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Post by ALLISA on Aug 18, 2004 0:16:09 GMT -5
Christine, it's midnight ( or later) and you got my crying over your post of happiness !! Yes, this is a great place ! I just wanted to comment briefly on your question regarding peditricians & wether or not your current one would be the best for your new daughter. I think you should keep in mind that the peditrician is there mostly for vaccinations and if she is sick. You will probably find yourself overwhelmed with "specialist" docs anyways. I found it very comforting to stay with my current peditricain because she was there for the birth of my 2 older boys & knew me & my family so well. She told me when Erin was born that she had no other patinets with DS , though there were a couple who saw different docs in the practice. But she got a DS growth chart and always asked just the right questions regarding deveolpment, therapies, EI, etc..... I think because DS was not her specialty, she was very willing to refer Erin anywhere I wanted to go... basically gave me free rein with her Referall Number ! LOL ... for all those with HMO's !! Also, our Children's Hospital has a DS Clinic..... we haven't gone in a year.... but when she was under the age of 3.... I found it quite helpful. It is almost like a "second opinion" to your EI services, you go for a few hours, meet OT's, PT's, ST's, nutrinoalist, ear doc, and developmental doc..... They inquire about your EI services and let you know if it is adaqute, what you should ask for, what you should concentrate on and the developmental doc is basically your DS Specialist. I bet a Childrens Hospital near you runs the same type of program. Good night ! Allisa
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Post by Robin on Aug 18, 2004 8:12:25 GMT -5
Awww VChristine, how cool is that to find your coordinator and she has a child with DS too!!!! Bob gave you some awesome information, he is a great guy!!! I am so glad you are doing so well!!!!! Sooooooooo......how about Ashlyn? hugs, Robin
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Post by momofrussell on Aug 18, 2004 9:44:27 GMT -5
Hey, Welcome to Uno! We live in MO and use our local ARC (which is now ARCH) for our respite. We have a Regional Center here which some states have, which provides us with services for spec needs. But some places other than Regional Center also provide services.
ARC handles LOTS of different disabilites.
A.
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Post by meghans_mom on Aug 18, 2004 9:57:13 GMT -5
Christine - glad your first contact outside of Uno was so positive!
I have to agree w/ Allisa - about the ped thing. I just happened to luck out and loved the docs I picked. they have very few pts w/ DS but they're really good...they read everything I give them, and do current research on their own and when I tell them something they don't know, they're very open. You'll find that you'll be the advocate for your daughter...you'll know what tests need to be done when and you'll be asking your doc to do them. Some docs do balk - ofcourse, if you don't think your doc will be open to suggestions, etc - then by all means look for one you think will suit you & your daughter better. You'll probably also see a developmental pediatrician once a year - someone more geared to the needs, etc of our kids - Ok, I'm babbling now, LOL.
anyways -- glad things are going well. hugs, laurie
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Post by Connie on Aug 18, 2004 11:30:44 GMT -5
Christine -- Welcome!! I have to agree with Allisa. Our family sees a GP or Family Doctor as some people call them. He really has no other patients that have DS so he is really open to what I have to say. He never ??'s me when I say Collin needs to go see this doctor or Collin needs this etc. Plus it really helps that he knows our family very well and we don't have to reinvent that wheel either!!! Good Luck to you and I know your going to make a wonderful Mommy to her little one!! Connie
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Post by Chris on Aug 18, 2004 12:49:26 GMT -5
Geez, Christine! At the rate your going your going to have her enrolled in preschool before she's even born! I am so happy for you. It looks like everything is falling in place for you. I have to agree with everyone else about the pediatrician. Really, a good pediatrician doesn't have to be an expert on Ds but they need to be willing to look at the health guidelines for Ds and refer your daughter to specialists. My pediatrician is Sarah's health care coordinator. Chris
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Post by Cbean on Aug 18, 2004 21:13:30 GMT -5
Thanks for the vote of confidence for my pediatrician. All of your responses made me feel a lot better. I can see what you mean - it may work to my advantage to have a dr who is not so familiar with DS to manipulate! LOL Seriously, I realize the best thing I can do for my child, my family and myself is to just keep myself educated on this and not to depend on dr's or teachers, etc to automatically know what to do. Plus, I really like my ped and I appreciate his approach. I think he will also be a good advocate for my non DS child if I should tend to be too focused on the newbie.
Thanks again! Christine
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Post by Robin on Aug 19, 2004 8:42:26 GMT -5
I can see what you mean - it may work to my advantage to have a dr who is not so familiar with DS to manipulate! LOL <-------- ROFL Christine...you catch on wayyyyy fast without even having it spelled out for you!!!! That is EXACTLY what we mean!!!!! LOLOL hugs, Robin
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Post by momofrussell on Aug 20, 2004 13:15:42 GMT -5
I picked my Ped based on that they did know some things about DS BUT.. I also pick all of our docs based on how personable they are too! Knowing DS is just a part of it for me... MEAN Dr's who know about DS doesn't work well for this girl... And I usually don't stick around long either. I went through a couple Peds in CA before finding one I really liked. The one I had with Regan and Russell both, the medical group closed so I searched for another. I had this other Ped after that, that knew about DS BUT... also kept comparing Russell to a "typical" child ALL THE TIME.. DROVE ME NUTS... and his bedside manner was BLAH! So.. I found this Ped that specialized in Spec Needs kids and he was great! When we moved to IL I called and decided on this one GP who is also a D.O. I personally like D.O.'s... and he is WONDERFUL! He knew a bit about DS but what helped is that his wife was a ST and he is the NICEST thing since sliced bread! He will also let you suggest things and go with it.... for yourself and your kids. Unfortunately, when we moved to MO, the schools needed exams from MO docs ONLY... ***sigh*** so I had to find a Ped for the kids. But I still drive to IL for myself! I will not change docs for nothing! The place we take the kids to now is a office with 4 Peds. The first one they thought I'd like best due to his knowledge of DS, but he treated ME like I didn't know a think LOL.. and he was too old! LOL.. Another no no for me! LOL So, I politely told the front office girls to give me a diff doc, and I love the Ped we have now! He is WAY cool! Oh.. and I usually like Male Docs over females... I haven't really had much luck personally and with the kids, with females.. only one in CA we used that we liked... Ok.. I rambled WAY tooooo much but thought I'd jump in! A.
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Post by Cbean on Aug 20, 2004 20:18:53 GMT -5
Another update...gosh you are all going to get so sick of me!!! I can't help myelf! Wait till the little bundle gets here! LOL
I got a call from my coordinator today! Can you believe it??? Wow. To think I just found out about my baby two weeks and a day ago and today I was on the phone with EI. As I mentioned, she is also a parent of a child with DS and she was wonderful to talk to. I think she spent an hour on the phone with me. She spoke very candidly with me, more as a parent than as an EI employee. She's going to send me info and I can't wait to receive it. Now if the EKG can go as well.
Tricia I was thinking of what you said in your post to me...that the people surrounding people with disabilities are as awesome as the people themselves. Your words were echoing in my head as I was talking with her. Amazing!
Thanks again everyone! Christine
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Post by momofrussell on Aug 20, 2004 22:00:33 GMT -5
Hey Christine.. with your WONDERFUL attitude towards everything.. YOU will accomplish EVERYTHING you need to!!!! Your posts are OOOZING with smiles and Positive vibes... you are going to be a GREAT momma! Enjoy the pregnancy! And post away all you want! A.
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Post by Debbie on Aug 22, 2004 16:09:25 GMT -5
Hello Christine.
Welcome to Unomas. This web site you will find to be a great one to find friends and support as well as idea's to help you. It sounds like you have found friends already!
I am Debbie, an adult who has Down syndrome. I have Mosaic Down syndrome. I am forty three years old. I have been posting on here for a long time now. I have found such wonderful acceptance and support here! I know you will too.
Take Care and post often! ;D
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Post by Cbean on Aug 22, 2004 23:05:01 GMT -5
Thanks for introducing yourself and welcoming me Debbie! I look forward to getting to know you better, along with everyone here. I noticed a post you left on another thread and I was hoping some day you might share some poetry with us. Forgive me if you have already done so, after all, I am a NEWBIE!!!
See you on the boards! Christine
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