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Post by MaggiesMom on May 27, 2004 23:54:37 GMT -5
We're praying! Please keep us updated.
Robin M - Maggie's mom
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Post by MaggiesMom on May 27, 2004 23:58:18 GMT -5
Yeah! We're proud of her too! And please do tell your PT that kids become tornados after learning how to walk. There's too much fun stuff to get into! Trust me, there will be NO rest now. Get some sleep. You'll need it. Robin M - Maggie's mom
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Post by MaggiesMom on May 28, 2004 0:07:31 GMT -5
Welcome!
We'd love to hear more about your family.
There's a recent post on the medical board about puemonia. How ever you spell it~!
Take care.
Robin M - Maggie's mom
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Post by MaggiesMom on May 28, 2004 0:10:02 GMT -5
My thoughts exactly...sensory stuff. I suggest an eval by your OT. We do brushing therapy and that helps. We have a whole box of "oral" stuff that Maggie uses when she needs that oral stimulation.
The licking the tv and class is what makes me nuts! I could clean all the glass surfaces in my house twice a day and still not keep up with that tongue print!
Take care.
Robin M
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Post by MaggiesMom on May 27, 2004 23:53:26 GMT -5
That is so great. Tell Vickie I said hello and I've been thinking about them.
Maggie goes to MCV this summer to get her next ABR. We'll hopefully know then if she is a candiate for a cochlear implant.
I'm a little nervous about the whole thing. But, if it helps the child hear, it has to be better than not.
Please keep us posted.
Robin M - Maggie's mom
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Post by MaggiesMom on May 28, 2004 0:03:06 GMT -5
Woo hoo! I'm not only proud of his talking, but wanting to eat! I remember when we talked last year and he was just starting to put things in his mouth!
Oh, how I can't wait to not only hear french fry, but see my baby eat one!
By the way, I took away the sippy cup today! So far so good. She really worked on her daddy trying to get it back. But, I set my foot down. She does fine with straws and open cups, so we need to get on with life.
If I could just get my husband to quit doing things the "easy way"! Ugh!
I'd love to hear more about Dr. MacDonald. Please share! Speech and feeding are our #1 issues right now.
Help!
Robin M
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Post by MaggiesMom on May 28, 2004 0:25:31 GMT -5
MB
You know, I had a regional EI coordinator tell me her theory is that kids with DS will do things, just later, and that she didn't think therapy did any good! It just frustrated the child and the family, and took up a lot of time!
I thought it a wild theory at the time, but now understand that there are some things, given time, that will emerge on their own. But, I firmly believe that therapy does help with sensory issues and lots of other things that Maggie may not be able to ldeal with on her own.
I belive Dr. Fereurstien, from Israel, stated that expectations can motivate or limit a person. I think that is true of most people.
Thanks for the thoughts.
Robin M - maggie's mom
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Post by MaggiesMom on May 24, 2004 20:47:31 GMT -5
Dear Pebbles, Don't quit! It's so hard getting services and then trying to do all the things that your child needs from you too. Plus working? You do have your hands full! But, we've all been there and it does get easier. Not that everyone just starts cooperating, but you get used to the system and learn how to deal with it. In my case, I got a RX from our pediatrician for speech and the EI was more inclined to honor it. It sometimes takes some pushing, but it can be done. Even if you don't get the answers you need the first time they send someone out to evaluate your child, you can request an outside evalutation. Sometimes you have to pay for it, sometimes not. Ask for a copy of your "rights" which they, by law, (in VA anyway) have to give to you each time you get paper work to sign. Then ask them to explain to you what your options are. You can ask your health insurance if they cover speech therapy. Ours does if the pediatrician recommends it. We have a co-pay, etc. But, we had to go that route when school system didn't have anyone trained in the therapy Maggie needed. If your child gets medical assistance, I'd think they would cover it as well. It would be worth asking. I've gone through 5 different speech therapists working on Maggie's hearing issues and feeding issues. We haven't even started worrying about speech yet. I'm sure it will come soon. But there is tons a speech therapist can do now to get your child ready to eat, talk etc. If they don't know what to do, we'll educate them! Hang in there. We're with you! Robin M - Maggie's mom
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Prayres
May 20, 2004 0:02:27 GMT -5
Post by MaggiesMom on May 20, 2004 0:02:27 GMT -5
We're praying for Matthew and the family of his friend.
Take care.
Robin M - Maggie's mom
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Post by MaggiesMom on May 18, 2004 0:59:23 GMT -5
Maggie has had this problem for a long time too.
She eats pears and/or peaches everyday. And she drinks Gerber or Beech Nut 100% pear juice everyday. The doc finally gave us a RX for Miralax which is safe for even babies to use. It's just a stool softner. Plus it disolves in any liquid, so it's easy to give!
The doc told us no apple sauce, no apple juice, no bananas, no cheese, rice cereal or other "binding" food items.
We use oatmeal ceral, pears, peaches and combinations with pears or peaches in them. Since Maggie's started eating more table food, it has helped a lot. She has greenbeans or broccoli, plus other veggies twice a day. Lots of roughage! LOL
Hope that helps.
Drop me a note if you need more info.
Robin M - Maggie's mom
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Post by MaggiesMom on May 18, 2004 1:05:44 GMT -5
Maggie started out as hyperthyroid, but now her levels are swinging back to hypo! Weird huh?
She has never been on meds, although her first endocrinologist wanted to put her on some. I got a second opinion at UVA and Dr. Clarke there said that it was not rare for EVERYONE's thryoid level to go up and down throughout the day. So if you haven't had but one set of blood work done, ask to have it repeated.
I know it's a nightmare to get that blood, it was for us, but it was worth it. Ask for a NICU nurse if you have to. They are usually very good at sticks.
The doctor told us at our last annual check up that as long as Maggie's anitbodies weren't acting up, we didn't have to medicate her.
I'd go with a second opinion too. We had the best in our area, and he didn't know squat about DS and thyroid problems.
Hang in there.
Robin M - Maggie's mom
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Post by MaggiesMom on May 16, 2004 23:48:08 GMT -5
Hey! Thanks for the info. When we tried using the Critter Clips our audiologist provided, it made it even more convenient for Maggie to chew on her hearing aids! They would come out and be dangling right there at hand level for her to pick up and chew on. Didn't you know that hearing aids are great teethers? Ugh! In fact, Maggie has been without a hearing aid for a week now since we had to ship it off for repairs. And guess what for? She chewed the case up and bit off part of the switch! It's the longest she's been without a hearing aid since she was 4 months old. I hate it, but she loses those things or damages them on a regular basis. We have insurance on them, but it doesn't do much good. Where did you get your diaper pin? I haven't seen those in years and years! Thanks for your help! Robin M - Maggie's mom
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Post by MaggiesMom on May 15, 2004 23:06:02 GMT -5
Maggie has gone through that recently. A big part of it with her is not being able to communicate what she wants, or doesn't want at the time.
We've started trying sign to see if that helps. But, so far, she doesn't get it. It lasted for about a week and then she quit.
I'm thinking it had a lot to do with the fact that she had a lot of new people in the house that week...new therapists and a teacher...and just lots of new things. Her sensory issues just don't allow her to handle "new" anything very well. No new foods, utensils, people, shoes, etc. But, as time goes on and she's exposed to it again and again, she eases up and goes on.
Have you all done brushing with the OT? We have been doing that the past few weeks and it really seems to be helping Maggie be less defensive.
Good luck!
Robin M - Maggie's mom
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Post by MaggiesMom on May 16, 2004 0:58:04 GMT -5
Did it! Love it! Thanks for the help.
I'd love to know how to make the file smaller so I can get some other pictures up. Most are too big. Any suggestions?
Thanks Michelle for all your hard work!
Robin M - Maggie's mom
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Post by MaggiesMom on May 15, 2004 22:55:23 GMT -5
Okay...I registered and I'm on the photo album...but I don't see anywhere how to add a picture.
What am I over looking? HELP!
Thanks!
Robin M
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