[tri-med] Re: A little-Oops! I mean long!- Keren note :)

On Wednesday, October 29, 2003, at 06:41 AM, Michelle Waite wrote:
>
>> .  Oh yeah, she's been more congested lately
>> and so obstructing more again--c-pap, here we come!
>
> How do you feel about that Loren?

I really don't mind using the c-pap as long as Keren puts up with it.  
She's been really good about it overall, but this past week she's been 
so congested that using the c-pap actually is more difficult (the air 
doesn't go through the nose and/or dries things out so she sounds more 
congested--irony is we even have a humidified c-pap).  Last night we 
just took it off her 'cause she breathed better without it--snored like 
mad, but her oxygen sats were good, so I figured she could handle a 
night of some obstruction....  We ran her room humidifier, too, and I 
think that helped a little.  I haven't completely decided why she's so 
congested--it's not a cold, but it could be the weather, or fall 
allergies, or because she's teething like mad at the moment.  Who 
knows!!!!

>
> It's all part of the recurrent grief/chronic grief cycle of being the 
> parent
> of a child with special needs. It never goes away.......even while we 
> love
> and accept our child--even when  we are grateful for our children's
> accomplishments etc.
>  Dare I say it's a "normal" feeling?

Yep, I think you're right!

>
>> We're also going to have another, more thorough ABR
>> done under anesthesia this time (last time we did it she obstructed 
>> too
>> much and we couldn't get all the info).  I'm not thrilled about that,
>> but the good thing is we'll also have a CT scan done on her ears to 
>> get
>> a better picture of there structure.  Her ENT is really on top of
>> things and I'm pretty confident in his take.
>
> Sounds scary. What do they plan to do with the information?

I think I must be extremely laid back or in total denial, but I'm not 
too worried about the anesthesia.  Maybe it's cause we've done it a lot 
already and she's always done well?  I guess it's just another thing I 
put totally in God's hands and he's giving me the peace I need.

The info they get regarding her ears and hearing will determine if her 
hearing loss is due to a physical impediment which can be fixed, or if 
it's a nerve problem which can only be worked around (ie with 
amplification or just therapy).  Yesterday I got to meet with the two 
primary special ed hearing helps from this county and look at 
possibilities in therapy.  For now, until we have more info, the total 
communications therapist will come out and show me some basic signs and 
stuff I can use with Keren.  I figure we can't go wrong with learning 
signs no matter what we find out with her hearing.  I was encouraged by 
them yesterday as they watched Keren and my interaction with her.  
"Basically what you're doing now is what she needs most," they said.  
Now how's that for an ego booster :) ?

I'll keep you posted!

Loren (wife to Kraig, mom to Keren, T18, 13 mo. and counting! :) )
Southeast Michigan
http://webpages.eng.wayne.edu/~ad6075


                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
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