tag:blogger.com,1999:blog-8089674908221332743.post6337921516013731714..comments2023-05-25T11:44:48.635-04:00Comments on A Very Special Case.: Our Cranio Journey.Liz McNultyhttp://www.blogger.com/profile/09455152824175145552noreply@blogger.comBlogger2125tag:blogger.com,1999:blog-8089674908221332743.post-63603990803903369452014-11-02T21:04:36.155-05:002014-11-02T21:04:36.155-05:00PS: I've signed up for email alerts - thank yo...PS: I've signed up for email alerts - thank you!<br />Erica<br />www.rarelydefined.blogspot.comErica J. Thielhttps://www.blogger.com/profile/03637159089571195980noreply@blogger.comtag:blogger.com,1999:blog-8089674908221332743.post-54997959118201135022014-11-02T21:02:32.748-05:002014-11-02T21:02:32.748-05:00One of my Infusion Nurses just shared your sons bl...One of my Infusion Nurses just shared your sons blog with me and I am grateful to read a great outcome. Although different due to a different underlying cause (MPS I Hurler Scheie Syndrome causing secondary Commun. Hydro - un-dx'd but compensated as a child. Shunted in my 20's, 2 working shunts though many complications.<br />Anyways my Peds Neurosurgeon has mentioned many times potentially doing a CVE<br />to thin the skull bone and honestly it scares the beejesus out of me! I'm not sure I could go through with it.<br />Thank you again for sharing your sons journey,<br /><br />EricaErica J. Thielhttps://www.blogger.com/profile/03637159089571195980noreply@blogger.com