The trouble with adaptive anything is that it
Just. Doesn't. Fit. My. Kid
The bath chair - Either way you look at it the darn thing is too high or too short for my back to bathtub ratio. My back hurts more when I use it and Caleigh doesn't get as clean. We haven't used it for months. It's currently being used as a diaper changing station....sometimes. A bathtub cushy mat is doing the job with Caleigh laying on her back. Cost for the bath chair was around $500. The bathmat was $10.
The brand new potty chair - We've had it for over a week now. Caleigh has tinkled on it once. Just once. The splash guard in the front of the seat (made for boys) cuts into her chubby thighs. The marks left on her tushy after a 5 minute sit is just terrible. Yes, she can sit "all by herself" in the chair with the proper straps, but that doesn't help the fact that she just doesn't feel safe and comfortable enough to perform. So we've gone back to the Baby Bjorn potty chair. Why ruin what has been going so good? Rifton Potty Chair was around $600. Baby Bjorn was about $20.
I'm trying to come up with an adaptation for the new potty chair, but honestly my brain is toasted on the subject. Why after paying hundreds of dollars and waiting months for approval, we as parents must then use every last ounce of energy to adapt what is already supposed to be adapted?
The Kidwalk Gait Trainer - It's been tons of fun watching Caleigh get better and better at taking steps with the Kidwalk, but the original headrest that came with the set up was far too small. Caleigh spent most of her time looking up, head hooked around the side of the headrest. Yesterday our equipment people came out with several headrests to try out. We went with a tri-fold design and extended the side pieces outwards. The headrest is actually installed upside down. So far so good. Caleigh walked around our cul-de-sac for an hour this afternoon and she actually held her head more in the middle and forward than she ever has. We found a winner...so far.
The Leckey wheelchair - The chair itself works great as a seating system on the high-low base, but Caleigh's head has never stayed within the areas of the headrest. With the tray on the chair she can sit completely upright and use it to hold herself up. Even then she constantly wraps her head to the side and then up under the head rest. We pick her head back up and then she moves it right back stuck under the headrest. We recline her chair, she does the previous just the same only she works harder to achieve the feat. The wheelchair, outside our home, has been inactive for months now. When we leave the house we use an umbrella stroller that is probably the worst positioning chair around, BUT Caleigh's head stays in place and the chair isn't a battle. A side-effect of the umbrella stroller is the constant sleepy baby comments, and at 33 pounds, Caleigh is close to the weight limit.
I actually had a women, in Target, tell her rambunctious toddler "look at that sweet baby girl sitting SOooo still in her stroller" "She's being such a good girl" "Can you be a good boy for mommy?"
Really lady? An educational moment? Seriously sweetie?
If she only knew.........
A new headrest for the wheelchair is on it's way. Probably a month or two down the road. It's just like the new one on the Kidwalk. More of a tri-fold design. I would like to have high hopes, but at this point we'll just wait and see.
The Orthotics - I just recently wrote about our AFO woes. We took Caleigh for a second opinion with a different company last week. Same song and dance different location. The company that we went to uses DAFOs. Our insurance already paid for the current pair. So unless we fork over $1400 for a new pair; we'll be waiting another 6 months until insurance will approve another pair. The people we met with really didn't offer any new suggestions and basically said that the braces that we have should be working. They told us that her feet are too small and that once her feet get bigger we won't have the problem of her pulling out. I don't get it. Maybe it's physics, who knows? I asked about SMOs, two piece construction, hinged and basically anything I could find on the internet. They didn't feel like anything different would work right now. Caleigh needs something that works. Her ankles are getting tighter everyday. Putting on a brace for 2 minutes doesn't give a good enough stretch. I just don't know what to do. To top it off, I called our current company about making adjustments and we have to wait 4-6 weeks for that. I'm just so frustrated with the whole thing.
Today we got word that Caleigh's powerchair will be delivered to our DME place in 2 weeks. At that point they will put it together and then deliver it. We could have independent mobility by Thanksgiving. I'm sure the chair will come with obstacles, but I'm trying to be optimistic about it.
Basically, we have learned the value of patience, mixed frustration and most of all, one size does NOT fit all!
Just. Doesn't. Fit. My. Kid
The bath chair - Either way you look at it the darn thing is too high or too short for my back to bathtub ratio. My back hurts more when I use it and Caleigh doesn't get as clean. We haven't used it for months. It's currently being used as a diaper changing station....sometimes. A bathtub cushy mat is doing the job with Caleigh laying on her back. Cost for the bath chair was around $500. The bathmat was $10.
The brand new potty chair - We've had it for over a week now. Caleigh has tinkled on it once. Just once. The splash guard in the front of the seat (made for boys) cuts into her chubby thighs. The marks left on her tushy after a 5 minute sit is just terrible. Yes, she can sit "all by herself" in the chair with the proper straps, but that doesn't help the fact that she just doesn't feel safe and comfortable enough to perform. So we've gone back to the Baby Bjorn potty chair. Why ruin what has been going so good? Rifton Potty Chair was around $600. Baby Bjorn was about $20.
I'm trying to come up with an adaptation for the new potty chair, but honestly my brain is toasted on the subject. Why after paying hundreds of dollars and waiting months for approval, we as parents must then use every last ounce of energy to adapt what is already supposed to be adapted?
The Kidwalk Gait Trainer - It's been tons of fun watching Caleigh get better and better at taking steps with the Kidwalk, but the original headrest that came with the set up was far too small. Caleigh spent most of her time looking up, head hooked around the side of the headrest. Yesterday our equipment people came out with several headrests to try out. We went with a tri-fold design and extended the side pieces outwards. The headrest is actually installed upside down. So far so good. Caleigh walked around our cul-de-sac for an hour this afternoon and she actually held her head more in the middle and forward than she ever has. We found a winner...so far.
The Leckey wheelchair - The chair itself works great as a seating system on the high-low base, but Caleigh's head has never stayed within the areas of the headrest. With the tray on the chair she can sit completely upright and use it to hold herself up. Even then she constantly wraps her head to the side and then up under the head rest. We pick her head back up and then she moves it right back stuck under the headrest. We recline her chair, she does the previous just the same only she works harder to achieve the feat. The wheelchair, outside our home, has been inactive for months now. When we leave the house we use an umbrella stroller that is probably the worst positioning chair around, BUT Caleigh's head stays in place and the chair isn't a battle. A side-effect of the umbrella stroller is the constant sleepy baby comments, and at 33 pounds, Caleigh is close to the weight limit.
I actually had a women, in Target, tell her rambunctious toddler "look at that sweet baby girl sitting SOooo still in her stroller" "She's being such a good girl" "Can you be a good boy for mommy?"
Really lady? An educational moment? Seriously sweetie?
If she only knew.........
A new headrest for the wheelchair is on it's way. Probably a month or two down the road. It's just like the new one on the Kidwalk. More of a tri-fold design. I would like to have high hopes, but at this point we'll just wait and see.
The Orthotics - I just recently wrote about our AFO woes. We took Caleigh for a second opinion with a different company last week. Same song and dance different location. The company that we went to uses DAFOs. Our insurance already paid for the current pair. So unless we fork over $1400 for a new pair; we'll be waiting another 6 months until insurance will approve another pair. The people we met with really didn't offer any new suggestions and basically said that the braces that we have should be working. They told us that her feet are too small and that once her feet get bigger we won't have the problem of her pulling out. I don't get it. Maybe it's physics, who knows? I asked about SMOs, two piece construction, hinged and basically anything I could find on the internet. They didn't feel like anything different would work right now. Caleigh needs something that works. Her ankles are getting tighter everyday. Putting on a brace for 2 minutes doesn't give a good enough stretch. I just don't know what to do. To top it off, I called our current company about making adjustments and we have to wait 4-6 weeks for that. I'm just so frustrated with the whole thing.
Today we got word that Caleigh's powerchair will be delivered to our DME place in 2 weeks. At that point they will put it together and then deliver it. We could have independent mobility by Thanksgiving. I'm sure the chair will come with obstacles, but I'm trying to be optimistic about it.
Basically, we have learned the value of patience, mixed frustration and most of all, one size does NOT fit all!
17 comments:
Club foot mom again, posted too soon! I just went back and looked at your previous post about her orthotics. My sons shoes/brace was leather but similar just not as tall. Anyway, have you tried socks with those grippy skid resistent bottoms? Also, what finally helped was taking him to a nice oder man who had worked with orthotics for years and he just added more velcro straps that wrapped around the brace a few times. He also devised a big sock, like a mens large to go over the whole boot and also secured it at the top with velcro. It just provided a little more resistence for my son. We also doubled up his socks when he had them on. It wasn't as close to his skin as it was supposed to be but at least he had them on! Again, good luck!
Hi, I found your blog through another blog and love following Caleigh's journey! I am a pediatric OT and love your analysis of all the adaptive equipment!
Shelly
Boy, do I relate to this post! WE got Emily a Leckey chair and it sat in our living room unused for the longest time because the headrest just did not work. She also pulls her head forward and to the side and gets stuck under the lateral piece. We finally ended up getting a separate headrest (just like the one on her wheelchair) - it works for the head support, but isn't the greatest fit on the chair. Guess you can't win them all!
And please don't get me started on Emily's AFO's. We have spent 10 months fighting that battle and I am beyond frustrated that they still don't work. I worry about her heels getting tighter and tighter. Our orthotist didn't offer much help and he is the 3rd one to look at them. UGH!
stay out of that darn mansfield target :)
Ok, I can help with the potty chair. I use the same one every day with my preschoolers with multiple needs. You can take off the insert with the cup so that won't hurt Caleigh's thighs anymore and you need to get the rest of the potty chair, which includes the foot rests. These make all the difference in a child feeling secure in that seat. When their feet and legs are stable they have more energy to stabilize their trunk. I also find they like tray, they can use it to rest their arms/hands on. Also, if you have the legs which have wheels, you can just wheel the potty off of the toilet in case someone else wants to use it.
Some of my kids take longer to get used to it than others, but I know that my students who have CP and Ataxia really seem to like it.
Lisa
I can sure relate, we end up adapting much of Junior's equipment.
Have you ever been seen at Shriners? They have really helped us work out the best afos for Junior, no insurance things to worry about and they kept changing and working at it until they figured it out.
This post makes me more than sad. I am frustrated and angry with you. What are Caleigh's therapists doing to help you order and use the equipment?
The main, primary, most powerful and effective means of affecting ankle growth is (I'd use caps but don't want to shout) weight bearing - which is not what the kidwalk is for nor provides. The orthotics can guide her ankles into a better position in.weight.bearing if they are made to and fit well.
No sock nor leather nor shoe will guide a flaccid or spastic or dystonic leg into a better position. The foot will go where it will go and the shoe will conform to the foot. Barbara
Lisa, Thanks so much for the potty advice. When we take the cup out Caleigh's tiny tush falls into the potty spot. So that won't work with us. Also the Chair that we have is a different model. I "thought" we were getting the full model with stand and wheels but that didn't happen. I'm about ready to have them come pick it up.....ugh.
Barbara, I appreciate your frustrations. Caleigh's therapists are very helpful and we've even had second and third opinions on certain things. We have a stander for weight bearing and we also stand Caleigh barefoot throughout the day. She does great holding her weight. Yes, the kidwalk does not do that, but she loves being independent while taking steps. We can't put her in her current AFOs because of a fit problem causing blisters. We will have to wait the 4-6 weeks to adjust the plastic. Without the AFOs Caleigh's ankles collapse after standing for a time. Also, without AFOs Caleigh's feet point out not even close to a 90 degree angle.
Thanks for coming back and mentioning your helpful therapists, Holly. Your post left me thinking that you are completely at the mercy of the DME vendors without their consult. Certainly I have not been able to resolve every equipment issue of my patients over the years either.
I make my comments as much for your many readers as I do for you. I know you were not expecting the kidwalk to substitute for standing, but one might not be able to tell that by just reading this post. Indeed good orthotics are necessary for taking good steps, too. The 4-6 week time lag for adjustments is highly questionable IMHO.
I am not prone to recommend the kind of bath (bed really the way you have it set-up) unless I expect a child to never sit or stand. (Like I implied in this post: http://www.therextras.com/therextras/2010/01/you-are-your-own-best-resource-.html )
Albeit, with the set-up you show, at least you do not have to lower her into the tub and lift her out. If there is an an accompanying shower wand this set-up works well for bathing without the participation (potential learning) on the part of the child. Doesn't sound like that was what you wanted when the equipment was chosen.
I know you won't give-up and your blog certainly helps identify the flaws in the services system that are all to familiar to me and other parents. Barbara
As a special ed teacher, I work with kids with multiple disabilities, and use a lot of adaptive equipment with them similar to pieces you've pictured or discussed. Unfortunately, I don't have any new suggestions about the bath chair and the potty chair, but I am curious about her AFOs. Does she wear them with sneakers or do they have the bottom made for walking? I have some kids who wear high top sneakers with their AFOs, and it helps to hold them on better. Also, why is it going to take 4-6 weeks to get them adjusted? A local brace company comes to the school I work at once a week and will do a lot of adjustments there, or they take the braces with them and drop them off at school the next day. Is your orthotist so busy he doesn't have appointments for 4-6 weeks, or is it an insurance thing? Even if another local company doesn't have suggestions for NEW AFOs, might you be able to switch to one that could at least do modifications sooner than a month, at best, later?
Holly, (love your name by the way, I have a daughter named Holly :)
Did you get the smallest model? If you have it picked up maybe your OT can help you find another one that will fit it better. He/she should also be able to figure out some "adaptations" to help you use the toilet. Sometimes I am amazed at what they can do with swimming noodles :)
Lisa
We get the sleepy baby comments all the time too! I hate it as I know that our M Girl hears and understands and heck no she isn't sleepy, just can't hold her head up so great and she isn't a baby! Our best purchase has been the Nissin special needs stroller that I found on ebay - retails for 2,000 and I got it for 300 and it was brand new! We have had to get super creative on getting equipment due to our girl only having a medical card (for the moment) and it won't pay for many things. Anyways...
Dannette
I have a son with some similar needs to Caleigh and I just love reading your blog. We struggle with equipment too. We are going to be ordering a potty this week. I've been looking at the Flamingo made by Snug Seat. It seems to have good trunk, head and leg support. Also has tilt and recline so can be used as a bath chair. It's just all so expensive. Wish there was a way for all of us to try before we buy.
-Laura
http://www.carepages.com/carepages/codygarrett
Laura's mention of "try before we buy" reminded me that a local nfp here organizes an annual "Try it before you buy it" equipment event. Any chance you might find an organization to sponsor one in your area. Here is the site of the nfp: http://www.kinetickidstx.org/index.php?id=1
Also, a business in your area, Therapy 2000 has a foundation/charity:
http://www.t2000.com/chari-t2000/
I'm not suggesting you do anything in particular - just sharing information for your consideration. Barbara
Barbara~ Thanks for the suggestions. One of our therapists is with t2000. Our bath chair (in the photo) is set up as a changing station next to the potty chair. We haven't used it for a bath in months.
Anon Special Ed Teacher~ I called the orthotist directly today. Talking to her and not her people. I have an appointment next week for adjustments, but 3 weeks is still too long to wait. I plan on voicing my concerns and depending on what happens we may be switching.
Lisa~ We LOVE swimming noodles over here. We use them in the car seat, stroller and the pool :-) I plan on calling our DME company tomorrow to talk about our options.
Thanks to everyone for your comments and suggestions!
I have a similar bath seat for my dystonic toddler. I took the head positionner (with the white parts) and use is as a torso positionner under his arms on the sides of his belly. It straps him more closely to the chair and he's more stable. Or use one at the waist, and the one from your commode at the head - might help. I think they are interchangeable between these two models. My bath seat also has leg straps which help my son sit correctly. I always use them since he pushes against them to stabilize himself. Some food for thought - hopefully it will help!
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