Re: Check-in Day!, 6/4/2007, 12:00 am

[Guest guest]

Adrienne's PT has said she has had good luck with insurance covering so far. We are lucky to have good insurance, both my husband and I work in health care. I will let you know how it goes! Cyndy wrote: Cyndy, The Therasuit concept intrigues me, and I looked it up online and it sounds very interesting. Do insurance co's cover something like that? I suppose it might fall under physical therapy.Let us know how that goes for

Adrienne. That is something I might consider for Luke at some point. Good luck!

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[Guest guest]

Cyndy, Would you mind telling me a little about what the Therasuit does for our kids and which ones would seem the most appropriate for it. I looked it up but couldn't tell exactly what it would do. Thanks, MiriamCyndy Bayer wrote: Adrienne's PT has said she has had good luck with insurance covering so far. We are lucky to have good insurance, both my husband and I work in health care. I will let you know how it goes! Cyndy <ereed356bank> wrote: Cyndy, The Therasuit concept intrigues me, and I looked it up online and it sounds very interesting. Do insurance co's cover something like that? I suppose it might fall under physical therapy.Let us know how that goes for Adrienne. That is something I might consider for Luke at some point. Good luck! Get the free Yahoo! toolbar and rest assured with the added security of spyware protection.

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[Guest guest]

Thanks, Irene, for the words of encouragement. We have great days and we have bad days. Just sometimes....things are so rough that it hits me even harder. I guess as time goes on my role as mom, advocate, and nurse will aslo include teacher and ethics committee. People still just DON'T get it.....that their stares and words and mouths hanging open actually hurt. Like I said before, may not be bothered at it.....but it bothers me.

As far as Jordan, after he passed I did check into CLIMB and received some newsletters. It only helped a little. The pain and anger and loss just never truly goes away....it is just below the surface at all times. Some days I am just fine and other days it is like that top surface has been ripped open leaving the wound open and oozing again. Lots of triggers....seeing twin boys, esp identical boys, and even more identical boys with DS. Anyway.....my cross to bear for life. Like I said....only special moms get to be a mom of twins......I wasn't special enough. That is just the reality.

Thanks for everything. BTW.....it was great seeing your family also. Wonderful kids and wonderful Mom!!!!!!

Deanna mom to Alyssa, 13 , 11

Jarod, 6 , 4 (DS) ~i~Jordan (DS) 1/20/03-2/2/03See what's free at AOL.com.

[Guest guest]

,

Thanks so much for your words. I always pray Jordan is with me at all times. I still "talk" to him. The pain just never vanishes, but always lingers.

As for people....our close neighbors seem to be great....b/c they have been here to watch him grow. The grocery store is 98% great....b/c we are regulars and all the regular workers and shoppers know him. It is places like the school....of all places.....that I see the most of this near disgust when they look at him. Of all places.....a place where people are to learn in a vast community of differences!!!!!! I blame the parents a lot b/c they obviously not have taught the kids about manners and they have not taught them about people with differences....whatever they are. That is just astonishing to me. SO.......I may never send him to school. Just not what I want for him. AND at 4 he doesn't walk or talk or eat by mouth. So he can't stand up for himself at all. THAT is not fair. So I am on a huge teeter totter teetering both ways, undecided on what to do.

Thanks so much.

Deanna mom to Alyssa, 13 , 11 Jarod, 6 , 4 (DS) ~i~Jordan (DS) 1/20/03-2/2/03 See what's free at AOL.com.

[Guest guest]

Deanna,

I am so thankful that you feel you can be so open and honest with "our group." I know that I cannot truly understand what it is like to lose a child, just know that I am thinking of you and saying prayers for you and your family. One thing that came to me as I read your e-mail when you wrote that "only special moms get to be moms of twins"....maybe only really special moms get to be moms of twins where one is an angel in heaven.

Marcia

Mom to Sara (DS) and 12 and Lucas 16

See what's free at AOL.com.

[Guest guest]

Well said. I feel the same way. -

Rrietmann@... wrote:

>

> Deanna,

>

> I am so thankful that you feel you can be so open and honest with " our

> group. " I know that I cannot truly understand what it is like to lose

> a child, just know that I am thinking of you and saying prayers for

> you and your family. One thing that came to me as I read your e-mail

> when you wrote that " only special moms get to be moms of

> twins " ....maybe only really special moms get to be moms of twins where

> one is an angel in heaven.

>

> Marcia

> Mom to Sara (DS) and 12 and Lucas 16

>

>

>

>

>

> ------------------------------------------------------------------------

> See what's free at AOL.com

> <http://www.aol.com?ncid=AOLAOF00020000000503>.

>

[Guest guest]

Deanna, You are and always will be mother to twin boys!......................Merry

-- Re: Check-in Day!, 6/4/2007, 12:00 am

Thanks, Irene, for the words of encouragement. We have great days and we have bad days. Just sometimes....things are so rough that it hits me even harder. I guess as time goes on my role as mom, advocate, and nurse will aslo include teacher and ethics committee. People still just DON'T get it.....that their stares and words and mouths hanging open actually hurt. Like I said before, may not be bothered at it.....but it bothers me.

As far as Jordan, after he passed I did check into CLIMB and received some newsletters. It only helped a little. The pain and anger and loss just never truly goes away....it is just below the surface at all times. Some days I am just fine and other days it is like that top surface has been ripped open leaving the wound open and oozing again. Lots of triggers....seeing twin boys, esp identical boys, and even more identical boys with DS. Anyway.....my cross to bear for life. Like I said....only special moms get to be a mom of twins......I wasn't special enough. That is just the reality.

Thanks for everything. BTW.....it was great seeing your family also. Wonderful kids and wonderful Mom!!!!!!

Deanna mom to Alyssa, 13 , 11

Jarod, 6 , 4 (DS) ~i~Jordan (DS) 1/20/03-2/2/03

See what's free at AOL.com.

[Guest guest]

Deanna,

You are special enough!

---- Deannalee0524@... wrote:

> Thanks, Irene, for the words of encouragement. We have great days and we

> have bad days. Just sometimes....things are so rough that it hits me even

> harder. I guess as time goes on my role as mom, advocate, and nurse will aslo

> include teacher and ethics committee. People still just DON'T get it.....that

> their stares and words and mouths hanging open actually hurt. Like I said

before,

> may not be bothered at it.....but it bothers me.

>

> As far as Jordan, after he passed I did check into CLIMB and received some

> newsletters. It only helped a little. The pain and anger and loss just never

> truly goes away....it is just below the surface at all times. Some days I am

> just fine and other days it is like that top surface has been ripped open

> leaving the wound open and oozing again. Lots of triggers....seeing twin boys,

> esp identical boys, and even more identical boys with DS. Anyway.....my cross

to

> bear for life. Like I said....only special moms get to be a mom of

> twins......I wasn't special enough. That is just the reality.

>

> Thanks for everything. BTW.....it was great seeing your family also.

> Wonderful kids and wonderful Mom!!!!!!

>

>

>

> Deanna mom to

> Alyssa, 13

> , 11

> Jarod, 6

> , 4 (DS)

> ~i~Jordan (DS) 1/20/03-2/2/03

>

>

>

>

> ************************************** See what's free at http://www.aol.com.

[Guest guest]

Hi Miriam, Sorry it has taken awhile to get back to you, but I went to a presentation on the Therasuit last night and knew I would have more info for you today. The Therasuit in conjunction with intensive therapy would help our kids with their low tone. It works on their core strength, which helps everything, including their fine motor skills. They are finding that they can gain up to a year's worth of progress in the 3 weeks they do the intensive therapy. So for example, Adrienne's next level of progress would be running and jumping. After the intensive therapy she should be able to run and jump! Insurance has been covering it here under intensive therapy. Hope this helps Cyndy Miriam Kang wrote: Cyndy, Would you mind telling me a little about what the Therasuit does for our kids and which ones would seem the most appropriate for it. I looked it up but couldn't tell exactly what it would do. Thanks, MiriamCyndy Bayer <bayertwins> wrote: Adrienne's PT has said she has had good luck with insurance covering so far. We are lucky to

have good insurance, both my husband and I work in health care. I will let you know how it goes! Cyndy <ereed356bank> wrote: Cyndy, The Therasuit concept intrigues me, and I looked it up online and it sounds very interesting. Do insurance co's cover something like that? I suppose it might fall under physical therapy.Let us know how that goes for Adrienne. That is something I might consider for Luke at some point. Good luck! Get the free Yahoo! toolbar and rest assured with the added security of spyware protection. Park yourself in front of a world of choices in alternative vehicles.Visit the Yahoo! Auto Green Center.

Park yourself in front of a world of choices in alternative vehicles.Visit the Yahoo! Auto Green Center.

[Guest guest]

Cyndy,

What did they say about post-therapy? Do you have to do some kind

of " maintenance " therapy so they don't lose what they've gained? I

was just wondering what's involved after the intensive part,

especially if you have to travel some distance to find a therapist

trained in this.

Thanks!

--mom to Luke (DS) and Jake

>

> Hi Miriam,

>

> Sorry it has taken awhile to get back to you, but I went to a

presentation on the Therasuit last night and knew I would have more

info for you today.

>

> The Therasuit in conjunction with intensive therapy would help

our kids with their low tone. It works on their core strength, which

helps everything, including their fine motor skills.

>

> They are finding that they can gain up to a year's worth of

progress in the 3 weeks they do the intensive therapy. So for

example, Adrienne's next level of progress would be running and

jumping. After the intensive therapy she should be able to run and

jump!

>

> Insurance has been covering it here under intensive therapy.

>

> Hope this helps

>

> Cyndy

>

[Guest guest]

, When that question was posed, the answer was that they just do very well on their own and maintain their new skills just by using them. They are having some people repeat the intensive therapy in as little as 6 months, but it could be longer in between depending on the child. There's not a lot of research out there on kids with DS, but I'm thinking from the description of the program and the therapists I trust doing it, it can't hurt. Adrienne's birth to 3 PT is the person who will be doing her in Jan and I will ask her to give me more detail and get back to you. Cyndy wrote: Cyndy,What did they say about post-therapy? Do you have to do some kind of "maintenance" therapy so they don't lose what they've gained? I was just wondering what's involved after the intensive part, especially if you have to travel some distance to find a therapist trained in this.Thanks!--mom to Luke (DS) and Jake>> Hi Miriam,> > Sorry it has taken awhile to get back to you, but I went to a presentation on the Therasuit last night and knew I would have more info for you today.> > The Therasuit in conjunction with intensive therapy would help our

kids with their low tone. It works on their core strength, which helps everything, including their fine motor skills.> > They are finding that they can gain up to a year's worth of progress in the 3 weeks they do the intensive therapy. So for example, Adrienne's next level of progress would be running and jumping. After the intensive therapy she should be able to run and jump!> > Insurance has been covering it here under intensive therapy. > > Hope this helps> > Cyndy >

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[Guest guest]

I'm so late in checking in, but like everyone we've had a busy summer. and have been swimming several times a week. Our sitter goes with us a lot (former swim team member) then I find as many other people to go with us too. I try to have them swim at least 4 times a week. They just love the water!!! They both will jump off the diving board into the deep end (they are jumping to a person). Yesterday climbed up the ladder and jumped off the diving board with no guidance from me. On the earlier jumps I was on the board with him, just incase he decided to jump or climb off before he got over the water. They are also swimming short distances and enjoy being underwater looking around. So fun. They also have enjoyed boating.

ESY year is minimal, but they are spending a little time at school. They qualified for 6 hours each, for the entire summer. It was scheduled almost daily for a week and a half, but that didn't work out because I didn't want them missing their private speech and OT. The school then offered some afternoon time, right in the middle of nap time, which I declined. Their final offer was for a few 30 minute session, right at lunch, so I doubt if we will do that. One of the days is right after we are gone for 10 days for vacation. I just can't see that working. The boys are also receiving some

school speech services, since they didn't receive all the speech hours they were suppose to during the year.

Both boys are sight reading. We are using the guidelines from Down's Ed, which emphasizes reading to speak. It has been really fun. They also love coloring and stickers.

They both were diagnosed hypothyroid last week, and started their first dose of synthyroid this morning. At their appointment last week I learned that they are both in the 75th to 95th % ile for ht, on the DS chart, which I thought was good.

I bought the BOB Revolution stroller in April, which I love. The boys had outgrown a standard double stroller, but do not listen and follow directions well enough to each hold my hand when we are out. When I have more than one adult, they each have to walk and hold our hand. That skill is greatly improved, but don't know when I will be able to trust them to walk with me when I'm the only adult.

We also are taking them out to eat at least weekly. And working on waiting in line patiently as I order and get the food. I get someone to go with me, so they are out of the stroller.

Hope everyone is having a good summer. I'm enjoying a few months without IEP meetings.

a,

Mom to and , 4years 4months

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