tag:blogger.com,1999:blog-2782358493545454466.post9118319454525846865..comments2023-06-27T09:14:59.271-04:00Comments on Mason's Spina Bifida Journal: Glasses and a New AccessoryTristanhttp://www.blogger.com/profile/14483248387092516827noreply@blogger.comBlogger5125tag:blogger.com,1999:blog-2782358493545454466.post-33773767737650881322014-03-12T00:38:39.206-04:002014-03-12T00:38:39.206-04:00I agree with the recommendation to see an osteopat...I agree with the recommendation to see an osteopath first. It used to be a standard of care everywhere, but in America pills and surgery seem to be the first course of action for the majority.<br /><br />I really feel your pain over the handicap placard. Each time my daughter had another test and the doctors revealed another thing "wrong" with her, my heart just broke for her and I grieved and grieved. After breaking my back carrying her, at first, I was so relieved when we finally got her placard (she was not "bad enough" to need a wheelchair). I hope that after using your placard a few times you will see it as your new best friend, despite what it means that you have it in the first place. 15 years ago, the cranial surgery that my baby had last Nov. wasn't invented yet. I can't wait to see what's been invented 15 years from now for our kids with SB and related conditions.Khttps://www.blogger.com/profile/07033823622722768455noreply@blogger.comtag:blogger.com,1999:blog-2782358493545454466.post-38123439755091723152014-03-11T18:27:32.040-04:002014-03-11T18:27:32.040-04:00Tristan,
After I read this (I did not have time to...Tristan,<br />After I read this (I did not have time to comment then), I wondered "will these be the emotions I will have? will I feel these same things?" So many unknowns while we wait!<br />Thank you for pointing us to choose to stay positive. To choose joy. I am going to work very hard to have those kind of responses too.<br />Those orange glasses are ADORABLE! Mason is terrible cute in them! I love them!<br />Will be saying some prayers for you all.<br />Steph Steph Mhttps://www.blogger.com/profile/10068207963275375906noreply@blogger.comtag:blogger.com,1999:blog-2782358493545454466.post-66510614703002773682014-03-11T09:09:53.242-04:002014-03-11T09:09:53.242-04:00Hang on. Some days are harder than other, aren...Hang on. Some days are harder than other, aren't they? I'm sorry. Just hang on. You're doing such a good job!Anaisehttps://www.blogger.com/profile/03606090702540012629noreply@blogger.comtag:blogger.com,1999:blog-2782358493545454466.post-88766727211038517202014-03-11T07:49:51.839-04:002014-03-11T07:49:51.839-04:00Hi Tristan,
as for the kind lady... I understand ...Hi Tristan,<br /><br />as for the kind lady... I understand you.<br />That's why I started describing SB as "paraplegic from birth" <br />It sounds dramatic but it's just simply what our children are.<br />The good thing about this description is that people don't think of mental disability as they would when you say "permanently disabled"<br />In my language (and my country's law) "disabled" describes a condition that remains the same for 6 months or more.<br />So adding "permanently" is not necessary at all...<br /><br />All the best for the MRI.<br />As for the tension and everything ... before you do a TC-surgery, consider seeing an osteopath.<br />Ours did miracles to my daughter just be lying the hands on her head.<br />We have an appointment every 2 - 6 weeks.<br />She sleeps much more relaxed now (no more bent like a Z: head in the neck, legs bent at the hips and knees stretched out)<br />At some point a surgery can not be avoided but osteopathy is also recommended by some experts when it comes to TC, ACMII and Syrinx.<br />However it's not as "official" as other things so even over here the insurance doesn't cover it.<br /><br />Greetings from Germany<br />Steffi with AmayaAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-2782358493545454466.post-53927797613630171262014-03-11T02:17:35.409-04:002014-03-11T02:17:35.409-04:00I LOVE how is glasses match his hair so perfectly....I LOVE how is glasses match his hair so perfectly. He is absolutely adorable.clin133https://www.blogger.com/profile/03138520153081523748noreply@blogger.com