tag:blogger.com,1999:blog-27546414.post2726696945210043787..comments2024-02-22T22:56:17.805-08:00Comments on Outrageous Fortune: The Patient Experience: Liveblogging a neurodevelopmental evaluationShastahttp://www.blogger.com/profile/01013565031179610593noreply@blogger.comBlogger9125tag:blogger.com,1999:blog-27546414.post-19521311362948283412011-11-19T20:41:38.015-08:002011-11-19T20:41:38.015-08:00Oh really? I've found alternative therapists v...Oh really? I've found alternative therapists vastly more caring and accommodating, but part of that may just be that they are much smaller offices. I'm sorry to hear you've had bad experiences.Shastahttps://www.blogger.com/profile/01013565031179610593noreply@blogger.comtag:blogger.com,1999:blog-27546414.post-47985947861530308572011-11-19T15:32:01.252-08:002011-11-19T15:32:01.252-08:00Even more frustating to me is that all the alterna...Even more frustating to me is that all the alternative therapies we have tried have not been a much better experience either. My husband does not always get it. He does not get to go to very many appointments. I always feel so trapped and vulnerable- just waiting for another blow.kristinehttp://www.weareabel.orgnoreply@blogger.comtag:blogger.com,1999:blog-27546414.post-32739382468872587152011-08-24T23:50:26.465-07:002011-08-24T23:50:26.465-07:00Good luck tomorrow. Hope you get good news, or at ...Good luck tomorrow. Hope you get good news, or at the very least, status quo news and that they don't throw anything at you that you didn't already know or suspect. And hopefully the parts of the test that *don't* require him to perform will be scheduled during nap time!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-27546414.post-23567303684978598172011-08-24T19:54:18.599-07:002011-08-24T19:54:18.599-07:00Hey Shasta! Wanted to wish you good luck tomorrow...Hey Shasta! Wanted to wish you good luck tomorrow and I hope the appt goes a little better this time. It is so frustrating when they schedule major appts like this while kids usually nap and then they expect them to perform. Good grief. I will be thinking of you tomorrow.Jennyhttps://www.blogger.com/profile/16213590209738598377noreply@blogger.comtag:blogger.com,1999:blog-27546414.post-29334663054628626862011-08-24T13:44:19.467-07:002011-08-24T13:44:19.467-07:00I know the medical system here in Canada all to we...I know the medical system here in Canada all to well, since being diagnosed with my disease. I feel all your frustration with doctors and the system. I will be following you on both twitter and your site. I'm glad I found your site!Rosshttps://www.blogger.com/profile/14665375709991970613noreply@blogger.comtag:blogger.com,1999:blog-27546414.post-62202631483133517402011-08-24T08:40:37.933-07:002011-08-24T08:40:37.933-07:00I'm interested to see how it goes - although I...I'm interested to see how it goes - although I'm too lazy to twitter (or is it tweet, or whatever it is). I will say that I think we have been extremely lucky with our doctors - obviously, our injury was different, so we did start with intensive rehab inpatient, but it was still a waiting game, although the need for therapy was obvious. And our doctors, they know us and I can contact them any time. And I believe we have built an amazing team who will advocate for us with other doctors. I don't know how it happened that we got so lucky, but we did, and I'm thankful, because I see other parents navigate without this, and it's awful. I hope your experience improves soon, though.ferfischerhttps://www.blogger.com/profile/00184449747019920745noreply@blogger.comtag:blogger.com,1999:blog-27546414.post-50839487336240204952011-08-23T21:17:01.681-07:002011-08-23T21:17:01.681-07:00Shasta
I definitely think this is a GREAT idea. A...Shasta <br />I definitely think this is a GREAT idea. And my wish is that you will have a day with respect and insights into Malachi's condition. Be balanced in your editing...and I think it will be insightful for the medical community to see your experience.Deborahhttps://www.blogger.com/profile/11733693657761272894noreply@blogger.comtag:blogger.com,1999:blog-27546414.post-36417073179364588182011-08-23T21:03:47.836-07:002011-08-23T21:03:47.836-07:00YES. The waiting game is the worst part. Katy, I r...YES. The waiting game is the worst part. Katy, I really, really encourage you to research treatment options and alternative therapies. Please don't put your stock in conventional docs as they will underwhelm you. Please read my list of cerebral palsy books to get a head start and see if there is a Feldenkrais/Anat Baniel Method practitioner in your area. This method is what we have had the most luck with.<br />Thanks for your well wishes.Shastahttps://www.blogger.com/profile/01013565031179610593noreply@blogger.comtag:blogger.com,1999:blog-27546414.post-91198218160908426392011-08-23T20:40:56.263-07:002011-08-23T20:40:56.263-07:00The waiting game has been the worst part for me. ...The waiting game has been the worst part for me. It's been two months since my pediatrician told me she was pretty sure my daughter Reagan had CP. We are still yet to meet with her specialist to help confirm or deny this information. I called a ridiculous amount of doctors, and some had waiting lists until June 2012! I had this bomb dropped on me, and no one would help put my mind at ease, or give me a plan of action. We finally have our first appointment with a psychologist on Monday. I've been beating myself up for months. This waiting game is almost worse than any diagnosis they could give. At this point, I just want to help make her life easier, and take the next steps to help her advance physically. My heart goes out to you, and hope your appointment goes well on Thursday. You will definitely be in our thoughts!Anonymoushttps://www.blogger.com/profile/15819831604846096433noreply@blogger.com