My son was born in June 2016 and to say we've had a stressful year would be an understatement. He's admitted to hospital at least monthly and has various medical problems.
Most recently (and mainly) he has been diagnosed with a Leukodystrophy. Tests are ongoing to confirm what type and the 100,000 genome project has also been discussed.
I have found various sites with information about this and have recently joined a fb group to try and identify with other families going through a similar ordeal.
The thing I am most stumped on is the prognosis - when we were meeting with his neurologist she explained various different scenarios and that it could be life limiting. I think we were probably in shock and slightly ignorant to the severity of the current diagnosis. We are meeting with his usual consultant on Friday so I have a lot of questions to ask.
Mainly I was just wondering if there are any families who have gone through anything similar or knew anything more about the condition ?
I have recently started a blog aiming to discuss the difficulty of parenting when things aren't necessarily as you think they will be after you have a baby. Mainly the struggles of having a poorly baby and coping mechanisms. It's www.themumfeels.com if you fancy giving it a read - it's all very new but I feel it's an outlet that I've possibly needed for quite some time.
xx