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kaysdee
Member


Joined: 03 Jun 2005


Last Visit: 31 Oct 2006
Posts: 50

PostPosted: June 02 2006, 9:51 AM    Post subject:
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Hi there,

I registered last year and posted a little, but since the birth of my daughter last July, my time has been almost zero.

Anyway, Jack is now 2.5 years old and he is trouble, lol!! Nah, seriously, he has made progress in lots of areas, he can now sit himself up from lying down, he can pivot while sitting, in the past two weeks he is making lovely advances in copying and pointing to his hair if I ask where it is, his nose...he has two Makaton signs. Unfortunately, he also hasn't made progress at the same time. He doesn't have any words, isn't mobile, no crawling, standing, not on his hands and knees, anything like that. He also remains 100% g-tube fed for food (well, pediasure) and drinks (um, water). We're meeting his specialist this afternoon to discuss fundoplication as his reflux is still very bad. His tone remains extremely low and I think the combination of DS and CP makes things very difficult for him.

We are also having major behavior problems for around the past 6 months. He's not so bad at home, but take him ANYWHERE outdoors - for a walk, to the shops, doctors, on the bus, he screams and screams and cries and he will act like this the entire time until you leave. This means we have next to none family time as it is so stressful. He had a CT scan recently as we were unsure if it was shunt issue and he had increased pressure. he has plagiocephaly and they weren't sure about craniosyntosis, but this came back ok. His hearing is underdermined (my next thought is it is a sensory issue), I know he can hear as he responds to sound and does his signs on verbal command, but I don't know as to what range/frequency he can hear. From a couple of years ago really, he's had fluid in his ears. They're tried two times to fit tubes, but they cannot get even the tiniest ones in, so it could be that all the sounds are amplified and it's upsetting him. Or, he may just be being two!

Anyway, it's quite difficult to care for him. He brings me so much joy and I love him to death, but he is not a physical child. He doesn't give me hugs and kisses and I get a bit down sometimes that he lights up when DH comes home and seems annoyed with me half the time. I know it's because I'm always here, but still. We're looking to start him at nursery in September, part time, which I think he will love. It is at a special needs school so he will be able to have all his therapies there (I sometimes have appts 4 times a week with one thing or another, totally hectic). He is so lovely though. We go to a Makaton communication group and a hydrotherapy group and a local toy library and he is such a social chap. His all time favorite thing to do is to sit infront of a mirror, he is unbelievably cute. He's wave and make all kinds of hand movements and babble to himself non-stop!

His little sister is one next month! I cannot believe where the time goes. He was frightened of her at first, but they love each other. Just the other day (very new thing), Katie was eating a baby biscuit (cookie), he was sitting next to her and he took it off her (lol), but then, he gave her it back! He tried to pick up the bits she was dropping and give her those too, it was so sweet. Since normally, he teases her with toys and doesn't like her taking his things. She is a little angel too, although she is also a bit behind. She is 11 months old next week and all she can do is sit (if I sit her), she *barely* rolls, she can't stand even if I support under her arms, no scooting, pulling up, crawling, blah, blah, so it's like I have twins. I'm constantly asked if they're twins Wink. She can eat though! She drinks her own bottles, cups and finger foods. She is 100% opposite to him, he wants nothing to do with food (cries and chokes) and she cries when her food is gone or she sees someone eating and she's not.

Sorry this is so long, lots have happened! I'm really going to try to keep up. I'll post some new pictures shortly.

_________________
Kelly, 29

m/c 5w5d, Oct 02
m/c 10w3d, Jan 03
m/c 10w3d, Sep 04

Jack - 21 Nov 03
Down syndrome, Cerebral Palsy, hydrocephalus, CAVSD heart defect & talipes (clubfoot). Tube fed since birth.
Perfect little boy Smile

Katie Ella - 6 July 05



Third and final baby due 16th March 2007
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kaysdee
Member


Joined: 03 Jun 2005


Last Visit: 31 Oct 2006
Posts: 50

PostPosted: June 02 2006, 9:51 AM    Post subject:
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Just noticed my signature - yep, they have DEFINITELY changed since then!!

_________________
Kelly, 29

m/c 5w5d, Oct 02
m/c 10w3d, Jan 03
m/c 10w3d, Sep 04

Jack - 21 Nov 03
Down syndrome, Cerebral Palsy, hydrocephalus, CAVSD heart defect & talipes (clubfoot). Tube fed since birth.
Perfect little boy Smile

Katie Ella - 6 July 05



Third and final baby due 16th March 2007
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kaysdee
Member


Joined: 03 Jun 2005


Last Visit: 31 Oct 2006
Posts: 50

PostPosted: June 02 2006, 9:55 AM    Post subject:
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_________________
Kelly, 29

m/c 5w5d, Oct 02
m/c 10w3d, Jan 03
m/c 10w3d, Sep 04

Jack - 21 Nov 03
Down syndrome, Cerebral Palsy, hydrocephalus, CAVSD heart defect & talipes (clubfoot). Tube fed since birth.
Perfect little boy Smile

Katie Ella - 6 July 05



Third and final baby due 16th March 2007
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CAmommy2KJ
Super Moderator


Joined: 09 Jan 2005


Last Visit: 31 Oct 2006
Posts: 4041
Location: Clarksville, Tennessee

PostPosted: June 02 2006, 10:16 AM    Post subject:
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I remember you! Welcome back! The kids are adorable!!! Sounds like you really have a full plate. I think the nursery school is a good idea... it's hard not to ever do family time... Still, it sounds like Jack is a sweetie and you are doing a fantastic job!!! Please stick around, I can't wait to hear how he likes school!

_________________
~Renee~
Mommy to:
Kassidy (11.4.99)
(My soccer playin drama queen)
Kameron (11.3.01)
(My soccer playin cookie monster)
Kennedy (5.16.04)(ds)
(Lookin cute in her designer genes)
Baby K (EDD:5.17.07)
(Whatever will we name him/her?)


D is for Down syndrome
Kennedy's caringbridge page
Our family website
Down syndrome awareness products!
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naomid
Super Member


Joined: 21 Apr 2003


Last Visit: 30 Oct 2006
Posts: 3731
Location: Santa Monica, CA

PostPosted: June 02 2006, 12:36 PM    Post subject:
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Yep, the kids have certainly changed!! and OMG they are so cute, I can never get cute pictures of both my kids together.

With my 2nd I was expecting all the milestones to be hit right when the book said it should happen, but every baby is on it's own schedule. Kieran sat right at 9 months (like his brother), didn't crawl 'till 11 months and didn't walk 'till 16 months. I was starting to think that I'd be taking them both to PT.

The behaviour stuff sounds like it could be sensory or could just be an I'm 2 and don't know how to communicate my needs thing as well.

Good luck with school, you'll have to let us know how it goes.

_________________
Naomi
Mum to Callum (DS) 3/03 and Kieran 8/04
Read all about us
Our Photo's
Our Video's

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JenBrock'sMom
Super Member


Joined: 28 Sep 2005


Last Visit: 31 Oct 2006
Posts: 3272
Location: Des Moines, Iowa

PostPosted: June 02 2006, 1:03 PM    Post subject:
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Well gosh - i have no idea why you don't have more time to post on here lol! Wow - you must have quite a schedule. Jack's smile is just gorgeous and Katie is a sweetie.

It sounds like the nursery for Jack is a great idea - you really do need free time - it makes a big difference in your own emotional health. Take care and big hugs to your family.

_________________
JenBrock'sMom & wife to Jay
Brock 7/28/05

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Tigger
Super Member


Joined: 28 Jan 2006

Last Visit: 31 Oct 2006
Posts: 1564
Location: NSW, Australia

PostPosted: June 03 2006, 10:22 AM    Post subject:
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Wow those are some fantastic pics. What excellent smiles your kids have got.

Welcome back to downsyn. Jack sounds like he is definitely a 2 year old. They don't call it the terrible two's for nothing.

Hope you can get some time for yourself in the near future.

_________________
Karyn
Mum to Nikki (19 Jul 89), Stefanie (3 Sep 96), Joel [18 June 98] and Talitha (DS) (18 Nov 05) AVSD/PDA repaired 23 March 06

"I will praise You, for I am fearfully and wonderfully made; Marvelous are Your works, and that my soul knows very well." Psalm 139:14
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NattysMommy603
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Joined: 12 Jun 2003


Last Visit: 22 Oct 2006
Posts: 1988
Location: Athens, Alabama

PostPosted: June 03 2006, 11:51 AM    Post subject:
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They are both just precious. Glad to see you back. I do remember you as I had just had my son when you 1st started posting. Thanks for updating us. They are adorable!

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Tracy
Proud momma of
Natalie Marie 6/8/03,
Tyler Slayton 4/15/05
Baby 3 EDD 1/3/07




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kellyrimmer
Super Member


Joined: 14 Feb 2006

Last Visit: 24 Oct 2006
Posts: 2093
Location: Atwood, TN

PostPosted: June 05 2006, 3:46 PM    Post subject:
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Welcome back and Your kids are just beautiful.

_________________
Kelly Rimmer
Mom to
Paige 11-12-92
Aaron 06-16-99
Alexis 08-19-05 (DS)
Baby #4 11-04-06
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ajbest
Super Member


Joined: 13 Apr 2005


Last Visit: 31 Oct 2006
Posts: 3237
Location: NC

PostPosted: June 07 2006, 2:14 PM    Post subject:
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Jack and Katie are SO adorable! i love the bath picture - what a smile! glad you found time to update us on your angel. sounds like Jack is doing well. i bet he'll enjoy going to nursery in the Fall. aj

_________________
Momma to Janna (AVCanal/Mitral Valve Repair-T21-02/02/05)
Wife to Joseph (TOF & still thriving)



"Where there is charity and wisdom, there is neither fear nor ignorance." St. Francis of Assisi
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LinMac
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Joined: 27 Oct 2005


Last Visit: 31 Oct 2006
Posts: 1385
Location: Dublin, Ireland

PostPosted: June 07 2006, 3:11 PM    Post subject:
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Kelly

Welcome back!

Have to say your kids are something else....just adorable!
Looking at them brings a smile to my face!
Hope Jack likes his new school.
Be sure and tell us all about his first day.

Thanks for posting the pictures of Jack and Katie....they are wonderful!

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Linda & John
mom to Hannah Kate (Age Cool, Robert (04/16/2004, DS)
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hayden's mom
Senior Member


Joined: 06 Sep 2005


Last Visit: 30 Oct 2006
Posts: 880
Location: Round Rock, Texas

PostPosted: June 08 2006, 11:17 AM    Post subject:
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Your kids are beautiful!!!! Welcome back.

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Mommy to:
Holden 6
Hayden 2 (ds)
Jacie 1
And the Angels Danced the day you were born

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mommartin
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Joined: 02 Jun 2005


Last Visit: 24 Oct 2006
Posts: 679
Location: California

PostPosted: June 08 2006, 4:35 PM    Post subject:
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Welcome back. I remember you because your daughter has my name. LOL. Anyway glad your back and let us know how Jack does with nursery school.

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Katie
Jerry 1/02,Bethany 8/03(cp)Faith 5/05 (ds)





http://katies.stayinhomeandlovinit.com
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jayne
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Joined: 05 May 2006

Last Visit: 20 Oct 2006
Posts: 212
Location: Kent, UK.

PostPosted: June 08 2006, 5:55 PM    Post subject:
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Aarh your babes are so gorgeous and cutesy! Welcome Smile

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Colin and Miranda parents of Bryan (DS) 29/01/03 and Kayla 14/3/05.

"Only the most sensitive fish discover the wetness of water."


http://makebelievers.blogspot.com/
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gloria&sammy;
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Joined: 06 Mar 2006

Last Visit: 31 Dec 1969
Posts: 238
Location: El Monte, CA

PostPosted: June 08 2006, 6:03 PM    Post subject:
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Hi my name is Gloria and mom to Sammy 8 months. You'r kids are soo cute. I love their smile.

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[red]Samantha Victoria*10/11/2005 (DS)[/red]
[url=http://www.TickerFactory.com/]

[/url]
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** Hannah's mom ** UK
Super Moderator


Joined: 03 Jun 2004


Last Visit: 31 Oct 2006
Posts: 5028
Location: West Midlands UK

PostPosted: June 19 2006, 8:07 PM    Post subject:
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sorry Kelly I just went back and realised I missed this (I've PM'd you )

didn't realise you were from the UK either

welcome back and love the pictures

Jack is a real cutie

_________________
Jo mummy to Hannah (DS ) who was 3 in July 05,Rebecca who was 2 in Jan 06 and Rachel born 6th April 2006


My beautiful girls



Please visit Hannah's webpage read all about her journey
Hannah's Video
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Grandma to Olivia
Senior Member


Joined: 24 Sep 2004


Last Visit: 31 Oct 2006
Posts: 755

PostPosted: June 21 2006, 7:25 PM    Post subject:
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Welcome back! Your children are so cute!!

_________________
Cindy
Olivia's Grandma

Bitter are the tears of a child: Sweeten them. Deep are the thoughts of a child: Quiet them. Sharp is the grief of a child: Take it from him. Soft is the heart of a child: Do not harden it. - Pamela Glenconner
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McKenna
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Joined: 22 Feb 2006

Last Visit: 31 Oct 2006
Posts: 1609
Location: Texas

PostPosted: June 22 2006, 8:15 PM    Post subject:
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I always miss this section of the forum! Jack is adorable. I have a daughter who also has a g-tube. She's started eating, but refuses to drink. Darah is 22 months old and will have a baby brother this November.

Welcome back!!

_________________
McKenna
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Darah Faith 11 Aug 04 (DS and AVSD repaired)
Baby due 18 Nov 06
Darah's Website



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Ava
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Joined: 08 Dec 2004


Last Visit: 30 Oct 2006
Posts: 407
Location: Northeastern Ohio

PostPosted: July 20 2006, 4:38 PM    Post subject:
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Hi kelly~ Must have missed you, Jack is really growing up so fast!! what an adorable little boy and Katie, what a princess.
I do hope to hear more about them both, I am going to try to PM you later....

ava

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Ava & John
Alexandra 7/22/92, Samantha 3/05/94, Olivia 9/05/00, Daniel (Ds) 11/06/04


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mesmom
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Joined: 12 Oct 2005


Last Visit: 26 Oct 2006
Posts: 542

PostPosted: July 20 2006, 9:51 PM    Post subject:
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Hello and welcome back. Your kids are absolutely adorable. I am sure school will be a great thing for both of you. What a great way for both of you to spread your wings. Can't wait to hear all about both of your journey.

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"All the darkness of the world, can not put out the light of one small candle." Author unknown
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Josiesmom
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Joined: 14 Dec 2004


Last Visit: 31 Oct 2006
Posts: 1166
Location: Waterloo, Iowa -- USA

PostPosted: July 20 2006, 10:43 PM    Post subject:
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They are both absolutely beautiful. They sure have changed. It does sound like you have a full plate, but it sounds to me like you are the best mommy for the job. School will be a great step I am sure.

_________________
Brigitte
Wife to Wonderful Husband -- Joe
Mommy to Josie (DS) 10/27/04
and Katie 11/30/05
"Most People Only Dream of Angels..... I Get to Hold Both of Mine!"

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JenBrock'sMom
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Joined: 28 Sep 2005


Last Visit: 31 Oct 2006
Posts: 3272
Location: Des Moines, Iowa

PostPosted: July 21 2006, 10:06 AM    Post subject:
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Welcome back - the new photos are great - such big smiles. My son goes to daycare part time - and I feel that it has really helped him to be social and learn new things. We are also booked with therapy - but he's my only child so it is manageable for now. Take care and post when you can.

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JenBrock'sMom & wife to Jay
Brock 7/28/05

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jacknbellasmama
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Joined: 19 Apr 2006

Last Visit: 31 Oct 2006
Posts: 362
Location: Huntington Beach, CA

PostPosted: July 22 2006, 12:43 AM    Post subject:
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loved the update...your kiddos are soooo cute!!!!! my son's name is jack too. he is 3 months old and the joy of our lives...hope to hear more from you!

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Wife to John
Mommy to Keeley 9/22/01, Bella 2/19/04, Jack Ryan 4/7/06 (DS)
http://www.carepages.com/ServeCarePage?cpn=JackRyanClark&extrefid=tlcinvite
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