My son Dylan (7) is VERY ocd with his collections, at the moment its string of all sorts and colors and playing cards, plain ones, uno etc.. he sorts them all...
Hi everyone, My son Brady is 21 months old. A couple of weeks ago we had an MRI and the results showed that he didn't have as much mylein as he should around...
Yes Grace has always had this problem. It realy showed when she hit a big growth spree at age ten. I will tell you they gave her extra folic acid to help hers...
Hi Meredith The exact same thing happened with my little Abigail this summer Apparently this is a typical Jacobsens Syndrome thing Would you like to talk? ...
I am still looking for stories for the website. If you have not seen it yet you can go to www.jacobsenssyndromeawareness.com Please email me your stories and...
Erin I will try hard to find you pictures of Grace at all ages and send them.I have pulled some. She is 33 now. Boy what we have been threw. Even now people...
Hi Erin, Sorry its taken so long to get to you about our story. Nick was born May 21st 1996 and was hospitalized for 20 in the NICU. It was there he was...
Hi Erin, I am working on something for you and it should be done in the next few days. Well done again for making the website, you are a champion. Cheers Marie...
Thanks Peggy I would love pics and if you can just a short story about her. thank!! From: Peggy St.Clair Sent: Wednesday, November 05, 2008 9:48 PM To:...
thanks Marie cant wait to read it! From: dylansmum77 Sent: Thursday, November 06, 2008 4:14 AM To: 11q_disorders@yahoogroups.com Subject: [11q_disorders] Re:...
Thanks Joan From: joan romig Sent: Thursday, November 06, 2008 1:06 AM To: 11q_disorders@yahoogroups.com Subject: Re: [11q_disorders] Jacobsen's Syndrome...
Joan- Â I was wondering if you could give me more information on the eye surgery Nick had?? My daughter Brooke will be 1 in a few weeks and is having issues...
Did you get someone to help you? From: beckie Sent: Saturday, November 08, 2008 5:34 PM To: 11q_disorders@yahoogroups.com Subject: [11q_disorders] question we...
I have a vendor that will make me wrist bands (the rubber ones) for $2.00 each that says Jacobsen's Syndrome They are grey in color. They are awareness bands....
Joan did you have anymore pictures you can send? From: joan romig Sent: Thursday, November 06, 2008 1:06 AM To: 11q_disorders@yahoogroups.com Subject: Re:...
In a message dated 11/10/2008 8:23:51 A.M. Central Standard Time, erinkewer@... writes: I have a vendor that will make me wrist bands (the rubber ones)...
Great thanks From: SANDYCST1@... Sent: Monday, November 10, 2008 9:45 AM To: 11q_disorders@yahoogroups.com Subject: Re: [11q_disorders] Jacobsens Awareness...
ERIN WE WILL TAKE 10 BANDS IF YOU DO ORDER THEM. LET ME KNOW WHEN, WHERE, HOW MUCH I OWE AND WHERE TO SEND THE MONEY,ETC. DO YOU WANT CHECK, MONEY ORDER ...
 Here is a few pictures of her The small ones are age 7 The one in Blue overalls age 12. The others are in her teens. She was born April 22, 1975. Even thou...
Hi Erin, I wanted t let you know i posted some more pics to the website photo album, you take the pics fromthere is you want. Any questions, please contact me ...
That's wonderful. I will go on there now!! If anyone else wants to send me their stories or photos please do so. I have been getting a lot of hits to the site...
Hello everyone! This is my first post to this group but I have been reading all the info/posts with interest. I have a 9 year old with JS. She also has been...
Hi Shirley, I can't give you any insight about the vein, but I see you take Robyn to Penn State Hershey Medical Center. I too take Nick there. Where do you ...
I am not sure this will help or not. When Our daughter had her colonn surgery and they had to put in a central IV line the Dr asked if she had ever had a vein...
 Fathe r & Son. ..A Real- Life Love Story Every once in awhil e we hear a story that' s So beaut iful we are forev er chang ed by it. This is one of those...
hi Grace Thanks for your response. We have not had a vein mapping done but we are meeting with another doctor next week to discuss what needs to be done next....
Percussion will help keep her lungs clear. You pale them head downa nd cup your hands and gentle hit the back.Thsi keeps all  the stuff loose and often...
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