update on frankie

frankiesmom said:
they did the micro array and a fragile x test, and then want us to come back in 6 months..i talked to another lady and it makes more sense now..apparently, the first test is to look for the more common genetic issues, and the second sort of delves into less common things.
i honestly dont know what is wrong with him..and i feel kind of..like a jerk now for saying he looks like he has a genetic defect!! one thing that has been interesting has been his ability to sit up straight..he can walk, and shove his stroller around, but if he is sitting..he flops forward,backwards,sideways, its as if he cannot sit up on his own, and that has worsened. it really is strange! yesterday, i let him stand with me while i talked to a neighbor and he fell forward and hit his face, but he didnt try to keep himself from falling, he just let go. and that is what he always does. makes no sense to me.
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Oh, did they give you the info from the micro array test yet?
 
yep, nothing came up!

i just worry..i have read the statistics that children from lower income homes tend to be more at risk for delays, and i worry that people might think his delays are environmental, which is totally not true. and then still yet, in the back of my mind i wonder if i have done quite enough for him, as much as say someone with a more affluent background could have done? which is silly, but still.
 
frankiesmom said:
yep, nothing came up!

i just worry..i have read the statistics that children from lower income homes tend to be more at risk for delays, and i worry that people might think his delays are environmental, which is totally not true. and then still yet, in the back of my mind i wonder if i have done quite enough for him, as much as say someone with a more affluent background could have done? which is silly, but still.
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There is nothing that you have done, that "made" Frankie that way. He is exactly the way he is supposed to be- challenges and all. There is a reason for it, and while you may not see the message now- it will be clear one day. There is a purpose.

Just make sure you continue loving him; playing and interacting with him, encouraging him, and signing with him. The signing is one of the more critical things for this little guy- he needs to be able to communicate. Even though expressively you aren't seeing him sign right now that doesn't mean he isn't retaining and understanding it's meaning.

It may take him longer than your "typical" DHH child to expressively communicate, but he will get there in time. When you're talking to him, try to incorporate whatever signs you know as much as possible.

Continue building on your vocabulary, be consistent with it's use and soon it will be second nature. You will see the benefits- it will just take time and commitment.

P.S. Changed my sons g-tube last night- thought of you ;-)

It's fun!! Similar to a science experiment!! Good luck when you do it for the first time- it's not as bad as it seems.
 
frankiesmom said:
yep, nothing came up!

i just worry..i have read the statistics that children from lower income homes tend to be more at risk for delays, and i worry that people might think his delays are environmental, which is totally not true. and then still yet, in the back of my mind i wonder if i have done quite enough for him, as much as say someone with a more affluent background could have done? which is silly, but still.
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Look my parents wasted* in range of $200+ on therapy a week on top of school based therapy and i HATE them for it

so not being able to come up with $$$ might be good thing

*my option
 
oooooo.....frankiesmom, it's too bad that you guys aren't in MA. We have a school specificly for Dhh kids with multiple issues that also incorparates augmentive and alternative communcation. But yes I agree with CSign......it's more then likely he understands more then he can express...and who knows?
 
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.
 
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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I also believe that generally speaking, children with developmental disabilities shouldn't be implanted. I've seen a few cases where they were, and in those cases it did more harm than good.

As long as you are consistently signing, that doesn't need to be on your radar.
 
well, his audiologist isnt even sure if he will learn sign language, at least for several years, and that honestly is ok too. i just dont think it would do much good because he can hear with his hearing aids, but to get his attention, i have to crank whatever hes watching/listening to full volume for him to notice..i just dont think he would get the full benefit from it and it would just confuse and scare him. i just cant believe what a big deal it is..even from people that dont even have kids with hearing loss or anything going on..busybodies. also, one of my asshole neighbors last night made a dig at him..i guess she doesnt like the new signs. we were sitting outside, and some guy drove by, so she stood up and yelled as loud as she could "slooow down!!" and looked over at us..pff. shes always had an attitude..takes a big woman to pick on a disabled kid i guess!
 
She was yelling at the driver to slow down? That's a good thing, right? I'm not understanding how that's a dig at Frankie - sounds more like she's trying to look out for him. Unless I'm not getting something about the context of her yellling at the driver.
 
Frankiesmom- I posed a question earlier that may have been missed in the midst of the post. Did you sign a document declining services for Frankie?
 
frankiesmom said:
yep, he LOVES music..he still hasnt learned any signs but he does enjoy hearing baby songs and stuff, so that is something, right? he has also learned what "no" means..if hes messing with something, and i tell him no..he stops!
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That is very good he know what "no" means and that he like music. Maybe you could try singing to him about what you're doing when you're doing things around the house. And trying signing the words to a song you made up about eating etc,.
 
frankiesmom said:
i fired early intervention weeks ago..i could never get ahold of them! that and they were inept at even making basic appointments, or even showing up.
he also had a home health nurse that was coming out weekly to see how much he weighed, but i had her stop coming because she was pressuring the hell out me about the cochlear implant..telling me that it would make him hear 100 percent and i just HAD to do it, blah blah blah..that is one thing i am tired of, the insinuation that i am a bad parent because im not going that route. that is the first question anyone asks me when they find out about his hearing loss.
"oh, so are you getting the implant then?"
:roll:

i will say though, that sometimes it doesnt seem like he has progressed at all, but you can tell that he has somewhat, with his hearing aids. and i am glad for that.
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That nurse sound awful insensitive to what people are going through! Couldn't she see you're stresses out and did not need to be told how to raise your child! It would a not be a good time for you son to get implant when he trying to put weight on , I know you know that but the busy bodies are not helping you at all. I am sorry to hear you have to put up people like that on top everything! And you're a wonderful mother!!
 
frankiesmom said:
yep, nothing came up!

i just worry..i have read the statistics that children from lower income homes tend to be more at risk for delays, and i worry that people might think his delays are environmental, which is totally not true. and then still yet, in the back of my mind i wonder if i have done quite enough for him, as much as say someone with a more affluent background could have done? which is silly, but still.
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Look at how rich the Kennedy famliy is and they had mentally challenged daughter. My sister is not poor and she had a daughter that had delay in learning. I think kids from poor family may be going to school very hungry and not able to study very good, then the kids get label as 'slow'!
 
Beach girl said:
She was yelling at the driver to slow down? That's a good thing, right? I'm not understanding how that's a dig at Frankie - sounds more like she's trying to look out for him. Unless I'm not getting something about the context of her yellling at the driver.
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oh no, this lady is pure attitude anyways, and she lets her dog crap in my yard. no, there is no neighborly love going on over here! :lol:

as for signing anything declining services, no i called this ladys supervisor and told her that i didnt want their services anymore because the person that was supposed to help us was unreliable, hard to reach, and to be honest..i have done a way better job myself in locating resources anyways.
:giggle:

i know i mentioned this before..but the sleepsafe bed company donated a bed to frankie, after i wrote them about his issues..and its shipping out this week!!! i cant wait! it even has a built in iv pole for his feeding tube, and its electric so i can raise/lower it, plus it is padded on all sides. i am so thankful for that!!
 
frankiesmom said:
oh no, this lady is pure attitude anyways, and she lets her dog crap in my yard. no, there is no neighborly love going on over here! :lol:

as for signing anything declining services, no i called this ladys supervisor and told her that i didnt want their services anymore because the person that was supposed to help us was unreliable, hard to reach, and to be honest..i have done a way better job myself in locating resources anyways.
:giggle:

i know i mentioned this before..but the sleepsafe bed company donated a bed to frankie, after i wrote them about his issues..and its shipping out this week!!! i cant wait! it even has a built in iv pole for his feeding tube, and its electric so i can raise/lower it, plus it is padded on all sides. i am so thankful for that!!
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That is great news about the bed for Frankie, there are people that do care and want to help you and Frankie and that what you should think of ,try not to let other people get to you, it will only drain previous energy out of you, and you all your energy for Frankie , yourself and famliy .
 
frankiesmom said:
oh no, this lady is pure attitude anyways, and she lets her dog crap in my yard. no, there is no neighborly love going on over here! :lol:

as for signing anything declining services, no i called this ladys supervisor and told her that i didnt want their services anymore because the person that was supposed to help us was unreliable, hard to reach, and to be honest..i have done a way better job myself in locating resources anyways.
:giggle:

i know i mentioned this before..but the sleepsafe bed company donated a bed to frankie, after i wrote them about his issues..and its shipping out this week!!! i cant wait! it even has a built in iv pole for his feeding tube, and its electric so i can raise/lower it, plus it is padded on all sides. i am so thankful for that!!
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Wonderful!! It better be in all good hand.
 
inmate23 said:
Look my parents wasted* in range of $200+ on therapy a week on top of school based therapy and i HATE them for it

so not being able to come up with $$$ might be good thing

*my option
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Really your parents with together you?
 
frankiesmom said:
he is benefiting, i think. granted, he doesnt have the fine motor skills needed nor the understanding to learn sign language yet, but he is enjoying music and kid videos, and he is also more vocal, at least to himself. and the nurse mentioning that? i think because everyone and their brother seems to think its their place to ask about it..and when i say we arent going to do it, it turns into some sort of pressuring contest. his audiologist has dropped the subject for now, but even she was bringing it up a lot. i say that if he is getting something out of these, why not just stick with what works??
i think that since he has medicaid, they will pay for it sooner rather than later, but no..the feeding tube surgery was bad enough, at least for me..and im not going to make him go through surgery for something that might not even work, or even help him. he is happy now.
that aside, we got his sign today!!

frankiesign.jpg
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LOL love that sign! that's something I would have hanging over my bedroom wall :D
 
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