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Post by MaggiesMom on Jun 10, 2006 19:18:48 GMT -5
Hey!
Signing Time is on PBS twice a week in our area. It's great!
Robin M - Maggie's mom
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Post by MaggiesMom on Jun 10, 2006 19:24:59 GMT -5
I am really trying to catch up on all these posts! Boy am I behind!
Esco is an insurance company who insures hearing aids. It's worth it! I can't tell you how many we've replaced. You can reach them at 1-800-992-3726
Asking for a soundfield system is an excellent idea.
Talk to your audiologist about adjusting the hearing aids to see if he tolerates them better with a different gain etc. I posted a few minutes ago about Auditory Neuropathy. There are some posts there if you need that info.
I wish I had known about AN/AD when Maggie was born. She has had it for 5 years, but they missed it on her first ABR! Ugh!
Good luck! Robin M - Maggie's mom
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Post by MaggiesMom on Apr 30, 2006 21:11:06 GMT -5
We're thinking of you and praying that everything will go just wonderful! Hang in there.
Robin - Maggie's mom
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Post by MaggiesMom on Apr 29, 2006 10:41:04 GMT -5
When Maggie first started doing ABR's, she was 2 months old and she didn't have to be sedated. She just slept right through it. They could do that as long as she slept soundly during the test. Now, she has to be put under general anesthesia. It's a bummer, but I'm so glad we did that again. It told us what we had been trying to find out for three years. AND...the doctors who had done the first two tests had missed it! Ugh!
Hope all goes well. Drop me a note if you have any questions on hearing stuff. We've been doing it for 5 years now.
Robin - Maggie's mom
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Post by MaggiesMom on Apr 29, 2006 10:12:45 GMT -5
Thanks everyone!
I'm not sure what type of MRI it is. I've never done any of that before. Hopefully she won't have any problems and it will tell us everything we need to know.
I'll check in with ya later.
Robin - Maggie's mom
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Post by MaggiesMom on Apr 28, 2006 0:47:59 GMT -5
Hello out there! It's been a very long time. I missed getting to keep up with everyone, but life keeps getting in the way. Thought I'd catch you up on Miss Maggie and all her adverntures.... Maggie's now 5. We're doing preschool at home. She loves all her therapists...PT, OT, ST, Auditory Verbal therapy, Aqua therapy, and Hippo therapy! It's keeping us busy! I'm tutoring from my home and still homeschooling Matthew who is now 12. Man, they grow up too fast! Maggie has recently been diagnosed with Auditory Neuropathy, which basically means the "wiring" for her hearing isn't working correctly. Which some of you know, she already had moderate and profound hearing losses, so this makes it even more interesting. Life if just one adventure after another! I do have a question for you all...I remember someone, it's been 4 or more years ago, who spoke about their child with DS having trouble with anesthesia. Maggie's getting ready to have an MRI and they said that they will put her to sleep to do the procedure. Can't remember the name of the drug they will use, but I think it ended it -tol. I'm no good at that stuff! Anyway, she's been put under for tubes and ABR's and such before. But for some reason, they are acting like this is different. Can anyone clue me in? We've not done MRI's before. Hope everyone is well. I'm having fun trying to catch up on all your adventures! Take care, Robin - Maggie's mom
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Post by MaggiesMom on Oct 2, 2005 14:07:36 GMT -5
Maggie started out having hyper thyroidism, but then her levels swang back down toward hypo. Ends up she has "thyroiditis". The doc at UVA said it was when the antibodies start attacking the thryoid and soon she wouldn't have a thyroid. Thus the need to supplement with Levoxyl for ever more.
I was very heistant to do medication and it really depressed me to add "one more thing" to our list of daily meds etc. But trust me, it's been the least of our worries.
We do give it every morning in her juice crushed up. Maggie won't take liquid meds anyway. So it works well that way.
We were told the same others have mentioned...don't switch from generic to name brand, don't mix with other meds, etc.
I did take Maggie to a local endocrinologist, but he had no clue what to do with children. So we went to UVA. Worked much better!
Take care.
Robin M
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Post by MaggiesMom on Sept 14, 2005 22:43:06 GMT -5
Hello out there!
It's been so long since I've been on line. Still feels like home though!
Maggie used to have this problem all the time! We use natural pear juice...no sugar...and we have her eat the baby food pears each day. She also eats oatmeal most mornings, doesn't drink milk or eat cheese, apple products, or bananas. Oh yeah, no rice either. All things the doc told us to keep away from.
She does eat yogurt by the tons, but not with sugar in it. She doesn't care. We've used the culturelle probiotics too. It all seems to help keep her going. LOL
We tried Miralax, suppositories, baby lax, the works. But adjusting her diet has worked the best.
I didn't notice how old your child is, but if he/she is old enough, don't forget drinking water.
Hope that helps.
Robin M - maggie's mom
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Post by MaggiesMom on Sept 14, 2005 23:17:11 GMT -5
Laura,
Long time no see! LOL Maggie is still keeping us guessing with the eating problems...but she did finally take a bite, chew and swallow a piece of grilled cheese! Yippee!
Now we have apraxia to deal with as well. Thanks for the info!
Take care.
Robin M - Maggie's mom
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Post by MaggiesMom on Nov 5, 2004 11:12:54 GMT -5
Wow! I thought I was the only one that had to fight to get that first bite in. Sorry to hear that others have to deal with that too, but glad to know I'm not the only one. LOL
Maggie will eat most anything if you mash it up with a fork so she can swallow it whole. She is seriously scared of whole foods, like fingers foods and crackers. She won't even touch them most of the time. We're working on desensitizing her to that. Some fun.
I better run. Take care and let me know what your therapist says. I'd love any great ideas.
Robin M
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Post by MaggiesMom on Nov 4, 2004 23:40:26 GMT -5
Oh Laura, where are you?
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Post by MaggiesMom on Nov 3, 2004 12:43:42 GMT -5
Hey Laura! I'm here. Just checking in about once a week now. I'm still going to school part time plus homeschooling, Maggie's stuff and life in general. A little more busy than usual! Thanks for asking!! I was just thinking about you! We are now seeing feeding therapist number 4! Can't seem to find one that wants to take the time to work with us. They are all so busy and we have to travel to see them. It's a pain all the way around, but we have to do something. This child is still not biting or chewing! We're at the "playing with our food stage". Trying to get her comfortable with getting her hands dirty and getting it near her face. Not happening yet, but she's not screaming when we put her in the seat now. Baby steps. How's Ethan doing with his eating? I'm off to get Maggie's lunch. Take care. Robin M - Maggie's mom
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Post by MaggiesMom on Nov 3, 2004 12:45:25 GMT -5
Robin - We're thinking about you and praying for you guys. Hope all went well. Post up and let us know.
Robin M - Maggie's mom
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Post by MaggiesMom on Oct 6, 2004 22:02:31 GMT -5
Hey - Maggie's got her groove on...has to eat out of the same bowls, the same spoons, the same cups etc. Oatmeal for breakfast, only drinks pear juice and drinkable yogurt, etc. etc. etc. The list could go on forever. We just thought it was Maggie being Maggie. But I guess it's a "groove". Funny! Now about this getting your hands dirty thing...LOL Matthew has NEVER played in the dirt, gotten dirty etc. and for a rough and touble boy, that's different! He used to stand up after falling down and hold out his hands for me to wipe them off first! Now Maggie has followed suit and doesn't like glue, paints etc. getting on her hands. We've been seeing a feeding specialist to get the child to eat finger foods. Do you think it's because she doesn't want to get her hands dirty? LOL Could be! Now does their mother have issues? Of course I do! I have to have tags cut out of my shirts and my socks have to be just so. I think we all have sensory issues that we're attuned to. Different people about different things. Go figure! I was at a field trip for my health class tonight about using animals in therapy. There is an OT here who uses Lamamas, bunnies, dogs, etc. It was too cool. I'm going to look into it for Maggie. I loved it. I'm sure she would. Take care. Robin M
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Post by MaggiesMom on Oct 6, 2004 22:46:53 GMT -5
Okay, I need to hear more about this!
We have a local organization that does service dogs, but they said that until Maggie can communicate with the dog, she wouldn't qualify.
Since Maggie has hearing loss as well as DS, I had hoped the dog could help her with hearing issues...cars coming, fire alarms going off etc.
If they have organizations that would be more "friendly" to our needs, I'd love to hear about them.
Thanks!
Robin M
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