New Diagnosis - Help!
Having just read some of the posts on this forum I feel a little embarrassed to be posting up about our troubles - which are minor in comparison to some of your heartbreaking tales. However, we are struggling in our own way and would love to talk to anyone else going through similar things.
Our 6-month (corrected) baby, Daniel, has just been diagnosed with quadriplegic (excuse my spelling!) CP. He was born at 30 weeks after we lost his twin brother at 19 weeks gestation. Miraculously, although his little brother was delivered, Daniel stayed inside me for another 11 weeks.
We are blessed to have Daniel, and he is a contented, smiley, chatty, lovely little boy. However I think we've got tough times ahead. He barely moves his legs, and although he's developing deliberate movement in his arms, they are still stiff and jerky. He's getting head control although it's not brilliant yet.
The physio has just started talking about assisted seating and later a standing frame. It's all a really scary dose of reality. Although we knew that CP was on the cards for a while, we've all been hoping that he'll make a miracle recovery.
We are getting physio and portage each week which is wonderful, and we feel both ladies are lovely and experienced, so at least we feel that we are doing what we can. I can cope with the short term - and we can see new abilities coming all the time.....but when we look into the long term it all seems so bleak and scary.
I'd love to hear from anyone else going through a similar experience or who has been through and coped.
Thanks for reading-