Guest guest Posted February 6, 2005 Report Share Posted February 6, 2005 It is hard to believe that our kids are so fragile with heat, even in the winter. I bet you get alot of the same "looks" I do when going out. I'm waiting for a little old lady to tell me off when I have Gracie walking around in 30 degree weather with her coat unzipped because I know she is hot. If I am right, I remember you talking about making an indoor playground for your girls. We are in the process of buying a new home and want to do the same. Ideally we would love to find a house with a sun room that we can put AC in. I have some ideas about how to get a swing set in there, and would love to share. If you have any thoughts maybe we can "brainstorm" together. You do have cooling vests for your girls, right? If not please let me know, there are alot of great resources to get them, for free. We were able to get MDA to pay for Gracies vest, hat, wristbands, neck and, a cooling seat for her carseat, and even a cool teddy bear. This is the time of year to go about these things so you can get it for summer. Best wishes. Find files on your PC instantly with the new MSN Toolbar Suite beta – FREE! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2005 Report Share Posted February 6, 2005 It is hard to believe that our kids are so fragile with heat, even in the winter. I bet you get alot of the same "looks" I do when going out. I'm waiting for a little old lady to tell me off when I have Gracie walking around in 30 degree weather with her coat unzipped because I know she is hot. If I am right, I remember you talking about making an indoor playground for your girls. We are in the process of buying a new home and want to do the same. Ideally we would love to find a house with a sun room that we can put AC in. I have some ideas about how to get a swing set in there, and would love to share. If you have any thoughts maybe we can "brainstorm" together. You do have cooling vests for your girls, right? If not please let me know, there are alot of great resources to get them, for free. We were able to get MDA to pay for Gracies vest, hat, wristbands, neck and, a cooling seat for her carseat, and even a cool teddy bear. This is the time of year to go about these things so you can get it for summer. Best wishes. Find files on your PC instantly with the new MSN Toolbar Suite beta – FREE! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2005 Report Share Posted February 7, 2005 This is a website you really need to see for the cooling vests, ect. www.sarahmoodyfoundation.org They provide adaptive apparel for kids with heat and photosensitivity problems. If your girls need the photosensitivity protection too, they make UV protective clothing. The outfit looks alot like a spacesuit (it is Nasa technology) but it covers 100% of there skin with 100% UV protection. They also will just do the cooling apparel if that is what you need. You can go on a waiting list to get all the stuff totally free, but it takes a very long time to get it. If you are able to get a sponsor to pay for it, they will order it all the day they get the check. (It will still take awhile to get the vest because they are custom made, and the company is backlogged because they are doing the military's orders as well.) For Grace MDA sponsored all the money to have it ordered and even have followed up making sure she gets it all. We are still waiting on her custom vest but we do have another for the meantime. Both Moody Foundation and MDA were super helpfull in getting Grace what she needed. I had called them the day after she got out of the hospital, from a heat stroke, and within a week she had a temporary vest and everything else was speed up to get it done ASAP. She had already been on the "list" for about 6 months, but due to the urgency MDA had a check written within a few days. (We had not thought of asking MDA about it before the heat stroke.) If you need any more help on this please feel free to ask. You can find a link on the website to contact them to get on the list. Most likely you will be emailing and talking to Ginger Moody Ramsung, she is the daughter of the late Moody. Both of her daughters run the foundation now, but also both have full time jobs of there own so sometimes it may take a day or so to get a responce. They really do the best they can, and are great to talk too. Best wishes Find just what you're after with the new, more precise MSN Search - try it now! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2005 Report Share Posted February 7, 2005 This is a website you really need to see for the cooling vests, ect. www.sarahmoodyfoundation.org They provide adaptive apparel for kids with heat and photosensitivity problems. If your girls need the photosensitivity protection too, they make UV protective clothing. The outfit looks alot like a spacesuit (it is Nasa technology) but it covers 100% of there skin with 100% UV protection. They also will just do the cooling apparel if that is what you need. You can go on a waiting list to get all the stuff totally free, but it takes a very long time to get it. If you are able to get a sponsor to pay for it, they will order it all the day they get the check. (It will still take awhile to get the vest because they are custom made, and the company is backlogged because they are doing the military's orders as well.) For Grace MDA sponsored all the money to have it ordered and even have followed up making sure she gets it all. We are still waiting on her custom vest but we do have another for the meantime. Both Moody Foundation and MDA were super helpfull in getting Grace what she needed. I had called them the day after she got out of the hospital, from a heat stroke, and within a week she had a temporary vest and everything else was speed up to get it done ASAP. She had already been on the "list" for about 6 months, but due to the urgency MDA had a check written within a few days. (We had not thought of asking MDA about it before the heat stroke.) If you need any more help on this please feel free to ask. You can find a link on the website to contact them to get on the list. Most likely you will be emailing and talking to Ginger Moody Ramsung, she is the daughter of the late Moody. Both of her daughters run the foundation now, but also both have full time jobs of there own so sometimes it may take a day or so to get a responce. They really do the best they can, and are great to talk too. Best wishes Find just what you're after with the new, more precise MSN Search - try it now! Quote Link to comment Share on other sites More sharing options...
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