May 12 2008

Contact

27 Responses to “Contact”

1. # Stefanie Esteson 23 May 2008 at 4:36 pm

   I look forward to reading more! Thanks for giving us yet another resource for good information. Thank You.

2. # Sherry Perezon 24 May 2008 at 9:51 am

   Hey, you are not talking to yourself! Thank you for all the time you have spent researching, writing and sharing your experiences. My son has T-21 but so many times the experts have question are you sure he is straight up T-21. Nice to see where they are coming from and learning the differences. Interesting he language delay and more common to have Apraxia issues with MDS. I agree Hanen is a variable valuable way to interact with our children with play. Thank you and I will stick around and see what more you add.

3. # kristyon 24 May 2008 at 10:24 am

   Sherry,
   Thanks for letting me know I am not talking to myself! LOL I was beginning to wonder!
   I am glad you brought this up! After this series of comparing MDS with DS I will be talking about how people with T21 are misdiagnosed and actually have MDS.

4. # amarjit singh anandon 28 May 2008 at 8:00 am

   Thanks! It’s really of our interest to be there on this site. I am going to read 1 by 1
   all articles when I am wasting time on computer so that my time is sucessfully utilized.God Bless U .

5. # Beckyon 29 May 2008 at 7:46 am

   Hi Kristy, Thank you for all of the info you are sharing. I enjoyed your site and will definitly be back. My daughter is 5yr old and has DS maybe MDS not sure. She hasnt been test for it. She also has apraxia, Adhd, SID, and mildly autistic. I am always researching the different disorders. Im glad that you are helping to educate. Keep up the good work. Have a great day.

6. # STEFANIE CHILDERSon 30 May 2008 at 1:23 pm

   Love this site. I also have a daughter (5-1/2 DS) Everyone tells me she is Mosiac, but never tested. She did just have her IQ tested and she is in the average to low average typical range. Her cognative & education ability is right at her age level. I will be reading often. Thanks

7. # Julieon 31 May 2008 at 1:41 pm

   Thanks for a great site!

8. # danaprinceon 04 Jun 2008 at 7:16 pm

   Thank you for sharing your story and such valuable information!
   Cheers,
   Dana

9. # chatobstewarton 06 Jun 2008 at 12:34 am

   very interesting, I have a friend that has a brother with Down syndrome and his wife “had” a sister with SD… does the research suggest that if the have a child he /she will have DS????

   Chato B. Stewart
   Mental Health Advocate - Cartoonist - and a few other things!
   http://mentalhealthhumor.today.com

10. # kristyon 06 Jun 2008 at 9:51 am

    Hi Chato
    That is a very good question! Because Down syndrome is not inherited, except in some cases of translocation Down syndrome, the chances of your friends having a child with Down syndrome is still very slim. Translocation Down syndrome happens when a part or all of chromosome 21 is translocated to another chromosome, usually 14. This is sometimes inherited by one of the parents who is a carrier of the gene, but interestingly, sometimes this is not the case.

    Thanks for your comment! I will be sure to add you to my blog roll so others can visit your site and enjoy what you have to say.
    Kristy

11. # Carmenon 10 Jun 2008 at 9:15 am

    Hi Kristy,

    Thanks so much for this information and sharing your stories. The information that you have shared has really been helpful to me. My daughter is 18 months and she has MDS. She was misdiagnosed at first based on amnio results. Once we found out she had an extra chromosome in the result we had many questions because the amnio result stated that not all of the cells tested contained the extra chromsome 21. We always suspected she may have MDS even before she was born. Then after her birth she had such mild features that it made us question the test even more. I requested that her pediatrician refer us to have her blood genetically tested and she refused and stated that “downs is downs” those were her exact words. I then changed her doctor and we had her blood tested about 4 months ago and we discovered that she does have MDS at about 14%. It would not have mattered to us either way which form of DS she had but we just wanted to be sure so that we would know just how we could best help her through her journey in life.

    With that said, I can totally relate to a lot of the things you have shared in your posts. My daughter is doing well she is almost walking and we are pleased with her progress. She has truly been a blessing to us.

    I am thankful that I have found this site. I look forward to reading your posts each day.

12. # Carmenon 10 Jun 2008 at 9:22 am

    Hi Kristy,

    Thanks for sharing your stories and sharing this information with us. It has truly been helpful to me.

    My daughter is 18 months old and she has MDS. She was misdiagnosed through an amnio when I was 32 weeks pregnant with her. After we got the amnio result back we felt the result was a bit awkward because it stated that not all of the cells tested contained the extra chromosome but they explained the other cells by saying that the extra 21st chromosome must have been randomly lost during the testing. So they diagnosed her with T21. After she was born she had such mild features that we still had questions as to which type of DS she had. I asked her pediatrician to order genetic testing so we could find out specifically and she denied my request several times and stated “it doesn’t matter downs is downs.” I finally switched doctors and we had her blood tested about 4 months ago and we found out that in fact she does have MDS at about 14%. It would not have mattered to us which type of DS she had but we wanted to know more about her diagnosis so we could be sure on how best to help her through her journey in life.

    She is doing well and she has truly been a blessing to us. She is almost walking and she says a few words and communicates through her own means.

    I am glad that I found this site. Your information has been informative and inspiring. I look forward to reading your posts each day.

    Thank you.

13. # Karen Adamson 13 Jun 2008 at 5:11 am

    Hi Kristy,
    I stumbled across your website for the first time today, and loved it! My son, Benjamin is 6 years old. He has a sister (Meg) aged 9. Benji is a fun-loving, warm-hearted, mischievious, blond haired, blue eyed, fabulous lad who happens to have MDS. I’ve been reading with interest about your family. Just one question: when did you tell Tim that he had MDS? I want to make this a positive experience and nothing to be fearful about. Once again, a big thank you to you and yours for their input and insight into MDS and family life as a whole! Kaz

14. # Karen Adamson 23 Jun 2008 at 5:32 pm

    Hi Kristy,

    The time is 20 mins past midnight here in the UK and I have just listened to your radio interview for the 2nd time. What an emotional rollercoaster. I just wanted to say “Thank you” for sharing this with us/me. We kept Benji’s condition secret for the first 4 years for a whole boatload of reasons (many similar to yours). Now, it’s on a ‘need-to-know’ basis. It’s just such a relief to know that others are riding (or have ridden) the same ole ‘rollercoaster’!
    Wish I could throw my arms around you and give you a great big hug! Very, very may thanks again, Kaz.

15. # kristyon 24 Jun 2008 at 4:41 pm

    Kaz,
    I am so glad that you enjoyed listening to our story on This American Life. You are NOT alone in any of this! We have all been through it one way or the other. I am glad that I can be there for others through my writing and through all the media outlets available to me.

16. # cherylon 11 Jul 2008 at 8:07 pm

    Thanks so much Kristy. I will be reading this from now on. I have spent 2 hours tonight reading them from the bottom up and its great. You can never learn enought about MDS or DS in general.

17. # Julieon 12 Jul 2008 at 6:34 pm

    Great blog -I always look forward to reading what you have written. My son has Ds (Trisomy 21 variety) and I have a typical daughter.

    Keep up the great information both Ds and not!!

18. # ayeshaon 14 Jul 2008 at 3:48 am

    i love the blog… great keep it up

19. # Kristinaon 28 Jul 2008 at 11:35 am

    Kristy thanks for putting this blog up.
    I’ve passed the link on to friends,family, and teachers.
    I know your thoughts and knowledge about MDS will help so many people!

20. # Janiceon 02 Aug 2008 at 9:24 pm

    Thanks for sharing this blog. It is very inspiring.

21. # Gaynoron 07 Aug 2008 at 12:58 am

    Hi, my name is Gaynor i am mum to 3 kids my youngest has m/d. Amy is 16yrs old i am a single parent. Amy is a lovely young lady and enjoys swimming bowling amd being with her friends.This is my first time on the sight and it would be nice to hear from others in a simlar situation.

22. # Judie Hockelon 12 Aug 2008 at 10:36 am

    Way to go Kristy!This is one of the most coherent statements I’ve read on the subject of ‘Tropic Thunder’! There are many who just think we ought to mellow out, not be so sensitive, but you are so right when you point out they’ve probably never been called ‘a retard’!

23. # Robyn Clineon 30 Dec 2008 at 5:53 pm

    I’m grandmother to precious new baby boy Japree born on Dec. 6. He was diagnosed with DS through a karyotype test. He is doing wonderful, no heart problems, no other heath problems, other than small because he’s a preemie. The info. on simean crease is interesting. Not sure how to understand it as I’m new to this. He has both creases on both hands. No simean creases at all and does not have features of baby with down syndrome, although I know he may be too young to tell. Doctors were suspicious because he was floppy and had sandal toe. We are still trying to learn. I have to say after dealing with doctors through this whole thing, they are the rudest people I’ve ever known. Your website is very informative and I plan to read more.

24. # Robyn Clineon 10 Jan 2009 at 7:43 pm

    Would you be so kind as to remove the name of my grandson from the post above as well as maybe remove my last name. You can google my grandson’s name and this post comes up. I didn’t think of that when I made the post.

    Thank you so much for your consideration.

    Robyn

25. # kristyon 10 Jan 2009 at 10:59 pm

    Hi Robyn
    I have contacted the company that I write for and have requested that they open my editing for that blog. As soon as they do that I will take those names off.
    Thanks
    Kristy

26. # Beckyon 15 Jan 2009 at 3:30 pm

    HI I believe I just finished talking to you, right? I registered for the Ohio conference so you will be able to meet my “Lucas”. Thanks for your help today!
    Becky

27. # kristyon 15 Jan 2009 at 6:58 pm

    Hi Becky
    I can’t wait to meet you and Lucas in Cincinnati!
    Kristy

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