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Post by MaggiesMom on Jun 30, 2004 23:18:47 GMT -5
Happy, Happy Birthday to you!
Maggie and her mom
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Post by MaggiesMom on Jun 30, 2004 23:12:04 GMT -5
I agree about the Strettera! My nephew and my sister both have taken it and say it's awful for insomnia. The doc even gave my nephew a "sleeping pill" of sorts to help him sleep.
I'd check the meds and see what your options are. Good luck!
Robin M
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Post by MaggiesMom on Jul 1, 2004 8:12:30 GMT -5
I agree...get a second opinion on his teeth. With Maggie's eating issues, I'm very afraid of her first visit to the dentist next week. I don't want her to regress at all. But, we'll see how she does.
About the Teens issue....How about a new topic on the bulletin board devoted to teens? That way things exclusive to teens could be posted there? I guess there could be a chat time for parents of teens too.
Maybe there's a way to incorporate it without making it seperate.
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Post by MaggiesMom on Jun 27, 2004 20:14:41 GMT -5
Amen!
Robin M - Maggie's mom
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Post by MaggiesMom on Jun 27, 2004 20:26:36 GMT -5
We drove 4 hours last year and spent the night with family to get to see the Wiggles! It was the best children's show I have ever been to!
We've seen Barney, Sesame Street, and others...but the Wiggles was the BEST by far! I highly recommend it.
Take bones for Wags and Roses for Dorothy. They let you get up and bring the stuff to them in the audience. The Wiggles actually came into the audience to gather them. It was too fun!
Tell us what you think when you get to see them.
Robin M - Maggie's mom
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Post by MaggiesMom on Jun 26, 2004 21:19:34 GMT -5
The one thing that my mom did for me was start a note book the day that Maggie was born. She wrote down everything that the doctor's said, appointments, schedules, questions for me to ask them later...again and again since I couldn't keep it all straight in my mind, or understand what they were saying!
It really helped me and I look back at it now and know that it was a really TOUGH time for all of us...we almost lost Maggie at birth due to her heart issues. So it was great to have that to fall back on.
Other than that, I agree with others...tell them it's okay, you understand their feelings and they can come to you anytime they have a question or need support. I do think it will be better if they come to you on their terms.
I would offer to do things like go to doctor's visits or other things that you know from experience they may need help with. But, I'm sure it will all have to be done delicately.
We'll be praying for all of you.
Robin M - Maggie's mom
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Post by MaggiesMom on Jun 24, 2004 23:13:20 GMT -5
I was about to write and brag on Maggie's accomplishment today...She jumped off the diving board by herself and swam over to the side...over and over and over again!
She wears her floaties, so don't think she's Aqua Woman or anything. We just started a couple weeks ago trying to get her to jump off the steps to me. Keeping her head above water etc. Well needless to say, she thinks she's ready for the summer olympic diving team now! LOL
It was hilarious to watch. She'd come up giggling every time and squeal with delight.
She does all her swimming with her feet though. She hasn't figured out how to use her arms and doesn't want Momma to do arm over arm to help!
Do you all think she's ready to swimming lessons now? I worry that #1 she won't be able to hear the instructor wiithout hearing aids in the water! And #2 she's stubborn and doesn't follow directions very well.
I like the idea of one on one lessons. I know the high school swim team coach, maybe I'll call her tomorrow.
Take care. Hope everyone has a great summer.
Robin M - Maggie's mom
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Post by MaggiesMom on Jun 23, 2004 0:31:34 GMT -5
Welcome!
If you have any questions about hearing tests, hearing loss, hearing aids...etc. Just let me know. Maggie has bialateral sensory neural hearing loss.
Which is a fancy way of saying...she can't hear at all in her left ear, some in her right ear and it's a permanent hearing loss. Hearing aids help.
Keep us posted. You have a beautiful family!
Robin M - Maggie's mom
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Post by MaggiesMom on Jun 23, 2004 0:36:44 GMT -5
So glad to hear Kyle is feeling better.
I pray that he will make a quick recovery.
Give him a big hug!
Robin M - Maggie's mom
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Post by MaggiesMom on Jun 21, 2004 23:24:45 GMT -5
Great thought! Can't tell you how much that hit home with me.
Maggie has to travel to MCV (Medical College of VA) Wednesday for the start of her evaluation for a cochlear implant. Her hearing loss has given me more sleepless nights than DS by a long shot.
I needed that! Thanks Susan!
Robin M - Maggie Doodles Mom
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Post by MaggiesMom on Jun 23, 2004 0:46:03 GMT -5
Hooray!
I'm glad that it all worked out so easily.
I know how to fight, but I'd rather avoid one at all costs! It takes too much time and effort away from Maggie and our family. But it just plain gives me a head ache!!!
Take care. Keep us posted on how his summer program goes.
Robin M - maggie's mom
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Post by MaggiesMom on Jun 21, 2004 23:32:43 GMT -5
I'd call that case manager and ask if it will be her or the special education director that will be your child's aid until they hire someone!??!!! By law...it's in his IEP...he is to attend ESY and he is to have an aid! Can we say "file a complaint?"!! I'd do it the first minute he sets foot on school property without an aid. I have very little tolerence for the public school and they know it. I have them write in the IEP that they have to have "WHATEVER" done by "DATE" for the ESY. It's already in Maggie's IEP for next year. They love me! LOL That way we all know what is expected and when it will be done. Does that mean I don't have to call them and still remind them? NO! I still do. But, at least I know that I have them by the collar if they don't do what they are supposed to. May the "Force" be with you! I consider them all Darth Vader!
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Post by MaggiesMom on Jun 18, 2004 0:25:58 GMT -5
Maggie was in NICU with pulmonary hypertension for 5 weeks. It was a very scary time! Her O2 would never stay where they were supposed to. The cardiologist told us that she has an ASD and PDA which have yet to close. They plan to do that within the next year or two. They haven't caused her any problems since she left NICU at 2 months of age. Now that being said, I'd ask questions about pulmonary pressures. Make sure that they aren't high and push to do somthing if they are. Some kids don't out grow it and it can cause irreversible heart damage. Not what you wanted to hear, I know! But, better to know and ask, than to leave it to the medical community. Sorry, I'm a bit soured by the medical group. The biggest thing I learned in NICU, is I could read Babies with DS and know more in a few days than a lot of doctors with their degrees! It was very frustrating. Keep asking questions. It helps to hear from those who have been there. There's a good DS heart group on Yahoo. I think it's ds-heart@yahoogroups.com You can do a search on yahoo groups if that isn't right. Sorry, my memory is not what it used to be. Hope all goes well. We'll be praying for you all. Robin M - Maggie's mom
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Post by MaggiesMom on Jun 17, 2004 13:36:19 GMT -5
One step ahead was who I was thinking of too. I buy from them when I can't fine what I'm looking for in the stores.
Robin M - Maggie's mom
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Post by MaggiesMom on Jun 16, 2004 23:40:39 GMT -5
We're praying here. Please keep us posted.
Robin M - Maggie's mom
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