Re: Check-in Day!, 10/1/2007, 12:00 am

October 1, 2007

I hope eveyone comes up with a fun and informative way

to celebrate Down Syndrome Awareness month! I am

excited to be able to spread awareness in our boys'

pre-k classes and in our small town!!

We are all tuly blessed!

Beth Scahfer ( and Landon's mom!)

--- Multiples-DS wrote:

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October 1, 2007

Hello everyone!!! The twins are doing good, getting bigger

everyday. ph had his first appointment at the Indiana Downs

Syndrome Clinic at St. s in Indianapolis. We go back December

5th. At our appointment on Sept 19 ph weighed 10 lbs 13 ounces.

I am quite impressed with his weight gain he is staying consistently

about 3/4 a pound lighter than . Dr. Escobar says he is doing

great, but did mention his tone is low. I am under the impression

that is lower than he would like to see so that will pose some

challenges ahead. I plan to start cereals this next month for both

boys and they are still receiving only breastmilk that I pump for

them. ph is now beginning to have apnea episodes so we will have

his tonsils and adenoids checked soon. Well, that pretty much covers

it. Take care everyone!!!

>

> Reminder from: Multiples-DS Yahoo! Group

> http://groups.yahoo.com/group/Multiples-DS/cal

>

> Check-in Day!

> Monday October 1, 2007

> All Day

> (This event repeats every other month on the first Monday.)

>

> Notes:

> If you haven't posted in over 8 weeks - you are now at risk for

being removed from Multiples-DS! Please check-in with the group by

posting to the group -- even a small update!

>

> Lurking is NO longer allowed on this group!!

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> Thanks!

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October 1, 2007

Caden & are doing well. is scheduled to have heart surgery next Thursday, so keep her in your prayers. The surgeons are closing her PDA before flu & cold season gets underway. We just got back from the peditrician for our 9 month check-up. Caden weighs 20 lbs and weighs 14.2. She is only 2 inches shorter than Cade. They are both behind developmentally, which can be attributed to their extreeme prematurity. Caden is almost crawling and can sit unassisted for a short period. is also working on crawling and sitting. An ECI physical therapist comes to our home once a month to work with her. Caden's plagiocephally and toricollis are both resolving on their own. So, he won't have to wear a helmet after all. He had surgery at 2 months of age to repair inguinial hernias and a hydrocell. That region of his body is still pretty swollen. We are scheduled to see an urologist in November so see if further surgery is necessary. Other than those issues, they are doing well. We are so lucky to be blessed with two happy babies!

~ mom to (DS) and Caden {Boy/girl twins 9 months old acutal age, 6 months corrected}

Check-in Day!, 10/1/2007, 12:00 am

Reminder from:

Multiples-DS Yahoo! Group

Title:

Check-in Day!

Date:

Monday October 1, 2007

Time:

All Day

Repeats:

This event repeats every other month on the first Monday.

Notes:

If you haven't posted in over 8 weeks - you are now at risk for being removed from Multiples-DS! Please check-in with the group by posting to the group -- even a small update!

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October 2, 2007

Hi All,

Just wanted to drop a line since it's check-in day. I am so grateful

for the support of this group! Welcome to all the new members! You are

definitely in the right place.

It's a very busy time right now. The girls have 15 medical appts

between Sept and Dec not to mention all their private therapies. I'm

pleased with the new school. The girls are in a general education

Kindergarten setting with lots of support coming into the classroom,

plus they stay after for 1 1/2 hours for extra therapies and lunch.

It's a far cry from their placement the last three years in preschool.

All three children weigh 31 lbs. each and it's like a production line at

home, ie, everyone goes potty, washes their hands, eats/drinks, goes

potty, washes hands, plays, snacks, potty, etc., etc. The management

part of staying on top of just the typical household needs and also

handling all the extra special needs stuff is unreal. I'm trying to

integrate their IEP goals into the home setting a lot more. I feel I'm

in my groove and just keep trying to put the little fires out before

they get bigger and bigger. So much to do - so little time... Still

need to get the nutritional/gastro/obstructive sleep apnea/eye /hearing

stuff figured out. So much in the cue at the same time...

Oh well! Hope everyone is enjoying the season.

Regards,

Granata

Mom to Haley & Nikki, 5 yr identical twin girls, both w/DS, and , 3

1/2 yr son

Leesburg, VA

Multiples-DS wrote:

> Reminder from: *Multiples-DS Yahoo! Group

> <http://groups.yahoo.com/group/Multiples-DS/cal>*

>

> Title: Check-in Day!

>

> Date: Monday October 1, 2007

> Time: All Day

> Repeats: This event repeats every other month on the first Monday.

> Notes: If you haven't posted in over 8 weeks - you are now at risk

> for being removed from Multiples-DS! Please check-in with the group by

> posting to the group -- even a small update!

>

> Lurking is NO longer allowed on this group!!

>

> Thanks!

>

> Get reminders on your mobile, Yahoo! Messenger, and email.

> Edit reminder options

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October 2, 2007

Just checking in. Welcome to all the new members. We recently found out has osteoporosis really bad, he had a bone density test done. The cause was a number of things but one reason is that he has been on seizure meds for so many years. We have him completely off tegretol and is on Keppra instead. We are decreasing the valproic acid each week and hopefully can get him off it. He doesn't get the exercise activities since he is limited to how much walking with help he does. At his Doc's appointment yesterday he perscribed fosomax liquid so I can give it in his g-tube once a week. We will see if that will work and how he tolerates it. I was on fosomax for 5 yrs. and then my bone density test had improved so they took me off it. I know they said it could cause in some people jaw decay. But every medicine can cause something in people. I guess it is each individual person as to how the meds do. Anyway other than that has been doing well with his

health. We are getting ready to go to Special Olympic Bowling on the 13th. That is always a fun time. Judy & Bob Parents to 27yrs. the joy of our lives who happens to have ds and multiple disabilities and 35yrs. Granata wrote: Hi All,Just wanted to drop a line since it's check-in day. I am so grateful for the support of this group! Welcome to all the new members! You are definitely in the right place. It's a very busy time right now. The girls have 15 medical appts between

Sept and Dec not to mention all their private therapies. I'm pleased with the new school. The girls are in a general education Kindergarten setting with lots of support coming into the classroom, plus they stay after for 1 1/2 hours for extra therapies and lunch. It's a far cry from their placement the last three years in preschool. All three children weigh 31 lbs. each and it's like a production line at home, ie, everyone goes potty, washes their hands, eats/drinks, goes potty, washes hands, plays, snacks, potty, etc., etc. The management part of staying on top of just the typical household needs and also handling all the extra special needs stuff is unreal. I'm trying to integrate their IEP goals into the home setting a lot more. I feel I'm in my groove and just keep trying to put the little fires out before they get bigger and bigger. So much to do - so little time... Still need to get the

nutritional/gastro/obstructive sleep apnea/eye /hearing stuff figured out. So much in the cue at the same time...Oh well! Hope everyone is enjoying the season.Regards, GranataMom to Haley & Nikki, 5 yr identical twin girls, both w/DS, and , 3 1/2 yr sonLeesburg, VAMultiples-DS wrote:> Reminder from: *Multiples-DS Yahoo! Group > <http://groups.yahoo.com/group/Multiples-DS/cal>*> > Title: Check-in Day!> > Date: Monday October 1, 2007> Time: All Day> Repeats: This event repeats every other month on the first Monday.> Notes: If you haven't posted in over 8 weeks - you are now at risk > for being removed from Multiples-DS! Please check-in with the group by > posting to the group

-- even a small update!>> Lurking is NO longer allowed on this group!!>> Thanks!> > Get reminders on your mobile, Yahoo! Messenger, and email.> Edit reminder options > <http://groups.yahoo.com/group/Multiples-DS/cal?v=75>>> Copyright © 2007 Yahoo! Inc. <http://www.yahoo.com> All Rights > Reserved | Terms of Service <http://docs.yahoo.com/info/terms/> | > Privacy Policy <http://privacy.yahoo.com/privacy/us>>>

October 3, 2007

Hi everyone....whew!!!!! School is back in full force and I am one tired mama. My 14 yr old just had her first homecoming ever!!!!! Very cool....but sad for me cause that means I am getting old!!!!!!!! The kids are all doing well in school so far academically. As for , he is at MRDD for his 3rd yr of preschool. He has already missed a week and a half of school due to another URI or sinus infection. He just finished his ATB and went back yesterday. He loves school....but still grabs the kids or knocks them down or hugs them too hard. He is nonverbal, so to engage another child in play or affection seems more like a wrestling match!!!!!! So sad.....my baby scares kids bigger than him!!!!!! That is all for now.

Deanna mom to

Alyssa, 14

, 11

Jarod, 7

(DS) 4 1/2

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

Check-in Day!, 10/1/2007, 12:00 am

Reminder from:

Multiples-DS Yahoo! Group

Title:

Check-in Day!

Date:

Monday October 1, 2007

Time:

All Day

Repeats:

This event repeats every other month on the first Monday.

Notes:

If you haven't posted in over 8 weeks - you are now at risk for being removed from Multiples-DS! Please check-in with the group by posting to the group -- even a small update!

Lurking is NO longer allowed on this group!!

Thanks!

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October 8, 2007

Things are going pretty well here. The boys are both liking their separate classes at school. It is giving them time to shine on their own and be appreciated for the individuals they are. Last week though, we were sick. was sick Mon and Tues, then was sick Wed, Thurs and Fri.

I got sick on Thurs and had to care for both of them, because I was too ill to get to school. I know we've all been there, but it was miserable. We are also in the middle of finishing our new house, and have a contract on our current home. Yeah! But up until last Wed, our house was showing a lot, so I had to keep it looking perfect. Impossible!! But I guess I did it well enough to get it sold.

So, in the next few weeks we'll be packing and unpacking. Both boys have IEP special review meetings in a couple of weeks.

Yesterday the boys moved up to their age-appropriate class at church. I have 4 volunteers which each assist once a month, and then I am with them (that way they each have an assistant if needed). There are lots of new rules to learn, but the first Sunday went quite well. I'm hoping the volunteers will have so much fun, that they will want to help more than once a month, then I can occasionally attend church too.

Happy Fall to everyone.

a

and , identical twins with DS, 4 1/2 years old

Reminder from:

Multiples-DS Yahoo! Group

Title:

Check-in Day!

Date:

Monday October 1, 2007

Time:

All Day

Repeats:

This event repeats every other month on the first Monday.

Notes:

If you haven't posted in over 8 weeks - you are now at risk for being removed from Multiples-DS! Please check-in with the group by posting to the group -- even a small update!

Lurking is NO longer allowed on this group!!

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October 8, 2007

Good luck with the move.......

-- Re: Check-in Day!, 10/1/2007, 12:00 am

Things are going pretty well here. The boys are both liking their separate classes at school. It is giving them time to shine on their own and be appreciated for the individuals they are. Last week though, we were sick. was sick Mon and Tues, then was sick Wed, Thurs and Fri.

I got sick on Thurs and had to care for both of them, because I was too ill to get to school. I know we've all been there, but it was miserable. We are also in the middle of finishing our new house, and have a contract on our current home. Yeah! But up until last Wed, our house was showing a lot, so I had to keep it looking perfect. Impossible!! But I guess I did it well enough to get it sold.So, in the next few weeks we'll be packing and unpacking. Both boys have IEP special review meetings in a couple of weeks.Yesterday the boys moved up to their age-appropriate class at church. I have 4 volunteers which each assist once a month, and then I am with them (that way they each have an assistant if needed). There are lots of new rules to learn, but the first Sunday went quite well. I'm hoping the volunteers will have so much fun, that they will want to help more than once a month, then I can occasionally attend church too. Happy Fall to everyone.a and , identical twins with DS, 4 1/2 years old

Reminder from:

Multiples-DS Yahoo! Group

Title:

Check-in Day!

Date:

Monday October 1, 2007

Time:

All Day

Repeats:

This event repeats every other month on the first Monday.

Notes:

If you haven't posted in over 8 weeks - you are now at risk for being removed from Multiples-DS! Please check-in with the group by posting to the group -- even a small update! Lurking is NO longer allowed on this group!!Thanks!

Email and AIM finally together. You've gotta check out free AOL Mail!

October 9, 2007

Hi a,

Thanks for the info with your family stuffola. It really helps me

figure out things here. That's just the ticket - getting volunteers to

support the girls individually in Sunday school. They bounce off of

each other with me and wear me out. They also draw too much attention

to themselves in music signing class by running around and dancing crazy

for attention, even dancing in front of the presenter while the other

children " behave " themselves and sign/sing in a quiet group together.

The girls were also recently separated and it's been a rought 10 days

for Haley since she was the one moved. Nikki is doing well, I think. I

hope to meet Haley's teacher and review the girls with both teachers

(separately) soon.

I spent last week " babysitting " a new babysitter. You guys know how it

is - there is such a learning curve in a home like ours with all the

special needs. I felt like I worked so much harder last week because I

had a babysitter. This babysitter left the chain off the front door and

the girls were gone in a flash. No one noticed until I heard noises

outside and realized it was the girls, who had walked around the entire

house and were playing in the back yard. I flipped out! All the

sacrificing and dedication to keep these girls alive and in a flash,

they could have been dead in the street in front of our house.

Unbelievable! Other things she did that bothered me was the way she

would lay them nude and " spread eagle " as she lotioned them up. No

concern for their dignity, security, or warmth. She was undependable

and was late everyday, one day she didn't call for 3 1/2 hours and this

was when we had xrays scheduled to check their bowel contents. The

worst part was her body odor - pardon my frankness - but it was like

strong armpit smell! Yuck! The kids smelled like her. I continued to

cook and chop up the kid's food and did all the bathing and lotioning

because her smell gave me such a headache and I didn't want it all the

over kids anymore. She took video footage of them on her cell phone -

this really bothered us and was the final straw! Babysitting the

babysitter until I have confidence that they know what to do with our

girls in order to help them (not hinder them) is so much work, most of

the time it's just not worth it! Needless to say, she is gone...

Gotta run,

Thanks again,

Granata

Mom to Haley & Nikki, 5 yr twin girls, both w/DS, and , 3 1/2 yr son

mrsimoffshore@... wrote:

>

> Things are going pretty well here. The boys are both liking their

> separate classes at school. It is giving them time to shine on their

> own and be appreciated for the individuals they are. Last week

> though, we were sick. was sick Mon and Tues, then was

> sick Wed, Thurs and Fri.

> I got sick on Thurs and had to care for both of them, because I was

> too ill to get to school. I know we've all been there, but it

> was miserable. We are also in the middle of finishing our new house,

> and have a contract on our current home. Yeah! But up until last

> Wed, our house was showing a lot, so I had to keep it looking

> perfect. Impossible!! But I guess I did it well enough to get it sold.

>

> So, in the next few weeks we'll be packing and unpacking. Both boys

> have IEP special review meetings in a couple of weeks.

>

> Yesterday the boys moved up to their age-appropriate class at church.

> I have 4 volunteers which each assist once a month, and then I am with

> them (that way they each have an assistant if needed). There are lots

> of new rules to learn, but the first Sunday went quite well. I'm

> hoping the volunteers will have so much fun, that they will want to

> help more than once a month, then I can occasionally attend church too.

>

> Happy Fall to everyone.

>

> a

>

> and , identical twins with DS, 4 1/2 years old

>

> Reminder from: *Multiples-DS Yahoo! Group

> <http://groups.yahoo.com/group/Multiples-DS/cal>*

>

> Title: Check-in Day!

>

> Date: Monday October 1, 2007

> Time: All Day

> Repeats: This event repeats every other month on the first Monday.

> Notes: If you haven't posted in over 8 weeks - you are now at risk

> for being removed from Multiples-DS! Please check-in with the group by

> posting to the group -- even a small update!

>

> Lurking is NO longer allowed on this group!!

>

> Thanks!

>

> Get reminders on your mobile, Yahoo! Messenger, and email.

> Edit reminder options

> <http://groups.yahoo.com/group/Multiples-DS/cal?v=75>

>

> Reserved | Terms of Service <http://docs.yahoo.com/info/terms/> |

> Privacy Policy <http://privacy.yahoo.com/privacy/us>

>

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

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>

October 9, 2007

, I can empathize with the "babysitting the babysitter" (like "cleaning up for the cleaners", it's something our husbands -- sorry if there are any male listserve members I'm offending -- will never understand!). However, as you discovered, there are definitely limits -- and, like your sitter last week, there are some that are "beyond repair". (forgetting the other issues, body odor is something I couldn't tolerate as well). I think it comes down to thinking about what's most important -- such as safety, engagement, reliability, treating kids with respect, etc. -- and focusing primarily on those issue first (hopefully you can visit some of what you consider to be the less important things later). During a period when I had some flexibility with time, I had a great sitter -- who was almost always late; but, in our case, that was acceptable (in your case -- or in mine now -- that wouldn't be). The biggest challenge I have

with sitters is having to drop my neatness requirement -- I got very spoiled by a woman who would make my house look better when she left than when she arrived, and I've learned that I have to let that go now. Actually, I once had a live-in who cleaned obsessively -- from way before anyone woke and through the day, she was constantly scrubbing (and my house isn't THAT dirty...) or cooking. I LOVED it... for a couple of days -- but then I realized that, although my house had never looked better(!!!), I was the one who was doing all of this childcare! Regarding the safety issue -- which you cannot, of course, give in on -- I found inexpensive (something like $2 each) door/window alarms at COSTCO. They're easy to affix (adhesive), and there's a little switch that adults or older children can use to disable them. I keep mine on most of the time -- the alarm sound goes off for just a few seconds when I open the door

(it turns off when the door closed) -- and you'll always know when your girls open a door. We accidentally forgot to bolt a back door one night, and it was the alarm that informed me that my daughter had run outside early in the morning (it woke me up). Sheryl Granata wrote: Hi a,Thanks for the info with your family stuffola. It really helps me figure out things here. That's just the ticket - getting volunteers

to support the girls individually in Sunday school. They bounce off of each other with me and wear me out. They also draw too much attention to themselves in music signing class by running around and dancing crazy for attention, even dancing in front of the presenter while the other children "behave" themselves and sign/sing in a quiet group together. The girls were also recently separated and it's been a rought 10 days for Haley since she was the one moved. Nikki is doing well, I think. I hope to meet Haley's teacher and review the girls with both teachers (separately) soon.I spent last week "babysitting" a new babysitter. You guys know how it is - there is such a learning curve in a home like ours with all the special needs. I felt like I worked so much harder last week because I had a babysitter. This babysitter left the chain off the front door and the girls were gone in a flash. No one noticed until I

heard noises outside and realized it was the girls, who had walked around the entire house and were playing in the back yard. I flipped out! All the sacrificing and dedication to keep these girls alive and in a flash, they could have been dead in the street in front of our house. Unbelievable! Other things she did that bothered me was the way she would lay them nude and "spread eagle" as she lotioned them up. No concern for their dignity, security, or warmth. She was undependable and was late everyday, one day she didn't call for 3 1/2 hours and this was when we had xrays scheduled to check their bowel contents. The worst part was her body odor - pardon my frankness - but it was like strong armpit smell! Yuck! The kids smelled like her. I continued to cook and chop up the kid's food and did all the bathing and lotioning because her smell gave me such a headache and I didn't want it all the over kids anymore. She took

video footage of them on her cell phone - this really bothered us and was the final straw! Babysitting the babysitter until I have confidence that they know what to do with our girls in order to help them (not hinder them) is so much work, most of the time it's just not worth it! Needless to say, she is gone... Gotta run,Thanks again, GranataMom to Haley & Nikki, 5 yr twin girls, both w/DS, and , 3 1/2 yr sonmrsimoffshoreaol wrote:>> Things are going pretty well here. The boys are both liking their > separate classes at school. It is giving them time to shine on their > own and be appreciated for the individuals they are. Last week > though, we were sick. was sick Mon and Tues, then was > sick Wed, Thurs and Fri.> I got sick on Thurs and had to care for both of them, because I was > too ill

to get to school. I know we've all been there, but it > was miserable. We are also in the middle of finishing our new house, > and have a contract on our current home. Yeah! But up until last > Wed, our house was showing a lot, so I had to keep it looking > perfect. Impossible!! But I guess I did it well enough to get it sold.>> So, in the next few weeks we'll be packing and unpacking. Both boys > have IEP special review meetings in a couple of weeks.>> Yesterday the boys moved up to their age-appropriate class at church. > I have 4 volunteers which each assist once a month, and then I am with > them (that way they each have an assistant if needed). There are lots > of new rules to learn, but the first Sunday went quite well. I'm > hoping the volunteers will have so much fun, that they will want to > help more than once a month, then I can occasionally attend church

too. >> Happy Fall to everyone.>> a>> and , identical twins with DS, 4 1/2 years old>>>>>>> Reminder from: *Multiples-DS Yahoo! Group > <http://groups.yahoo.com/group/Multiples-DS/cal>*> > Title: Check-in Day!> > Date: Monday October 1, 2007> Time: All Day> Repeats: This event repeats every other month on the first Monday.> Notes: If you haven't posted in over 8 weeks - you are now at risk > for being removed from Multiples-DS! Please check-in with the group by > posting to the group -- even a small update!>> Lurking is NO longer allowed on this group!!>> Thanks!> > Get reminders on your mobile, Yahoo! Messenger, and email.> Edit reminder options > <http://groups.yahoo.com/group/Multiples-DS/cal?v=75>>> Copyright © 2007 Yahoo! Inc. <http://www.yahoo.com/> All Rights > Reserved | Terms of Service <http://docs.yahoo.com/info/terms/> | > Privacy Policy <http://privacy.yahoo.com/privacy/us>>> ----------------------------------------------------------> Email and AIM finally together. You've gotta check out free AOL Mail > <http://o.aolcdn.com/cdn.webmail.aol.com/mailtour/aol/en-us/index.htm?ncid=AOLAOF00020000000970>!>

Sheryl Knapp Literacy Advocates www.LiteracyAdvocates.com

October 9, 2007

Where did you find your sitter? She sounds terrible. We lost our sitter of 2 1/2 yrs this fall, as she left town for college. She was excellent. Sunday night we had a new sitter, but we ended up staying until the boys were fed, because they can be such a challenge, especially since they were just starting to feel better. But honestly, leaving was such an ordeal, it almost wasn't worth it. So yes, I can relate. The boys did pick up 2 first year OT students for babysitters at the Buddy Walk a couple of weeks ago. I need to have them come over and see if they will be a good match.

My was the one who was moved out of his original class, which he was in for 5 months last year, and he is happy too. Hope Haley adjusts well. The teacher makes all the difference in the world.

Take care,

a

Hi a,

Thanks for the info with your family stuffola. It really helps me

figure out things here. That's just the ticket - getting volunteers to

support the girls individually in Sunday school. They bounce off of

each other with me and wear me out. They also draw too much attention

to themselves in music signing class by running around and dancing crazy

for attention, even dancing in front of the presenter while the other

children "behave" themselves and sign/sing in a quiet group together.

The girls were also recently separated and it's been a rought 10 days

for Haley since she was the one moved. Nikki is doing well, I think. I

hope to meet Haley's teacher and review the girls with both teachers

(separately) soon.

I spent last week "babysitting" a new babysitter. You guys know how it