Tuesday, February 20, 2007

Disability Logistics

Like everyone else who is thrown into the world of disabilities, we're kind of learning as we go. As Eden is getting bigger, wait, let me rephrase that... As Eden is growing up, we're running into issues regarding how to best accommodate her.

One of our concerns right now is going to restaurants as a family. This is something we love to do, and absolutely will not stop doing. When Eden was a baby it was easy, because we could bring both girls in the infant carriers and they would sleep or play while John and I ate. They outgrew the infant carriers for use as a car seat when they hit 26 inches, which was sometime after their first birthday. We moved them into the bigger car seats, but have still carried the infant carrier in the back of the car to use at restaurants. We sit Eden in her infant carrier on a chair, right up to the table with us.

Up until now, we have carried her in to the restaurant in the carrier because it is easier. One of the problems is that she is getting really heavy in that thing. The other problem, and more of a concern to us, is that she just seems to much like a baby in it. The hostess only brings one kids menu with crayons for Holland, and they often ask if we want a sling for the infant carrier. We've dealt with all of this for long enough that we can handle it okay, but I would really like a better option for Eden to feel more like a big girl.

One thing we have started doing, is to carry Eden and the carrier separately, so she isn't actually in the carrier when we go into the restaurant. This helps the "big girl" situation, but is really hard. If this is the best option, we'll probably just start carrying her booster chair with us. Maybe we can attach some sort of harness to it to make it easier to carry. Like a backpack or something. Eden can't really sit up well enough to use the restaurant high chair. What do other parents of children with disabilities do at the restaurant?

That brings me to my next point. At home Eden has always used the First Years reclining booster chair for feeding. Now that the girls are older, we have started trying to let them sit at the table with us for dinner. We bought a nice chair at Ikea for Holland, but it doesn't work very well for Eden. Her booster isn't quite high enough to reach the table comfortably. One person from the internet emailed us and recommended the Tripp chair. There are two places not too far away that sell it, so we are going to try it out. Does anyone else have any suggestions or recommendations for a good high chair? The chair has to adequate support, a foot rest to help her stabilize, and be able to push all the way up to and under the table. If we're going to have to spend big bucks on it, we'd also like it to grow with her (assuming of course, that she is going to grow).

Another problem we have revolves around the bath. Eden absolutely loves water, and loves her bath. She has been taking baths in the big tub for a long time. We just lay her in the bottom of the tub and fill it up to her ears. She colors all over the sides of the tub with her bath crayons, and manages to swivel and wriggle from one end of the tub to the other. She really likes being IN the water, and having freedom to move around.

She's just now getting to where I think she would really like to be able to sit up in the tub. We've tried a few different options, but nothing has really worked so far. She doesn't like the reclining bath seats because she wants to sit all the way up. She can't use a bath ring or anything that requires a broader base, because she tends to snap her knees together anytime she is sitting up. Eden has just gotten to where she is sitting fairly well in the Bumbo, so we have been letting her sit in that in the tub (although the manufacturers warn against this), but we have to keep our hands on her at all times so she doesn't topple it over. What we really need is something like the Bumbo, that is weighted on the bottom and sticks to the tub rather than floating. Does anyone have any good ideas?

Last issue...transportation. Having two makes this a bigger issue than it would be with just one. Actually, having two makes everything a bigger issue, doesn't it? Holland is not getting around well enough yet for her to walk when we go shopping. I imagine this won't happen until 3 or 4. Once Holland is walking well, we will definitely get Eden a wheelchair. But for now, I need to be able to transport them both. The double stroller we use most often is the Kolcraft twin umbrella stroller. I actually really like this one for the price, although it can be a pain because it is so wide, depending on where we go.** Kohl's, for example, is a nightmare, because they pile too much junk in the aisles. Anyway, back to my point. Occasionally the double wide is a pain, and if John and I are together we would like to each take a girl separately. We got the traditional umbrella strollers as a shower gift way back when, but Eden is too slouchy to sit in it. We tried another kind of cheapie umbrella stroller, with more support in the back, but it was impossible to steer. We just bought a third umbrella stroller, that seems nice in theory, but I haven't had a chance to try it out. I probably should have invested in a nicer single stroller from the beginning, but I am always thinking that it is just a short term solution since we use the double wide most often, and eventually Eden will get a wheelchair anyway. I wonder, at what age do kids usually get their first wheelchair? When she does get it, will she be able to sit in it at the restaurant? Jeez, it's just so much to think about... Can anybody help me out?

**Of course, every time I have a hard time with the double stroller, I start worrying about accessibility with a wheelchair. It is shocking and appalling to notice how much of this world is NOWHERE near accessible for people with disabilities. I know it is not something that your average person ever thinks about, so make it a point the next time you are out. Be aware. Think about how you would go about your business if you were in a wheelchair. What if Eden, as an adult in a wheelchair, wanted to stop in for coffee at the Starbucks in Plymouth? She wouldn't be able to. There's a step up to a very narrow doorway, then a door that is impossible to hold open. It's very frustrating and I really feel for the people out there trying to live their lives having to deal with this on a daily basis.

34 comments:

Shannon said...

Hi Billie,

First of all I have to say that I know where you are coming from. You are a bit ahead of me but I worry about all of this stuff already and we aren't even close.

Anyhow I know two chairs that I have seen. The first one is the special tomato height right chair. I cannot remember the name of the other one but I will search for it. It actually is good b/c it just goes on any chair and would be good as well for taking to the restaurant. What about using the bumboo at the restaurants?

Bathing, I have no idea of anything I could recommend.

Wheelchair...my cousin is in a chair and was just under five when she got hers. I have heard of younger though as well.

Hope I was of some help.

Shannon
(You can link me to your blog if you like)

Anonymous said...

It does sound like you need a better twin stroller, inline style and more sturdy for heavier children.

I don't know where you live, but do you belong to a chapter of NOMOTC, a parents of twins club? These groups often have consignment sales in spring and fall of second-hand baby gear, clothing and toys. Our multiples group typically has from 5 to 15 double strollers at sales, selling for half the retail price. Members get to shop early, before the general public.
If you can find a spring sale like this in March or April, you might have quite a few sturdy twin strollers to choose from, and you could shop with the girls (or just Holland) to check the fit.

Best of luck with all these questions, I know you'll find good solutions one way or another.
- tripleblessings

Kacy said...

http://www.target.com/gp/detail.html/ref=br_1_2/601-0498893-0873717?ie=UTF8&frombrowse=1&asin=B000BMJ6VG

The bookmark is for a stroller I've seen and debated at Target. The front seat is a recliner regular stroller seat, the back is a stander I guess is the best way to describe it. I don't know to what degree Holland is able to stand on the bar; but I've seen people actually using it and it looks wonderful. Just thought I would pass on the option to you!!

Both girls are beautiful as ever!!

Anonymous said...

Hi Billie,

Here is a site you might want to check out. It has solutions that might work for seating, bathing, and transporting Eden.

You have beautiful girls, and you are so aware of what they need.

http://www.adaptivemall.com/mainbug.html

Anonymous said...

I agree that many stores are NOT well thought-out to accomodate the handicapped! Many of my favorite small shops downtown are too cramped to even manuever my stroller in, so I imagine that a person in a wheelchair, which is even wider than a stroller, wouldn't be able to either. It's really sad.

I'd suggest an inline double stroller. They look so much easier to manuever than a double-wide! Or just invest in a couple of relatively inexpensive "regular" strollers instead of the umbrella ones. I got an Evenflo at Big Lots for only $30 and it is the NICEST stroller I've ever had, and I've had a LOT! My son is 2.5 and we still use the stroller and probably will for a while, so I wouldn't worry about the girls growing out of a stroller too quickly. :)

-Jill

Kristin said...

Billie,
I am not sure if you have already seen this magazine or not, but this company seems to have some options for Eden which may be helpful. www.abilitations.com
Kristin

Anonymous said...

Billie,

I hope you are able to find the types of chairs and everything that you need. You have so many good ideas, I wonder if you will have to invent/create your own product. Unfortunately, it would take a long time and thus would probably benefit other familes down the road more than you guys. Also, your point about getting around to public places in a wheelchair does make me think. I admit that I just assume that all these places like Starbucks and such are accessible with ramps and whatever else; I thought that was the law, but I guess it doesn't really happen? This makes me mad thinking about it.....

Amy

Kristin said...

Hiya Billie,

I'm with Shannon about taking the bumbo to the restaurant - I take ours everywhere with us.

As for bathing, there is a different brand of bumbo type seat out there (Kaitlyn McCarthy has one.. http://lizmccarthy.blogspot.com) that is hard plastic, and I would suspect you could weight it yourself as I believe it is hollow.

Anonymous said...

I read your post and wanted to try and answer one of your many questions. Most students get their first wheelchairs around age 3. For the most part this is because they are starting school and have grown enough to need it for other practical reasons. If you get one took soon you can have problems with your child out growing the chair to soon and because most insurance companies only pay for a new chair every few years. When you start looking for a chair consider a chair with a changeable base that allows you to go from manual to electric. If you get one with a base that changes when you out as a family you can use the lighter manual base. The electric base can be sent to school to be used it therapy or the classroom. The manual base is also good if your having a hard time finding an adaptive stroller that meet all of your structural needs.

Tam said...

Have you looked at the Combi line of strollers? They are a bit expensive for a small single stroller, but they were the best ones we found..... babies-r-us sells them.

i think we paid 99$ for the small travel stroller!

Mir said...

HI Billie,

I'm with everyone else -- can you use the bumbo at the restaurant?

Also, as far as strollers go, with your girls being such tiny things, I'd plan on them being in a stroller for many more years. Our daughter is very tall, with no delays, and she used a stroller until she was almost five, esp at malls, the zoo, etc. I think four is an average age to stop using a stroller, so invest in a great double stroller and realize you can sell it down the road, when your girls have outgrown it!

We have the Sit 'n Stand and I can honestly say this wouldn't be a good option for either girl. It works great with our older preschooler, but it's not comfy for a younger child to spend an extended amount of time sitting back there. Also the front seat provides very little support and my son (a year) doesn't seem comfortable in it.

There is an Evenflo double stroller (take me too) that will allow your rear seated child easy access to climbing in and out of the stroller. It's a MUCH better buy than the sit n' stand, and had our daughter been a little shorter, we would have bought it!

http://www.target.com/gp/detail.html/ref=br_1_7/601-9382925-0340912?ie=UTF8&frombrowse=1&asin=B000F6US7E

Good luck!!

Kendra Lynn said...

I often wonder how people with disabilities handle getting in and out of certain places. Its insane to expect someone in a wheelchair or someone WITH someone in a wheelchair to somehow hold open a door and help steer a chair in.
I have struggled with my double stroller at malls and stores MANY times. And guess what? Hardly anybody ever stopped to help me.
I usually ended up holding a door open with my foot, and leaning way over, steered the stroller through the doorway.
I truly hope that someone somewhere sometime makes life easier for people with disabilities, AND people with TWO babies!
Good luck finding the right stroller.
Wish I had some advice.

Love to you all.

Kendra

Gwyn McWhorter said...

The pastor of my church has a child with severe CP. She is, I believe, in her late teens currently, and at about 11 only weighed somwhere in the neighborhood of 50 pounds. Christa is a delight to everyone, although they have had more than their share of problems with people not wanting to be around them when they go to a restaurant. That having been said, Christa gets a new wheel chair about every two to three years. It is completely adjustable (reclining-sitting, up and down) and easily fits under whatever table they place her at.

There are resources for getting these chairs as children always outgrow them. They always donate Christa's old chairs so that someone else of somewhat same stature can get the benefit of her chair as she has never worn one out. You may want to search for some service like this before actually purchasing one on your own, as I know that they are quite expensive.

Sorry for rambling, but I hope that the information is of some benefit.

Jacqui said...

Billie,

I've only had the chance to quickly read your posts as the baby is moaning. I will try and get back later to say more.

We have a bumbo that goes with us everywhere. We plop in on the chairs at restaurants so Moo can sit at the table. We take it to the beach, park etc. And we have one that lives permanently in the shower (yeah, I know why your not supposed to but it's the best option). After a year of being in the shower, I am ready to replace it but for $80 australian, it's cheaper than a bath chair.

And about the shops - I so know what you are saying. It is my pet hate. We are also having stroller problems at the moment due to the new baby.

Take care,
Jacqui

Amber said...

Hi Billie!

As a parent of a special needs child I would highly recommend a Kid Kart Xpress by Sunrise Medical. It has a seperate booster base so you can use it as a high chair. We took it to resturants with and with out the booster base. It pushes right up to the table. http://www.sunrisemedical.com/products/product_detail.jsp?FOLDER%3C%3Efolder_id=1408474395470311&PRODUCT%3C%3Eprd_id=845524441787895&ASSORTMENT%3C%3East_id=1408474395285139&bmUID=1172124533278

For bathing you might want to check out this website. http://www.columbiamedical.com/default.cfm?display=bathing

Amber

Orange said...

I have nothing to offer. However, when Eden's several years older and you're trying to find a high-backed booster seat that will fit an older kid, be prepared to have a long search on your hands. My cousin's kid with CP needed a booster that would hold him upright at an age when most kids have graduated out of boosters (I think he used it until 9 or 10), and it took her awhile to find one—and then it was expensive and insurance wouldn't pay for it.

Anonymous said...

I have trip-trap highchairs for both my daughters and I love them, but I wouldn't recommend it for Eden if she needs some back support, because the trip is short and hasn't a high back to support the child upper back and head.

Good point is that it has a front restraining (kind of a wood belt), but it's mainly used only with babies, because it's rigid and it doesn't leave much space, so it wouldn't be comfortable for bigger kids.

MArta

terri w/2 said...

Hi; I'm a first-time visitor, but wow - do we share a lot of similarities - I have twins as well, one who is severely disabled and the other very functional - they were 25 weekers back in 1986!

Anyway - do I have a stroller for you! This company makes the best twin stroller ever - it's solid, supportive, can be converted from one to two - will work with both of your girls now and your one daughter later. This stroller worked for us for at least 6 years. The reason I loved it so much, is that it goes over EVERYthing - grass, sand, gravel, AND the seats are like car seats, so they are supportive for your daughter who needs this.

Is it expensive? Yeah, I'm afraid it is, but it is very well built.

Go here for more info:
http://bergdesign.net/sport.htm

Amanda said...

Billie,
I was a 7/31 baby too. I wish I had wise words for you, since I don't I'd just like to say that I admire your strength and am so happy to know that you are on your journey with a caring person. I'll do what I can to send karma points your way so maybe the two of you can go on a date. I'll also pledge to be kind and helpful for the rest of my days when I see a person struggling.
Take care and enjoy those beautiful girls.

Mel said...

I'm kind of in the same stage that you are. We need better solutions because Crew is getting bigger and harder to handle. I don't know how well Eden can hold herself up but we use the Bath Seat by Gerry. It has suction cups on the bottom and a bar between the legs. I bought mine 9 years ago with baby #1. I don't know where to buy them now, but I did see some on e-bay.

If you are looking for a good single umbrella, we love the red Chicco Caddy stroller at Target:
http://www.target.com/gp/detail.html/ref=br_1_15/601-6077788-5889764?ie=UTF8&frombrowse=1&asin=B00009KN1D

I never thought I would be ready for a wheelchair but it is getting so hard to take Crew places like restaurants. I always think about the Bumbo chair once I get there and wonder if it would work okay. Maybe next time I will try it!

Permobil makes my dream power chair. It lowers to the floor so the child can crawl over and climb in and it can raise up to table height or wherever your child needs to be. I don't even want to know how much it costs! Check it out: http://www.permobil.com/templates/ProductPage.aspx?id=1277

Good luck and let us all know if you find any great solutions.

KC said...

When we have had disabled foster children who can't sit up in a regular booster or high chair, we've had very good luck using the Bumbo. There have been months in my life where that thing just lived in my car, and went with me everywhere.

For decent double strollers, the Jane Powertwin is my favorite by far, but it's spendy and somewhat hard to find in the US. It has bicycle-style tires (smallish ones) and steers like a dream, even with heavier kids. I think the back seat reclines (the front seat might too...I can't remember, as I borrowed one and returned it to my friend already). I own a Peg Aria twin, which is a side-by-side, and it's been ok at getting in and out of stores -- better than most, but not perfect. And as the kids get bigger, it's more challenging because it's so lightweight.

For single strollers, I'd look for a Maclaren. They have a couple of models that recline, and they are very sturdy for bigger kids. They fold up tiny, too. You can usually find a very nice one on sale for around $200.

Can't help you with the bath seat, though. I'd use the Bumbo myself.

Anonymous said...

Hi,

no expert in items for special needs. But I do wanted to confirm the idea above about the stokke tripp trapp chair. We have two for our children (3 and 8). It's a lovely chair, adjustable for growing kids, but I don't think it's a good solution for your daughter. The back is quite low, the support on the side is non existing.

You're doing a great job looking for options to make/keep your kids mobile. I think it's great you take them with you, even with the limited possibilities and flaws in the public domain. Well done mommy!

Liza said...

Hi, Billie! I got here via Tertia and having just read this one entry of yours, I don't know enough about Eden's specific issues to not potentially make an arse of myself here, so if I'm way off please forgive me. Two of my kids have had problems with pretty bad hypotonia, and were not sitting up well in restaurant high chairs by the time they were too big for the infant carrier, and yes, we used to take that with us to restaurants. I never had two of the same age, so I don't think it bothered them not to seem like "big kids," but it started to bother me after a while since they also all had reflux (one worse than the others by FAR) and needed to be upright. In the end, I found something that works REALLY well, although you'll get some funny looks. If you take a Maya wrap (other ring-style fabric slings may work, too, that's just the one I had) and wrap it around the child's chest up to the armpits (think traditional Japanese kimono), and then back around the back of the chair, and cinch it up (not so tightly that they can't breathe, of course), that works really well. My kids all had good head control, though, so if that's a concern then it might not be a such a hot idea. I had the bathtub problem with one kid, too, and did the Bumbo thing (glad I'm not the only rampant instruction-ignorer out there!) for a while. I didn't like the floaty tippability, though, since I would usually have at least two kids in the tub at once, and since the one in the Bumbo would often want to lean and grab for a toy. Apparently there are some bath seats that have suction cups on the bottoms, but I always had a really hard time negotiating the things with my kids' (sometimes limp, sometimes wildly flailing) legs and never bought one, so I have no first-hand experience with them. And finally, transportation...Eddie Bauer makes a (surprisingly inexpensive) double stroller of the one-in-front, one-in-back variety, that they sell at Target. It's not too heavy, folds well, and is fairly easy to maneuver. And the back seat reclines enough for naps, so it might be good for Eden. I also have a Radio Flyer wagon...it's the Explorer, Excursion, something like that, the one with the two seats that fold up and down. When they're in the "up" position they provide good back support, or if you flip them down they're like the little red wagon version of "stow and go" and provide a shallow, flat wagon bed where a small child can lie down if need be. The seats even have seatbelts, and it's a nice option for kids who are old enough to resent looking like a baby by riding in a stroller (my two-and-a-half-year-old has developmental delays and chafes at the stroller, but can't be trusted to walk either, mostly for behavioral reasons, although the kid didn't walk until eighteen months and is still clumsy enough to not be trusted on ice, etc. anyway. If you have any questions for me, feel free to come over to my blog and leave a comment with your e-mail address (if you put in a URL it will display that and not your e-mail), and I'll shoot you an e-mail (I can't embed it in a blogger comment and keep it hidden, hence the cloak and dagger). Good luck!

Carrie said...

Hi Billie,

My daughter has arthrogryposis, which means she lacks muscle tissue and has very stiff/frozen joints. I'm new to your site, so if my suggestions are useless, please forgive me :-)

I only have one kid, so I'm no help with a double stroller, though I like the more structured Combi stroller we got for my daughter. She could sit up straight for a while before she was too tired, so it worked for her.

We use a wrap-around low bath seat for her, which revolutionized bathing. I saw one on the Columbia Medical link someone already posted. You sit them down and the strap wraps around their chest. Our issue was mostly keeping her from tipping over, because she couldn't catch herself, but it works for her slouching because when she slided down the straps catch her under her arms. Her legs are free to kick, and she can slouch herself down low enough to let her lower body float, so she can "swim" ;-)

We had to stop using restaurant high chairs because it was difficult to get her legs in their braces through the holes. We got a booster seat that strapped down onto the chair, to protect against tipping. It just meant we couldn't use booths. We used the highchair without the tray at home just as a seat at the table until recently. Mostly, she grazes all evening, so I end up feeding her at her little play table now that she can sit well enough in it.

We were told that she could get a wheelchair around age three if she needed it. She didn't.

Anonymous said...

Hi Billie. I don't have achild with a disability, but I did want to encourage you to make or adapt equipment for your daughter's use instead of searching for th eperfect product to buy. And I do know what you mean about the world being just so user-unfriendly. I went to a small college in North Carolina that was built in the early 1960's and designed as a barrier free campus. Lots of wheelchairs there. It was amazing to return to my hometown and see the narrow doors, the steps everywhere, the inaccessible bathrooms, all of it. Great school, though. I wish you luck,

Anonymous said...

Hi Billie,
I found this wrap bath chair and hoped it might help!
Contour™ Wrap-Around Bath Supports
at Adaptivemill.com

ima said...

Hi Billie,

I came over here from Tertia's blog as well. Again, I've not read through your blog, but hope I can offer some info - if you want more, please feel free to email me.

My brother was born with severe CP. Until he was old enough for a regular wheelchair (I'd have to ask my mom about age but it was pretty late) he actually had what was called a Pogon buggy. These are larger umbrella type strollers. I think Maclaren now makes one, too. Bobby then had a special molded insert for the stroller. Bobby also has a molded insert for his wheelchair, to provide additional support and cushioning.

For the bath seat - try looking toward medical supplies, rather than standard baby/kid bath seats. My brother had a large one with suction cup feet that reclined almost all the way up to sit and all the way back to lying down.

Hope this helps,
Kristen

Julia said...

Hi Billie,

I also have twins, one of whom has disabilities. As far as walking and going out to restaurants, have you looked in to getting a "kid-cart" for Eden? (small, child-friendly wheelchair) We had one when my girl was around 3 months old. It grows with your child in various ways. When they are babies, you can attach a baby car seat to it and as they get older, they sit in the cart that reclines and has a big wrap around tray on it to help keep the child up-right. check out planetmobility.com for some ideas. Best thing about this chair is that it's very restaurant friendly. Just wheel it up to the table!

Another thing that might work for you to get around by yourself, is one of those Hiker back pack for one of your kids. I do this all the time when I just want some more mobility. One is in a stroller, and the other is on my back. They love being able to see everything, and I love being able to get around better.

Dream Mom said...

Hi Billie,

Dear Son is 15 now, so it's been a long time since he was little but here's what I know.

He got his first wheelchair at age 3. That was when he started school and it was used to get him around and to transport him on the school bus. I needed one prior to that because he was so heavy in those carriers.

They have a lot of wheelchairs for kids now. One of the most recent ones we had folded up so I could get it in the car. When I say fold up, I mean, you remove the seat and then the two sides go together and you can lay it flat so to speak in your trunk. That's about all that fit into the trunk though.

When you get a wheelchair, get a bag made to hang on the back. Think ahead as to what you need to keep in there-diapers, wipes, lunch for school, etc. so you get it large enough. If you order it at the same time you get the wheelchair, it is covered by the insurance company. I have the bag made with double zippers on it so you can open it from either side. The one I get made has a smaller pocket sewn on the front of it, to store a spiral notebook that I use to send notes to and from school.

As was mentioned already, Maclaren makes a nice portable stroller that you could use now. It might be good to order that now and insurance can cover it. If you order it now, then in a year or so when you need the wheelchair, they'll pay for that. Often times, they won't pay for a wheelchair AND a stroller. When you order the stroller, get one that fits her now with some room to grow.

As for bath chairs, I don't have a lot of experience since we used the reclining ones for many years. I recently got a new one for him that does allow him to sit upright but it might be more than your girls need. It is an Aquatec bath chair that has a hydrolic lift (battery operated) that raises and lowers Dear Son into the tub. When it's raised and lowered it must be in the fully upright position which is straight up so she could sit perfectly straight.

You didn't ask but one chair that Dear Son loved a lot, was a rocking chair. He was not able to walk or stand or use his hands but a kids rocking chair with a tall back, supported his head and back an dhe was able to use his feet (which worked o.k.) to scoot himself around the house. The rocking chair also helped him with balance issues. None of the therapists ever recommended one, but he loved it and used it for years to get around the house. I also took it whereever we went. The two important things are to make sure it's tall enough to support their head and that they can place their feet flat on the floor when they are sitting in it.

If you have any other questions that I might be able to help you with, you can e-mail me at dreammom90@yahoo.com

Sarah said...

We know a boy with CP (possibly more severe than E's - it's hard to judge because of the circumstances we interact with him in & because he also has cortical blindness, so I have a hard time "reading" him and his ability levels) who's 3 and has a wheelchair already. Mitigating factors in that case might be: 1) two siblings (one older and one younger) and 2) they live in Canada so the insurance situation is quite different.

Lisa said...

Lots of comments and lots of questions. I don't have any new answers, but thought I would add in my two centss.

We started to order Ethan's wheelchair at just under the age of two. It took us about six months to get it. We had a few problems wth t and finally got.. a different one that we loved, it is called, "The Iris, also by sunrise medical.

WE used a *pixi* stroller chair, before his wheelchair arrived. It also was from Sunrise Medical.

WE love the Bumbo chair,and even now that Ethan is over three, he still uses it successfully, though i do wish they made a bigger version.

My most beloved of all medical equipment is though, the special tomato. I LOVE this chair. It does positioning, car seat, and can sit at the table. Its frame comes off the base, and you can just stick it everywhere. It is big though to carry into a resteraunt. We have not found a good solution at all, for Ethan for that.

I wish you the best of luck with your plight.

One thing for certain that rings with a resonance.. is that there are a LOT of us out here, together we have a strong voice.

I yelled and screamed and threw a fit, at the local Target store, and FINALLY they fixed the issue.

It was great to stumble by here today.

Stacy said...

Hi Billie -

Just stopping by & wanted to say hi. Wow - you are such a great mom - I'm impressed at how well you're doing your homework!

I don't have any advice on equipment, but I can releate on the accessiblity. My mom became a parapalegic in May 2004 (yep - shortly after our preemies were born). It was a huge wake-up call as to how horrible so many shops can be. I'm constantly accessing places for where we can "go" when mom comes to visit us. We've even found newly constructed, municipatliy owned, public places are inaccessible. So very frustrating.

I think of you guys often - the girls are absolutely beautiful!

Anonymous said...

First of all I want to say your girls are gorgeous. I came across your blog when I was doing research on PVL as I might be matched with a little one with PVL through adoption .
I have some ideas that could help. I have seen on eBay under car seats a belt (sort of thing) that hooks up to the car seat (Any size) and makes is a backpack. Another thing I was talking to my mom about your wee ones problems at the restaurant she suggest you call ahead and tell them you want them both treated the same. And about the wheelchair access problems, put an ad in the paper and see just how many people need Wheelchair access places and see what businesses are willing to change. About the stroller problem I have seen tandem strollers in Wal- mart Canada and the girls can face each other or the front seat can be changed to face the front. Really cool. And its only as wide as a "regular" Stroller. And you can pretty much use strollers for kids until there about six especially if the kids are on the lighter side. Just don't get any jeep brand strollers they give the idea of plenty of room but really they suck. Now the bath, I know bumbo's competitor Prince Lionheart make the bebepod and it looks more bath time friendly. I haven't seen the product in person but it looks good in the magazines and their website.
Sorry to babble on but I like to help. Take Care.

Ashley said...

Hi Billie,

I think the tomato chair would work well for you and Eden. It can be strapped onto a regular chair, used as a carseat, and used in its base. It is very similar to the Feeder seat you have now for her.


http://www.adaptivemall.com/mpsmobfloork.html

I have brought the tomato chair into the movies and to restaurunts for the children whom I work with. I just strap it to the back of the regular chair.

For the tub situation, what about having Eden sit in a laundry basket? She should be able to get enough support by sitting against the corner of it. Also, if you add a foam padding (it's shaped like a bear) it might help her from slipping out at the bottom.

Good Luck with Everything! You're doing a great job!