Just a quick update: firstly apologies to regular readers who I know have been checking in for news...there is lots, but it's been so hectic here... So many appointments, plus in my spare time i've been on a bit of a knitting frenzy (well it's well and truly winter now) and ive been absorbed by the twighlight saga :0)
And because there's sooo much to report from the numerous assessments and specialists, I know It's gonna take a while, but the longer I leave it, the task grows....
So this is just a snippet of good news (for a change). Hope has been SEIZURE FREE for 4 Days!!!! She's never done more than 2 days in a row since the epilepsy first reared it's ugly head 6 months ago.
Considering it's December; that I can no longer avoid the Xmas music, that we have advent calendars counting down till the day lil Sam died, I am extremely happy :0D
Hope is on top form. The seizures set her back so much and Can even leave her empty of her personality when she has a particularly bad day. But because she's had a long run without them, she so happy and alert. She's been a right chatterbox and even her head control is better. Oh I hope it lasts. Forever. I know it won't, and I just hope it doesn't come back with avengence.
Any spare prayers going should be directed to Hope's little buddy, Jude, who is having a tough time at the moment www.cjengo.blogspot.com
Will try to update on all the appointments sometime this week
Xxx
My baby girl was diagnosed with Ventriculomegaly, and I was also offered... The word 'rollercoaster' is exactly right! But I stood my ground though, and prepared for a 50/50 chance of mental or physical handicap. As it turned out, she is looking fine at the moment - you would not think there was anything 'wrong' and the whole Rollercoaster is a bit of a dim memory. But, I try keep in touch with other parents going through tough times, and hope that my story offers some hope to anyone else reading and desperately searching for info.
ReplyDeleteWishing you all the best xxx
Adele
http://wahm-blog.best-work-at-home-toolkit.com/search/label/ventriculomegaly
Oh Carline that is great news! Obviously this will always be a tough and very sad time of year for you all, but so pleased Honkie is being so animated, bless her.
ReplyDeleteLong may the seizure-free days continue!
Thinking of Sam especially this month my lovely.
Much love to you all, form Rachel & Co. xxxxxx