No one here has any advise on things like this?? Just wondering since I haven't had any replies so I didn't know if no one knew or if my post was just missed....
Stacy, Â I am surprised you have not received any responses. My niece is 9 months old with CDC. She had bouts with pneumonia until we got her out of the...
I didn't respond as my daughter has none of these issues. Jennifer ... From: Stacy To: Cri-Du-Chat_Syndrome@yahoogroups.com Sent: Monday, June 01, 2009 2:13 PM...
Amy, This is the other Tammy (in Columbus) :) Abigail's geneticist said that, if Abigail had a baby by a man with no CDC, then there was a 50% chance of CDC...
Stacy, I am sorry, but I also did not respond because Abigail (now 6 years old) did not have these issues. Abigail had a tube up her nose and down her throat...
Hi. I have not experienced the same issues as you. My daughter never had any tubes put in, but she did have breathing issues as a baby. She had trouble with...
Sorry Stacy :) I know all to well what its like to be in your shoes. Blaike was born in 2001, and we didn't know about his Criduchat til he was 2 months...
thank you all for the replies to my previous post! It is all just very frustrating to me b/c the doctors can't ever seem to answer the questions i have, they...
Stacy, I understand your frustration. Even though Abigail didn't have all of the health issues that you precious child does, didn't mean that it was a...
Stacey- Right now you don't have to worry about helping anyone else.? We are here to give you the support you need.? Once you get the hang of all of this and...
... I agree completely with Joanne. She said it very well. When you first get the diagnoses and you are spending so much time in the hospital and with doctors,...
We went to see shailee yesterday and the doc told us that we are all going to have to sit down in a meeting (me, hubby, doc, lung doc, and ped surgeons) and...
Stacy, I am sorry for the tough decisions that are coming up for you. :( I wish I had an answer to help you through this trying time.  This is what I...
You and Husband are going through so much right now. These decisions are bound to cause a lot of stress and it can take a toll on a relationship. Shailee is...
Hey guys, Is there a certain brand of socks that are good for going under orthotics that don't slide down and are not too hot for summer time? We are about to...
I think my daughter Molly has a decreased sensitivity to pain--she feels it but sometimes she gets a boo boo and I think she should make a bigger fuss (like...
How long did this take? Molly also does better at school--last weekend I changed her 6+ times on Sat and same on sunday--like no holding she was just going...
Tammy, I am so intrigued with your story and would love to hear more. How many children do you have and do all have cdc? How do you find it to deal with a...
Hi, My daughter Nellie has a very high pain tolerance. It has always made me feel bad, like she's been through so much that nothing bothers her anymore. She...
When Beth was wearing dafos I bought regular socks at the store, but got the longer ones. I would turn the top of the sock down over the top of the dafo and I...
Hi Tammy, Yes, this made since. It seems easier then what I was dreading. Thanks, Jenny On Jun 5, 2009, at 1:01 PM, Jobewonone@... wrote: When Beth was...
Hi For Afo's We bought Knee highs (cotton ones) from walmart and folded the top over the afo this prevented it from slipping down. But in summer it can get...
Dear Stacy My name is Maria, mom of Maggie (with CDC) who is now 14. I was reading your mail and it brought me back to 14 years ago, when Maggie was in the...
Amy, It appears your daughter has the same thing my daughter (Abigail, 6 yrs old) has - a sensory processing disorder OR also referred to as sensory...
Hi Tammy, Sorry for the delay in my response. I am sorry you were made to feel less worthy by your parents. You are right to treat and praise your...
My daughter Molly (3) also had some sensory issues but has really overcome just about all. She never toe walked but does love deep pressure This might be...
Nellie gets the Botox injections for drooling. She only needs them if she is having a really bad winter and has a lot of colds. She is really outgrowing the...
Kristi, You have not bumped your head - The geneticist that diagnosed Abigail said that we might have never known as well. She wasn't diagnosed until 2 1/2...
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