Sad story, but I need your help please! **UPDATE page 3!** - Mothering Forums
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#1 of 57 Old 08-25-2004, 03:15 AM - Thread Starter
 
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Hi mamas,

Last week we received horrible news... my sweet ds has been diagnosed with a neurological disorder and will progressively lose his motor skills . He is 17 months old.

He currently still has most of his motor control so we sling regularly using the hip carry. As this disease progresses he will lose head and neck control, and I need some help with finding a sling carry that will be able to fully support a larger child (he weighs 21 lbs now). I currently have an adjustable ring sling, a mei tai, and a KKAFP, but I am SO willing to get something different if it will help.

Can anyone help me with suggestions? I hate the thought of him spending much of his time in a stroller or wheelchair, and he will hate it too, but as he grows and loses strength I won't be able to sling or carry him in the usual way. I want to carry my baby near to me as long as I can. Thanks for any help you can provide.

Peace and blessings,
D'Anne
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#2 of 57 Old 08-25-2004, 03:52 AM
 
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I don't know what kind of carrier you can use, I just want to give you some hugs mama!!!

Amy

Amy praying.gifbfinfant.gifslinggirl.gif familybed2.gif saynovax.gifsewmachine.gif crochetsmilie.gifWAHM to energy.gifElle 3/2/2004, joy.gifMeadow 12/02/2006, bouncy.gifAzaliah 4/09/2009, and baby.gif Olive 09/23/2011. I have been partners.gif married to my husband Bill since 2/22/03.....

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#3 of 57 Old 08-25-2004, 04:07 AM
 
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First ... so sorry to hear this ... and sending light & strength energy to you and your family ...

Second ... am thinking the ring sling is your best bet (not that I have such wide carrier experience), just because of the variety of positions that the child can be held in, and because size is pretty much not a factor. I have carried my 4yo DD in a sling, and while it is heavy, it *is* doable. And the shape of it can be pulled up even with a larger child in so many positions, and is specifically good for head support ... have carried my toddlers in reclining/sleeping positions in the sling very often, and their heads are fully supported if the sling is pulled up well.

But like I said, my carrier experience may be long, but it is also narrow. So FWIW ...
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#4 of 57 Old 08-25-2004, 04:11 AM - Thread Starter
 
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Thank you both for the hugs... they are much needed and much appreciated .

merpk, can you describe the reclining/sleeping position a bit to me?
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#5 of 57 Old 08-25-2004, 04:34 AM
 
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Hello, mama

First, hugs to you. Are you getting the help you need with this news? I can’t imagine. Don’t really know what to say other than that I feel for you.

About the sling, yea, I could imagine that another sling would work better as your child gets older. First, the upright carry in the ring sling could work two ways – with his head at the ring or opposite side (leaving plenty of room to tighten up). I put the butt in first then lay the rest of the body in while I remove my arm – then tighten the sling. You can also do a reclining carry with just the legs out at the knees. Also the carry where the legs are crossed in front but my DC never liked that.

I have one of those long carriers that you tie in all kinds of ways (just a long piece of fabric). It works really, really well – IF you get it tied on there well. There’s about a billion ways to tie it on this Swedish site – I’ll look for it. You could get quite a bit more support for your child’s head with this type of carrier. I got mine on e-bay for like $20. I could find the seller if you want. Also, you could just buy a large piece of fabric to test – that’s basically all these are anyway.

There are also quite a bit of carriers with more structure that I’ve never heard of – maybe some mamas can help with those.

I don’t know if this is an option for you because it’s not quite skin to skin baby carrying but I would consider one of those backpack strollers. There’re really city friendly (I see your in the SF area) because there’re small as strollers. You can lift your child on and off your back as you get tired or as he gets fussy and wants to see more at your level. I used one for a trip along with the sling and it worked well for long days. I was in love with this borrowed contraption until DC’s feet got caught in the wheel cover – ouch! I imagine that they have some better designs out these days but I though.

One more thought, being in SF you may find some shops that would be willing to lend you a sling to use for a few days. There were definitely shops in Santa Cruz that allowed that. Also, I’d frequent the consignment shops.

Gotta go – DC wants something. Wishing you and your son well, mama.

Mama to DD September 2001 and DD April 2011 *Winner for most typos* eat.gif
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#6 of 57 Old 08-25-2004, 05:41 AM
 
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I'm sorry, I can't offer any advice, but wanted to send some your way. I'm so sorry for what you must be going through. I do have two MamaBaby slings.... I don't know how to use them very well, but using the two together, I think might offer a lot of support. But I'm not very good with ring slings, so I wouldn't know how you would wear them. I live in the Bay Area, too. Maybe if you're close enough, you can try them out and see how you like them? PM me if you're interested.

I hope you find something that works for you.
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#7 of 57 Old 08-25-2004, 06:06 AM
 
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I second the idea of a wrap carrier. This website is quite helpful with all the ways to carry in a wrap. Here's the Link . I believe this is a swedish site. Just click the words beside the folder icons. It's well illustrated with pics so you souldn't have any trouble. Also, some of instructions are in english. Hugs to you and good luck!

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#8 of 57 Old 08-25-2004, 08:31 AM
 
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I have no advice to offer, but I wanted to send you some hugs. I hope you have lots of support to get you through this trying time.
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#9 of 57 Old 08-25-2004, 09:57 AM
 
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Mama, I am so sorry for what you're going through, and I admire your strength in looking for a way to keep your baby close. While I haven't used one, I would think a wrap carrier like a didymos might be your best bet.
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#10 of 57 Old 08-25-2004, 10:20 AM
 
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I am so, so sorry to hear this sad news. Big hugs for you and your family.
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#11 of 57 Old 08-25-2004, 11:04 AM
 
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Maybe an Ergo used with the hood up to hold his head, like this picture shows? http://ergocarrier.com/ergobabycarri...back-large.jpg

Big hugs to you and your baby.
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#12 of 57 Old 08-25-2004, 11:40 AM
 
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I just wanted to tell you how sorry I am for you and your family. :-(

On my reflux board there's a mama who has a child with CP, who does not have good neck control. She uses a sling with her child. I think she just rests her head on her mommy's neck and shoulder.

She also uses a pillow similar to what you'd use to pad a kitchen chair, but longer, to help her dd get head control when she's sitting in her doorway bouncer. I'll bet you could put him in a frame back using such a pillow for head support if you had to.

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#13 of 57 Old 08-25-2004, 12:53 PM - Thread Starter
 
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Oh mamas, thank you all so much for the support. Our family is nearby and is helping, but nothing can really take away the pain. We are focusing on one day at a time, and enjoying our precious little one as much as we can. Here's a picture of him with DH if you are interested: http://www.dlovesmarshall.com/galler...2294.sized.jpg

OK, for the sling suggestions... I didn't think of a wrap sling. This is a great idea! Like a Moby, right? There is a local store that sells something like that, maybe they'll let me try it out.

purplemama, thank you so much for the offer . I have a couple of ring slings, is that what mamababy slings are?
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#14 of 57 Old 08-25-2004, 01:29 PM
 
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Seems you are getting some good sling advice already! I just wanted to add some extra hugs, good thoughts, and prayers for you and your family.
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#15 of 57 Old 08-25-2004, 01:39 PM
 
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I'm sorry to hear about your news. It's very hard to face a diagnosis like that yet at the same time it's healing. You may not be there yet.. I does get easier.

I haven't figured this out yet myself. Ihave a 22 pound 25 month old and I can't really sling her. SHe has very underdeveloped motor skills. SHe can hold her head up but can't really focus on anything while she's working that hard. She can't sit or roll over if that gives a better idea. I tried making a wrap last night out of jersey but she sunk down alot. It's really tricky finding something and you still want and need to hold them close. We have the other issue of her legs being super floppy and we are supposed to keep her knees together as much as possible.

If you find anything that works please let me know! I have a friend who's daughter has Rhetts syndrome and I'll ask her if she's got any ideas.
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#16 of 57 Old 08-25-2004, 01:57 PM
 
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bs"d

I don't really have any sling advice that you haven't already recieved, but I just wanted to offer my s. I love that pic of your ds. He is so beautiful; I am in tears wondering why this had to happen to him. It must be so hard to have seen your ds learning skills that you will now have to watch him lose.
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#17 of 57 Old 08-25-2004, 02:19 PM
 
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I'm so sorry about your sweet Jackson. I don't have any new sling advice to offer, but I wanted let you know I'm thinking of you.
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#18 of 57 Old 08-25-2004, 02:20 PM
 
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Sorry to hear the news!

If you are interested in using a wrap go to www.mamatoto.org. There you can get directions for making your own wrap. Also there is a ton of information there, different carrying styles shown step by step-some animated.
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#19 of 57 Old 08-25-2004, 03:03 PM
 
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Many, many hugs to you. I'm so sorry to hear about Jackson, how heartbreaking. That's a great picture of ds and dh - completely adorable Sending you much love and light...

You've got some good suggestions. A wrap would be my choice too as the positions are virtually endless and you could easily adapt to provide him with more head support.
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#20 of 57 Old 08-25-2004, 03:15 PM
 
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Oh mama, many many hugs to you...

The wrap sling and the Ergo would be my thoughts, too, but I don't have any experience with slinging bigger and older babies since ours is just eleven weeks old...

peace and love to you and your partner and jackson and your family...

warmly,
claudia
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#21 of 57 Old 08-25-2004, 03:57 PM
 
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Looking at the picture of your beautiful little boy, I got all teary! I am so sorry to hear that he has a neurological disease! (

I haven't used a podaegi, but I wonder if as he gets older you might be able to adapt that to carry him as he gets too heavy for a ring sling...it would be better for your back, if you could make it work.

(http://oranckay.net/podaegi/)

Good luck, and I'll be praying for you.

Misti
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#22 of 57 Old 08-25-2004, 04:30 PM
 
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Hi
First, I'm so sorry for your news. I'm wishing you and your family a lot of strength and courage.
Second, your son is absolutely adorable and is the spitting image of his dad. great picture and thank you for sharing.
third, I don't know if this has been recommended, but I think a wrap might work well for you. It can be used in an infinite number of positions, and is a two shouldered carrier - which will be comfortable for you for long periods of time. There are expensive wraps like the didymos and less expensive wraps like gypsymama.com.

good luck and best wishes to you and your family.
amy
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#23 of 57 Old 08-25-2004, 04:53 PM
 
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I am so sorry, I also got tears in my eyes looking at your beautiful son.
many hugs and strength to you.

I think a wrap is a good idea but IMO a woven wrap would be better than a stretchy one for better support. I have heard that the stretchy ones can stretch out a little with heavier weights.

We have an Ellaroo and love it, but I have no experience with the moby.

Im sorry you and your family have this happening, good luck finding a carrier that works the best for you and your son.

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#24 of 57 Old 08-25-2004, 05:17 PM
 
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I'm sorry, I should have put a link in for the MamaBaby slings before. They are ring slings that use interlock woven fabric, so much more stretchier than usual ring slings. Take a look . There are also some photos of what you can do with two of them at the Willowbean site.

That's a great pic of your DH and DS, btw.
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#25 of 57 Old 08-25-2004, 05:23 PM
 
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to you, mama. What a hard thing to go through - my dd is nearly the same age, and I just can't imagine the emotions you must be having. You are such an awesome mama for thinking of things that will help him so soon after hearing his diagnosis!!! Way to go!!

1. I think the absolute best sling to use would be an asian stye carrier - not the traditional ones that are small and square, but more like the ebmt or the kozy. You could even get one custom made that had a little stiffer/larger head support. The weight would be well balenced, and it would offer a lot of support to your son.

2. A lot of people have recommended a wrap carrier - I would say to definately try somethng like an ella roo for this, vs the other stretchy carriers. I stopped using my stretchy carrier around 20 pounds because my dd sagged too low...it wasn't necessarily uncomfortable, just unweildy.

3. 2 adjustable slings was also a great idea!

Hang in there!!
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#26 of 57 Old 08-25-2004, 06:06 PM
 
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I rec a moby. I carry my 25lb 18mo in it easily and think that you'll be able to do the hug hold and the stretch of the fabric will give him support without being too stiff like a woven fabric.

I am sorry you are going through this.
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#27 of 57 Old 08-25-2004, 07:28 PM
 
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This is the position merpk may have meant. I think it will work for you, the op as well as the mama with Meg. It says for small babies, but I can actually still do this w/ my 22 lb almost-two-year-old. Hth.
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#28 of 57 Old 08-25-2004, 07:53 PM
 
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Oh mama, I'm sorry

My favorite carrier with my toddler is the Ergo---comfortably distributes the weight, but easier to use than a wrap-around or ABC. You can use it in the front or the back and the head support works really well. I like stretchy pouches also, but I have a bad back and the Ergo is the only carrier I can use for extended periods of time now.

I hope you're able to find something that will work for you two.
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#29 of 57 Old 08-25-2004, 08:05 PM
 
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Sounds like you got a lot of great advice.Do you know to what extent he will lose his abilities?I would get him into Occupational and Physical therapy early on so they can work with him in possibly maintaining and learning skills.My daughter has mild CP and is very clumsy and weak.One of the girls in her class has a disorder that has left her with little neck support and limbs that don't work right.She wears ankle,wrist and knee supports and is able to get herself around by swinging her body around with her wrists.It looks painful but she has developed callouses in all the right areas.She even gets around on cement!She has had several surgeries to help her as well.She has the sunniest disposition of any child i have ever met.SHe is so awesome with her new baby sister too.She uses a great lightweight stroller on the side.When the sling gets to be too much there are many great inventions out there now.

Hugs and many thoughts for your family during this journey.
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#30 of 57 Old 08-25-2004, 09:17 PM
 
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I have seen a back carry work really well for a little downs girl with low tone. She was probably 50 lbs, but here gmama carried her just fine on her back. She slouched against her for support, but she was very stable. I think a pogedi might good as he gets heavier.
If all a favorite carrier or hold doesn't give enough support, you can always suppliment with a second ring sling to add support at the shoulder or hip.

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