Grace had a terrible time gaining weight at first. I would add an egg to her milk.She didn't tolerate being nursed.She had to much trouble sucking.Remember...
Keep up the good work. Faith was not going to be given the chance for heart surgery twice due to a mild brain bleed that she had at birth and the bleeding...
Both of my 11q boys have always had a hard time gaining weight, but especially my oldest. He was very premature and only weighed 2 1/2 lbs. at birth, but has...
Thank you all so much, it is good to know that we are not the only one's with this problem,she has had a lot of prayers,and that means a lot to us. She is on...
Peggy, Hi. Am I reading your e mails right. Grace is 33 yrs old not 3 yrs old? Were there any issues with her and her periods? I thought I had read there ...
Nathan is 5 1/2 and weighs 30 pounds soaking wet. Faliure to thrieve has always been an issue with Nathan. When he was a baby the doctor had him on Enfomil 24...
Yes she is 33 Her period was a real problem and she was givne the depo provera shot monthly.Thsi controled most of it but it does cause weight gain. She kept...
Hi to you all, our fundraising to get to the conference is going well we are about a quarter of the way to what we need and i am getting so excited about...
Peggy, you said Grace was 12 pounds at 6 mons. that was great, Chailen will be 6 mons. old the 20th of this mon. she has not reached 8 pounds yet, Did you give...
Hello all, This is Gretchen -- Morgan's mom.? You must all remember that 11q children are deficient in the growth hormone so short stature is common.? You may...
Gretchenwarren@...
May 3, 2008 12:44 am
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Hi everyone, This is a copy of an email that I just sent out, but I thought that I would post it here too as many of the email addresses on my list are not...
This is Chailen's grandmother, she seen the heart Dr.yesterday they have set her heart surgery for the 21st of this month, please keep her in your prayer's. ...
Hi Linzee, My husband Joe, myself (Darlene) and our son Jack (4 yesterday) will be attending the conference. We booked through expidia and seeing how we...
I am taking Olivia to get her allergy testing tomorrow morning. Has anyone taken their JS kids to get tested? If so did anything show up? Olivia is always sick...
... It's Nick's mom. I will keep you and your family in my prayers and heart. Nick will be turning 12 on the 21st and we say a special prayer just for Chailen....
Thanks so much,I hope Nick has a good birthday, we were hoping for Chailen's to close also, but it is fairly large, but everyone has said it will help so many...
Praying for a great surgery and a quick recovery. Make sure they give her antibiotics a few days before the surgery. Just to ward off any bug she may be...
Hello. I`m a 32 year-old mum from Norway,and my first born child has received her diagnose trisomy 11,monosomy 10. Since this is so rare , the genetic...
Dear 11q Families, I am writing to you to remind you of the upcoming 11q conference to be held here in San Diego, June 25-29th. I know some of you have ...
Hello everyone This is my fist time posting here but I have read all the other posts with great interest. I have in 8 year old daughter with JS. She was...
Peggy, Then when she was in it was for seizures. Now we're back for projectile vomiting. She's had a nissian fundo. (stomach surgery) done for reflux so isn't...
Erin, I live close to Poplar Bluff. I take Nathan to Cardinal Glennon in St.Louis to see his (numerous) specialist several times a year. Becky If you learn...
I am curious regarding the criteria for Jacobsen syndrome or variant thereof. My daughter now age 20, has a partial monosomy of chromosome 11 at q 21 - 23.2....
I think that Jacobsen Syndrome is only considered deletions from 23.3 to the end of the chromosome. I think that your daughter's deletion is higher on the...
Welcome and yes she does . My daughter Grace is 11q- 23.3. She is 33 yrs old. It was wonderful that you were able to home school .My Grace started school at...
Hi everyone, My name is Barb & I have a 3 year old son with JS. I just found out about the conference & will be attending, but I won't have a chance to bring...
Hi Barb--welcome to the group. I'm glad you will be able to come to the conference! I'm not sure if there are any other members of this particular yahoo...
That's what I was told...my daughter has JS and her's is 11q 23 to 25 terminal deletion. My understanding from her genetisist was it had to be sections 23 on...
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