Hi everyone,
I have appreciated receiving information from everyone's e-mails from this website, and have found them both encouraging and informative. I myself haven't actually written anything for a while. We have a 5 1/2 yr old, Nicole, who has COMA. She started Yr 1 at school this month (Australian school yr starts in Feb) and is doing SO well. She had so much enthusiasm and eagerness to learn, and has the support of a terrific special needs aide part time, as well as a visiting teacher for the visually impaired. She continues to receive occupational and physio therapy.
The reason I am writing is this - how many of you have more than one child diagnosed with COMA, how are you coping with all the extra appts etc, how are other siblings in the family without COMA finding things? But also I am really keen to know whether the severity of the OMA and low muscle tone, speech difficulties etc is the same for both children.
We have a 2 1/2 yr old son who does not have COMA -developmentally he is doing really well. We recently gave birth to an adorable little boy, Alexander, who is now 2 months old. Although he is too young to get a definite diagnosis, he definitely has delayed visual development, (not fixing or tracking), head tremors and low muscle tone, all of which Nicole had. It has been a bit of a shock to the system to be going through it all again. Despite how well Nicole is going, we know the hard work it has taken to get her there, and the concerns are there all over again with Alexander. Yes, this time we know alot more about what we are facing, and how to get what we hope is the best intervention, and starting early, but it's still pretty heart wrenching, and I feel at the moment that I am chasing my tail and attending so many appointments for both Nicole and Alexander - and trying to give as much time to our son in the middle too. Things are busy enough with a new baby, let alone starting out on the therapy trail again. Despite this, I wouldn't change Alexander for the world - he's a real delight. I suppose in alot of ways my concerns are for our middle child, in the middle of 2 high needs children. I'd love to hear from any of you who have had 2 children with COMA, and anything you have done to include the child(ren) in the family without COMA.
THanks again for all who provide so much terrific information and support on this website.
Linda