tag:blogger.com,1999:blog-2246912887571141353.comments2023-09-01T04:42:07.795-07:00The Mallinson AdventuresMike Mallinsonhttp://www.blogger.com/profile/05668477634350769490noreply@blogger.comBlogger264125tag:blogger.com,1999:blog-2246912887571141353.post-46279252237268124482013-12-01T12:27:53.318-08:002013-12-01T12:27:53.318-08:00Anonymous is suppose to be ANNAnonymous is suppose to be ANNAnnnoreply@blogger.comtag:blogger.com,1999:blog-2246912887571141353.post-78703762134298548392013-12-01T11:58:31.037-08:002013-12-01T11:58:31.037-08:00I am pretty positive that lengthening the tibia ma...I am pretty positive that lengthening the tibia makes the joint more stable. Although, because her knees were so unstable, Dr. Paley wanted to put lengthening devises on her lower leg and the femur at the same time, and he said it would fix her knees. And it did! So she is approximately 3" taller in her lower legs and 3" taller in her upper legs. But she has had no issues with her Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-2246912887571141353.post-44803296304517704042013-12-01T11:09:35.776-08:002013-12-01T11:09:35.776-08:00Hi Ann, I appreciate your comment. Typically, loos...Hi Ann, I appreciate your comment. Typically, loose joints in achondroplasia occur as a combination of the cartilage not forming properly and low muscle tone. Did your doctors say how the lengthening improved her loose joints? I agree, preventing pain is a positive outcome, and not simple cosmetics.<br /><br />Lengthening a single leg because one is shorter than the other is a completely Mike Mallinsonhttps://www.blogger.com/profile/05668477634350769490noreply@blogger.comtag:blogger.com,1999:blog-2246912887571141353.post-67456962528484839692013-12-01T10:58:50.568-08:002013-12-01T10:58:50.568-08:00From our experience ELL did solve a major medical ...From our experience ELL did solve a major medical issue. Our Achondoplasia Daughters' knees were so loose and full of pain. You could literately wiggle her lower leg from side to side at the knee joint. She had one phase of Limb Lengthening and her knees do not sway from side to side any more AND her knees has been pain free for 9 years. She could have done it (limb lengthening) again, butAnnnoreply@blogger.comtag:blogger.com,1999:blog-2246912887571141353.post-46262435018053690772013-12-01T07:25:18.694-08:002013-12-01T07:25:18.694-08:00Right on Mike. Yours is the voice of reason this g...Right on Mike. Yours is the voice of reason this group needs. You know how to get your point across, even dictate when necessary, without offending. Thanks for all your time, effort and commitment.jenniferhttps://www.blogger.com/profile/18326250324255592431noreply@blogger.comtag:blogger.com,1999:blog-2246912887571141353.post-30719747156013905932013-12-01T06:20:10.164-08:002013-12-01T06:20:10.164-08:00I hope it's okay that I post a comment, but I ...I hope it's okay that I post a comment, but I think your post is spot on. The comparison sums up a lot and I think should help everyone understand on some level why the posts get so contentious. Thank you again for your work with the group.Christinehttps://www.blogger.com/profile/18103347409012017484noreply@blogger.comtag:blogger.com,1999:blog-2246912887571141353.post-69286238058861801592013-01-08T20:18:31.042-08:002013-01-08T20:18:31.042-08:00Hello.
I'm Rie Nakata.
Japanese.
I live in Ja...Hello.<br /><br />I'm Rie Nakata.<br />Japanese.<br />I live in Japan.<br /><br />I have a daughter of achondroplasia.<br />It is two months old.<br /><br />I found your blog If you are looking at a BMN-111.<br />I'm not good at English.<br />Includes the use of the blog, do not know yet.<br />I'm sorry there was rude.<br /><br />I want to participate in the Phase 2 study.<br />How doAnonymoushttps://www.blogger.com/profile/14423814064572933756noreply@blogger.comtag:blogger.com,1999:blog-2246912887571141353.post-34042473381674121332012-12-19T10:20:31.125-08:002012-12-19T10:20:31.125-08:00You should consider enrolling Caitlin into the obs...You should consider enrolling Caitlin into the observational study that will allow for the natural history of achondroplasia to be better understood. (http://clinicaltrials.gov/ct2/show/NCT01603095?term=bmn+111&rank=2) This helps as a control for when the Phase 2 study starts with kids on drug.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-2246912887571141353.post-30547469843747202202012-02-29T11:15:11.622-08:002012-02-29T11:15:11.622-08:00Thank you for this post...I was really curious whe...Thank you for this post...I was really curious when I heard the press release but there was no info to be found! Thanks for the great information.Anonymoushttps://www.blogger.com/profile/08947372143950508859noreply@blogger.comtag:blogger.com,1999:blog-2246912887571141353.post-60973225400001124162012-02-24T12:16:34.041-08:002012-02-24T12:16:34.041-08:00Thanks Mike! Dan and I had discussed this ... and ...Thanks Mike! Dan and I had discussed this ... and wondered about how it would effect the LP features, as in the recessive midface. We knew obviously it made the bones grow "longer", but had wondered about the other "aspects". All good info provided ... and I think you and Cheryl made the right decision for Caitlin :o)Caden and Mommyhttps://www.blogger.com/profile/03200315635933919520noreply@blogger.comtag:blogger.com,1999:blog-2246912887571141353.post-53091105395488459292011-09-18T18:13:32.661-07:002011-09-18T18:13:32.661-07:00This is a sad loss. She still lives on through her...This is a sad loss. She still lives on through her family and friends who keep her stories alive. RIPBeauty Hairemhttps://www.blogger.com/profile/03393804028351383396noreply@blogger.comtag:blogger.com,1999:blog-2246912887571141353.post-32346977536993926812011-09-18T18:09:04.991-07:002011-09-18T18:09:04.991-07:00What an adorable girl and I must say the girl has ...What an adorable girl and I must say the girl has a sense of taste! If people can see her ear rings then it's all worth cutting off!! Lol. How adorable.Beauty Hairemhttps://www.blogger.com/profile/03393804028351383396noreply@blogger.comtag:blogger.com,1999:blog-2246912887571141353.post-53030889794655904822011-05-18T06:02:48.532-07:002011-05-18T06:02:48.532-07:00We are coming a long way though MIke. I was so ha...We are coming a long way though MIke. I was so happy yesterday when a person wrote an inappropriate joke on a business facebook page mocking LPs. The comments were 90% mocking him for his insensitivity. We have a long way to go, but people like us and our children are making a difference!Kimhttps://www.blogger.com/profile/03926703682445820266noreply@blogger.comtag:blogger.com,1999:blog-2246912887571141353.post-43191861466832005162011-01-17T06:25:40.333-08:002011-01-17T06:25:40.333-08:00I love Caitlin's haircut - she's so adorab...I love Caitlin's haircut - she's so adorable! I would have had a hard time cutting her long, pretty hair too. That is too cute that she was ok with getting her haircut after telling her that it would be easier for people to see her earrings with shorter hair. :) The kids' haircut places are so much fun!Greene Familyhttps://www.blogger.com/profile/09886738568520367582noreply@blogger.comtag:blogger.com,1999:blog-2246912887571141353.post-61754270379445986832011-01-02T18:34:56.718-08:002011-01-02T18:34:56.718-08:00Our place is called Divas n' Dudes. I wish I ...Our place is called Divas n' Dudes. I wish I thought up this idea. Caits looks so darn grown up and pretty! Her little grin is too much!Kimhttps://www.blogger.com/profile/03926703682445820266noreply@blogger.comtag:blogger.com,1999:blog-2246912887571141353.post-48755366660711446992010-12-30T16:41:37.492-08:002010-12-30T16:41:37.492-08:00Caitlin is absolutely too cute! I just started my ...Caitlin is absolutely too cute! I just started my blog recently, my 6 year old also has Achondroplasia, so I'm trying to start making some "blog friends" and I found your blog! I just wanted to say how adorable she is!<br /><br />Meredith:)Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-2246912887571141353.post-5906298035613044072010-12-28T11:48:29.166-08:002010-12-28T11:48:29.166-08:00Too cute! I love those kids haircut places - why ...Too cute! I love those kids haircut places - why didn't they have them when we were kids? :-)Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-2246912887571141353.post-69689996220017671672010-11-18T08:54:36.598-08:002010-11-18T08:54:36.598-08:00Beautifully written Mike. We were so sad to hear t...Beautifully written Mike. We were so sad to hear the news but really shocked too! She will be greatly missed by so many people as she has touched so many of our hearts! She was always there for us offering help for Sonya through the foundation they had set up in honor of Joseph. I'm sure she is smiling from above on all of us with Joseph in her arms again.Melissa Swartleyhttps://www.blogger.com/profile/11688196881304259275noreply@blogger.comtag:blogger.com,1999:blog-2246912887571141353.post-37113438976755261652010-11-12T11:20:43.947-08:002010-11-12T11:20:43.947-08:00I'm so sorry, Mike. My thoughts and prayers go...I'm so sorry, Mike. My thoughts and prayers go out to her family.Cristenhttps://www.blogger.com/profile/01374983418205602370noreply@blogger.comtag:blogger.com,1999:blog-2246912887571141353.post-37634380968529707862010-11-12T07:23:50.485-08:002010-11-12T07:23:50.485-08:00Beautiful post. I'm so sorry for your loss. ...Beautiful post. I'm so sorry for your loss. Erin sounds like such an amazing mom/wife/friend from all that I have heard, and I'm sorry I did not get the chance to know her. We are keeping her family and friends in our thoughts and prayers.Greene Familyhttps://www.blogger.com/profile/13165091786404401790noreply@blogger.comtag:blogger.com,1999:blog-2246912887571141353.post-89604638000549800272010-11-09T17:15:06.687-08:002010-11-09T17:15:06.687-08:00Mike, that was beautiful. I am in such a state of ...Mike, that was beautiful. I am in such a state of shock. Erin and I were just bantering over the Yankees and Rangers two weeks ago. Tragic. So sad.Kimhttps://www.blogger.com/profile/03926703682445820266noreply@blogger.comtag:blogger.com,1999:blog-2246912887571141353.post-22726198747751696062010-11-09T13:33:17.477-08:002010-11-09T13:33:17.477-08:00This is very, very sad. I am very sorry.
My thoug...This is very, very sad. I am very sorry. <br />My thoughts and prayers are with her family and friends.<br /><br />Rest in peace!<br />Sincerely,<br />A.~R.E. ~http://www.photographybyre.com/noreply@blogger.comtag:blogger.com,1999:blog-2246912887571141353.post-8049128879389336212010-11-09T13:31:09.197-08:002010-11-09T13:31:09.197-08:00Very well written. Erin sounds like she was an ex...Very well written. Erin sounds like she was an extraordinary person.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-2246912887571141353.post-66949431854536390892010-09-23T12:48:24.835-07:002010-09-23T12:48:24.835-07:00Awesome Post Mike! You two are very lucky :0)Awesome Post Mike! You two are very lucky :0)Caden and Mommyhttps://www.blogger.com/profile/03200315635933919520noreply@blogger.comtag:blogger.com,1999:blog-2246912887571141353.post-3275634477276818792010-09-01T20:39:56.738-07:002010-09-01T20:39:56.738-07:00Beautiful. She didn't do so bad herself, you k...Beautiful. She didn't do so bad herself, you know!JackieMacDnoreply@blogger.com