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Post by MaggiesMom on Jun 16, 2004 23:29:40 GMT -5
There's a good feeding group on Yahoo that could be able to answer your questions. I know I've seen questions like that before.
feeding@yahoogroups.com
There's also a feeding_g-tube@yahoo.com But I'm not 100% on the exact name. You can type feeding and g-tubes in a yahoo groups search and it will find it.
Good luck!
Robin M - Maggie's mom
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Post by MaggiesMom on Jun 16, 2004 23:39:44 GMT -5
feeding@yahoogroups.com is a good group to help with feeding problems.
Maggie was NG fed for 5 weeks after birth. We still have lots of feeding issues, but she is eating well and maintaing a good weight.
Take care.
Robin M - maggie's mom
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Post by MaggiesMom on Jun 15, 2004 22:50:13 GMT -5
As they say when weird things happen....Do do do do!!!
Hope it all goes well. I'm sure Kevin will be one loved little boy, no matter who gets to take him home.
Keep us posted.
Robin M - Maggie's mom
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Post by MaggiesMom on Jun 14, 2004 23:31:27 GMT -5
We use them. They are superb compared to the DAFO's our local orthopedics place made! They aren't outgrown as quickly, more flexible and no complaints about wearing them. I think the juries still out on whether they are supposed to do any good. But they made a difference in Maggie's balance! I count that as a good thing. Let us know what you decide. Robin M
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Cups?
Jun 14, 2004 23:29:09 GMT -5
Post by MaggiesMom on Jun 14, 2004 23:29:09 GMT -5
we use clear open cups that I buy from Walmart. 2 in a set for $1.00 Easy to see the liquid moving and know when it's coming out.
The cups we use for traveling etc. are the First Years disposables from Toys R Us. They are pretty spill proof. It takes a lot of shaking and tipping to get anything out. Trust me, Maggie's tried it all!
We gave up sippy's for speech/oral motor issues 2 weeks ago. Other than the little fuss I got the 1st day, there hasn't been a protest since.
On the other hand, I have whinned several times about having to be more delegent about watching her drink to keep the mess managable.
Good luck!
Robin M - Maggie's mom
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Post by MaggiesMom on Jun 14, 2004 14:42:18 GMT -5
Hey...I forgot to mention that our feeding therapist told us not to even think about self feeding until we dealt with the chewing and sensory issues associated with her food.
So we purposely havent' pushed the self feeding stuff. what does your therapist say?
Robin M
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Post by MaggiesMom on Jun 13, 2004 23:44:28 GMT -5
Laura,
So glad to hear that Ethan is still making progress with his feeding.
Maggie is a mirror image of Ethan except she still doesn't do any chewing! UGH!!!
She has her oatmeal every morning with a little pear or peach baby food mixed in for flavor. She eats almost anything that is presented in her bowls, with her spoons, and is chopped up in very small, (mashed almost) pieces. I still use my hand chopper to do meats. Everything else is usually fork mashed.
We have to do most of the feeding. But I'm with you, it's time to get moving in a new direction! Back to food boot camp! It worked for getting her off the sippy cup in one day and introducing new foods. (I'm a softie by the way, so I say that tongue in cheek!)
She still prefers to have half a small jar of baby food on the side to help the "big girl food" slide down. I have found that small sips of juice help keep her from packing the food in her mouth. She stuggles in moving it around and down.
But, we are glad she's come a long way in 6 months. I just hope she continues to make progress. She's kind of platuaed her lately and I want to get back on track. \
I found that the disposable cups with straws that Toys R Us sales are almost air tight! They are great for carrying around without making much mess. Maggie still has a tendecy to tip them up like a sippy cup, and they don't leak! I'm thinking it's First Years brand. But I'm not sure. They have a whole line of cups, utensils, etc that are primary colored plastic that says "disposable". But I have used them a 100 times and they are still going strong.
Take care. Let me know if you have any good ideas. I could use some!
Robin M - Maggie's mom
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Post by MaggiesMom on Jun 13, 2004 23:20:05 GMT -5
I think I'd ask to see her credentials and see what century she got her SPED degree!!! LOL I can't imagine some being that ignorant of current "politically correct" terminology and being in the school system. Then again...
I have a dear friend who is a lead teacher in a SPED program. She constantly makes comments about "Down's Kids" and who functions at what level. She's also the one who complains constantly about her honor roll children who have "problems" in school. Ugh! I know everyone family has issues to deal with, but sometimes I want to scream..."Get a clue!"
Personally, I couldn't put my child in the type of situation you described. Knowing that managers usually hire "like minded" people is enough to know that there's more where she came from. I don't want someone being condescending to my child all day. I want support and challenges to meet expectations.
I know you'll figure out the best thing for Pagie. But I'm a firm believer that you should ALWAYS listen to that little voice in your head! It's there for a reason.
Take care.
Robin M - Maggie's mom
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Post by MaggiesMom on Jun 13, 2004 23:58:53 GMT -5
jmom, Haven't heard from you. Information overload? Robin M- Maggie's mom
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Post by MaggiesMom on Jun 11, 2004 23:26:18 GMT -5
Dear JMom, So glad you found UNOMAS 21! Isn't it great?!!! Welcome! Can't wait to hear more about your family. MY daughter Maggie is 3, has DS and has profound (left) and moderate/severe hearing loss in her right ear. She wears digital hearing aids and has done fine. I'm going to give you a list of websites that I have found very helpful. Please drop my a message on UNOMAS and I'll get you my email. We can chat about all the fun stuff! To do that, you click on my highlighted name to the left of my post, it will go to my "personal page" at UNOMAS 21. Go to the bottom where it says, leave this member a message, and go from there. I'll try sending you one. Look at the very top of the page when you log on to the Bulletin Board and you should see..."Hey jmom, you have 1 message and 1 is new." Click on the hightlighted "messages" and it will take you to it. Whew!! If you have any questions, just ask. Everyone here is very helpful! www.agbell.orgwww.listen-up.orgwww.beginningssvcs.com/communications_options/comm_options_chart.htmwww.auditory-verbal.org www.hearingexchange.comwww.justbekuz.comwww.jtc.org/index.htm (We are enrolled in their correspondence class - it's great! and easy!) www.missouriiojd.org/HIKE/ The Lion's Club is great about helping obtain hearing aids too. Hope that helps! Robin M - Maggie's mom
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Post by MaggiesMom on Jun 8, 2004 23:24:07 GMT -5
Congratulations on losing the NG tube! I know how exciting that is. Have you checked out the Yahoo feeding group? They have some great suggestions for kiddos learning how to eat "real" food.
If you have any questions about hearing tests, loss, aids etc. Just drop me a line. Maggie has had tubes since she was 18 months old. It really helped and thankfully, she hasn't had to have them replaced as they fell out.
Keep us posted.
Robin M - Maggie's mom
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Post by MaggiesMom on Jul 9, 2004 23:35:50 GMT -5
Hey! I got the first video today! I hope to get to it this weekend too.
Thanks for the information.
Robin M - Maggie's mom
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Post by MaggiesMom on Jun 8, 2004 23:43:30 GMT -5
Maggie has to be right up there with the King and Queens of throwing! We have sworn she will be an ace pitcher one day.
We tried it all, but two things seem to really work with her....
First, watch for being "done" and getting bored. Both are sure fire triggers for throwing at our house.
Second, we use a bucket during all therapy sessions so when she is "done" everything goes in the bucket or bag or whatever you want to use. It still lets them communicate that they are "done" without doing it obnoxiously. Maggie now claps for herself after tossing items in the bucket. Yeah!
She has gotten a lot better the past few months. But, I think it's been due to all of making a real effort to head it off before it happens. Especially during therapy.
She still doesn't feed herself and we took away that dreaded sippy cup two weeks ago...Yippeee! So now she has nothing to throw after she finishes eating or drinking. I'm sure hope that changes....as in I hope she starts feeding herself soon!
Take care.
Robin M - Maggie's mom
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Post by MaggiesMom on Jun 13, 2004 23:57:20 GMT -5
I can't believe that any lawyer in their right mind would pull out when presented with such an open and shut case!
But that's what I believe lawyers have to have before they go to trial. Sometimes that's good. You don't have to pay for services and lose if they don't think they can win. But, the down side to that...is how do we ever get anywhere in this world if all we do is go for the "sure thing?" Do I understand that they are saying that they will go to trail to address the obvious breech in state and federal laws about inclusion, IEP's, etc. and then tread lightly about what you "want" in her IEP?
It must be hard to prove that your child "needs" a certain service in court!!?? That's what they told us about Maggie not being provided with an A-V (Auditory Verbal) therapist. She had had one for 3 years through early intervetion. When she got to preschool, the school system just said "We don't do that!" Is it appropriate for her? Yes! But, does the school have to pay for it? Not according to state requirements here. Oh it's a long story that I won't go into! But, I bet that's what they are trying to say to you. It's all in the interpretation.
So be prepared. It's a hard and bitter pill to swallow. Been there!
Keep us posted. We're thinking about you.
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Post by MaggiesMom on Jun 9, 2004 0:12:07 GMT -5
Please update us! I just read this today and can't believe what you have goen through. You need to file a complaint for each violation and keep filing them. Please do get an attorney and sock it to them.
They count on intimidation winning. If they lose, and they will, they have to pay court costs! It doesn't matter what your child has done, the law is the law...even for them! LOL
Robin M - Maggie's mom
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