Guest guest Posted March 11, 2008 Report Share Posted March 11, 2008 That is not acceptable. They are in our thoughts and prayers. Rochelle > > > > ----------------------- Re: [Groupmail] > > From: heather@ > > Date: Tue, March 11, 2008 1:14 pm > > To: groupmail@ > > ------------------------------------------------------------------ -- > ------ > > > > Update: > > Hi everyone.....I just got off the phone with and she asked > that I > > update you all on . He had his jacket applied yesterday in > > Melbourne, and had to be rushed to the emergency room in the middle > of the > > night for trimming. He was purple, had very low sats, and was not > feeling > > well....I believe he had vomitted a few times, as well.... > Apparently, he > > had developed a case of cast syndrome due to the tightness, and the > chest > > expansion window was not sufficient (big enough), and no hole on the > > concavity. I know I am leaving out some very important details, > but Mo > > can give you all of that when she can get back on line...This is > > unacceptable for . He is too fragile to undergo casting done > wrong. > > Our children deserve better. I will update more as soon as I can. > > Please send Mo and your strength, and I will post again as > soon as > > I hear back from her. > > > > )ISOP) > > > > > Hi , > > > > > > > > > > > > Yes I agree, we do have to go public and tell Shanice's story, so > that > > we can make this treatment available in Australia for children like > > Shanice, and all the other kids who will eventually need to > have > > surgery. At > > > the moment I really don't know what is going on with our funding > > application. It seems her specialists can't get their acts > together. > > We see her respiratory specialist next week but haven't had any > response > > from Dr Woodland about the funding since our initial meeting. We > don't > > see him again until the end of the month, we can't wait that long. > We > > feel so angry > > > that precious time is being wasted. They are playing with our > child's life > > > and we can't watch and wait anymore for them to do something. > This has > > been > > > going on for far too long now. It seem like the only person who > gives a > > dam > > > is Dr , I received his submission yesterday, it is about > 2 > > inches thick and contains correspondence and supporting evidence of > the > > benefits of > > > the VEPTR treatment. The more we read of this life extending > treatment the > > > more determined we are to help find a way to make it available in > > Australia. > > > One of the documents I received, mentioned briefly about the > future of > > the VEPTR and how they are currently working on making it self > expanding > > to eliminate the number of follow up surgeries. > > > > > > > > > > > > Do you think you would be able to put me in touch with your > contact for > > TodayTo Night? We are getting very desperate now; the way things > are > > going > > > we are not very confident we are going to get our funding so we > have to > > find > > > another way of getting Shanice treated. We were even thinking of > > starting to fund raise now as we don't want to waste anymore time. > Can > > you let me know how we go about it? > > > > > > > > > > > > Shellie I think you are right we do need to advocate to make the > > treatment available in Australia, it would be fantastic if Dr > > > could come here > > > to teach the Aussie surgeons what to do. I really don't > understand why > > they > > > don't support this type of treatment over here. > > > > > > > > > > > > I spoke with yesterday; she said she was going to Sydney > in April to > > > seek an opinion from Angus Gray and another orthopaedic surgeon. > She > > was also keen on contacting Dr . It sounds like her > daughter > > also needs > > > something done quite quickly. She has been in halo traction for > three > > months. It seems like they do it very differently in Brisbane. > She has > > been cared for at home and also goes to school everyday in her halo > > walker. > > > told me that there were about four or five kids in halos > and that > > one > > > nine year old had just come out of hers and had a fusion. It > sickens me to > > > think that the surgeons over here think that is the only solution. > > > > > > > > > > > > thanks for your kind words I feel like we are so close but > yet so far > > > from getting this treatment for Shanice, but we are not going to > give up > > that's for sure. > > > > > > > > > > > > Well I better go now have to be up in a few hours. > > > > > > > > > > > > Take care everyone, > > > > > > > > > > > > > > > > > > > > > > > > I am re-sending this message, I actually sent it early hours of > this > > morning > > > but it was sent back. Hope it works this time > > > > > > > > > > > > > > > > > > > > > > > > _____ > > > > > > _______________________________________________ > > > Groupmail mailing list > > > Groupmail@ > > > > http://scoliosiskidsaustralia.com/mailman/listinfo/groupmail_scoliosis > kidsaustralia.com > > > > > > > > > > > _______________________________________________ > > Groupmail mailing list > > Groupmail@ > > > http://scoliosiskidsaustralia.com/mailman/listinfo/groupmail_scoliosis > kidsaustralia.com > > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.