update on frankie

frankiesmom said:
i think in frankies case, being deaf IS disabling to him..it is definitely making things more challenging for him. if he just had hearing issues though, pff..this wouldnt even be an issue.
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I guess what I'm trying to get across to you is that the hearing loss doesn't need to be an issue... There are ways to make his surroundings accesible to him... He can access language, just not in the way you are used to.
 
CSign said:
I guess what I'm trying to get across to you is that the hearing loss doesn't need to be an issue... There are ways to make his surroundings accesible to him... He can access language, just not in the way you are used to.
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if he can gain the mental capacity, sure he can! but even if he cant, i know he can/will adapt somehow.
 
well, the dr says that its highly unlikely, because he wouldve had coagulation problems at birth..good point i suppose! i guess i am just grasping at anything that seems like a remote possibility at this point. he DID tell me though that it is perfectly fine for him to cry it out at night..so we will be starting that fairly soon.
 
AliciaM said:
you're blood type doesn't ever change in your lifetime however some people are universal donors and some are universal receivers but that still doesn't change the coding for your blood just as a side note...but I would look into the RH-testing results and such because that CAN be a problem sometimes with diagnosing problems in babies and children
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Or somebody goofed with blood typing this time around and got two patients' blood mixed up. :dunno:
 
The other thing I wondered is if FrankiesMom ever had a large blood transfusion. I could be totally wrong in my thinking, but I thought I'd heard before that can be enough to change blood types and such. True or no?
 
AlleyCat said:
The other thing I wondered is if FrankiesMom ever had a large blood transfusion. I could be totally wrong in my thinking, but I thought I'd heard before that can be enough to change blood types and such. True or no?
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Dunno but that doesn't seem likely.
 
AlleyCat said:
The other thing I wondered is if FrankiesMom ever had a large blood transfusion. I could be totally wrong in my thinking, but I thought I'd heard before that can be enough to change blood types and such. True or no?
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What if the lab goofed? That would explain it.

If one had a bone marrow transplant, the blood type will switch to the donor's type.
 
I can't believe that an OB would 't perform a blood test. That's so elementary to the OB standard of medical care for a very long time. Is it possible that the OB performed the test but didn't point it out to you?
 
with frankie, they might have, i honestly dont remember. at any rate, it was just an unlikely guess..i just want something to fall in my lap and say "look, this is whats wrong!".
 
I wish that you could find the answers you want. Doctor suck at telling you about the tests they've done. They just say something like the blood work is fine.
 
The thing is, you may NEVER know exactly what caused his constellation of issues. What you may want to consider is looking at the greater picture... Does it REALLY matter what CAUSED this? Asking "why" questions can be SO draining. It may be more productive for you to concentrate on "What is.." and just go with what you know. You know he has delays. You know he has feeding issues. You know he has a hearing loss. Those things can be worked on, so he can have a comfortable life and THAT is what is important!

Sometimes, we waste time asking why when there really is no good answer to that question. I humbly ask you to concentrate on what is, and, maybe one day you'll know the why, but for now just place your energy into helping him the best way you can with what you know NOW.
 
She may be asking why, but it's clear that she is working on what can be done now (rather than before) and going forward.
 
Oceanbreeze said:
The thing is, you may NEVER know exactly what caused his constellation of issues. What you may want to consider is looking at the greater picture... Does it REALLY matter what CAUSED this? Asking "why" questions can be SO draining. It may be more productive for you to concentrate on "What is.." and just go with what you know. You know he has delays. You know he has feeding issues. You know he has a hearing loss. Those things can be worked on, so he can have a comfortable life and THAT is what is important!

Sometimes, we waste time asking why when there really is no good answer to that question. I humbly ask you to concentrate on what is, and, maybe one day you'll know the why, but for now just place your energy into helping him the best way you can with what you know NOW.
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I do somewhat agree with this, but on the other hand I think it might be good to know, simply b/c it's possible that the thing causing the mental handicap might be able to be treated somehow. In some cases it can be treated.
 
CSign said:
I am talking about the medical/educational perspective when I state, "multi-handicapped". I put the quotes around it because I don't particularly like it, but that is how it's classified.

I don't view deafness as a disability.

I was addressing the fact that there are others out there who have other things going on besides being deaf. I was letting Frankiesmom know that I've met a number of children in similar positions to Frankie; and that he, and she are not alone.
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Yes. Deafness alone or with relatively mild mental handicap isn't nessarily a disabilty. But I do think it is when there's severe multi issues going on, it can be a disabilty. I wish there was a term for kids who while they have lots of issues, aren't nessarily severe or profoundly affected. I have multiple issues too, and it can confuse people, since they think severe or multi= one of those kids who is deaf, blind, and has severe/profound mental handicap and about a billion medical problems.
 
deafdyke said:
I do somewhat agree with this, but on the other hand I think it might be good to know, simply b/c it's possible that the thing causing the mental handicap might be able to be treated somehow. In some cases it can be treated.
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OK. I take a slightly different view, but that's just me.
 
Or - the doctor could be sued, if it's really a blood compatibility issue and they didn't give you the appropriate shots, knowing your RH-negative status and your husband's positive status. That is the combination that is guaranteed to have compatibility issues in a pregnancy.
 
frankiesmom said:
also, his audiogram has him right on the borderline of profound/severe. even yet, he is definitely getting something from his hearing aids and that is what is important..i dont think even the implant would "fix" him, and i just cant put him through a painful surgery on the chance that it could, even a little bit.
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Oh, he could be like many of us here. I am profound/severe but I *feel* music and sounds. Frankie seems to *love* his music. Keep playing it and don't let those yahoo doctors tell you that he will *never* learn sign. Just because he isn't magically signing back to you does not mean that he isn't learning. It just might take awhile for him to reciprocate. One day he could just start signing. :)
 
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