update on frankie

frankiesmom said:
right, i am O negative, and he is B positive. we had that confirmed with the first children.
they tested both of us. were blood tests less reliable in the early to mid 90s?
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I wouldn't think they were less reliable then. But, next time you're at your doctor, ask to have that test re run.
 
frankiesmom said:
also, i am lucky enough not to be going alone at this..my husband works all day, and then helps me with frankie as much as possible..we talk endlessly about ways to help him and things we can do for him..if i didnt have my husband, i would absolutely lose it.
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By going it alone, I didn't mean that you didn't have support from family. I meant professional support such as a developmental pediatrician, OT, ect..

Do what you think is best, but please don't exclude the advise of professionals. If they are offered to you, please at least, give them a shot.
 
again, frank has a TON of professionals trying to help his cute little butt..he has his regular dr, his referral nurse, who makes sure he gets all the appointments/prescriptions he needs, his feeding therapist, his nutritionist, his occupational therapist and his soon to be neurologist, and he also has a developmental pediatrician..which is why im so exhausted..all i do is go to the doctor these days..and also his audiologist, who i have to call tomorrow because these weird ear molds they made him do NOT fit at all.
 
on tuesday, he has 3 appointments alone, and the he has some on friday...it never ends it seems!
 
frankiesmom said:
again, frank has a TON of professionals trying to help his cute little butt..he has his regular dr, his referral nurse, who makes sure he gets all the appointments/prescriptions he needs, his feeding therapist, his nutritionist, his occupational therapist and his soon to be neurologist, and he also has a developmental pediatrician..which is why im so exhausted..all i do is go to the doctor these days..and also his audiologist, who i have to call tomorrow because these weird ear molds they made him do NOT fit at all.
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Sounds like he's covered. :)
 
just a bit..and they are all dying to know the cause of this as well, i found out. i called about something or other last week and a nurse that i have never even talked to asked if we had heard back from genetics, because she and the other nurses were wondering if that was what was wrong with him! i think its the hair. people see the curly hair sticking out in all directions and just lose it. (at least i do)
 
I've been in shoes similar to yours. My son has a complicated medical history. While he doesn't have any cognitive challenges, he has his array of specialists. The early years are the most challenging, in a sense. Over time, as pieces of the puzzle start fitting together it all comes into place. There will always be appointments, but it is sort of an ebb and flow (sp?). There are peaks and valleys throughout the journey, but the time of consistency and equilibrium will come. You just have to fight the good fight, and keep your chin up with your eyes on the prize.

It will get better- I promise.
 
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i hope to god it does because to be honest, i am in the absolute depths of despair..i worry about what will happen when i am gone.. i have worked in nursing homes, and homes for people like frank, and its not pretty. it kills me to think that someone could be mean to my francis, but its a reality, it happens. but this is the hardest thing ever..when i first came here, i was trying my hardest to pretend that once he got his hearing aids, he was going to be fine..even though deep down, i knew it wasnt true.
but the absolute HARDEST thing ever about this? i have 6 other kids who need me. my oldest finally graduated navy boot camp the other day and is at submarine school..he called me and i realized that he had left before all of this had really went down..so he was floored as much as anyone would be when we told him..and then there are school projects to help with, along with homework, sibling fights, kids who wont clean their room, or wont go to bed, or their friends wont ever go home..all of this plus frank, its almost too much for me. sorry! i hate rambling like i do, i know that alldeaf wasnt created solely as a means to console me every evening! blah. but seriously, this sucks.
 
frankiesmom said:
i hope to god it does because to be honest, i am in the absolute depths of despair..i worry about what will happen when i am gone.. i have worked in nursing homes, and homes for people like frank, and its not pretty. it kills me to think that someone could be mean to my francis, but its a reality, it happens. but this is the hardest thing ever..when i first came here, i was trying my hardest to pretend that once he got his hearing aids, he was going to be fine..even though deep down, i knew it wasnt true.
but the absolute HARDEST thing ever about this? i have 6 other kids who need me. my oldest finally graduated navy boot camp the other day and is at submarine school..he called me and i realized that he had left before all of this had really went down..so he was floored as much as anyone would be when we told him..and then there are school projects to help with, along with homework, sibling fights, kids who wont clean their room, or wont go to bed, or their friends wont ever go home..all of this plus frank, its almost too much for me. sorry! i hate rambling like i do, i know that alldeaf wasnt created solely as a means to console me every evening! blah. but seriously, this sucks.
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Maye not but if it helps you feel better.. Have at it! :)
 
it DOES make me feel better! it beats throwing stuff at my idiot neighbor! well, not really but its legal! :D
 
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
 
they didnt even test me with frank, or my last 2 before him...i am definitely asking tomorrow because at least this would make some sense. because i cant find a single thing that could be the cause of this..i have researched this for months now and we have had tons of tests..and nothing. i know it just happens, but how often is a kid deaf and mentally retarded for no reason whatsoever? it just cant be that common.
 
hey, it beats the "dickface" sign i made for him a couple of years ago...(my husband made me take it down though)
 
I've developed relationships with a number of children and their families where the child is "multi-handicapped". For example deafness/autism and deafness/Down Sundrome etc. Given that deafness is a low incidence "disability" chances are you aren't going to run into a person who is deaf on a regular basis unless you're in a community with a large deaf population. Following that line of thinking, it's even less common to run into a person or child with deafness and a secondary disability.

So no, it's not super common. But there are many people like Frankie who exist in this world and grow to become adults who contribute to society. Sure, they may contribute in different ways, but they contribute nonetheless.

Try to focus on the things you have control over, and slowly work your way up the ladder. Two things you have complete control over at this point are providing him with access to language through sign, and ensuring that he is getting the nutrition he needs to allow his body (and brain) to continue developing accordingly. You do have some control. Embrace it, and know that slowly but surely you'll be able to add to the list of ways you can enable Frankie to make progress. You have to have faith in him. You have to have faith in yourself. You can do it. He can too. You just have to give it time.
 
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CSign said:
I've developed relationships with a number of children and their families where the child is "multi-handicapped". For example deafness/autism and deafness/Down Sundrome etc. Given that deafness is a low incidence "disability" chances are you aren't going to run into a person who is deaf on a regular basis unless you're in a community with a large deaf population. Following that line of thinking, it's even less common to run into a person or child with deafness and a secondary disability.

So no, it's not super common. But there are many people like Frankie who exist in this world and grow to become adults who contribute to society. Sure, they may contribute in different ways, but they contribute nonetheless.

Try to focus on the things you have control over, and slowly work your way up the ladder. Two things you have complete control over at this point are providing him with access to language through sign, and ensuring that he is getting the nutrition he needs to allow his body (and brain) to continue developing accordingly. You do have some control. Embrace it, and know that slowly but surely you'll be able to add to the list of ways you can enable Frankie to make progress. You have to have faith in him. You have to have faith in yourself. You can do it. He can too. You just have to give it time.
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Just a heads up: You correlated deafness to these words: handicap and disability.
 
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.
 
frankiesmom said:
they didnt even test me with frank, or my last 2 before him...i am definitely asking tomorrow because at least this would make some sense. because i cant find a single thing that could be the cause of this..i have researched this for months now and we have had tons of tests..and nothing. i know it just happens, but how often is a kid deaf and mentally retarded for no reason whatsoever? it just cant be that common.
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I'm with you! Especially since you say he has a bunch of other things. I would contact the Oklahoma School for the Deaf, and see if maybe they might be able to point you towards some answers. They may also be able to give you some info and resources about dhh multihandicapped kids. I hear you. I can't remmy if I've mentioend this, but I have a syndrome that can and does cause mental handicap. I wasn't told by the docs that I had it, until I was 16!?!?!
 
posts from hell said:
Just a heads up: You correlated deafness to these words: handicap and disability.
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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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