A Forum For Those Touched By Pallister-Killian Syndrome
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Tom Amber and Shelby
- 22, Female
- Metamora, IL
- United States
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- Blog Posts (9)
- Discussions (20)
- Events (1)
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- Photos (136)
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Tom Amber and Shelby's Discussions
Anterior Anus
Replied Sep 4
Anterior Anus
Replied Aug 28
Facebook!!
5 Replies
Started this discussion. Last reply by Bec Paton Jul 11.
Tom Amber and Shelby's Events
Shelby Reese
Gifts Received
Tom Amber and Shelby has not received any gifts yet
Latest Activity
PKS Kids Face2Face 2010 at Mount Laurel Marriot and Coco Key Water Park, NJ
June 24, 2010 at 6pm to June 27, 2010 at 12pm
Planning for our 3rd medical conference is underway right now. Although this is just to get us started (more emails and registration requests will be coming), please use the RSVP here to let us know if you're thinking of attending.
Please watch N...
Glad 2 hear everything is well......Praying changes everything///will send some up for Shelby and you for November........Smooooches to Shelby.
Im so happy Shelby is feeling better and growingup soooo much!!!!!
She's so so cute, she's like a doll
What a cutie! She reminds me so much of Gracie when she was little!
Profile Information
- What is your child's name?
- Shelby Reese
- How old is he or she?
- Her birthday is November 13th, 2008
- At what age was your child diagnosed with PKS?
- November 24, 2008
- How long ago was the diagnosis?
- She was officially diagnosed on November 24th at 12days old, but we knew at day 7.
Shelby is our whole world! We had no idea that anything would be "different" about her during pregnancy, but I work and delivered at an AMAZING hospital (OSF Saint Francis Medical Center in Peoria IL..recently named best NICU in the country!) and we found out very early! She was in the NICU for 12 days because of her cleft palate and her imperforated anus. At day 5 she had surgery to correct her anus. She is a very agile, happy, loud baby! She is doing very well with eating, even with her cleft palate. She is also doing well after her surgeries. We have A LOT of appointments with A LOT of different doctors, but we have had nothing but wonderful experiences with all of them so far. The only thing left to do now is to love her all we can, and give her EVERYTHING we can. She makes our lives complete and we wouldn't know what to do without her now!
PEOPLE SAY TO ME 'WELL SHE LOOKS NORMAL' OR 'SHE ACTS LIKE A NORMAL BABY' AND MY REPLY TO THEM IS " SHE IS OUR NORMAL!!"
PEOPLE SAY TO ME 'WELL SHE LOOKS NORMAL' OR 'SHE ACTS LIKE A NORMAL BABY' AND MY REPLY TO THEM IS " SHE IS OUR NORMAL!!"
Tom Amber and Shelby's Photos
Tom Amber and Shelby's Blog
New Update!!
Thank you to everyone who sent us well wishes on facebook while Shelby was in the hospital!! She is doing much better! For those of you who no not have facebook, Shelby got admitted for a lower viral resp infections. She had a high fever, had a hard time breathing and couldn't keep her sats above 82!!! Very scary for mommy!!! While we were in the ER, the resident was asking about her medical history..LOL..i love that question! Well I told him about her PKS and he asked if it ran in the family. I… Continue
Posted on September 24, 2009 at 5:55am — 4 Comments
Life Changes
Some things have really been changing for Tom and I over the past year. We love eachother very much and we have so much respect for eachother, but the sparks just arent there anymore. We decided to "split up." It was totally mutual. We just arent happy with eachother anymore and we dont want to fight over stupid things anymore. He is going to keep the house and I am going to move in with my sister for a little while. We aren't 100% sure that this is what we really want, so I didnt want to go get… Continue
Posted on July 28, 2009 at 9:39am — 7 Comments
Big Big Girl!!
Shelby is getting so big!! Over 8 months now! We have been making great strides! She got fitted for her Kid Kart last week! It was bitter sweet, glad to have something to help her, but hard to do. We also ordered a stander and a new bath seat. They said it would take 4-6 months to get them in. In IL there has been a waiting list for PT, so we finally got the call to make our appointment. We get to start the first week in September!! We should be getting her fitted for AFO's before then, so they… Continue
Posted on July 21, 2009 at 6:26pm — 5 Comments
Up Date!
So I haven't updated on here for awhile...Shelby had to have yet another surgery on her bottom. After she had her anus moved(when she was 4days old), the stitched poped open(at about 14 days old). So she had to go back under for them to restitch everything(day 15) Well at one of our recent appointments with the doc, they found a fistula!! :( so they needed to put her back under to kind where it was leading to. It could have been 1 of 3 things. Either a vaginal fistula(leading to the vagina), an… Continue
Posted on May 31, 2009 at 10:54pm — 1 Comment
Eye Doc!
Shelby went to see the WORLDS MOST AMAZING doctor the other day. (I'm sure all of our kids have one) He is Dr. Steve the opthamologist. He is sooo wonderful with kids!(and parents) He took the time look everything up on PKS that he could find and then also printed me out some info, not know what all we know about the syndrome. He studied at Harvard and Yale and has actually seen a few kids with PKS in the past(any of your kids???) Anyways, He knew what he was looking for and that made it alot ea… Continue
Posted on March 21, 2009 at 9:27pm —
Comment Wall (68 comments)
- At 10:11am on November 13, 2009,
Kelsey/ cammie said…
- Hello Amber
Just a update on the 2010 Medical Conference for families with PKS Kids. This year the board has come up with a way to help families meet the financial need for attending the conference. If you are interested in attending and have questions on how this works please contact me at cammie_gray@hotmail.com
Everything will be keep confidential
- At 9:32pm on November 11, 2009,
Abbey, Brayden, Cory Depoorter said…
- Somebodys going to be 1 soon!!!!!!!!!!!!!!!!!!
- At 7:03pm on October 11, 2009,
Nic, Terzita, Adam & Alessia Acquarola said…
- How cute is Miss Shelby in her new photo?? Love the smile! She's looking great Amber! Luv Terzita xx
- At 8:17pm on August 30, 2009,
Gita Pinto said… - Thanks for your welcome. I'm happy to have found a group like this. It'll be nice to be able to support and encourage each other. It's also a good way to exchange info since there seems to be little known about PKS.
- At 2:12pm on August 30, 2009,
Abby Westover said…
- Thanks! She's our little rock star!!
- At 10:11am on July 30, 2009,
Abby Westover said…
- hi, your daughter is beautiful! i'm sorry to hear about you and your husband, but things always seem to work out one way or another. i look forward to hearing more about shelby and all the wonderful things she is doing. our daughter gracie is 5 and doing well.
- At 10:56pm on July 29, 2009,
Becky, Scott & Devon Gardner said… - The reunion was such a nice time. I really treasured meeting other families and their children. It really is nice to share experiences with other parents. I learned quite a bit, and loved sharing Devon with everyone. Shelby is a little doll.. and it was great to see her enjoying the water!
- At 8:54am on July 2, 2009,
Randy Morris said… - It was very nice to meet you guys too. I wish we'd had more time as well. We were trying to work the baseball tournament in with the reunion. We hated we couldn't spend more time. We were happy that we could at least make a couple trips over. It was a great bunch of kids and parents. Your daughter is a real cutie.
- At 10:23pm on July 1, 2009,
Elizabeth & Anthony said… - It was great meeting you as well! I'm sorry we didn't get a chance to say goodbye. We'll have to make plans to meet again! Give ShelbShelb a kiss from me and Anthony too!! I'll look for you on Facebook.
- At 1:35pm on June 18, 2009,
Kelsey/ cammie said…
- The reunion plans are coming together just a few last questions. Can you meet with Dr. K Friday morning? And we have a few ideas for the Saturday activity but would like some feed back.
Zoo-mostly free
City Museum $8.00 per person
Magic house $5.50 per person
Forest Park play ground free
Aquaport water park Under 3 free 16 over $15 per person
Or stay at the hotel and just visit and swim in pool?
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