Toddlers with cerebral palsy...

[twintotwin]

Milo has outgrown is crib in a sense that he's fallen out of it. Very bad since he doesn't have the reflexes to keep him from getting hurt badly.

The PT suggested a toddler bed. She thinks he can handle getting in and out of it.
Our nurses will have to do some bending for his care. I don't know if all of them are up to that.

Taking into consideration that Milo can crawl up onto furniture and get down, usually without falling...and he can walk- unsteadily- but he can now get from room to room without making a stop (2 out of 5 times).

Any suggestions on a bed? Any particular brands/styles? What does everyone here use for their older kids?

TIA!

~kerry xo!

[Mom2TwinsPlus1]

Emma is in a hospital bed and has been for some time. She just needed the extra room. But she can not get out of it by herself since she is completely inactive. I do know most people I know who have kids with CP use toddler beds, our nurses said that most of their kids were in toddler beds and they just had to bend down or sit on the floor to take care of them. They appreciate the fact we have emma in a "tall" bed but they didnt mind toddler beds either. You have to get what is right for your child and make your nurses adjust

[madelyn and rynns mom]

Maddy is in a princess toddler bed!!! She can get in and out of it real easy and it helps us out spacewise!! It just uses the crib mattress for a mattress, which is good being that she wets through sometimes at night and you just have to wipe down the mattress with clorox wipes and switch the sheets instead of shampooing like a regular mattress!!

Love Kris http://www.tracheostomy.com/iB_html/non-cgi/emoticons/inlove.gif

[McKenna&clan]

My SIL gave us their hand me down toddler bed. Â*The crib matress fits the bed...you probley already know that. Â*The thing with that is YES, OH YES...it's a long way down! Â*As long as you have younger nurses with good knees and backs it should be ok. Â*It would really suck having to let a nurse go just because they have a poor back or knees and couldn't get down that far. You can't make a person adjust to that low of a bed, so ask your nurses too...if they have any ideas. There are side rails that I have seen at babies r us that are pvc pipe and mesh material that go on a twin bed (even the entire length). I have bought several of the large "quishy" pillows...one with the tiny, tiny beads that have an inner and outer cover...and placed at the side of her bed for when I am kneeling down and doing cares. Â*(those pillows are also great for preventing bed sores and skin breakdown) Â*I ended up buying a small sturdy shelf to place right next her bed because with the easy air compressor, heating element, suction and sat monitor being so much higher up...I was afraid of her pulling it down on herself. Â*We lowered the IV pole way down and have her patrol pump there and then my DH mickey moused the drainage bag from the easy air to the pole. Â*I'll get him to help me take a pic tonight....HEY IDEA! Â*Taking a small video of getting your child to bed at night and the routine involved....That's what I can send you!!!! Â*And you thought I forgot. Â*I better go clean her bedroom and our bathroom....he, he! http://www.tracheostomy.com/iB_html/non-cgi/emoticons/rofl.gif
Hope that helped
Janet

[JWorthington]

Here's Sam's bed. Â*It is by a Danish company called Kaiser Betten and it is the Olaf bed. Â*The doors on the front open so that Sam can climb in and out by himself but he is safe and cannot fall out. You just close the doors and lock them. Â*I clamp the feeding pump to the bars on the cot (don't need an iv pole) and feed the O2 tubing through the bars. Â*they do different designs with perspex at the side or bars all around.
Hope this helps
Juliexx
kayser beds (http://kayserbetten.de/cms/front_content.php?changelang=3)

[annettevz]

Ash is in a regular twin size bed. She's too freakin big for a toddler bed. So I can't help ya.

http://www.tracheostomy.com/iB_html/non-cgi/emoticons/upsidedown.gif

Annette

[JWorthington]

Forgot to add, its a Danish site, so don't know about availability in the us.,but what makes it so good is that the base can be raised for pt, etc., it has a remote control (I have to keep that away from Sam!!) which just raises the base almost up to the top which is great for pt and diaper changes but I wouldn't recommend it for suction, it takes too long to raise , I just get in and sit on the bed!

xJuliexx

[JWorthington]

thought of something else It is the same size as a regular single bed. The only other problem is that these are mega expensive!! We got ours through funding via our ot. Not sure about current rates but would probably cost in the region of $10k - now you know why I can put up with the nhs!!!
Julie

[bradensmom]

There is a great bed that is enclosed so that he couldn't fall out. It is called a Vail bed. I think that I have a brochure. If I can find it, I will post their web site.

Amy

[preki]

Ooops.

I went to look up the Vail bed because Milan's out of his crib and I thought I'd go see what everyone else is doing, and upon looking up Vail bed all I found were recall notices...so you might want to skip that one.

Kerry, our crib converts to a toddler bed, and I got a bed rail from the used baby stuff store that runs the length of the bed and attaches to the frame under the mattress. But it's not the best solution, because Milan doesn't have any cares any longer but I have to lift him in and out of it over the railing...and he's only 25 pounds! It's going to be tough. He could crawl out of it on his own if the railing wasn't there, but if the railing wasn't there, he'd fall out in the middle of the night. Kid sleeps like he's riding a roller coaster.

So, if you come up with a good solution that isn't going to send me to the poor house for the next 20 years, post it, would you?

-----------
RE: Vail Bed (from the web)...

In a response to ongoing concerns about manufacturing quality and labeling, the Food and Drug Administration (FDA) and the Department of Justice today initiated seizures of all finished Vail 500, 1000, and 2000 Enclosed Bed Systems made by Vail Products, Inc., located in Toledo, OH. Use of these systems poses a public health risk because patients can become entrapped and suffocate, resulting in severe neurological damage or death.

FDA advises consumers to stop using Vail 500, 1000 and 2000 Enclosed Bed Systems until they receive additional instructions from Vail Products.

FDA is aware of approximately 30 entrapments resulting from use of the Vail Enclosed Bed Systems, of which at least 7 resulted in death.

The U.S. MarshalÂ’s Office also seized welded in-process components and all labeling and promotional materials for the Vail 500, 1000, and 2000 products.

FDA believes the Vail products seized today do not meet with the Quality System regulations of the Federal Food, Drug and Cosmetic Act and pose significant health risk for consumers.

The Enclosed Bed Systems are misbranded because they are dangerous to health when used in the manner, or with the frequency or duration prescribed, recommended, or suggested in the labeling. They are further misbranded because they lack adequate directions for use and adequate warnings, thereby placing patients at an increased risk of entrapment and asphyxiation.

Additionally, Vail Products failed or refused to furnish material or information to the FDA as required by Medical Device Reporting regulation and the Reports of Corrections and Removals regulation.

FDA inspections of Vail Products, Inc., revealed that the firm has continually failed to follow the requirements of the Quality System regulation when manufacturing enclosed bed systems. Vail Products has previously received two FDA Warning Letters outlining unacceptable practices. The firm was given an opportunity to correct the violations, but failed to take appropriate actions.

[lovemymak]

Julie, I LOVE that bed! That is awesome for care, etc! Too bad they are so pricey! Sorry, Kerry, I don't have any suggestions for you. http://www.tracheostomy.com/iB_html/non-cgi/emoticons/luck.gif

[Melisande]

We got a crib that was convertible before we knew what Donovan would need. We converted it last year to a toddler bed. It has a partial rail and sits VERY low to the ground. Yes, it is difficult to do some stuff with Donovan, however, we got a little foot stool and the nurses and myself sit on it if we need to bend down for any length of time. Donovan is also on a vent at night and he does fine with it. He really enjoys getting in and out of it himself and if he falls/rolls out, he's only about 9 or so inches off the ground. The brand we bought was "Million Dollar Baby". Ha ha! We didn't know how true that was going to be! http://www.tracheostomy.com/iB_html/non-cgi/emoticons/sarcasm.gif

[cariaad]

Alli never liked the toddler bed (I thought it was so cute) but she did fine with a twin mattress and box spring in the floor. She rolls around a lot and now has a full size bed in a regular frame, or she sleeps with us, Deb

[Jacob's Mom]

http://i10.photobucket.com/albums/a136/ahollingsworth/mommyjacob003.jpg

Here's Jacob's bed. We found it by chance while contemplating getting a hospital-style bed. It is perfect height for doing everything. And, it has a few drawers on the bottom - perfect for supplies. Even has a trundle, so I can sleep in his room, if needed. However, it probably wouldn't be good for a kid who could possibly fall out. We don't have that worry with Jacob, although we do have a rail on it now.

[madelyn and rynns mom]

Amanda, his room is adorable!!!!!

Love Kris http://www.tracheostomy.com/iB_html/non-cgi/emoticons/inlove.gif

[twintotwin]

OMG Amanda...I want to eat Jacob's toes!

I am researching this Vail bed I hear about. Interesting...

[twintotwin]

Julie- Your bed is awesome! It seems they don't have anything like that in the US.
So I researched the Vail bed and read the same info as Kari listed about recalls.

I am getting desperate now. The situation with Milo is getting very dangerous.
His crib doesn't convert to a toddler bed. When he's awake he is standing at all times in the crib.

Now here's the deal:
I went out and bought a crib that converts to a toddler bed. I didn't buy the toddler bed because I was afraid if Milo stood up there would be nothing to catch him other than the one wall it's against.
With the crib, it would be just the one side that is left open.
And like Kari said- I bought the "Slep Tight Bed Rail" to keep him from falling out at night. I figure during the day we could leave it down so he can get in and out as he pleases.

Now here is the crib I got: Crib I Bought But Haven't Put Together Yet....Because I Am 2nd Guessing Myself! (http://www.toysrus.com/product/index.jsp?productId=2333444)

We plan to put this together today as it's the best time since Milo's at school. Do you guys think I should return it? And get a toddler bed? .....I've never been so stressed out over something so simple.

What do you think of this crib? Will it encourage him to stand up more? (which is not a good thing)

[lovemymak]

Have you ever seen these? Does Milo have the fine motor skills to be able to unzip this? Some people don't like it because it seems too much like a "cage", but I had one friend who absolutely loved it. Her daughter was too little for a toddler bed and she didn't want her running around in the morning. It gave her time to get in there in the morning before she would try to climb out of the crib and fall. Just another idea.....

http://www.onestepahead.com/product/86193/309775/117.html

[twintotwin]

Yes Sarah, I had looked into that tent, but I think Milo would tear that to pieces in a day. He's rather mighty and determined.

I would LOVE to find a bed like Julie's in the US. Anything remotely close to it!

[Mom2TwinsPlus1]

I know before we got our hospital bed they were saying how medicad might cover the cost of Emma's bed when she is a bit older. The physical therapist suggested a sleep safe model. Sleep Safe beds (http://www.sleepsafebed.com/sleepsafe.htm)

[indiemum]

Kerry,

What about Indie's bed. It does have a slight ladder and slide. Our kids usually climb the slide up into it. I can lift Indie easily into it as well. Would it work for Mr. M to slide out in the morning? The other thing I like is that it is completely enclosed. If you want pics, let me know.

Kellyxoxo

ps Good job Milo for growing so big and strong http://www.tracheostomy.com/iB_html/non-cgi/emoticons/hug.gif

[twintotwin]

That's an interesting bed. I just can't tell if the mattress goes down further.
I don't think it's what we're looking for since Milo can stand on his own- and get jump out of a regular crib.
But again, very cool bed! Probably for Elijah. Thanks!

[JWorthington]

Kerry
just wondering - is there anywhere close to you that makes bespoke beds?? There is a store in our town that makes furniture to order and advertises themselves as manufacturing beds for special needs - just a thought.

Julie

[JWorthington]

Oh and here's something else that was suggested to me - Sleepsafe beds.

Good luck http://www.tracheostomy.com/iB_html/non-cgi/emoticons/luck.gif
Juliesleepsafe beds (http://www.sleepsafebed.com/insurance_01.htm)