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#12543 - 08/22/06 05:20 PM She rolled OVER!
CShell Offline
Member

Registered: 11/10/05
Posts: 1193
Loc: Fort Meade, MD
YAY! Maybe this Early Intervention is paying off!!! Last night while she was doing tummy time on the couch with me, she rolled over to her tummy!! Good thing I was watching her, she always plopped off the couch lol She did it twice last night, tho doesn't seem interested in doing it again today (finds it hilarious when I roll her over myself tho! lol).

Just wanted to share! Her first physical milestone! Woot!
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Courtney
Mom to Julia

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#12544 - 08/22/06 05:48 PM Re: She rolled OVER!
Angel24755 Offline

Member

Registered: 05/13/05
Posts: 633
Loc: PA
That's Great! Who knows what a few more months will bring...maybe some crawling or scooting will follow!!! Yay!
Lisa
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#12545 - 08/22/06 10:26 PM Re: She rolled OVER!
Curtise Offline
Member

Registered: 05/16/06
Posts: 115
Loc: Sheffield, UK
Hurrah for Julia! I'm so pleased she's enjoying playtime with her mum!

Courtney, have you received my emails about the Tubifast? I'm happy to post it on to you again if you'd like.

Still waiting for Nina to roll. She has once but I think that's more to do with her (large) dad sitting on the bed and flipping her over whether she wanted to or not!

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#12546 - 08/22/06 11:16 PM Re: She rolled OVER!
CShell Offline
Member

Registered: 11/10/05
Posts: 1193
Loc: Fort Meade, MD
No, I hadn't recieved any emails. Weird...but, I did switch my email to courtney.shell@gmail.com...is that the one you're sending it to?

The Tubifast works really well, actually - I can't remember if I sent you an email once I recieved it. We don't use it every night, but more when her skin has a really dry spell...then we soak her in Vaseline, soak the Tubifast in water/vinegar and let her "stew" all night lol I just wish they had something similar for her head!
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Courtney
Mom to Julia

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#12547 - 08/24/06 01:54 PM Re: She rolled OVER!
rodkarbrown Offline
Member

Registered: 05/23/05
Posts: 148
Loc: Rochelle IL USA
Courtney:

Tell me more about the Tubifast!!

Thanks
Karla
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Karla Mom to twin girls from Haiti, Kaylee (Netherton Syndrome) Kylee not affected.

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#12548 - 08/24/06 03:15 PM Re: She rolled OVER!
CShell Offline
Member

Registered: 11/10/05
Posts: 1193
Loc: Fort Meade, MD
Karla, I think you mentioned awhile back about the soaking the clothes in vinegar overnight? I sort of took that idea and went with it lol

Curtise sent me something called Tubifast, which is like really tight pants and long-sleeved shirts...they sort of feel like stockings. I soaked them in warm water and vinegar, put her Aquaphor on, put the Tubifast on, and then put her normal clothes over it (I made sure to bundle her up lol I can imagine how cold wet clothes would feel after awhile lol).

It works pretty well, actually, when she has her bad skin cycle...I'm not sure if you can get them in the States, I guess you could Google it. Curtise lives in the UK and she got a pair from her hospital!

I don't know if you tried the vinegar-on-clothes thing yet, but it really did work pretty well for us, I bet you could do it without the Tubifast, using just some semi-tight clothes [img]http://www.ichthyosis.com/ubb/smile.gif[/img]
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Courtney
Mom to Julia

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#12549 - 08/24/06 07:59 PM Re: She rolled OVER!
Curtise Offline
Member

Registered: 05/16/06
Posts: 115
Loc: Sheffield, UK
Karla,
As Courtney says, the Tubifast garmets are tights and a long-sleeved top made of a thin kind of stockinette (cotton and lycra, I think) which we use under Nina's clothes most of the time, except when the weather has been hot. Nina's skin is still so fragile that she needs some protection and the tubifast has flat seams and labels on the outside.

Like Courtney, you could use them occasionally as part of "double-wrapping" to keep the skin moist overnight. The vinegar is an interesting idea, is that to keep the pH of the skin lower to prevent infections?

The garments are pretty expensive though, although we can get them free on prescription. I did find a website but can't recall the link now, sorry. Feel free to email if you want to know any more. They aren't pretty but they are useful!

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#12550 - 08/24/06 11:21 PM Re: She rolled OVER!
CShell Offline
Member

Registered: 11/10/05
Posts: 1193
Loc: Fort Meade, MD
They are a total pain to put on when they're wet tho lol
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Courtney
Mom to Julia

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#12551 - 08/25/06 07:57 PM Re: She rolled OVER!
Curtise Offline
Member

Registered: 05/16/06
Posts: 115
Loc: Sheffield, UK
I agree, they are a nightmare to put on, Nina hates having the top put on but is OK with the tights. Getting her arms through the close-fitting sleeves without getting it all twisted takes some doing, especially accompanied by loud wailing... hers and mine!

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