tag:blogger.com,1999:blog-257209375427878024.post5927155428127037103..comments2023-11-11T00:44:20.900-08:00Comments on Bella's Blessings: February 8, 2011: Back to CA...Bella's Blessingshttp://www.blogger.com/profile/09372603162401786615noreply@blogger.comBlogger10125tag:blogger.com,1999:blog-257209375427878024.post-89083771849788416462011-02-09T19:42:17.223-08:002011-02-09T19:42:17.223-08:00I started to think last night after I went to bed ...I started to think last night after I went to bed and I should have stopped sooner than I did with my questions...my thoughts were not coming clearly. ;) It is so interesting to read your answers...I cant wait for more. I am so glad that they are making changes in the protocol for the youngest patients. It just makes my heart hurt for the "losses"...Bella, Elle and Sarah.<br /><br />I am so glad you are back home safely. Sorry it isnt an easy transition back. <br /><br />Sending my love to all and the sweetest of kisses for Ali.<br /><br />Denise WIDenisehttps://www.blogger.com/profile/13295097495507100702noreply@blogger.comtag:blogger.com,1999:blog-257209375427878024.post-13457828500071119332011-02-09T13:53:48.994-08:002011-02-09T13:53:48.994-08:00Wow - great answers (and I know this is just the t...Wow - great answers (and I know this is just the tip of the iceberg!) Can't wait to hear more. Glad you're back in CA, and praying that the "new normal" will return quickly. <br /><br />Love to all of you!<br />Laura (for the Team)Laura Ahttps://www.blogger.com/profile/06701139472899714172noreply@blogger.comtag:blogger.com,1999:blog-257209375427878024.post-76517544424609021622011-02-09T12:16:17.194-08:002011-02-09T12:16:17.194-08:00De-lurking ;-) to ask some questions
1) Donor cel...De-lurking ;-) to ask some questions<br /><br />1) Donor cells seem to be doing their job slowly, to say the least. Results on the receiver's skin aren't all that spectacular. Are doctors SURE this is a correct line to follow?<br /><br />2) i have been following Sam Sheridan's blog for quite a while now, and EJ's as well. EJ's life is HELL right now, and Sam went to terrible times too. ... there are several examples of kids who underwent the BMT and their skin/life hasn't improved all that much. The RISK is so high, for such a little improvement...what do doctors think about it?<br /><br />3) I read on DEBRA Spain's web that there is a research going on in Spain where they are trying to create artificial skin. What do doctors in UofM think about the other lines of research being done in other parts of the US or the world?<br /><br />that's it for now.<br /><br />I miss Bella. <br />Love and hugsjardinera lindahttps://www.blogger.com/profile/16932704231886236979noreply@blogger.comtag:blogger.com,1999:blog-257209375427878024.post-37769903072083601312011-02-09T10:57:53.501-08:002011-02-09T10:57:53.501-08:00Sorry it's been a while, but I'm thrilled ...Sorry it's been a while, but I'm thrilled to hear of all of the great things that will hopefully happen. From a selfish standpoint, do you see the advances that you are discussing affecting EB Simplex also?<br />I can't believe Ali lost a tooth already. Katie is so excited to lose her first one. I have a feeling that, if I tell Katie that Bella has lost a tooth, Katie will grab some pliers to pull hers out.<br />Thanks you for all of your help in the EB community.<br /><br />Rob Hendrickson (and Kristin, Katie and Lizzy too)Rob Hendricksonnoreply@blogger.comtag:blogger.com,1999:blog-257209375427878024.post-4770890923252889442011-02-09T09:15:19.189-08:002011-02-09T09:15:19.189-08:00Welcome back to the Tundra, and thanks for the det...Welcome back to the Tundra, and thanks for the details. I continue to be awed by your and Ang's ability to go through the grief journey with such grace and to use it for something so much bigger than yourselves and your pain. It is very, very clear that we are on the cusp of a miracle.Lynnenoreply@blogger.comtag:blogger.com,1999:blog-257209375427878024.post-75002519088283773462011-02-09T08:58:26.668-08:002011-02-09T08:58:26.668-08:00Music therapy was something Dr. Richard Fratianne ...Music therapy was something Dr. Richard Fratianne already had introduced to the burn unit at MetroHealth Medical Center when he had surgery for a brain tumor in 1999. <br /><br />But during his recovery and rehabilitation, he came to know music therapy's power for himself. <br /><br />While he was grateful to be alive after surgery removed the benign tumor, he also was distressed by the idea that he might never be able to operate on patients again -- performing delicate surgery on burn patients was his life's calling. <br /><br />"So I was pretty shaken," said Fratianne, founder of MetroHealth's Comprehensive Burn Care Center. "The surgery had discombobulated my brain, and you can't have that and be a surgeon in a critical-care unit. <br /><br />"I was trying to recover, but things weren't working right. I didn't think I'd have the mental skills again that I needed to return to my profession." <br /><br />A MetroHealth music therapist paid him a visit in the hospital's brain rehabilitation unit, knowing that he had played piano, by ear, for most of his life. He couldn't do that anymore, either, it seemed, but he began playing a melody slowly, with one finger, then two. "And gradually, sitting at the piano, I started getting some of that feeling back in my brain. What I recognize now . . . was that music involves every part of the human brain. To play music requires rhythm, melody, timing, timbre, harmonics, physical manipulation and responses." <br /><br />What was happening, Fratianne said, was that he "was being forced to integrate all parts of brain function. As it came back, I regained my ability to do other things that the rehab therapists were asking me to do." <br /><br />Since then, there have been many studies on neuroplasticity -- loosely, the way that the brain rewires itself to go around damaged parts -- and how it is enhanced through the experience of music. This especially has been seen in the brains of stroke patients, he said. <br /><br />Fratianne's mental and physical skills came back, and three months after his brain surgery he was able to operate again (the first time, he did so with a backup surgeon next to him, ready to take over.) <br /><br />"For a surgeon, that's an incredibly short amount of time to come back, and I can't help but think that it was music therapy that turned the corner for me. " <br /><br />Not related to your post but thought you would find this interesting. He is an awesome and highly respected doctor in our hospital. Glad your trip was so invigorating for you! THE CURE WILL BE FOUND!!<br /> <br /> <br /> <br /> <br /> <br /> <br />MetroHealth Information Village © 1999-2011 The MetroHealth System<br />Send mail to webmaster@metrohealth.org with questions or comments about this web site.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-257209375427878024.post-35580494377817754392011-02-09T07:39:53.277-08:002011-02-09T07:39:53.277-08:00Glad you had a safe trip home...and yes it makes t...Glad you had a safe trip home...and yes it makes total sense. Have I told you both lately how amazing you are? Well, you are. I can't imagine going back to RMH and seeing Bella's things there. She is so cute in that picture. Its so great that you have so many pictures. You are right, as few people as possible should ever have to feel that way. I love hearing about the research here at the U. <br /><br />I know I have told you this in a message, but I wanted to share it here so others could read. We have an inter-professional course working with other academic health students (I am a pharmacy student), and I was asking a couple medical school students if they have heard of EB to tell them Bella's story. They had not only heard of it, but they had been lectured about it in every class for an entire week on it! How awesome! Go U of M! <br /><br />Have a great day Ringgolds!Amanda Corinhttps://www.blogger.com/profile/10474125031425026139noreply@blogger.comtag:blogger.com,1999:blog-257209375427878024.post-39831355722307300682011-02-09T06:41:28.731-08:002011-02-09T06:41:28.731-08:00i CANNOT wait to hear about Ali's day...
Serio...i CANNOT wait to hear about Ali's day...<br />Seriously. CANNOT wait.<br />Can you post in the afternoon when she comes home??<br />:)<br /><br />And, did the tooth fairy come through?Sarahttps://www.blogger.com/profile/12487216236220020325noreply@blogger.comtag:blogger.com,1999:blog-257209375427878024.post-61210788256931192882011-02-09T02:16:36.877-08:002011-02-09T02:16:36.877-08:00Thanks for your post, Tim, all of the research ide...Thanks for your post, Tim, all of the research ideas sound marvelous! Wish you and the U of M doctors success! <br /><br />Sorry that you feel lonely without Bella in the house. She is with you, always, just not to be seen.<br /><br />ElenaAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-257209375427878024.post-3310976207824088652011-02-09T00:34:57.601-08:002011-02-09T00:34:57.601-08:00Glad you are safely home and sad it had some empty...Glad you are safely home and sad it had some empty feelings.<br /><br />AWESOME and fascinating. So wonderful you are sharing all your info. So exciting to hear there is hope. <br /><br />Congrats!!Anonymousnoreply@blogger.com