Special Needs

Discuss with me: Wheelchairs

Sorry for the spin off, but I have briefly discussed medical strollers with P's PT last year and on/off with other doctors.  It literally JUST dawned on me, HEY YOUR KID PROBABLY NEEDS A WHEEL CHAIR.  

So, now that i'm processing that, which is slightly hard.  Are their any wheelchairs that would fit in the back of a car? (VW Passat, so it's a bigger trunk) that we could only use when needed?  

I'm gonna start a google search as well.  
DD1(4):VSD & PFO (Closed!), Prenatal stroke, Mild CP, Delayed pyloric opening/reflux, Brachycephaly & Plagiocephaly, Sacral lipoma, Tethered spinal cord, Compound heterozygous MTHFR, Neurogenic bladder, Urinary retention & dyssynergia, incomplete emptying, enlarged Bladder with Poor Muscle Tone, EDS-Type 3. Mito-Disorder has been mentioned

DD2(2.5): Late term premie due to PTL, low fluid & IUGR, Reflux, delayed visual maturation, compound heteroygous MTHFR, PFAPA, Bilateral kidney reflux, Transient hypogammaglobulinemia, EDS-Type 3


Re: Discuss with me: Wheelchairs

  • What all do you want to know?  DS2 (4yr old) has had his wheelchair for just over a year (not quite 1.5yr).  We use his mainly for long distance type of things - think zoo, mall, trick or treating (I trick the wheelchair out - this year it was The Mystery Machine), going from his school classroom to anywhere else in the school, etc.

    We have a Jeep Patriot and a Subaru Crosstrek. His wheelchair fits in both cars. His chair has a single parent handle that you have to take off to get into the car which isn't a big deal for the most part.  Because we carry his walker AND wheelchair, we do have to take the wheels of the wheelchair off so both items can fit into the car. Again, no big deal. The wheels are super easy to get on and off.  His chair was set up in reverse style so the big wheels are in the front and the small wheels are in the back - this allows easier access to the wheels.  The small wheels are flashy and we get a lot of compliments on those. LOL 

    Insurance covered his wheelchair. Our process was the PT sent paperwork to his doctor to complete. Once returned the PT sent it to the Rehab Center where the Seating Clinic is at. I also had to get a referral and authorization before any appointments.  They Seating Clinic called us when they received the authorization. That first appointment was for fitting him to the chair, seeing his posture, his function level, seeing what kinds of accessories would be needed (he has a chest strap, leg straps, foot/ankle straps, and a pelvic harness), picking the color of the frame, etc.  They had a couple of models to try out but he only sat in one of them. They also had a DME company there which is where the actual order of the chair went through.  After that appointment which was May 2012, the chair was ordered (they are custom built so we had to wait a bit to get it).  The chair came in in August 2012 and the Seating Clinic called me for another appointment.  In that appointment, DS2 was fully fitted to his chair (back of chair was put at the right height - that kind of stuff), the DME person was there again and he went over how to take the wheels off/on, the parent handle off/on, cleaning, how to use the straps, etc. etc. etc.  We took it home that day.  We actually are going back to the Seating Clinic later this month to make sure he is still fitting ok in it. They will re-evaluate him, redo measurements, etc.  I had to get another authorization for this appointment.  This will be our first evaluation after receiving the chair originally and they want you to come back every year or so to make sure the chair parts are in good shape, that DS2 hasn't outgrown it, etc.

    Something they told me at the second appointment was that insurance will typically replace individual items as needed (example is the chair cushion) and that the wheelchair frame is typically replaced every 5-7yr.  The chair is ordered in a way that there is room for growth. 

    Let me know if you have any other questions. :-)
  • Oh, we have a Quickie Kidz wheelchair.
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  • With your DD's level of mobility, have you considered a walker with a seat? Just a thought.

    Lily has a ti-lite twist. The wheels come off and I guess you could say it folds up (the back portion folds down about 2 inches). It also has one single handle which can be adjusted or removed. Lily's chair fits in the trunk of my messy Toyota Yaris as long as I take the wheels off.

    P should have the opportunity to try out several models before you get one (either at the ordering apt, or at PT). At that time I'm sure they would understand if you wanted to test out the chair in your trunk. Though, you should know that sometimes the exact chair size might not be available to 'test drive.'. The chair that Lily got was 2 sizes too big when we tested it out at her ordering apt.
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  • The long distance thing is exactly what I need.  She is way too big for any of our strollers, and I had been wearing her in a preschool kinderpack but she is over 50lbs now and that is just too painful on my back.  I can barely pick her up in general anymore.  As we found out yesterday she is too big to fit in a lot of carts as well.  So a wheelchair would be ideal for the mall, zoo, aquarium, etc.  
    I don't want a walker because she doesn't have trouble with the walking aspect (except falling, but eh) and she would have to literally sit for 20-30 mins to be able to walk again, and then she's worn out within just a few minutes.  
    This whole process seems slightly overwhelming, especially when I'm like YES!  This is what I need to make our lives so much easier, and it's going to take months to obtain =(
    We don't have a local DME vendor that takes our primary so i'm trying to decide to just use her secondary or not.  Then if we NEEDED a new chair we could always use her primary insurance in a few years if we could find somewhere to take it.  
    We don't see PT anymore, but I called the office because she said if we ever needed anything like this to let her know, and they can't get us in until mid-February.  I called her physical medicine doctor we see at SB clnic, and the ortho at SB clinic has a private practice so I called their office too.  
    Sigh.

    Thank you for all of the information! 
    DD1(4):VSD & PFO (Closed!), Prenatal stroke, Mild CP, Delayed pyloric opening/reflux, Brachycephaly & Plagiocephaly, Sacral lipoma, Tethered spinal cord, Compound heterozygous MTHFR, Neurogenic bladder, Urinary retention & dyssynergia, incomplete emptying, enlarged Bladder with Poor Muscle Tone, EDS-Type 3. Mito-Disorder has been mentioned

    DD2(2.5): Late term premie due to PTL, low fluid & IUGR, Reflux, delayed visual maturation, compound heteroygous MTHFR, PFAPA, Bilateral kidney reflux, Transient hypogammaglobulinemia, EDS-Type 3


  • Our DME is not local per say. They are about an hour away.  Our Seating Clinic coordinates them coming to the appointments.
  • We have a local DME for her secondary in town, but I'm not showing anything in our state with our primary insurance.  I've only used DME for diapers & caths and some nebulizer supplies so this is a little new to me.  Of course, the 1st of the year our primary changed networks too, so that doesn't help.

    Did I mention H is totally against this?  Wants me to man up and carry her.  Ugh..
    DD1(4):VSD & PFO (Closed!), Prenatal stroke, Mild CP, Delayed pyloric opening/reflux, Brachycephaly & Plagiocephaly, Sacral lipoma, Tethered spinal cord, Compound heterozygous MTHFR, Neurogenic bladder, Urinary retention & dyssynergia, incomplete emptying, enlarged Bladder with Poor Muscle Tone, EDS-Type 3. Mito-Disorder has been mentioned

    DD2(2.5): Late term premie due to PTL, low fluid & IUGR, Reflux, delayed visual maturation, compound heteroygous MTHFR, PFAPA, Bilateral kidney reflux, Transient hypogammaglobulinemia, EDS-Type 3


    adkhiker
  • -auntie- said:

    Did I mention H is totally against this?  Wants me to man up and carry her.  Ugh..
    Noooo. You have to protect your back. She's getting too big for you to risk carrying her. And while I can appreciate that wheelchairs bring their own special emotional baggage, being carried by your mom at 4+ looks pretty special. A chair could give her better mobility and more independence. 
    Thank you!  And she's sooo big she looks more like a 6 year old.  I get a little sad everytime someones child is older than her and weighs 15 to 20 lbs less.  When she doesn't over eat =( 
    I think he still sees her as a baby (which i do too) and doesn't think it's "odd" to carry her, etc. He also is more about pushing her than I am.  I feel bad for her, when she's obviously in pain and discomfort and i'm forcing her to walk or try and shove her in a stroller or basket.  I really don't know why it took this long, we knew we would potentially need a medical stroller but for some reason wheel chair just wasn't in my mind.
    DD1(4):VSD & PFO (Closed!), Prenatal stroke, Mild CP, Delayed pyloric opening/reflux, Brachycephaly & Plagiocephaly, Sacral lipoma, Tethered spinal cord, Compound heterozygous MTHFR, Neurogenic bladder, Urinary retention & dyssynergia, incomplete emptying, enlarged Bladder with Poor Muscle Tone, EDS-Type 3. Mito-Disorder has been mentioned

    DD2(2.5): Late term premie due to PTL, low fluid & IUGR, Reflux, delayed visual maturation, compound heteroygous MTHFR, PFAPA, Bilateral kidney reflux, Transient hypogammaglobulinemia, EDS-Type 3


  • Let me tell you something.  Deciding that DS2 was going to need a wheelchair was a huge blow to me and how I saw DS2.  As in the wheelchair would now ultimately make him look disabled.  And to this day, I am still sensitive to it in regards to people staring, looking, etc. It is really unnerving for me to have someone outright stare.  I am slowly getting over it but not sure if that discomfort (of having someone stare at us) will ever 100% go away.  If you had to choose a wheelchair over a medical stroller I would go the wheelchair route. She'll probably have it long term and the wheelchair, in that aspect, will "fit" her better (people may wonder why a X yr old is still in a stroller).

    As for carrying DS2 who is 4? Well, if someone wants to judge me they can but they just better not say anything to me.  I don't think it looks weird at 4, although I do often wonder if people look at me and think "why is she not letting him walk?".  Sometimes it is simply not worth the time it takes (or the bitter cold weather or I may be running late) to get the wheelchair out, put it together, get him in it, get him wherever we are going, get him back to the car, get him out of it and in the car, take it apart, and then getting it back in the car.  Ex: If I have to take him to the grocery store with me, I park in handicap and I carry him in.  I cannot wheel him and steer a cart at the same time, nor can he independently "drive" himself in the chair (circles - sure LOL).  As for carrying vs wheeling, go with whatever the situation entails. Granted, at some point I will always have to use his wheelchair because he will simply get too big and too heavy for me.  **after re-reading this it sounds like I am going off on something Auntie noted about carrying a 4yr old looking special. I'm truly not.  Just throwing out personal experience.

    As for your husband, well, he simply is not thinking this through.  DS2 cannot walk. He is 32lb of dead flipping weight when you carry him.  He cannot, for the most part, help you carry him and he tends to go into extensor which makes it even harder to carry him.  And carrying him when we are both wearing winter coats and he is slip-sliding because of it? Pure joy - not.  Your body simply cannot continue to carry someone. They are only going to get heavier. How long does he expect you to carry her (or for her to be carried) everywhere/when needed?  My back KILLS most every day from carrying him, getting him in and out of the car, getting him in and out of the bathtub, hunching over him/bad posture doing HHA walking with him, and whatever other positions I get in with him.  I am actually starting to welcome using the wheelchair. When in use, it is faster for us to get done what we are doing, he is more comfortable, and so am I.  Sometimes it is simply a PITA though.  I won't lie about that. LOL
  • Let me tell you something.  Deciding that DS2 was going to need a wheelchair was a huge blow to me and how I saw DS2.  As in the wheelchair would now ultimately make him look disabled.  And to this day, I am still sensitive to it in regards to people staring, looking, etc. It is really unnerving for me to have someone outright stare.  I am slowly getting over it but not sure if that discomfort (of having someone stare at us) will ever 100% go away.  If you had to choose a wheelchair over a medical stroller I would go the wheelchair route. She'll probably have it long term and the wheelchair, in that aspect, will "fit" her better (people may wonder why a X yr old is still in a stroller).

    As for carrying DS2 who is 4? Well, if someone wants to judge me they can but they just better not say anything to me.  I don't think it looks weird at 4, although I do often wonder if people look at me and think "why is she not letting him walk?".  Sometimes it is simply not worth the time it takes (or the bitter cold weather or I may be running late) to get the wheelchair out, put it together, get him in it, get him wherever we are going, get him back to the car, get him out of it and in the car, take it apart, and then getting it back in the car.  Ex: If I have to take him to the grocery store with me, I park in handicap and I carry him in.  I cannot wheel him and steer a cart at the same time, nor can he independently "drive" himself in the chair (circles - sure LOL).  As for carrying vs wheeling, go with whatever the situation entails. Granted, at some point I will always have to use his wheelchair because he will simply get too big and too heavy for me.  **after re-reading this it sounds like I am going off on something Auntie noted about carrying a 4yr old looking special. I'm truly not.  Just throwing out personal experience.

    As for your husband, well, he simply is not thinking this through.  DS2 cannot walk. He is 32lb of dead flipping weight when you carry him.  He cannot, for the most part, help you carry him and he tends to go into extensor which makes it even harder to carry him.  And carrying him when we are both wearing winter coats and he is slip-sliding because of it? Pure joy - not.  Your body simply cannot continue to carry someone. They are only going to get heavier. How long does he expect you to carry her (or for her to be carried) everywhere/when needed?  My back KILLS most every day from carrying him, getting him in and out of the car, getting him in and out of the bathtub, hunching over him/bad posture doing HHA walking with him, and whatever other positions I get in with him.  I am actually starting to welcome using the wheelchair. When in use, it is faster for us to get done what we are doing, he is more comfortable, and so am I.  Sometimes it is simply a PITA though.  I won't lie about that. LOL
    I'm trying not to think about the general public gawking and comments, though I KNOW they will bother me  I'm trying to focus more on, "this will make things that are supposed to be fun for us...well FUN!"  I know the other stuff will come later, so I just want to do the stuff we need to do, to get the chair and go from there.  I was taking the time to get the kinderpack out and her in and situated so hopefully the whole chair thing won't take TOO much longer.  Sometimes if we were running late to the hospital though (haha..all the time?) I just carry her or make her walk.  I have a heart condition though, and with her weight (52lbs!) it's literally becoming impossible.  
    Places like walmart/target that have full size carts, aren't as much of an issue, unless I need to fill it up!
    I already have a handicap pass for my heart condition so that helps to lessen her walk (and the stares/comments I've had from that are enough to make me batty!)

    DD1(4):VSD & PFO (Closed!), Prenatal stroke, Mild CP, Delayed pyloric opening/reflux, Brachycephaly & Plagiocephaly, Sacral lipoma, Tethered spinal cord, Compound heterozygous MTHFR, Neurogenic bladder, Urinary retention & dyssynergia, incomplete emptying, enlarged Bladder with Poor Muscle Tone, EDS-Type 3. Mito-Disorder has been mentioned

    DD2(2.5): Late term premie due to PTL, low fluid & IUGR, Reflux, delayed visual maturation, compound heteroygous MTHFR, PFAPA, Bilateral kidney reflux, Transient hypogammaglobulinemia, EDS-Type 3


  • I hope you get everything sorted out for your DD's wheel chair quickly.  I have a child with Autism (no physical disability) so I don't have experience with wheelchairs but I do have a lot of experience with strollers to contain my son in busy locations that may not be safe or challenging for us as parents.  My son is 5 and 72 lbs regardless to say lifting him is a chore.  This is the first season we aren't using a stroller regularly.  We own a Mclarren umbrella stroller and a large double Schwinn jogging stroller that both my son and six year-old daughter with severe Asthma ride in on long walks that have held up to their weight.  I'm sure they are well over the manufactures weight limits but I will reassure you that it works just fine.
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