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kaysdee Member
Joined: 03 Jun 2005
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Last Visit: 31 Oct 2006 Posts: 50
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Posted: 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](../phpbb2/images/smiles/icon_wink.gif) . 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
Katie Ella - 6 July 05
Third and final baby due 16th March 2007
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kaysdee Member
Joined: 03 Jun 2005
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Last Visit: 31 Oct 2006 Posts: 50
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Posted: 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
Katie Ella - 6 July 05
Third and final baby due 16th March 2007
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kaysdee Member
Joined: 03 Jun 2005
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Last Visit: 31 Oct 2006 Posts: 50
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Posted: 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
Katie Ella - 6 July 05
Third and final baby due 16th March 2007
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CAmommy2KJ Super Moderator
Joined: 09 Jan 2005
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Last Visit: 31 Oct 2006 Posts: 4041 Location: Clarksville, Tennessee
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Posted: 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
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Last Visit: 30 Oct 2006 Posts: 3731 Location: Santa Monica, CA
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JenBrock'sMom Super Member
Joined: 28 Sep 2005
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Last Visit: 31 Oct 2006 Posts: 3272 Location: Des Moines, Iowa
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Posted: 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
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Posted: 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 Super Member
Joined: 12 Jun 2003
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Last Visit: 22 Oct 2006 Posts: 1988 Location: Athens, Alabama
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Posted: 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!
_________________ 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
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Posted: 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
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Last Visit: 31 Oct 2006 Posts: 3237 Location: NC
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Posted: 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 Super Member
Joined: 27 Oct 2005
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Last Visit: 31 Oct 2006 Posts: 1385 Location: Dublin, Ireland
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Posted: 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!
_________________ Linda & John
mom to Hannah Kate (Age , Robert (04/16/2004, DS)
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hayden's mom Senior Member
Joined: 06 Sep 2005
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Last Visit: 30 Oct 2006 Posts: 880 Location: Round Rock, Texas
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Posted: June 08 2006, 11:17 AM Post subject:
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Your kids are beautiful!!!! Welcome back.
_________________ Mommy to:
Holden 6
Hayden 2 (ds)
Jacie 1
And the Angels Danced the day you were born
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mommartin Senior Member
Joined: 02 Jun 2005
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Last Visit: 24 Oct 2006 Posts: 679 Location: California
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Posted: 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.
_________________ Katie
Jerry 1/02,Bethany 8/03(cp)Faith 5/05 (ds)
http://katies.stayinhomeandlovinit.com
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jayne Senior Member
Joined: 05 May 2006
Last Visit: 20 Oct 2006 Posts: 212 Location: Kent, UK.
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Posted: June 08 2006, 5:55 PM Post subject:
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Aarh your babes are so gorgeous and cutesy! Welcome ![Smile](../phpbb2/images/smiles/icon_smile.gif)
_________________ 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; Senior Member
Joined: 06 Mar 2006
Last Visit: 31 Dec 1969 Posts: 238 Location: El Monte, CA
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Posted: 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.
_________________
[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
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Last Visit: 31 Oct 2006 Posts: 5028 Location: West Midlands UK
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Posted: 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
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Last Visit: 31 Oct 2006 Posts: 755
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Posted: 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 Super Member
Joined: 22 Feb 2006
Last Visit: 31 Oct 2006 Posts: 1609 Location: Texas
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Posted: 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 Senior Member
Joined: 08 Dec 2004
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Last Visit: 30 Oct 2006 Posts: 407 Location: Northeastern Ohio
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Posted: 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
_________________ Ava & John
Alexandra 7/22/92, Samantha 3/05/94, Olivia 9/05/00, Daniel (Ds) 11/06/04
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mesmom Senior Member
Joined: 12 Oct 2005
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Last Visit: 26 Oct 2006 Posts: 542
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Posted: 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.
_________________ "All the darkness of the world, can not put out the light of one small candle." Author unknown
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Josiesmom Super Member
Joined: 14 Dec 2004
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Last Visit: 31 Oct 2006 Posts: 1166 Location: Waterloo, Iowa -- USA
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Posted: 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 Super Member
Joined: 28 Sep 2005
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Last Visit: 31 Oct 2006 Posts: 3272 Location: Des Moines, Iowa
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Posted: 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.
_________________ JenBrock'sMom & wife to Jay
Brock 7/28/05
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jacknbellasmama Senior Member
Joined: 19 Apr 2006
Last Visit: 31 Oct 2006 Posts: 362 Location: Huntington Beach, CA
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