Re: Update

August 24, 2000

Glad to hear 's doing well. He's moving right

along in getting those teeth -- my little Shane didn't

cut his first tooth till he was 9 months old!!

As far as your question about having genetic testing before

becoming pregnant, we did not. Never even occurred to us.

We also didn't have any special tests when I became pregnant.

When we met with the geneticist after Shane was born, and

she took my and my husband's history, she said we were

not " carriers " and I have no greater chance of having

another child with Downs than any other woman my age.

The fact that I had a child with Downs does not increase

my chances of having another.

Deborah (mommy to Logan 3, and Shane 14 months (MDS) who

is crawling all over now and pulling himself

up to his knees, and will FINALLY let us put

something cold in his mouth!!)

>Message: 1

> Date: Wed, 23 Aug 2000 15:18:55 +1000

>

>Subject: (MDS) update

>

>Hello all,

> Sorry i haven't been in contact lately but we've been busy

>busy busy. is almost holding up his own head by himself and is

>pulling himself up into a sitting position.He's almost got his first two

>teeth coming through on the bottom and he sleeps from 7pm until 5 or6am

>and he's only 31/2 months old. I've started him on his first little bit

>of rice cereal and he's loving it. We have his next hospital date which

>will be on the 12th October and that will be for correction of his hard

>palate. We've also seen a case worker to see if he needed intervention

>although she doens't want to see him for another 12month. His

>orthodonttist doesn't need to see him until after his next op and we've

>still yet to see the cardiologist that will be in November.

>other than that he's going along great guns and is in the above average

>height for his weight chart and his head is growing at a normal rate.

> But enough about . There is a question that i would

>like to ask the parents out there who have had other children.Did you have

>the genetic tests done before you fell pregnant and if not how much of a

>risk was there for you to have another child born with MDS?

>

> Mum to 31/2months MDS

>

>[This message contained attachments]

>

>________________________________________________________________________

October 20, 2000

hi karen,

just to let you know i've read all your update messages on joshua and he is a wonderful brave little boy.

i just what to say to you and your husband what good parents you are ,i too had problems with katie when she was little but the housework can wait as i wanted to be with her all the time when she was sick,and funny enough now i hate the housework.

take care

and love to you all

judy mom to katie age 8 mds

judy ----- Origijust let you know i've read all your updates on inal Message -----

From: Terry Knight

To: MosaicDSegroups

Sent: Monday, October 16, 2000 5:49 AM

Subject: Update

Hi everyone,

I thought i'd give an update on . His first operation for his cleft lip and palate went extremely well and he was due to go in for his second op on the 12th Oct,(We fasted him, took him to the hospital and waited for three hours over his schedule time for his op before we were told that the doctor was still in surgery with his first patient and that Josh would have to be booked in at another time! I had five seconds of anger before i realised that i would never deny another child the great work and attentionfrom this surgeon)so now he is booked in on the 26th Oct.He'll be getting his new roof to his mouth. They will take the extra skin that is at the back of his gums(where the wisdom teeth com through)stretch it across to the middle and sew it up.A bit like darning a sock!

Still this hasn't stopped him from eating his solids, he has a bit of bannana and rice cereal for breakfast and puree pear for lunch and some potato and vegies for dinner. He holds his own bottle and water cup too.

We enrolled him into the Australian Institute of Learning and Cognitive Development and they are as interested with him as he is with them.Basically they help me teach all of his milestones and they have counsellors on hand if i find i'm having difficulty teaching him and they help me try different ways of doing this. He's not had any major problems with learning any of his milestones as of yet and i find that by taking him to a play group once a week is great for his interaction with other kids as well as parents. I set aside specific times of the day for "teaching lessons" and i find that during these times he has learnt to be very concentrated on what we do together and if taken out of this routine he gets a bit unsettled but loves to fall back into his routine quickly the next day.

He's an excellent sleeper, he will go down at about 6:30pm and won't get me up until 6:00 6:30am God bless him!

At the moment he's lifting his head to try and pull himself up into a sitting posy and he rolls around everywhere on the floor. I can get him up onto his elbows and but it takes a bit of work from both of us stretching out his arms to push himself up to get ready to crawl. And when he tires of that he just lays on his tummy kicking his legs and swimming with his arms.

Every morning when i get up i feel slack because theirs a basket or two of ironing or washing or some other chore that i don't get done because i spend extra time with but every night when i put him to bed kiss him goodnight and tell him that i love him and EVERY night he smiles back at me that thought goes straight back out of my head.

So basically is travelling along pretty well.

Even though you don't hear from me often i read all mail and my prayers and well wishes go to all families.

Will giv another update after 's next op

P/s A tip for training childrens concentration, I can't say enough about tracking skills. Use their favourite toy or a bright coloured object or even just wiggling your fingers.Moving from left to right up and down and around Josh will watch my fingers wiggle around for hours if i let him and this also helps train the eyes for reading a line of words(A major reason for why children have difficulty learning how to read is because they never did any or enough tracking skills when they were young!)

mum to 51/2 months MDSWon't you please consider adding your personal story on the MDS website today? http://www.mosaicdownsyndrome.com*************************************************NEW MDS MESSAGE BOARD - http://www.mosaicdownsyndrome.com/discus*************************************************

February 20, 2001

HI EVERY ONE,

Please be proactive about your children! If we don't, no one else will. I

have visited every scenario in the development of Sherri's (14-MDS)

educational process. I have went from being adamant about her services being

provided, to letting the professionals handle it, (That only lasted 2 weeks)

and back to doing daily checks on her accommodations. I don't think it is

because the staff doesn't care about what they are doing, I think sometimes

they aren't sure what to do. I have learned to have the IEP written in very

simple language so that all teachers interpret it the same way. I have also

found it helpful to encourage the teachers and staff to see Sherri as an

individual and not as a person with Down Syndrome- It does no good to tell

them that she is Mosaic, and functions very well, They just pat me on the

back! they have a preconceived notion of what they believe Down Syndrome is.

I should say that some of them have this perception, not all. As a parent of

a child with a disability, I want them to see her as the individual that she

is. There are wide variances in Down Syndrome, as with MDS. I have found that

'I have to help them understand that.

Anyway, I didn't mean to get off on that tangent! Sorry!

Misty,

That OT needs to come to your home. Are her services provided by the county

or school system? Insist that she get her services. ALL children need all the

intervention they can get. Your taxes pay for these services, insist that she

gets them!

Is it obvious that I am NOT having a good day!

Love to all,

Glenda Beasley

Mom of Sherri-14,MDS and -10 all boy

February 20, 2001

reminds me greatly of Kaitee at age 2 !! That independant/stubborn streak will grow greatly and be as amusing as it is frustrating!!!

Kaitee will be 4 March 29th and she as progressed so far, in my eyes, Her speech and cognitive skills are still way behind, but I can see great hope for those to catch up too, there is no way a child can be this naughty and not grow to great plataeus!!

Her new favorite past time is to stand on the tank of the toilet with the cat, hold the cat by the ears over the toilet and and drop it in ----- when caught looks innocent and says I's mouse him's cat ( to much tom and jerry)

fine motor skills ON LEVEL her new hair cut shows how well she can make sissors go snip snip, two nice stripes down the top of her head , scalp lenghth...........her gross motor skills are way behind, she still lacks the the cordination of bike riding, but with power wheels transportation isn't a problem, she has difficulties running ( which enables this old mom to keep up) her speech is still her greatest delay, but maybe that is okay, cause she has become daddy's little girl here lately and hangs in the garage, and goes towing with him every day ----- perhaps it is for the best they can't understand what she is saying !!!

I can't praise Kaitee's teachers and therapist enough, they are so in tune to this child, I feel like I have seven extensions of myself caring for her.

Kaitee first started school at 2.5 years of age, she just met the goals that were set for her first IeP last month, instead of just truding a long at any ole level , they called together a emergency IEP meeting and we set up new goals for kaitee, even though she wasn't promoted into the four year old class level, it doesn't mean she won't catch up before the year is over to move up. She is now receiving 5 hours of speech per week, and our goals are geared at her socialization skills, and her behavior problems, we have added a private aide for her, so that when she gets into one of her little moods she can be easily moved away from the other kids and set to a task she can deal with on her own, under supervision (only the foolish leave kaitee unsupervised!!) this seems to work well and she is starting to cooperate more in the larger group activities and the socialization of her peers. One of her strongest points is her capabilites to draw, she deals mainly with stick figures, but they are very detailed and very percise. She draws turtles that leave nothing to the imagination, and at a recent testing took the letter H and made it into a house.

I did give them the reports when I found out kaitee had mossiac down syndrome, I gave them the reports when I found out she was hearing impaired, however I asked them not to focus on these reports but to focus on kaitee ...... well that didn't work the teacher made the remark to me that kaitee didn't act like a "typical down syndrome child" That teacher is no longer a part of kaitee's education plan--- it is now written into the IEP (watch out people mama's a real bit**) no not really, it is written in the IEP that I chose to give the reports to the school in the event that maybe down the road somewhere the knowledge will be beneficial to the educators, however I would be greatly appreciative if you didn't focus on her dx, but rather kaitee as a individual.......... meet her individual needs and you will meet the needs of her dx. Kaitee is typical nothing, she is herself, and has kaitee grows Kaitee will become what and who Kaitee was meant to be.

debbi

February 20, 2001

Hi Darlene, I just wanted to say it's not a very good excuse from her OT

saying she's testing mildly for delays. Most kids with MDS test at a close

level with thier peers in the beginning, its when they get older that you

really start seeing delays. It doesn't matter how far she needs to drive,

that is her job. Living here in West Texas, so many small communities,

these people here have to drive a lot further, and thats just a part of the

program offered. Cody's OT tried to tell us the same thing, at about the

same time, and we just requested another person. With Cody testing better

than average, we felt like they didn't want to take the time with him, but

found it was just the attitude of the OT we replaced. Even today ( he's 8) I

want everything he is entitled too. It just makes my hair stand on end to

hear these stories, so sorry if I'm stepping out of line here, but

deserves everything that is offered, without any excuses...Anyway, glad to

hear she is doing great! Misty, mom to Cody (8mds)

Update

> Hello everyone -

>

> It has been a whirlwind the last 4 months and I just wanted to catch my

> breath. just turned 2 on 2/8/01.

>

> My husband, , quit his job in December to stay home with our 2 kids.

> 's needs was one of the over-riding factors in his decision to

become

> a stay-at-home parent and the changes it has made in are

incredible.

> (Please accept this as a statement of our individual circumstances and not

a

> reflection on anyone else's choices or situation.)

>

> was having issues with her weight, her stamina and her speech.

> Daycare was making the situation worse since they had breakfast, snack,

> lunch, snack - There was food out on the tables more than 1/2 the day.

The

> room that she was in was small (normal size for a day care about 12'x18').

> She did not have much motivation to run around, she would plant herself in

> front of the toy chest.

>

> 's stamina has improved significantly (since she now tries to keep

up

> with her 4 year old brother who is all over the place). brings the

> kids to the mall once a week and they walk the mall before it opens so

that

> burns off steam and increases her stamina. Her weight has

> dropped from 90% to 55%.

>

> She is much more interested in books now (however only Blue's Clues,

> Clifford & Mr. Brown Can Moo) and she has begun to make many more sounds.

> Still only a few words. I realize some of this is just due to normal

> development, but I also know that we did not have the time to do the

> exercises that her Therapists were recommending as often as they

recommended

> we do them. I was able to do them once a day whereas now does 3/4

> times a day but spread out so she does not even notice she is getting a

> workout.

>

> 's OT has been discontinued. I am not sure about this as this

> happened at the same time that we asked the therapists to start coming to

> our house as opposed to the day care. The day care is in town and we are

in

> a rural area about 25 minutes further out into the country. I am torn

> because I am concerned that the therapist discontinued treatment because

she

> did not want to drive all the way to our house. The OT told us that

> tested at 18 months (when she was 20 months) and since that is not a

> significant delay there was no need for OT. The only items she tested low

> on were strength issues which the PT could do. I still wonder if the OT

was

> discontinued because did not need it or because the OT did not want

> to drive to our house.

>

> still gets PT once every other week and the Special Teacher once a

> week. We are going to have her speech evaluated sometime this month - but

> that appointment has not been set up yet. All of her friends definitely

> speak many more words than she does but was a slow talker as well.

>

> is definitely starting to assert her independence. If she wants

> something, it is very hard to distract her from it. My low maintence

child

> has revved it up a notch - which is good - more difficult but I don't want

> her to be a push over.

>

> We are going to start this year transitioning to the school system. I am

> still not sure if I want her diagnosis on her permanent records - one

reason

> is that it may lower the expectations of her teachers and I don't want

that.

> But it will make it easier for us to get services if she needs them - but

> what do I sacrifice? I still question my judgement in telling everyone of

> her diagnosis - I did so I could get support but at what cost to ?

>

> All in all, I am very proud of my little girl (can you tell?) I am aware

> that there may be a bumpy road ahead of us - I can't bear the thought of

her

> being teased for being different. But we will make it through.

>

> Darlene

> Mommy to (2) and (4)

>

> P.S. - I got a letter from ABC in response to my letter re: Bill Maher.

And

> the following week TV Guide put him in their Jeers column for his

comments.

>

> Won't you please consider adding your personal story on the MDS website

today? http://www.mosaicdownsyndrome.com

> *************************************************

> NEW MDS MESSAGE BOARD - http://www.mosaicdownsyndrome.com/discus

> *************************************************

>

February 20, 2001

Misty -

I worry about that - We had a wonderful OT then she went out on Maternity

and we got this one - she is nice but very flaky (missing appts, always

late, appts scattered all over the calendar etc..). I wonder about calling

First Step and asking if is back from Maternity.

Darlene