update on frankie

[drphil]

From my understanding- Hearing Aids are the first consideration-does it help? If not then Cochlear Implant considered which are much more"expensive"( in comparison to a Hearing aid). What is one's ear condition re surgery?Specific facts again.

Implanted A B Harmony activated Aug/07

 

[drphil]

From my understanding- Hearing Aids are the first consideration-does it help? If not then Cochlear Implant considered which are much more"expensive"( in comparison to a Hearing aid). What is one's ear condition re surgery?Specific facts again.

Implanted A B Harmony activated Aug/07

 

[frankiesmom]

Well, you can't really "fire" Early Intervention- do you mean you signed a document that said you declined services for your son?

Also; if you guys had a nurse coming to check his weight, why would she even comment about his hearing loss? Has his audiologist even brought up the CI yet? Didn't Frankie just recently get his HA's? As mentioned many times on this forum, a CI isn't even considered until the person has had a reasonably extensive trial period with their HA's. I believe Grendel has posted the CI requirements in another thread. So, it seems like the CI is a moot point as of now, correct?

Is he benefitting from the use of his HA's?

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!!

 

[Smithtr]

From my understanding- Hearing Aids are the first consideration-does it help? If not then Cochlear Implant considered which are much more"expensive"( in comparison to a Hearing aid). What is one's ear condition re surgery?Specific facts again.

Implanted A B Harmony activated Aug/07

Please stop on silly comedy please careful on reading

 

[Bottesini]

Outcomes In Children With Developmental Delay And Deafness - Full Text View - ClinicalTrials.gov

They are actually doing a study on this now. It has been thought in the past that delayed children can't benefit from CI so it is not recommended to implant them.

You might consider showing this study to the people who are bothering you about it.

 

[frankiesmom]

i just might! even his audiologist says that right now, his hearing loss is secondary in terms of importance..she said that his other delays are in no way related to the hearing loss and to just focus on keeping him happy. and that has definitely become my full time job..he wakes up all night long, to either cry for his bottle or just because he wants his blanket put back on, or just because..and during the day, i field calls from all of his therapists and drs, and i try to play and interact with him as much as possible, and try to feed him baby food, which is not very easy..its a lot of work! i am so glad that my other kids are older..i wouldnt know what to do if i had younger kids and frankie to take care of.

 

[frankiesmom]

his genetic testing came back normal too, so at this point, it is what it is, and we might not ever find out why, but thats ok.

 

[jillio]

I wanted to take a minute just to tell you that I have spent the last 10 days studying under a remarkale man who is both a neuropsychiatrist and a neuropsychologist. He has done some unbelievable work with victims of various types of brain damage and developmental delays. I have set up communications with him and will let you know of anything I run across that may be of assistance to you and your darling boy.

 

[frankiesmom]

thank you!

 

[jillio]

thank you!

NP. I held the little guy in the back of my mind every time I had a discussion with this guy.

 

[CSign]

Please stop on silly comedy please careful on reading

I don't think Dr.Phil was trying to be silly, or make a joke. I think his point was that first a person must use hearing aids to see if they receive any benefit. Then, after it's determined that the person receives insignificant auditory benefit- then they would begin the process to see if they are even a candidate for a CI.

I don't believe Frankiesmom has mentioned what his audiogram looks like, but she did mention that he does seem to be receiving some auditory benefit. So, it seems to be up in the air whether or not he would even be a candidate for one.

 

[shel90]

Your little one is so cute and I hope you find the answers you needed. Seems like you are doing what it takes to get his needs met.

 

[whatdidyousay!]

i found them!!! i left them in the dehumidifying thing!
thank god..and this is after we accidentally left them at the drs office the day before yesterday..i dont even remember putting them in there but i guess i did. yay!
im doing ok..just very stressed, and pretty unhappy, to be honest..i was totally hoping that his delays were from being deaf...but it seems like every week brings a new issue that shows that its definitely not the cause. it just sucks ass, really. :/

You much be very stressed out by all you been through , I hope you have people to help you with Frankie. Could you get a visiting nurse you help with Frankie's care so you'll have a little time to get unstressed ? You do not want to get yourself too stressed out , take care of yourself too. to you and
Frankie.

 

[CSign]

Love the pic by the way- he is a cute little guy!

 

[CSign]

I agree about trying to find some "you" time- or at least take a couple hours each week where your only responsibility is doing something you enjoy. It's important.

 

[deafdyke]

i just might! even his audiologist says that right now, his hearing loss is secondary in terms of importance..she said that his other delays are in no way related to the hearing loss and to just focus on keeping him happy. and that has definitely become my full time job..he wakes up all night long, to either cry for his bottle or just because he wants his blanket put back on, or just because..and during the day, i field calls from all of his therapists and drs, and i try to play and interact with him as much as possible, and try to feed him baby food, which is not very easy..its a lot of work! i am so glad that my other kids are older..i wouldnt know what to do if i had younger kids and frankie to take care of.

Oh I feel for you!!!! Hopefully he will progress a bit more.I think it's still a bit too early to accurately tell how he'll end up in terms of functioning. It can be very intense trying to take care of a kid with significent delays....

 

[deafdyke]

his genetic testing came back normal too, so at this point, it is what it is, and we might not ever find out why, but thats ok.

Quick question.......did they do a complete analysis or did they just scan for the most common things? I know you're now " It is what it is"....and that's a really good attitude to have. I mean god after some of the parents I know who obess over why their kid is mildly hoh or have another mild health problem, your attitude is rather refreshing. However, I'm also remembering that you have said that the docs you've seen have said he doesn't seem to "match" a lot of things. That usually points to something really rare/genetic. Have you been to a really good university hospital or a really good Children's Hospital? I'm wondering if you have the type of kid who would befuddle the docs in Boston, or if you took him to Boston, they might say " Oh he has this!" I know for example, they've found that seven percent of kids with autism actually have micochondrial dysfunction, and when they're treated some of them make profound improvement.
I also know offhand of kids with multiple weird issues who turned out to have all kinds of weird genetic issues that were missed, due to the fact that they weren't screened or whatever....or they had a syndrome or something that wasn't detectable by ordinary chromosome analysis.

 

[Sunshine]

I have same sign my street when I small!

 

[frankiesmom]

Quick question.......did they do a complete analysis or did they just scan for the most common things? I know you're now " It is what it is"....and that's a really good attitude to have. I mean god after some of the parents I know who obess over why their kid is mildly hoh or have another mild health problem, your attitude is rather refreshing. However, I'm also remembering that you have said that the docs you've seen have said he doesn't seem to "match" a lot of things. That usually points to something really rare/genetic. Have you been to a really good university hospital or a really good Children's Hospital? I'm wondering if you have the type of kid who would befuddle the docs in Boston, or if you took him to Boston, they might say " Oh he has this!" I know for example, they've found that seven percent of kids with autism actually have micochondrial dysfunction, and when they're treated some of them make profound improvement.
I also know offhand of kids with multiple weird issues who turned out to have all kinds of weird genetic issues that were missed, due to the fact that they weren't screened or whatever....or they had a syndrome or something that wasn't detectable by ordinary chromosome analysis.

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.

 

[frankiesmom]

I agree about trying to find some "you" time- or at least take a couple hours each week where your only responsibility is doing something you enjoy. It's important.

i LIVE for sundays. my husband carts me wherever i want to go, be it the bookstore or fabric store. i am very lucky!!
as for having someone help..i am no good at that..i am so picky about my little ones..my teenagers? take them, PLEASE!! but my little frankie? noo. i dont share him with anyone!