From our last blog, Amber has started her Vigabatrin, she is now up to full dose, and as of Saturday last week has not had a myoclonic, not one jerk! Don't get me wrong there is still activity that is there, but it is so much easier without having to worry about the drops, and her hitting her head. Long may it continue!
In that time Amber has become so much more stronger, and still sitting high on her knees, but it able to stay there for longer than 10 seconds, she is showing signs again of wanting to crawl, and it so loving and happy its brilliant. Last week whilst I was feeding her in a low chair, she stood up, couldn't believe it was great.
Amber turns 4 in two weeks, and I can't believe where the time has gone. Yesterday we had the letter from the Hospice, telling us and quote "that having heard from Ambers Doctors it is entirely appropriate for us to make use of the Hospice" the reality of hospice care really bought it home to me, and I actually felt quite sad about it yesterday. We want to be able to access it for the family, and I do believe that Amber will see Adulthood, but nevertheless, it is definately a reality check.
We have just had a really big deck built outside our living room, this means that Amber can roam freely outside in her walker, she is loving it, and it is so nice to see enjoying the great outdoors. Next week we are going camping in our new tent and I can't wait it is something we have always done with Amber and the boys and that is to have holidays whether they are just weekends away or long haul flights. You need something to look forward to.
In terms of Ambers condition, the more I read, the more I think that the treatment/cure, is something that must be glaringly obvious. I have read what other parents have said about their children, the treatments they have tried, and what has worked and what hasn't, but because the condition is so rare, but full time research into isn't quite there yet. It seems that we are piggy backing onto Rett Syndrome research which is another condition that affect mainly girls with a overlap of symptoms to CDKL5. I am sure we will get there. If I one the lottery, and hopefully the EuroMillions Lottery, I would fund the research myself. Amber is always going to be a "special girl" but to find a cure or appropriate treatment which would stop dead the Electrical Activity in the brain would be momentus! Maybe one day, with prayers and a whole heap of luck!
