My name is Alessandra, we have a 7 year old daugther(Isabella, a happy and beatifull girl). And have never been in contact with anyone else who is connected...
Hello, My daughter is Alexandra she is 4 and we have been working on potty training (some good days some not so good) She has a speech delay too. Welcome! ...
Alessandra, Welcome to our group. Faith has an 11q23.3 deletion and is 3 1/2 years old. She has Hypoplastic Left Heart Syndrome and has gone thru 2 of the 3...
Hi,Jeremy Thanks for awnser. Your daugther has a beatiful name, means a lot. Bella was born with VSD, she is fine now, no heart diseases any more, she is...
Hello friends. Yesterday, I had to pick up my son Nate from preschool early because he kept getting nosebleeds (before now, he's had them at night, not during...
Hi Heather, I am sorry that you are dealing with all the nose blesds. My Cody went through them for years and yes most of them occuring during sleeping hours. ...
My son Zachary also gets nose bleeds quite often, especially in the winter when the air is more dry. We can usually stop them in a reasonable amount of time,...
HI Heather- My daughter is a Jacobsen child. She has a mild case of the platelet disorder--- thank goodness. Her counts are in the normal range when CBC...
Kyauburn1@...
Feb 23, 2008 8:04 pm
253
Thank you for the info. I will definitely pursue the platelet function test. Do your boys have trouble with other bleeding? say, when they get scrapes or...
We have not had any nose bleed issues as of yet with Faith. But she has very bad allergies which was expected as do her mother, half brother, and half sister....
Hi Heather - My son Erik is 21. Nosebleeds have been a constant factor in his life. In preschool he had a three day bleed that had to finally be cauterized...
Heather, In general my boys haven't had tpoo many problems with minor scrapes or cuts. It takes a little longer than normal to stop bleeding, but it's not...
Faith gets minor scrapes all the time and with her still trying to figure out how to walk she gets her share of bruises. The bruises are a bit different in...
Alessandra, I have just now seen your post to the 11q network. My son Joshua is Partial Trisomy 11q duplication between his 11 and 14 chromosomes. He is non...
Hi! I do know that the Faith who lives in Oregon also has had clotting issues after surgery. She has the hypoplastic left heart also and had problems after her...
Laura, When we were in San Diego for our first conference- and they took blood from the kids did Cody have his drawn? and did you get a report back about...
Lisa and everyone else :) Yes Cody did have the blood work in San Diego. I also received a report on it but, it grew legs and ran away from me..LOL, I think it...
Chailen is now 3 mons. old and weighs 7lbs. She is doing so well, she is staying awake most of the day and making all kinds of sounds. She will have her heart...
Hi Nette, My name is Cesar and I'm Isabella's father. My wife and I would love to continue corresponding with you because, as you said, there's only a few of...
Hi everyone, We have a (very) preliminary agenda put together for the 2008 conference. Things could change and not all speakers are confirmed yet, but I...
Hi, Linzee, I don't see it in the message below. And I checked the website but can't find it either. What are the dates of the dates of hte 2008 conference? ...
LAUREN CLARK
Lauren.Clark@...
Mar 2, 2008 11:21 pm
267
Sorry--the conference is June 25th-29th,2008. it will be held at the Handlery Resort and Hotel in San Diego, CA. Feel free to contact me with any questions. ...
One other thing--technically the conference activities will end the evening of the 28th, but I have it listed as the 25th to the 29th everywhere because that...
Hi linzee, I am from Guatemala my daugter Daniela she just turn 5,I have email you before. I am atending the conference in june. But I like to know for the...
Gabriela, I am excited that you are going to be able to come. We prefer that you send in registration forms ahead of time including payment, but I understand...
Linzee, Thanks for the info. Please send me the email of Dr. Grossfeld so I can get the information and know what they will do. And I will try to send the...
It seems that the phone number that we were given to make reservations for the hotel is actually the direct line of one of the event managers and not the...
I will not be able to attend the conference this year, I am interested in the music therapy and how it works though. Does anyones children particapate in this...
Hello all, the reason why I am writing you, is because my daughter Gabrielle which is now 9 yrs old with 11q 23.3 seem to have a kidney reflux, sometimes she...
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