Whew, school finally started....
I am new to the yahoo group, but many of you already know me from
conferences, and I'm proud to be the Secretary/Editor for the 11q
group!
My name is Lori, I am Mom to Hunter (girl) who is nine years old. She
has exact Jacobsen's 11q-.After a long road, she is doing pretty well
from a medical standpoint-watching her pulmonary artery issues,
bleeding tendencies and possible seizures. She is super energetic,
intelligent but not speaking much yet.She gets OT and PT, wears kafos.
She has recently developed a horrible pinching habit which we are
trying to control.
How many other single parents do we have of these kids? [e41]
Whew, school finally started.... I am new to the yahoo group, but many of you already know me from conferences, and I'm proud to be the Secretary/Editor for...
Hello Lori- Glad you've joined the group.;-) I have a 14 yr old daughter, Courtney, who has Jacobsen. She just had a heart transplant in Dec. 05 and is...
Kyauburn1@...
Sep 2, 2006 4:50 pm
11q families -- My name is Gretchen Warren (VP, 11Q Research) Morgan, who will be 12 in November, also went through and sometimes still does pinch. We try to...
Gretchenwarren@...
Sep 3, 2006 5:30 pm
Hi! I'm new, so I'll introduce myself. I'm Kristen, mom to 3-month- old Ayah. She was diagnosed with 11q deletion by coincidence, in a way. A skinny little...
Hello. My daughter is 3 yrs old and she is an 11 q baby. She breastfed for a yr. My daughter didn't suck that hard. Ill get back on here in a bit and give you...
Hi Kristen - My son also had a difficult time learning to nurse. He didn't have the energy to get enough, and even using a bottle would become too tired to...
Don't forget to visit our website and share your stories on www.jacobsenssyndromeawareness.com If your story or child's pics are not posted please email them...
Hi Kristen, I'm new to the group as well (Hello everyone!) My son Matt was diagnosed with 11q at birth. He also had a very low platelet count and has...
Tina and Kristen, Welcome to the group!! I have two boys with JS, ages 10 and 7. As for fear, they are very friendly and have never met a stranger that they...
Hi Tina - Better get used to the strangers thing! I have lots of stories - none bad though. My son Erik is 22 now and there is no such thing as a stranger....
Hi Tina and Kristen (and fellow group members of course) Â My Dylan is now 7 and has no fear of strangers when out in public he would go home with anyone who...
Hello, and welcome!!! With my daughter Laci (who is 4) it is hit or miss, she is eather very friendly or wouldnt go to you even if you payed her money! When...
Hello, My name is Angela Garcia and my 10 yo JS son, also named Matthew, has absoultly no fear of people at all. Bless his heart, my husband is from a very...
Hello. I have a LOT of questions and I am grateful to whomever created this group. When my son was diagnosed in 2005, it was hard for me to find support...
Are you kidding?! We joke that our kids have an extra friendly gene because they are all so friendly :) They will go up to anyone and make friends. I know as...
Nathan is 6 and does not talk in sentences. You can tell he is trying really hard to annoucaunt but it doesn't come out. His vocab is very limit although he...
Hello, Your Matt sounds ALOT like my Laci. She has had speech therapy sense she came home from the hospital, and is still behind in her speech. I dont know...
Hello, So I guess I have to get used to him just walking up to anyone, but he seems to get unusually attached to complete strangers. For example, I took him...
Welcome. I am Peggy mother of Grace who is 11q- 23.3. She is almost 34 yrs old. She couldn't nurse either. The roof of her mouth was to high . We are on day 13...
Peggy, Being without power isn't the greatest thing in the world. I just got mine back on. Any idea when you will get yours back? That had us on priority...
They are hoping to have it back by Friday.There is just so many without. My son cam ein off the road again yesterday and will be here till this weekend to...
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