie is SO CUTE! Happy Birthday Chelsea!Jamie is SO CUTE! Happy Birthday Chelsea!Rosehttps://www.blogger.com/profile/01360870434724744043noreply@blogger.comtag:blogger.com,1999:blog-2213584533394907861.post-37352549137353568942008-08-12T13:39:00.000-07:002008-08-12T13:39:00.000-07:00Go Jax and Jamie! I can't wait to hear all about s...Go Jax and Jamie! I can't wait to hear all about school!Rosehttps://www.blogger.com/profile/01360870434724744043noreply@blogger.com