Guest guest Posted January 2, 2005 Report Share Posted January 2, 2005 I would LOVE more info and pictures if you can send them! You can send them to my private email if you want! I've been looking around the internet, and have gotten a few ideas, but haven't really seen anything that would fit Maddie's needs. I did see the talking Bob thing and played the demo for Maddie and she laughed and laughed. That's a great thing to consider. Thanks ! Holly Re: wishes granted zachs is life threatening, but it has a good prognosis. Yet we find zachs immune system weakinging leaving him more suseptible to pneumonias which in fact are more dangerous for him. I think from what i gather is u dont need a fatal disease , yet children living w/ a life threatening ailment. I bet logan would qualify. See we can afford trips to disney etc so we had to think long and hard what zach wanted. He can't relay himself a s well to express what he wants. I gave him some options and he chose one which in the long run is something that we wouldnt have been able to get for him that will make his life more fun and more independant. He is getting an adaptive playground. For the back yard so he doesnt have to struggle w/ the ones we have and i dont have to stand right behind him as much. He gets it this spring/summer if we have a place to put it we're building a house well been building permits for the last year to build the house. Atleast we have land to put the swing set on:) Kim wrote: Also you might inform your genetics doc that MAW is trying to change their image and they no longer just grant wishes for children with terminal illnesses...but children with chronic illnesses which surely he has. Darla, I was wondering about this,,do you know what kinds of illnesses MAW qualifies on ? Logan has been "officially" dx with failure to thrive,possible cerebral palsy,hypotonia,pectus excavatum,static ecephalopathy,and juvenile arthritis. He also carries the possible dx of mitochondrial disease,possible myopathy and/or a possible connective tissue disorder. I don't want to get a wish,if we don't qualify for it,,but on the other hand,I am so scared that he has something progressive,,and by the time he is dx,he will be wheelchair bound. As it is,he can't ride his new bike (with training wheels) that we got him for Christmas,for more than 5 minutes,because his legs get too tired,,but he used to be able to ride his tricycle with no problem. What do you think ? Also,Katelyn has bipolar and OCD,,and while it isn't really a life threatening illness,,it sure is life changing ! Kim mom to Meaghan 15 ~~Katelyn 12 Bipolar,and OCD ~~ Logan 7 Autism,congenital myopathy,possible mitochondrial disease,and JRA ~~ and Ethan 5 and 100 % BOY __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2005 Report Share Posted January 2, 2005 I would LOVE more info and pictures if you can send them! You can send them to my private email if you want! I've been looking around the internet, and have gotten a few ideas, but haven't really seen anything that would fit Maddie's needs. I did see the talking Bob thing and played the demo for Maddie and she laughed and laughed. That's a great thing to consider. Thanks ! Holly Re: wishes granted zachs is life threatening, but it has a good prognosis. Yet we find zachs immune system weakinging leaving him more suseptible to pneumonias which in fact are more dangerous for him. I think from what i gather is u dont need a fatal disease , yet children living w/ a life threatening ailment. I bet logan would qualify. See we can afford trips to disney etc so we had to think long and hard what zach wanted. He can't relay himself a s well to express what he wants. I gave him some options and he chose one which in the long run is something that we wouldnt have been able to get for him that will make his life more fun and more independant. He is getting an adaptive playground. For the back yard so he doesnt have to struggle w/ the ones we have and i dont have to stand right behind him as much. He gets it this spring/summer if we have a place to put it we're building a house well been building permits for the last year to build the house. Atleast we have land to put the swing set on:) Kim wrote: Also you might inform your genetics doc that MAW is trying to change their image and they no longer just grant wishes for children with terminal illnesses...but children with chronic illnesses which surely he has. Darla, I was wondering about this,,do you know what kinds of illnesses MAW qualifies on ? Logan has been "officially" dx with failure to thrive,possible cerebral palsy,hypotonia,pectus excavatum,static ecephalopathy,and juvenile arthritis. He also carries the possible dx of mitochondrial disease,possible myopathy and/or a possible connective tissue disorder. I don't want to get a wish,if we don't qualify for it,,but on the other hand,I am so scared that he has something progressive,,and by the time he is dx,he will be wheelchair bound. As it is,he can't ride his new bike (with training wheels) that we got him for Christmas,for more than 5 minutes,because his legs get too tired,,but he used to be able to ride his tricycle with no problem. What do you think ? Also,Katelyn has bipolar and OCD,,and while it isn't really a life threatening illness,,it sure is life changing ! Kim mom to Meaghan 15 ~~Katelyn 12 Bipolar,and OCD ~~ Logan 7 Autism,congenital myopathy,possible mitochondrial disease,and JRA ~~ and Ethan 5 and 100 % BOY __________________________________________________ Quote Link to comment Share on other sites More sharing options...
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