Well Serena went in for her surgery this morning instead of this afternoon. And guess what?!?!! Nothing was wrong with her shunt at all. Was draining fine, not...
Olivia went for her genetic follow up today.I already knew she spleen was enlarged but they tested her blood for some other syndrome that has to do with the...
Okay all...Serena is still at it here in the hospital. She's just continuing to scream and scream. Not just a "hey I'm wet" scream but one that sounds like...
Hi! My name is Alison Bernard and I live in France. My daughter Abigail was diagnosed at birth with Jacobsens Syndrome. I am always very keen to meet...
Are they giving her any pain meds at all. These kids have a high pain tolerance and this may be getting to her. I would demand something. Yes it sounds like...
Doctors are unbelievable. What a shame. I am so sorry that you have to go through this. I think it is a good idea to take her to the other children's hospital....
Erin, From one mother to another in our area of the country. I would highly suggest getting second opinions. I have nothing but good things to say about...
Erin, From one mother to another in our area of the country. I would highly suggest getting second opinions. I have nothing but good things to say about...
How are Serena's bowel movements? Could it be she is compacted? That could explain the vomiting and discomfort to the point of pain, hence the screaming....
I just watched a story on something called moyamoya syndrome. The blood vessels leading into the brain are small and don't allow enough blood flow....
Hi Erin. What a terrible thing for you both to have to go through. What strikes me most is that if little Serena is screaming so much, its most likely because...
Well we are being discharged today. Just like I thought. The doctor basically says it's normal for her to be acting this way because all babies throw up and...
Erin, Faith had surgery for her Trigonocephaly later than most children (about 10 months old) due to her heart defects and we were told surgery was the only...
I don't know if you willget this or not. But if you need to sleep try cutting the dose down. I woudl start with 0.25 and if that is too much try even smaller....
Erin, Brayden had the crainiotomy surgery also. The doctor's said that the pressure might cause some headaches, but might not. I didn't notice a difference...
... anyone ... found out in april my daughter also does not talk i also want to talk to other people who understands and knows what it entails thanks ambur...
Hi everyone, This is just a reminder that our room block for the conference at the Handlery Resort and Hotel in San Diego, will be released to the general...
Hello Alessandra, My name is Dalia and my daughter Alexandra has 11q24.1. She is 4 yrs old and is potty training still. She is getting better but still has...
I'm not sure if you are coming to the conference or not, but we will have the leading researcher for Jacobsen syndrome as well the leading researcher for...
Further to your invitation do forward photos of children with Jacobsens Syndrome for the collage to be made for Dr Grossfeld, please find herewith the...
I was wondering if I could use some of the pictures that you all have posted here in the Yahoo group for Dr. Grossfeld's collage? If you wouldn't mind me...
yes u can use mine of olivias From: linzee_carroll Sent: Monday, June 09, 2008 4:56 PM To: 11q_disorders@yahoogroups.com Subject: [11q_disorders] pictures I...
Linzee, I just uploaded some more recent current pictures of Cody. Feel free to use what ever ones you would like :) I hope you all have a great time, i look...
You can use Daniela`s too, I will try to send you more tommorw.... ... From: linzee_carroll <linzee_carroll@...> To: 11q_disorders@yahoogroups.com Sent:...
Linzee, Hey, I just wanted to tell you that we will have 6 adults and Jade for the dinner. Thanks, Sandy (Jade) **************Vote for your city's best dining...
please use Faith's also :) ... From: linzee_carroll <linzee_carroll@...> To: 11q_disorders@yahoogroups.com Sent: Monday, June 9, 2008 4:56:26 PM Subject:...
You can use Nathans If you learn from it....it is not a mistake. ... From: linzee_carroll <linzee_carroll@...> Subject: [11q_disorders]...
Hi Linzee! You can use any photographs that you want to. Feel free to downloand any on her blog that take your fancy Thanks for doing a great job Linzee! ...
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