tag:blogger.com,1999:blog-257209375427878024.post4582089827975897752..comments2023-11-11T00:44:20.900-08:00Comments on Bella's Blessings: February 9, 2011: Back in the saddle...Bella's Blessingshttp://www.blogger.com/profile/09372603162401786615noreply@blogger.comBlogger8125tag:blogger.com,1999:blog-257209375427878024.post-11427957459289665072011-02-10T18:06:29.053-08:002011-02-10T18:06:29.053-08:00Hi Tim,
Witht eh iPhone launch I have had so littl...Hi Tim,<br />Witht eh iPhone launch I have had so little time to get here - I have to catch up. My supportis with you all and this study - looks like teh best hope out there!<br /><br />My question is I saw and have inferred from your blog and a few of the other kids blogs that as the doc's learn each day they adjust the trial. How quickly do they adjust the protocol?<br /><br />Another question is for those kids that it does not seem to have worked for - they seem to be worse then ever - is there anything the doc's can do for kids like EJ, Sam and McKenzie?<br /><br />Sending you all my best - TinaAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-257209375427878024.post-30204185814521802662011-02-10T16:31:25.827-08:002011-02-10T16:31:25.827-08:00I am fascinated with how far this research team ha...I am fascinated with how far this research team has come and the strides they are making for children with EB. I was wondering if you were able to notice any improvements in Bella's skin soon after the transplant? Also, how long do the doctors/researchers anticipate it will take to make drastic improvements in a child's skin following a transplant?Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-257209375427878024.post-25044359738538144292011-02-10T15:02:06.762-08:002011-02-10T15:02:06.762-08:00Hi Tim-
Thanks so much for all the great answers!...Hi Tim-<br /><br />Thanks so much for all the great answers! And I have no doubt that Ali had a wonderful day at school - can't wait to hear about it!<br /><br />Continuing to pray!!<br /><br />Love from TX,<br />Laura (for Team A)Laura Ahttps://www.blogger.com/profile/06701139472899714172noreply@blogger.comtag:blogger.com,1999:blog-257209375427878024.post-2856962485387021802011-02-10T12:50:56.258-08:002011-02-10T12:50:56.258-08:00Tim,
I've tried posting this question three t...Tim,<br /><br />I've tried posting this question three times now, so I'm going to make it short:<br /><br />Is it common to have kidney issues after bone marrow transplant and/or chemo? Is this unique to the EB kids?<br /><br />Can't wait to hear about Ali's school adventures!<br /><br />Karen Steiner<br />Denver, COkarennoreply@blogger.comtag:blogger.com,1999:blog-257209375427878024.post-40835425063876218132011-02-10T12:44:40.322-08:002011-02-10T12:44:40.322-08:00Tim,
I have read your blog for a while now, but n...Tim, <br />I have read your blog for a while now, but never commented before (I know, I know.. ) Because I have always struggled with what to say to you. I want to comment, but then end up thinking too much about it and end up to concerned with what I would say. So I hope this makes sence, because I am trying not to think too much about it :). <br /><br />You and your family are such an amazing inspiration and I find myself drawing on that inspiration in many areas of my life. You have also taught me about appreciation. I am blessed to be mommy to a beautiful 15 month old girl with healthy skin. I thank God for all the small things about her with your help. Many things that I admittedly took for granted before I have begun to sing His praises for. <br />Mercy Me's song 'Bring the Rain' has become one of my favorites and it makes me think of and pray for your family each time I hear it. The lyrics describe the kind of faith all Christians desire to have but hope never to have to exercise. Your family epitomizes those lyrics. Seeing pictures of each of your (Ang, Ali, and you) faces with a smile on it reminds me that He truly is much greater than our pain. He is the strong deliverer and He IS mighty to save. <br /><br />I will close by saying this; your tenacity and drive for your cause is wonderful. I know that Bella is so proud of her Daddy. <br /><br />Christy TXTheMaineshttps://www.blogger.com/profile/11887208749195182107noreply@blogger.comtag:blogger.com,1999:blog-257209375427878024.post-30501755102613270882011-02-10T07:58:10.341-08:002011-02-10T07:58:10.341-08:00Ali sounds just like Noah. New situations and new...Ali sounds just like Noah. New situations and new people he just embraces...nothing like his mommy. I am so glad he has that quality.<br /><br />One more question...what happens after the bmt? What kind of follow up is required?<br /><br />Sending my love to all and sweet kisses for Ali.<br /><br />Denise WIDenisehttps://www.blogger.com/profile/13295097495507100702noreply@blogger.comtag:blogger.com,1999:blog-257209375427878024.post-21728241667232954202011-02-10T04:55:52.238-08:002011-02-10T04:55:52.238-08:00Tim,
Thanks for your post! It is interesting and...Tim, <br /><br />Thanks for your post! It is interesting and informative. Let's hope the holistic approach gains good results soon!<br /><br />Ali is a wonderful girl - wish her many good friends in the pre-school and nice time there!<br /><br />ElenaAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-257209375427878024.post-14916068940716414442011-02-10T00:31:38.782-08:002011-02-10T00:31:38.782-08:00Dear Tim
i am SO SORRY if my questions sounded ne...Dear Tim<br /><br />i am SO SORRY if my questions sounded negative, that was in no way intendended!!!<br /><br />I am here to support, as i always have, and i truly apologize if you were offended by my questions. <br /><br />I believe though that people watching the documentary for the first time might ask themselves those very same questions. <br /><br />Doctors have to be ready to find people DOUBTING about this -or any other, for that matter!- line of research, and be ready to give sincere answers to solve those doubts.<br /><br />i know i have expressed my doubts in the past, i may have been rude insisting on it. <br /><br />Sorry again, NO OFFENSE INTENDED!!!!<br /><br />Love and hugs<br />juanajardinera lindahttps://www.blogger.com/profile/16932704231886236979noreply@blogger.com