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Post by MaggiesMom on Jul 18, 2004 21:57:06 GMT -5
Oh my, I'm glad my child is not the only one that acted like someone died when told that Santa was not ....you know what I mean! (In respect to those of you who still believe!) I had never told him one way or the other, I just let him believe whatever he wanted. He went at it whole hog of course. I had made up my mind that I wouldn't "lie" to him if he ever asked me because somewhere in the back of my mind, I can hear a one of my friends saying..."It's a pagan belief and you should NEVER lie to your children!" So last year, he was 9 and getting to that age of reason and asked me point blank. I asked him what he thought and he said "I think it's you and Dad." We went through the whole Saint Nicholas tale and all that trying to avoid the subject, but he kept asking. Finally I told him and he started crying and stormed out of the room. I felt horrible! He wouldn't speak to me all night and part of the next day. But, I was afraid to just leave it hanging and I really didn't want to lie to him. He's gotten over it, I hope! But, I doubt he'll ever forgive me! Sometimes this parenting stuff stinks! Hope someone figures out another, better strategy before Maggie asks me! Help! Robin M - Maggie's mom
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Post by MaggiesMom on Jun 21, 2004 23:19:49 GMT -5
Thanks girls! I'm going to try some of that tomorrow.
I worked on it again last night with a carpet cleaner, it still stinks! So on to newer and hopefully freasher ideas!
Thanks again.
Robin M
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Post by MaggiesMom on Jun 20, 2004 22:22:12 GMT -5
I need some MAJOR help boys and girls!
I was out Friday evening and dh stayed home with the kids. When I returned, I found not only a stained carpet, but a very smelly one too!
Seems that Maggie's "diaper exploded", as my 10 year old says, and it went everywhere. Joy!
I have steam cleaned it several times, but it doesn't seem to be getting the smell up.
Any suggestions?
Thanks!
Robin M - Maggie's mom
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Post by MaggiesMom on Jun 20, 2004 22:19:52 GMT -5
I almost fainted when I saw that our local gas station had gas for $1.69 today!!!! It hasn't been that low in...I can't remember!
Needless to say, I was jumping for joy! Sorry everyone else is paying way more. Been there, but it seems to be getting better here for some reason! The prices have been going down the past two weeks.
Keep dropping is what I say!
See ya Robin M - Maggie's mom
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Post by MaggiesMom on Feb 11, 2007 0:25:34 GMT -5
Hey Laura! You know Maggie has lots of the same issues! Here's what we have to do. #1 Yogurt with a Culturelle mixed in twice a day. You can find it in the stomach medicine section at Walmart, CVS etc. I'm not sure how bighe is, but Maggie's 42 pounds and it takes one caplet, twice a day. #2 CRISCO!!!!! We slather it on thick! It works like magic! I highly recommend buying a small can just for the diaper changing area...mark it diaper rash medicine! You sure don't want that getting mixed in with your baking stash!! #3 If the antibiotic is causing bad diarrhea, the pharmacist told us to let her take a day break from it and then go back to it. I've even talked to the doctor about changing meds and giving smaller, but longer doses. All have worked. Just talk to the doc about it. All these things are suggestions of our local pediatrician cause Maggie has such low tolerance for antibiotics. It kills her stomach. They make a diaper rash cream called Miracle Cream that is a Rx too. It works well, but I'm telling ya, good old Crisco works great! Hope that helps. Robin M
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Post by MaggiesMom on Feb 11, 2007 0:49:10 GMT -5
Listen-up.com has some good suggestions on IEPs and rights of people with hearing loss. FM system is probably a must. Daily checks by someone who is trained is a great idea. I would imagine speech therapy would be something she'd need if she's not already receiving it. Is she just using speech/hearing or is she using sign, cue or other techniques? That should be listed too. If you find that she's missing important information or can't follow directions due to the hearing loss, a personal aid is not out of the question. Schools don't like to deal with hearing loss cause it costs a lot per student. It's my understanding that only 1% of most school systems have a hearing loss. So other things get the money. Write me if you want more information. Maggie's worn hearing aids for 5 years. We just found out she has auditory neuropathy too. Makes hearing loss even more complicated. Take care. Robin M
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Post by MaggiesMom on Feb 11, 2007 0:09:23 GMT -5
So is Gatlinburg where you all decided to go? I'm just now catching up on my reading and saw this first.
I can do Gatlinburg, we were already thinking about going there!!!! Either weekend works for me.
Fill me in please!
Robin M - Maggie's mom
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Post by MaggiesMom on Jan 16, 2007 0:06:15 GMT -5
Me again....
I just posted a couple of new pics in my album.
Enjoy.
Robin
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Post by MaggiesMom on Feb 11, 2007 0:59:35 GMT -5
Hello again.
Thanks for your comments!
I sent lespring an email. I'd love to find out more information.
Thanks!
Robin M
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Post by MaggiesMom on Jan 15, 2007 23:47:06 GMT -5
Hello all!
I just posted on the update thread. Didn't realize how long it's been!
Maggie is not doing well with her speech. We've done typical speech therapy, oral motor therapy (still doing it), auditory verbal therapy, and sign.
Unfortunately, we feel Maggie has dyspraxia as well as her hearing loss, so it's making speech very difficult.
Does anyone do Prompt or Cued Speech? I saw the Down's Cue website, but I need to talk to someone who's done this.
Prompt is supposed to be different, more for motor planning. But I'd love some information on it too.
I'd love some more information if anyone has some.
Thanks!
Robin M - Maggie's mom
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Post by MaggiesMom on Jan 15, 2007 23:42:06 GMT -5
Hello all! Do you know how long it's been since I've even been to UNMOAS? I'm sure it's been a year at least! Bad, bad girl! Anyway...I miss you all! Maggie is going to be 6 Valentine's Day!!! I so can't believe my baby is that big. Matthew, Maggie's big brother, just turned 13 Sunday. I'm getting old! Maggie is doing well. I'm homeschooling both kids and we go out for Maggie's private therapy once a week. I have to say I'm not happy with Maggie's progress in anything, but that's the main reason we chose to homeschool and do private therapy. We spent the entire year of 2006 trying to see if Maggie was eligable for a cochlear implant, or two. She was diagnosed with auditory neuropathy last spring. After MRIs and dozens of tests, they found that her left ear is a total loss. It doesn't even have a viable nerve. So, no cochlear implant, her hearing aids don't help much, and thus not much speech. She can still only say a few words and signs about 20. Unfortunately, she doesn't "attend" to task well and doesn't want to pay attention when we try to get her to sign either. She still has thryoid, heart, asthma, feeding, and stomach issues. Lots of therapies, doctors and such. She had tubes put in again this year. She constantly has fluid...even though the doctor swears he can't see it, she flunks her tympanograms. Go figure! Maggie is a joy to be around. She sings ( in Maggie language) dances and plays all day. She still loves Barney and Sesame Street. Her new love is Spot! Saved those from Matthew...10 years ago! Matthew plays AAU baseball, is taking 9th grade classes although he should be in the 7th grade, and he started playing bass guitar in the youth praise band. He keeps me busy! I'm not enjoying teaching algebra this year, but I'm slowly remembering all that "stuff". Tim (dh) is still into VWs and restoring them in our garage. He's great with Maggie and she's her Daddy's girl. I've had a hard year. Depression hit about the time we found out Maggie was not going to hear any better than she does now. It just really devastated me. Everything else, I could deal with. But I so want her to hear, speak and read. It's heart breaking. I'm better now and trying to find a new direction. I'm investigating Cued Speech. There is even a Down's Cue website. Anyone do cued speech here? I think I'll post a separate thread on that later. I plan to take Maggie to a new private school this summer and see how she does. I hear great things about them...although we'd have to travel an hour each way. I promise to check back in more often. I was thrilled to read about everyone's families. Great idea! Take care. Robin M - Maggie's mom
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Post by MaggiesMom on Jun 10, 2006 18:45:47 GMT -5
Kelly, So sorry I've been away again. Anytime you have questions about hearing aids, or hearing loss, please feel free to write me. If you click on my name, you can send me a personal message and I'll send you my email addy. Maggie is 5 and has profound sensory neural loss in her left ear and moderate/severe in her right. We just found out in March that she also has Auditory Neuropathy. First...check with the audiologist that did her testing and see if she's had an ABR. That's a test they have to do while the child is asleep or sedated. That can tell them if she has Auditory Neuropathy too. If she does, that could be a good reason why she's pulling the hearing aids out. Auditory Neuropathy or Auditory Dysynchrony (AN/AD) makes everything sound "fuzzy". Basically like a radio that has static on it. Yuck! Make sure you ask specifically about AN/AD. Many children have to get a cochlear implant to be able to hear with AN/AD. Not always, but it seems to be the consensus these days. Maggie has had the best digital behind the ear hearing aids since she was 4 months old. We fought with her for 2 years to keep them in her ears, even making her ear a specially designed hat so she couldn't get them off. But, then we learned that her left hearing aid was so loud that it was interfering with the right ear. An echo so to speak. Finally we found out about AN/AD and learned that hearing aids just aggravate some children. I know when Maggie's audiologist turns Maggie's hearing aid up to get more speech sounds, Maggie can't deal with it and we have to turn it back down. Maggie is now being tested to see if she is a candidate for a Cochlear implant. It took us three years to get a doctor who was even interested in testing Maggie for AN/AD. Our auditory verbal therapist told us three years ago she thought Maggie had AN/AD. It's very frustrating dealing with hearing problems in the first place, but to go to three different hospitals to seek testing and still get no help, that's ridiculous! All that being said, if you can try getting the hearing aids in her ears for short periods of time, especially when she can hear that it makes a difference, then she may start to tolerate them better. We made it a point to sing Maggie's favorite songs...thumbkin, itsy bitsy spider, etc. and boy she really listened! we also played games and other things to get her attention. TV never worked with Maggie. She love to watch it, but it didn't keep her distracted enough. That's one of the big things an auditory verbal therapist teaches kids...how to listen. Make sure there isn't a lot of background noise. Hearing aids amplify everything...the tv, the dishwasher, the road noise in a car, etc. Maggie still can't tolerate some situations like in the car or in large stores. Too much noise. Tell your audiologist exactly what the problem is and ask if he/she can adjust them so they aren't too loud till she gets used to them. It's easy to turn them up a little at a time. Does her hearing aid have a volume control on the back? Maggie's doesn't. But if it does, then you can turn it up or down yourself. It may just take time for her to get used to them. Do you use Otoease? It's a special lubricant to help the ear mold slip in without hurting. That could help too. Good grief, there's so many things that could go wrong or right! Try some of those suggestions. If that doesn't work, write me and I'll try to come up with some more. There are some good websites you should check out... www.listen-up.orgwww.medschool.lsuhsc.edu/Otorhinolaryngology/deafness_article1.aspThere are a couple of good support groups on Yahoo too. Hang in there. It does get better! Robin M - Maggie's mom
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2 bits
Jun 10, 2006 18:56:51 GMT -5
Post by MaggiesMom on Jun 10, 2006 18:56:51 GMT -5
I agree...it's a tear jerker. But, in the most wonderful of ways!
Robin M - Maggie's mom
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Post by MaggiesMom on Jun 11, 2006 9:43:49 GMT -5
Thanks, I'll email him instead.
Robin M - Maggie's mom
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Post by MaggiesMom on Jun 10, 2006 19:09:42 GMT -5
Boy do I need to tell this guy a few things about VA!!!
I'm going to call Monday!
Laura, check your personal messages on UNOMAS. I sent you one a while back.
See ya, Robin M - Maggie's mom
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