Charlotte is still resting in the middle of my family room. I cant believe how such a tiny body can go on for so long.
She is now incredibly weak.. Sleeping the majority of the time and raising her left arm when she wants more cuddles.
She struggles with saliva building in her mouth causing her to choke at times, we also now have her in'special undies' as it she is now not able to know when she needs to go to the toilet. Putting a nappy on her for the first time was a horrible experience for me.
She also struggles with tightness and cramps in her left leg so we have moved on to very strong muscle relaxant meds used for seizures. This obviously makes her more drowsy - but i think thats a good thing.
The nurses came yesterday and will return today to see how she goes on the new regular meds.
We keep calm music on all day...and wait.
For those that know jamie (rachels partner) i also have to say what a great help he has been.
Finally thanks to my (almost) lifelong friend ... That crazy jackson.... Your care and support is more than i think is possible for a normal human... There, i said you were not normal but in a good way :)
Next update will like be in 2 days...!
