[tri-med] Re: Karen-apnea (Jennifer)

No, thanks for the info about minime.  I might see if we can maybe try a 
nasal just for kicks.  You never know with Elanor!  As for sewing a 
headgear, maybe chewing gum a paperclips might work--it would be better than 
my sewing, and my husband is not much better!  I might go back to the sleep 
clinic and get ideas from them  The seem to love to fiddle with things and 
tweak equipment to make it work better.  They may have some new ideas.

Jennifer, mom to Arwen, 6; Elanor (t18), 4; caregiver to Joe (cerebral palsy 
& spastic displaysia), 25 & Eric, 18; and wife to Andrew
----- Original Message ----- 
From: "Kraig Warnemuende" <ad6075@xxxxxxxxx>
To: <tri-med@xxxxxxxxxxxxx>
Sent: Wednesday, December 15, 2004 3:17 PM
Subject: [tri-med] Re: Karen-apnea (Jennifer)


> Jennifer--hope this helps a little....
> Keren's mask is called a "MiniMe" and is put out by SleepNet.  The mask
> part only covers her nose, though, so that won't help for Elanor....
> The headgear part really only comes in a small adult size, so Kraig
> took it apart and sewed it to fit Keren (yes, Kraig, not Loren.  Loren
> wouldn't know one end of a needle from the other! :) ).  The mask fits
> Keren pretty well, and we're able to avoid leaking most of the time.
> She puts up with it very well, too--I usually put it on her before she
> goes to sleep and it's one of her bedtime routine signals.
>
> Sorry I don't have better info.... I've got to get the name of the
> headgear part that Keren has.  The last few times I've asked for one
> (so we can make a new one) the company has sent me a different style
> that can't be adjusted as easily.
>
> Interestingly enough, I'm headed out this evening to take my
> grandmother to her first sleep study!  It'll be interesting to see how
> it differs with adults--I wonder what masks they'll try on her.
>
> I wish I had more helpful info....Sorry!
>
>  Loren (wife to Kraig, mom to Keren, T18, two years old (9/27/02))
> Southeast Michigan
> http://webpages.eng.wayne.edu/~ad6075
>
> On Wednesday, December 15, 2004, at 10:11 AM, Jennifer Vanderbeek wrote:
>
>> Loren,
>>
>> What kind of mask does Keren wear?  We have been struggling with
>> Elanor's
>> for a while.  She cries when we put the mask on her when awake, when
>> we put
>> the mask on her when she's asleep, she wakes up.  She has a cleft
>> palate,
>> and breathes with her mouth open, so we need a mask to cover her mouth
>> and
>> nose.  Right now we are using an adult nasal mask.  Her chin is so
>> small, we
>> have to strap it pretty tight on her face.  I'm worried about having
>> it on
>> too tight, or make her too miserable.  We've gotten to just not using
>> it at
>> all.  We have an appointment with her sleep specialist next week.  Any
>> ideas?
>
>
>                  Building ___ooOOoo__ Rainbows
>                       www.trisomyonline.org
>                  Families Helping Families On-line
>
> 


                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

Other related posts: