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Unread 09-14-2011, 11:38 AM   #1
frankiesmom
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update on frankie

well, the surgery went great..but i feel so guilty! he looks pitiful when he is attached to his feeding tube/iv pole thing. it is helping though..he is sleeping through the night more and is overall more content.
right now i am in a frantic search for his hearing aids because i cant remember where i put them!!!
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Unread 09-14-2011, 11:39 AM   #2
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Thanks for the update. Hugs to you all
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Unread 09-14-2011, 11:42 AM   #3
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People just wonder about Frankie! Thanks update! Glad hear he well
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Unread 09-14-2011, 12:01 PM   #4
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so happy to see that he is doing well... feeding tubes are not easy for anyone, but at least he is getting the nutrition he needs!
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Unread 09-14-2011, 12:08 PM   #5
frankiesmom
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i just hope i can find his damn hearing aids..i seriously cant remember where i put them!! and without them, he cant hear his baby music
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Unread 09-14-2011, 12:11 PM   #6
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I hope you can find them... my suggestions for searching (you may have already looked in most of these places) his diaper bag, look by his bed, under his bed, on the changing table, under and behind it, in the living room (look under furniture) and... in the freezer... (i know its weird... but sometimes it works)
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Unread 09-14-2011, 12:21 PM   #7
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Tell other kids $5 to whomever find HAs first. Kids find anything especially motivate money!!!
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Unread 09-14-2011, 12:26 PM   #8
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hope he's feeling much better. also hope you ll find his hearing aid. maybe it is in his bed or toy room??? also hope you are doing well.
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Unread 09-14-2011, 12:42 PM   #9
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Tell other kids $5 to whomever find HAs first. Kids find anything especially motivate money!!!
Good idea!
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Unread 09-14-2011, 12:42 PM   #10
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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. :/
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Unread 09-14-2011, 02:11 PM   #11
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Aw. Hugs to you! And I'm so glad you found the aids in the dehumidifier.

I am the sort of struggling housekeeper who has to have a place for things, or I'll forget where I put them. So my keys (separate sets of house keys and car keys, ALWAYS go on the key rack holder thingie by the door; reusable grocery bags on a big hook in the closet, hearing aids in dehumidifier if not in my ears. Looks like you automatically did that too, and thankfully, saved you the stress of really losing them!

So hold on to your sanity, girl. You obviously have some coping mechanisms in place that you weren't even aware of.

You've got a long road ahead, for sure, but day by day, one foot in front of the other, you have come such a long way over the last few months in figuring out Frankie's problems and what you can do about them. Congrats to you for that, and I'm sure you'll keep on doing that as the days and weeks roll on. You don't have to figure it out all at once - one day at a time, and you'll keep finding what you need.
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Unread 09-14-2011, 02:35 PM   #12
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Big hugs to you. Hang in there, mama.
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Unread 09-14-2011, 03:15 PM   #13
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i found them!!! i left them in the dehumidifying thing!
And I was going to say look in the last place you'd expect to find them...but you should have looked in the first place you'd expect to find them.
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Unread 09-14-2011, 03:45 PM   #14
ash345
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And I was going to say look in the last place you'd expect to find them...but you should have looked in the first place you'd expect to find them.
haha! thats why i recommended the freezer.
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Unread 09-14-2011, 06:49 PM   #15
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Tell other kids $5 to whomever find HAs first. Kids find anything especially motivate money!!!
that is great sound
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Unread 09-14-2011, 07:08 PM   #16
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well, the surgery went great..but i feel so guilty! he looks pitiful when he is attached to his feeding tube/iv pole thing. it is helping though..he is sleeping through the night more and is overall more content.
right now i am in a frantic search for his hearing aids because i cant remember where i put them!!!
Thank you for taking the time out of your busy schedule to keep us updated. He will soon adjust to the changes he is currently experiencing, but it is a mother's nature to feel guilty about anything that disrupts our child's constancy.
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Unread 09-14-2011, 07:48 PM   #17
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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. :/
Hey, I'm glad ot hear from you about also a little sad at the news you hve to bear to us. I hope you get some relief from all the stress you have.
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Unread 09-14-2011, 07:49 PM   #18
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Originally Posted by frankiesmom View Post
well, the surgery went great..but i feel so guilty! he looks pitiful when he is attached to his feeding tube/iv pole thing. it is helping though..he is sleeping through the night more and is overall more content.
right now i am in a frantic search for his hearing aids because i cant remember where i put them!!!
Glad you found them!
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Unread 09-15-2011, 06:03 PM   #19
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that's good! and I never lose my hearing aids since my beige *old* and my new purple ones are easy 2 spot
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Unread 09-15-2011, 07:22 PM   #20
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Quote:
Originally Posted by frankiesmom View Post
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. :/
Ah, the syndrome "another problem?" sort of thing. I feel for you. But he is progressiving with HA right? It's also somewhat possible that if he is diganosed with a syndrome, there might be a treatment for the cognitive issues. It's also possible he will do more and accomplish more then you could ever think.
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Unread 09-16-2011, 04:22 PM   #21
frankiesmom
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he is doing about the same, and that is good because i personally think he hears more than they think, or else hes adapted pretty well. he doesnt really respond to us talking to him but he does enjoy music.
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Unread 09-16-2011, 04:23 PM   #22
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he is doing about the same, and that is good because i personally think he hears more than they think, or else hes adapted pretty well. he doesnt really respond to us talking to him but he does enjoy music.
that is good! great he is pretty hear can enjoy!
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Unread 09-17-2011, 11:07 AM   #23
frankiesmom
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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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Unread 09-17-2011, 11:12 AM   #24
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What a good kid. Glad that he's enjoying himself.
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Unread 09-17-2011, 01:49 PM   #25
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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. :/
Hang in there Mumma. I am not religious now but my upbringing left one thing with me. We are *never* given anything that we cannot handle even if it seems like we can't at the time. People come into our lives for a reason. To teach us something about ourselves. Frankie has come into your life for a reason, too.

You are a strong, capable and loving, loving mother!

Frankie is a gift to you. He is a beautiful boy who is much loved by his family. That is obvious.

Try to imagine what your life would look like without him and I think you would feel hole in heart at the thought. My two youngest were *BIG* surprises to me but I would never, ever change that.

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Unread 09-17-2011, 01:52 PM   #26
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Thank you for taking the time out of your busy schedule to keep us updated. He will soon adjust to the changes he is currently experiencing, but it is a mother's nature to feel guilty about anything that disrupts our child's constancy.
As soon as children are born they come with built in 'Mum guilt-o-meter.'

I never used to feel guilty about too much until I have kids.
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Unread 09-17-2011, 01:53 PM   #27
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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!
Small victories to some are huge victories to others.
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Unread 09-17-2011, 02:13 PM   #28
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You all are in my thoughts. I am glad he is doing better with the tube. He is sleeping more and now you found his hearing aids so he can enjoy the music. The small things in life is what makes it all better.
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Unread 09-17-2011, 06:00 PM   #29
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thanks! now i do have a question..i remember back when we were going to send him to the deaf preschool, they mentioned an fm system..i havent thought much about it since but i wonder if we had one, if he would hear me talk more clearly? i know he can hear, and i just bet if he could hear a tiny bit better, it would help him immensely.
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Unread 09-17-2011, 06:01 PM   #30
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thanks! now i do have a question..i remember back when we were going to send him to the deaf preschool, they mentioned an fm system..i havent thought much about it since but i wonder if we had one, if he would hear me talk more clearly? i know he can hear, and i just bet if he could hear a tiny bit better, it would help him immensely.
Yes he would.
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