Guest guest Posted September 11, 2004 Report Share Posted September 11, 2004 what about the bed tents would that work as well and be tons cheaper? kim lauger wrote: > When Dylan's doctor found out he was 8 and still in a crib he was > amazed. > The trick is that he likes it in there, he can climb out if he wants, > but he > does not choose to. Even in his wild states he stays in the crib, > which > tells me it is meeting his needs. Unfortunately he is outgrowing it. > I want > the Vail Bed for him to have a twin size version of the same thing. > > My approach is working to get more medical information about the > irregularities of Dylan's nervous system. I firmly believe these are > not > just behaviors in the sense of throwing to get attention (actually I > work > really hard at keeping it from progressing to that point, another > reason to > need the bed) but are physical manifestations of what is happening > within > his body. My documentation and that of the OT who sent in info > supports > that. > > As the articles that are to be published in the American Journal of > Medical > Genetics on behavior in CHARGE, I think they will help support the > physical > nature of these problems. > > I also know that one fear of the state insurance plan Dylan is on, is > if we > approve it for one, we have to approve it for all, so they deny for > everyone. > > As I said, we will keep plugging away at it. At least they are > willing to > talk with me about it, instead of sending out a blanket denial letter. > > (If anyone knows of an adult size playpen with mesh sides, this would > also > meet his needs, but since it is not developmentally appropriate, I > don't > think they are out there - instead folks just get restrained to their > chairs > with posey jackets to preserve their dignity. Ha!) > > Kim > > Re: Vail Bed > > > In a message dated 9/10/04 12:48:38 PM, CHARGE writes: > > << I knew it would be a miracle to get it funded, but I am not done > advocating > > for it yet. >> > > Kim-- > > I hope you're successful getting the bed funded. Please let me know > your > approach. Eddie ( 5 next month) still fits nicely in his crib, but the > day > will > come soon when we'll be where you are now. > > Joanne > > > > Membership of this email support groups does not constitute membership > in > the CHARGE Syndrome Foundation. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter) > please contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > 7th International > CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. > Information will be available at our website > www.chargesyndrome.org or by calling 1-. In Canada, you > may > contact CHARGE Syndrome Canada at 1- (families), visit > www.chargesyndrome.ca, or email info@.... Thank you! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2004 Report Share Posted September 11, 2004 For Dylan, the tents are confining and scary, they are not see through, they do not have the resonance or the feel of the nets, or the strength to endure a " Dylan party " , or the ability to keep him from getting out of bed at night unsupervised. I have looked at lots of different ones, to see if I could find one that I can envision Dylan being comfortable in. Kim Re: Vail Bed > > > In a message dated 9/10/04 12:48:38 PM, CHARGE writes: > > << I knew it would be a miracle to get it funded, but I am not done > advocating > > for it yet. >> > > Kim-- > > I hope you're successful getting the bed funded. Please let me know > your > approach. Eddie ( 5 next month) still fits nicely in his crib, but the > day > will > come soon when we'll be where you are now. > > Joanne > > > > Membership of this email support groups does not constitute membership > in > the CHARGE Syndrome Foundation. > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter) > please contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > 7th International > CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. > Information will be available at our website > www.chargesyndrome.org or by calling 1-. In Canada, you > may > contact CHARGE Syndrome Canada at 1- (families), visit > www.chargesyndrome.ca, or email info@.... Thank you! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2004 Report Share Posted September 11, 2004 Kim- Here's what we did for Aubrie. She also never tried to climb out of her crib. I liked knowing that she wouldn't wake and wander the house while I slept. So when we were ready for something twin sized, we built a picket fence bed. The bad thing is that it's unsafe as far as CPSC guidelines. If she did climb out, she could get caught on one of the pickets. But we knew she wouldn't. A different kind of bed could be built for a boy that didn't have slats. Would he enjoy any kind of box-like bed -- you know, with walls maybe a foot high. Enough to give parameters that he won't climb out of even though he physically could. Then you could decorate it to be a fire truck, a race car, whatever would please him. This year, we took the end off so that she can get in and out on her own but she still has the sides to protect from falling out. She is all over in her sleep and even she feels most comfortable with the barriers. We gave her the choice of taking off a side or the end. I know it's not something that will work for everyone, but it has worked well for us so far. Maybe it'll spark your imagination to come up with something that will meet your needs until you can get funding for the Vail bed. Michele W Aubrie's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2004 Report Share Posted September 12, 2004 we just got approved for a bed for erika. it is a safe sleeper bed. _www.safesleeper.com_ (http://www.safesleeper.com) it is a safety bed. it has 12 inch clear bed rails so she can see out and the one we got folds up 12 and then another 12 for a total of 24 inches if you need it. trys to pull her self up now with her toys r us bed rail. and she has also gotten stuck in it and has taken it down. i had to fight to get it paid for, and even went as far as a fair hearing but i won. i also showed them an article i had onthe # of bed deaths from children getting stuck in between the rails and the mattress. we haven gotten the bed yet, it was jsut ordered. it is $5,000. cathie, mom to erika Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2004 Report Share Posted September 12, 2004 we just got approved for a bed for erika. it is a safe sleeper bed. _www.safesleeper.com_ (http://www.safesleeper.com) it is a safety bed. it has 12 inch clear bed rails so she can see out and the one we got folds up 12 and then another 12 for a total of 24 inches if you need it. trys to pull her self up now with her toys r us bed rail. and she has also gotten stuck in it and has taken it down. i had to fight to get it paid for, and even went as far as a fair hearing but i won. i also showed them an article i had onthe # of bed deaths from children getting stuck in between the rails and the mattress. we haven gotten the bed yet, it was jsut ordered. it is $5,000. cathie, mom to erika Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2004 Report Share Posted September 12, 2004 DDD likes the safe sleeper bed better, because it is not enclosed - it still makes no sense to me, because if you put the rail all the way up, they can't get out anyway and that is the point. With the amount of kicking Dylan does in bed and the amount of resonance one gets from the plexiglass, I am afraid it would be too intense - I much prefer the mesh, plus the mesh is something he is familiar and comfortable with. If the rails of the safe sleeper bed are up, I think he will feel confined. One bed may be comfortable for one child and not for another, yet the admins make decisions based on what they think would be comfortable, not having lived with our child and knowing the experiences they find comforting and the ones they find confining. I am happy you got the bed for . I think you started the process a little before me, so I am still working at it. Kim Re: Vail Bed we just got approved for a bed for erika. it is a safe sleeper bed. _www.safesleeper.com_ (http://www.safesleeper.com) it is a safety bed. it has 12 inch clear bed rails so she can see out and the one we got folds up 12 and then another 12 for a total of 24 inches if you need it. trys to pull her self up now with her toys r us bed rail. and she has also gotten stuck in it and has taken it down. i had to fight to get it paid for, and even went as far as a fair hearing but i won. i also showed them an article i had onthe # of bed deaths from children getting stuck in between the rails and the mattress. we haven gotten the bed yet, it was jsut ordered. it is $5,000. cathie, mom to erika Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2004 Report Share Posted September 12, 2004 DDD likes the safe sleeper bed better, because it is not enclosed - it still makes no sense to me, because if you put the rail all the way up, they can't get out anyway and that is the point. With the amount of kicking Dylan does in bed and the amount of resonance one gets from the plexiglass, I am afraid it would be too intense - I much prefer the mesh, plus the mesh is something he is familiar and comfortable with. If the rails of the safe sleeper bed are up, I think he will feel confined. One bed may be comfortable for one child and not for another, yet the admins make decisions based on what they think would be comfortable, not having lived with our child and knowing the experiences they find comforting and the ones they find confining. I am happy you got the bed for . I think you started the process a little before me, so I am still working at it. Kim Re: Vail Bed we just got approved for a bed for erika. it is a safe sleeper bed. _www.safesleeper.com_ (http://www.safesleeper.com) it is a safety bed. it has 12 inch clear bed rails so she can see out and the one we got folds up 12 and then another 12 for a total of 24 inches if you need it. trys to pull her self up now with her toys r us bed rail. and she has also gotten stuck in it and has taken it down. i had to fight to get it paid for, and even went as far as a fair hearing but i won. i also showed them an article i had onthe # of bed deaths from children getting stuck in between the rails and the mattress. we haven gotten the bed yet, it was jsut ordered. it is $5,000. cathie, mom to erika Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2004 Report Share Posted September 12, 2004 Kim- I can take a photo and email it to you privately. I'm not skilled at posting yet. I know it's not hard, but I just don't have time to get it figured out, make sure I'm logged in right, etc. Michele W Quote Link to comment Share on other sites More sharing options...
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