I know that I missed detailing several paediatrician appointments, at least one ENT appointment and I have barely mentioned the speech pathologist and dietician appointments but there were many in this time as well. I haven't even touched on the number of times that we have been to the hospital to reinsert his NGT after he has extracted it
On average up till now we have had about two appointments per week. Sometimes four sometimes only one. I can't remember the last time that we had a week without an appointment of some kind for Raphael.
7 comments:
Hi my name is Chantelle and I live in Canada. I am an adult with CHARGE. Is Rafeal your child? How old is he? If you want to email me you can at catfuzz.caliby@gmail.com
Hi im just posting this from one of my friends on the charge us Listserve
Good morning Tasmania!
And Paul, Annie, and Raphael.
The U.S. Charge Syndrome listserv moderator 'found' your blog this morning,
so we've had a chance to 'meet' Raphael.
Of course we recognize the path you're walking, and I can say you're doing a beautiful
job.
If you have the time and inclination, please drop in for a proper Welcome, and join us.
There are two young ladies from Aus. who 'post' regularly, two young ladies and our
moderator in Canada, a large English group, a little boy in Sweden, others who drop
in when they can from South America, Germany, Spain, and many of us from across the
U.S. It a big family, this thing called CHARGE syndrome.
You can sign in at www.groups.yahoo.com , or go to the www.Chargesyndrome.org page and
follow the link.
We relish the progress reports of all our kids, young and older, and can sometimes
contribute useful information.
Hope to hear from you,
One behalf of us all,
Linda in Massachusetts USA, daughter Diana, 21 yrs old.
Hi.. My name is Belinda, im from Melbourne Victoria. I am 23 with CHARGE... Im not sure how old your child is, but have u ever been involved with the association in Australia? or know about it?
I understand some people dont want to be involved and that is fine...But just in case you didnt know about it. There is an australian assocation.. You can find the link through www.chargesyndrome.org and go to resources..
Belinda :)
Hello there!
You've been "found"!! Our CHARGE Syndrome Listserve moderator wrote in that she found your blog. So we have been reading about your precious Rapheal. We've all been on similar journies. I myself, twice now!! I have a 10 year old w/ CHARGE and a six month old w/ CHARGE as well(and a couple other kiddos in between there:). Like Linda who posted before me, I would also encourage you to stop in to the list if you have a chance.If you are open to it, we have, I think, THE best family that there is out there(CHARGE).
We'd love to see pics of Rapheal if you ever have a chance to do that.I also have a site for my youngest. It's www.caringbridge.org - click "visit" and then type tateyoung(one word).
Best of luck to you!
In CHARGE,
Corrie Young
USA
mom to Peyton 10 CHARGE, Cy 7, Mary Catherine 4, and Tate 6 mos today!! CHARGE
as corrie said urfound LOl im another in that list serve with charge but i am in aus to in sydney to b exact feel free to email me would you mind if i passed ursite along to soem people i no in vic who mannage the association from there hugs ellen
and where r u in tas i catn plac courie park place ive been to tas lots with mum and dad so where r u near
Thankyou for the encouragement. I will try to quickly summarise answers to the questions that I heard:
Raphael was born on 18/3/2006 so he is 11 months old at the moment.
I am already a member of the listserv but I cannot dedicate the time necessary to read the abundance of posts that are made each month. I will just drop in now and then posting questions to extract information from the community :)
I am a member of the Australian CHARGE syndrome association and they have just posted me an infomration packet which looks very interesting (I have only skimmed through it). I notice that Ellen has a staring role in it :)
You looked at this page too early, I wasn't finished adding all the information and sorting out the exact dates. I have now posted pictures as you can see :)
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