The time has come for us to start thinking about Sadie's next bed. I never thought it would be that stressful to pick out a child's bed, but I am so thankful to be able to have this stress. 4 yrs ago I was given a not so great prognosis for Sadie, so to be able to even think about getting a bigger bed for her for her 4th birthday is like a dream come true. However, with this dream come true and everything else "special needs" it comes with a pretty hefty price tag. Just to keep my child safe in a bed where she won't fall out, it will cost somewhere between $5000-$9000. Seriously ridiculous!!!! That is just a bed frame, doesn't include the mattress. For my other girls for that same price, for the same quality (if not better in some cases) of furniture we could get a bed frame, mattress, a dresser (or two), night stand, and desk and chair. It's so frustrating how expensive special needs stuff is!
Here are some examples of some of the beds that I have picked out for Sadie. I'm lucky to be able to have so many choices. I don't want it to look like a hospital bed. I know that might be kind of vain of me but this is my home, her bedroom. The less medical it looks and feels the better off all of us are. We already have a big oxygen concentrator, a suction machine, a pulse ox machine and a feeding pump in there (which I am grateful for, don't get me wrong), but that's enough hospital looking stuff for me. One of the things that I have to consider is how high up do I want the sides to go. Is she going to be strong enough in the future to pull herself up to sit/stand, accidentally fling herself over the side railing? I don't know. But this will be the only bed that we will ever purchase for her so I have to think about those things. I also have to think about if I want to the head of the bed to raise up, for aspiration or reflux reasons. She doesn't aspirate or reflux now because of her nissen fundoplication (those loosen up over the years), but a lot of kids with CdLS and PTCD/PCH do so who knows what is going to happen as she gets older. That also has to be thought about.
Decisions, decisions! At least I'm able to make them for her.
Here are some examples of some of the beds that I have picked out for Sadie. I'm lucky to be able to have so many choices. I don't want it to look like a hospital bed. I know that might be kind of vain of me but this is my home, her bedroom. The less medical it looks and feels the better off all of us are. We already have a big oxygen concentrator, a suction machine, a pulse ox machine and a feeding pump in there (which I am grateful for, don't get me wrong), but that's enough hospital looking stuff for me. One of the things that I have to consider is how high up do I want the sides to go. Is she going to be strong enough in the future to pull herself up to sit/stand, accidentally fling herself over the side railing? I don't know. But this will be the only bed that we will ever purchase for her so I have to think about those things. I also have to think about if I want to the head of the bed to raise up, for aspiration or reflux reasons. She doesn't aspirate or reflux now because of her nissen fundoplication (those loosen up over the years), but a lot of kids with CdLS and PTCD/PCH do so who knows what is going to happen as she gets older. That also has to be thought about.
Decisions, decisions! At least I'm able to make them for her.
*If anyone reading this has any experience with any of these beds please email me or leave a comment. It truly is overwhelming since I can only see these beds online. Thanks
Hi, my name is Dan Schmidt. I think we are related. My dad, Joe Schmidt, was at my house yesterday telling me about you and your family, especially your little girl with special needs and your need for a bed for her. So we took some measurements of the bed that my dad and I made for our daughter who had special needs. I think he took some pictures too but you're welcome to look at the bed pictures I have on my Facebook page. There is an album dedicated to the making of that bed. I hope that this style bed will help you out and make it a little easier for you and your daughter.
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