tag:blogger.com,1999:blog-2556530923850418331.post6174075832052116480..comments2024-02-21T16:52:09.540-08:00Comments on A Life Less Ordinary: The Post I Didn't Want to WriteAmyhttp://www.blogger.com/profile/00105042832608271631noreply@blogger.comBlogger8125tag:blogger.com,1999:blog-2556530923850418331.post-38152939114026230002012-10-20T13:31:45.408-07:002012-10-20T13:31:45.408-07:00Hey, I just stumbled on to your blog. Thanks so m...Hey, I just stumbled on to your blog. Thanks so much for sharing E's and your story.I'm so sorry to read of the new issue's E is having with spasticity in spite of the SDR. I can so relate to your heartache and frustation with this. I;m mom to a daughter,with spastic quad cp, and her spasticity was always an issue. Unlike E though, my Danielle was severely neurologically impaired, non verbal and would never walk. We did the Balcofen pump surgery at age 12, and had 5 good years where it really made a difference. I inquired about SDR once with her MD at the movement clinic, he informed me that the nerve roots they clip with SDR can grow back. I hope this isn't the case with E. <br />If you ever want to communicate with other families please check out <a href="http://www.cpfamilynetwork.org/" rel="nofollow">Cerebral Palsy Family Network</a>. We have many families experiencing the same frustrations. Hopefully they can share their experience and advise. I'll be hoping and praying you find the answers you seek.Leehttps://www.blogger.com/profile/14912552139114265707noreply@blogger.comtag:blogger.com,1999:blog-2556530923850418331.post-15983607454496964012012-10-20T11:58:54.058-07:002012-10-20T11:58:54.058-07:00One more thing, Elena might be taking a long time ...One more thing, Elena might be taking a long time to get from point A to point B because the kids in her class all get up and move to another part of the classroom very fast(7 year olds have a thing for speed) and she doesn't want to get run over and fall so she waits until there is a clear path? Just a thought. <br /><br />Margot Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-2556530923850418331.post-82132599315096288192012-10-20T08:49:05.763-07:002012-10-20T08:49:05.763-07:00Is E still doing horse riding? I find it great for...Is E still doing horse riding? I find it great for body awareness but thats because if I want to get my horse doing x dressage move I HAVE to get my weight in the right spot<br /><br />At least you as a parent you understand the move from trunk stuff(mine don't)maynoreply@blogger.comtag:blogger.com,1999:blog-2556530923850418331.post-45759358871529251262012-10-15T11:15:10.213-07:002012-10-15T11:15:10.213-07:00I hate those times when you think everything's...I hate those times when you think everything's going great and then you get slammed with something like that. That's kind of how I've felt since we found out Avery probably has some rotational scoliosis. Sucks. Have you looked into the alcohol block with ethyl instead of phenol? I know you said you weren't a fan of phenol, but ethyl works differently. That's what Avery had when she had her SPML done in August 2011, and we're still almost completely clonus-free. This link talks a bit about the difference between phenol and ethyl, although you probably already know, being all science-y and stuff ;)Josephinehttps://www.blogger.com/profile/14833469209505496335noreply@blogger.comtag:blogger.com,1999:blog-2556530923850418331.post-10462349731097938032012-10-14T15:20:35.649-07:002012-10-14T15:20:35.649-07:00I am not sure where you are located but have you t...I am not sure where you are located but have you thought of seeing a Neurologist at a Spasticity Clinic? I am told they have them. We travel to see our dr. and in Lafayette LA they are in process of getting a Spasticity clinic going. My son is very severe and non verbal , can't sit or roll yet. I keep thinking if we can deal with the spasticity maybe he can have a bit more function.<br />Tami and Bobby Sisemore Familyhttps://www.blogger.com/profile/08187334120592808316noreply@blogger.comtag:blogger.com,1999:blog-2556530923850418331.post-56215667821905281162012-10-14T15:06:25.876-07:002012-10-14T15:06:25.876-07:00AMY: I AM SURE E IS DOING THE VERY BEST THAT SHE C...AMY: I AM SURE E IS DOING THE VERY BEST THAT SHE CAN.. I TOO HAVE CP AND WHEN I WAS E'S AGE I WAS ALSO BEHIND IN GETING FROM POINT A TO POINT B.. SHE IS BRIGHT AND SMART AND I AM SURE SHE WILL DO WELL..<br /><br />AS FOR KEEPING HER HEELS DOWN.. I HAVE THE SAME PROBLEM I TOO CAN STAND WITH FEET FLAT BUT WHEN WALKING I TEND TO BE ON MY TOES AND I HAVE TO THINK ABOUT EVERYTHING BEFORE I DO IT.. <br /><br />NO MATTER HOE HARD WE TRY I THINK SPACITY ALWAYS MANAGES TO KICK US IN THE BUTT!<br /><br />MELISSAAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-2556530923850418331.post-74375519859459966342012-10-14T12:55:04.865-07:002012-10-14T12:55:04.865-07:00After reading this I sent you a long email with su...After reading this I sent you a long email with suggestions that might help you with Elena's spasticity since I wasn't sure if everything I had to say would fit here. <br /><br />Margot Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-2556530923850418331.post-75575391927717742362012-10-13T19:39:49.925-07:002012-10-13T19:39:49.925-07:00We always assumed Peyton's lower leg issues/ti...We always assumed Peyton's lower leg issues/tippy toe was from her CP. Her legs were very stiff and she was ALWAYS on her tippy toes..but after her cord was released they both greatly improved, almost immediately. Has she had a lumbar MRI just to be sure nothing else is going on that could be causing the lower limb issues besides her CP? <br /><br />Hugs..Just the Tiphttps://www.blogger.com/profile/07207455676987959105noreply@blogger.com