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My friends I need your help, my great niece was born with a rare genetic disorder called PHA type 1 MTOD, and she has been really sick. She has a gastrostomy button by which she is fed and her mum has made these little fabric discs which go behind the tummy button to absorb the leaks and protect her sensitive skin. These little discs get changed frequently during the day and night to keep her dry. So she goes through quite a few per week, they are made with two layers of fabric, flanellette and thin fleece as they are both very soft and absorbant. We dont seem to be able to make enough to keep up with demand, so if any one is able to help me out it would be so good. If you PM me I will send you the dimensions and I can even supply some fabric so you are not out of pocket. The discs are only about 3ins in diameter. For further information about our little girl please see this website.
http://www.wix.com/stevebax/pha#!vstc0=about-pha
Thankyou in advance Ruth
Comments (18)
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by
crafter2243
10 Oct 2011
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Ruth I just went to the blog and she is so adorable. Can these discs be washed or do they only have a one time use. PM me if I can be of any help being in the USA.
1 comment
The discs are only 6cms across, and made of fabric, they could be washed, but being so small they tend to shrivel up in the wash so Lindsey tends to throw them away, If you have the time to make some for us we would only be too happy to send some fabric to USA so they can come back made up. They are made of Fleecie and flannel. I will PM some photos to you. thanks Ruth
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sorry, don't know how to pm. clicked every button there was!! I'm in ACT & would love to help. Can you pm me??? Lyn. xx
1 comment
Lyn Pm on the way
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Here is a picture of what might be needed. If a digitizer could make a design template these could be made rather quickly. Also if they were air dried they might not shrink up as much.
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It looks like a small coaster, only with a slit and a hole in the middle. Avery could use this too, but I think they could be washed ,in a net bag,in the washing machine and reused. Right now my daughter uses some kind of pads, but this is a good idea-Toogie
I know when I make something I wash in hot water and dry in the dryer before I start stitching. Can you post a picture of what Avery needs.
Looks sort of like a thingy for a wine glass or goblet to me.
But they also overlap and have a velcro closure to hold them in place
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I knew as soon as the submit button was pressed I had forgot the link to the picture below.
1 links:
[1]
http://mybuttonbuddies.com/
mybuttonbuddies.com
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These are exactly the same, but at $4.99 each they are somewhat expensive. My niece has tried washing them, they need to be washed in warm water to remove the marks from the bile etc, and she doesnt own a dryer so they were definatly air dried, they still shrink a little and then need to be ironed, all time she doesnt have, so she throws them out when they are stained and wet.
I saw some other ones with a snap but if they are tossed out after being used don't think that is necessary. Several could fit in one hoop and quickly stitched out ~ just need for a digitizer to find your post.
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I hope this persons design isnt copyrighted http://mybuttonbuddies.com/ but if someone could digitise the disc it would certainly make producing them faster, any thoughts welcomed
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I will love to help yo make some of this disks...you may pm with exact dimensions...She will be ok...you'll see. God still works miracles....
1 comment
Thankyou for your kindness, PM on the way.
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by
hightechgrammy
11 Oct 2011
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Hi Ruth,
I'm a mom of a child who has a rare genetic syndrome. My son didn't have the g-button, but many of my friend's children have.
The site of the stoma can get really sore. You are right it needs to stay dry, but you may need to do more than sop it up. Please encourage the parents of your little great niece to find others who have the PHA 1 MTOD disorder to share in all the hundreds of little suggestions and support. NORD is a good place to search and it will give you names of support networks. If you can't find one specific to that disorder, then definitely find a support network for G-tube fed babies. IT will help a lot and prevent lots of problems for her.
Hugs, and thank you for being so supportive of her! Not all families are as accepting. Love and hugs, Jan If you'd like some more guidance, I run an international support network and I'll help you find help. PM me! I'll also try to get ahold of you. prayers for your little girl.....
I'm a mom of a child who has a rare genetic syndrome. My son didn't have the g-button, but many of my friend's children have.
The site of the stoma can get really sore. You are right it needs to stay dry, but you may need to do more than sop it up. Please encourage the parents of your little great niece to find others who have the PHA 1 MTOD disorder to share in all the hundreds of little suggestions and support. NORD is a good place to search and it will give you names of support networks. If you can't find one specific to that disorder, then definitely find a support network for G-tube fed babies. IT will help a lot and prevent lots of problems for her.
Hugs, and thank you for being so supportive of her! Not all families are as accepting. Love and hugs, Jan If you'd like some more guidance, I run an international support network and I'll help you find help. PM me! I'll also try to get ahold of you. prayers for your little girl.....
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I will make some when the design is digitized. I have a new hospital blanket which I can use as batting, then flannel on one side and regular cotton on the other. Sound good? Everything preshrunk, hopefully will not shrink too much after that. Prayers and blessings. christine
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I digitized a button-tube-holder ... if anybody wants it, please e-mail me liz92b @ gmail.com
1 comment
[IMG]http://i70.photobucket.com/albums/i93/Lizzerd38/Sewing/L2_TubeHolder.jpg[/IMG]
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by
teddybear117
11 Oct 2011
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Tried to access the url but it came up blank.
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Had to wait a bit then was able to view.
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liz92b has digitized one and uploaded in DBC. This will be a great help. Thank you Liz :o)
Greetings, Bettina
Greetings, Bettina
1 links:
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2,5inch tube button
designsbycuties.cuteembroidery.com
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by
nanniesara
12 Oct 2011
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Prayers for Katie, I know how scary it can be with a newborn with medical problems. I pray that she will do well with this. May God be with her and all the family. Please keep us updated. Sara
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by
scrappinhappie
12 Oct 2011
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I would love to help make these for you, please let me know where to send them.
1 comment
PM being sent
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I just want to say thankyou to all of my dear friends that have come to our aid, It is an unbelievable response. Thank you just isnt enough, but it is all I have.
Love to you all Ruth
Love to you all Ruth