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Post by MaggiesMom on Dec 20, 2004 11:17:51 GMT -5
Jeannette - WE had to start Maggie out with Sippie cups that we could take the stoppers out. That way she didn't have to suck hardly at all. It kind of dribbles in her mouth, then she got the idea. It's not the cleanest way to have a sippie cup in the house, but it worked. She never did figure out how to suck on them hard enough to use the stoppers. But it didn't take long before she got the hang of a straw and we swiched to cups with straws.
Hang in there. It gets easier!
Robin M - Maggie's mom
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Post by MaggiesMom on Dec 19, 2004 23:03:09 GMT -5
Hello!
Boy are we still dealing with that! Maggie is almost 4 and still wants baby food. She will eat almost anything that's been cooked, if it's chopped up. But nothing that has to be chewed or bitten into. We've been to numerous therapists and just now found a new one that seems to be working out great!
I like MB's suggestions. Here is a very, very brief blip on my suggestions...find a really good feeding therapist. One that respects the child and the parents and won't force feed the child. Yes, you have to to stern and show no emtion a lot of the time. But I still believe that the reason Maggie won't bite or chew is due to the OT we had when she was 1 that tried to froce feed her cheerios. That child doesn't forget anything!!!!
Laura Snowbird that been through the same thing with her son. You may pop her a note and see if she can help. There is a helpful website, talktools.com I belive that has some tapes and good therapists. Maybe they come to your area. They don't come here.
Be patient and be consistant. It will work out. Just takes time.
Robin M - Maggie's mom
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Post by MaggiesMom on Dec 13, 2004 23:08:11 GMT -5
Hello and welcome back! I've been checked out for a while with school and such, so sorry I missed you coming on board. So glad you're here with us. My SISTER had a healthy, gorgeous, vivacious, etc. etc. daughter 3 months after Maggie was born. Talk about resentment...whew baby! First off, the day Maggie was born, my sister and her husband were totally freaked out. They were so caught up in "could this happen to our baby..." that it really ticked me off. Don't get me wrong, I understand why they were concerned. At the time, Maggie was just barely hanging on to life. But, still... Later, as my niece achieved each milestone and did all that cute baby stuff, my sister would call and have to tell me all about it. Now this was her third child, so it wasn't new stuff around these parts! LOL But I could feel the hair stand on end each time she'd call and tell me some cutesy story. It lasted about 8 months and then I got over it. Once Maggie got out of NICU and started being "just a baby", things got a lot better. Now, I hardly compare the two. They are good friends and play well together for 3 year olds. They are worlds apart in some things and side by side on others. Both are beautiful and talented in their own ways. All that being said, I think it takes a while to "adjust" to life with DS. I think it's perfectly normal to feel what you're feeling and you shouldn't feel guilty about it. It takes time. Everything will work out. Just take one day at a time. I have a friend who's daughter was born with DS 4 months after Maggie. My friend is still angry about her daughter having DS. I feel badly for her and wish I could help her change her perspective. But, I think it's something each person has to deal with individually. Hope things go wonderfully for you and your family. P.S. As always, I have to do my pubic service anouncement...have that baby's hearing checked by a certified audiologist every year. Maggie has hearing loss and testing has made a huge difference in her ability to hear well. Take care. Robin M
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Post by MaggiesMom on Dec 12, 2004 22:53:25 GMT -5
Yeah! I love it when that happens! So glad that she's feeling better and not seeing the docs as much as she used to. I'm sure it's a welcome relief. Give her a hug from us. Robin M
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Post by MaggiesMom on Dec 12, 2004 22:55:22 GMT -5
Hope everyone is having a better day today! He'll be swinging again before you know it.
Hang in there. It will get better.
Lots of hugs.
Robin M
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Post by MaggiesMom on Mar 16, 2004 22:56:30 GMT -5
Robin M - Mom to Maggie and Matthew.
We live in Southwestern Virginia, near Roanoke. Maggie just trasitioned to the public school after being in Early Intervention for 3 years.
Maggie doesn't receive any financial assistance.
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Post by MaggiesMom on Nov 14, 2004 22:02:56 GMT -5
Go see an opthamalogist! They can do everything without asking any questions. They have been checking Maggie's eyes annually since she was 6 months old.
The doc could tell us exactly what she could and couldn't see and how she was doing with her muscle coordination etc.
Ask other parents and see if they can refer you to a good doctor. Think of the younger kids you know that have glasses. That's usually a good place to start.
Take care.
Robin M
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Post by MaggiesMom on Jul 18, 2004 21:38:53 GMT -5
We're thinking Thanksgiving. But not sure yet.
Robin M
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Post by MaggiesMom on Sept 20, 2004 20:39:14 GMT -5
Maggie just had hers done for the 3rd time! The first time the ding dong pediatrician we have ordered the wrong set of films. The 2nd time, they didn't the a clear shot for whatever reason and the 3rd time they said it was fine.
PTL! It's really hard holding that kid still for all those pictures! She hates it.
Take care.
Robin M
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Post by MaggiesMom on Sept 20, 2004 19:56:31 GMT -5
We'll be praying for you all.
Keep us posted.
Robin M - Maggie's mom
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Post by MaggiesMom on Jul 19, 2004 22:15:42 GMT -5
We'll still be praying for you, Noah, and your Dad. It sounds like you've really had a rough time. I pray that it gets better quickly!
Please do press on with getting a second opinion about Noah's heart condition. The time to act is now. I know it's all overwhelming, but doctor's do miss things.
Take care.
Robin M - Maggie's mom
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Post by MaggiesMom on Jul 11, 2004 23:34:01 GMT -5
Praise the Lord! Now that he's getting better,maybe the cardiologists can see about getting that heart surgery going!
There's a group on Yahoo called ds-heart@yahoogroups.com I think some of those people may be able to help you get some information too. If that's not the right link, go to Yahoo and do a search in their groups for ds heart.
Take care of your whole family and give them lots of hugs!
Robin M - Maggie's mom
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Post by MaggiesMom on Jul 9, 2004 23:45:04 GMT -5
I'm sorry to hear what the doctors have said. I'd ask for a seperate, not from the same hospital or group, opinion as quickly as possible. Many times medical records can be faxed to other doctor's for consults. That incudes video they have from sonograms etc.
Check into and find out why they haven't done surgery yet. I've never heard of them not doing surgery when it was needed. I'm sure there are circumstances for that, but I've just never heard of it.
My therory is "question medical advice". You never know when it could be wrong! Unfortunately, it has been many times for us.
Take care. We're praying for your little man.
Robin M - Maggie's mom
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Post by MaggiesMom on Jul 7, 2004 23:42:27 GMT -5
It's weird that it just started like that. Seems like something happened that may have triggered it. Say a sore throat, mouth ulcers, loose tooth, something!
I think I'd have him checked out by a doc first and rule out anything "simple".
Maggie has sensory issues, but they've been there since the day she was born pratically. Not that we knew that's what was going on. It took us two years and several OT's to figure it out. But we did.
When we find that Maggie's gagging, we take a step back and go to things we know she will eat without gagging. Do that for a day or two, then start adding ONE thing back a day until she's back up to par.
With Maggie, this usually happens when I've pushed her too far in trying to get her to eat something that is toally different than before.
Good luck. Keep us posted.
Robin M - Maggie's mom
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Post by MaggiesMom on Jun 27, 2004 20:46:16 GMT -5
I want to echo a recommendation to start some solid foods.
Don't get me wrong, I breastfed both mine till they were well into their 2's...but Maggie got severely anemic shortly after her first birthday. All we had to do was add cereal to her diet and she came around nicely. But she had to be tested severl times after that. And that can be no fun.
We too have had an awful time with feeding issues. But I think it has more to do with Maggie's sensory issues and her "control" issues. It's her way or the highway!
Don't quit breastfeeding....it's great for those oral motor muscles! But, you may want to think about that cereal.
Take care
Robin M - Maggie's mom
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