Elijah - an Angel Story

I am happy to report that we are almost one week reducing the Clobazam without thee return of seizures or any adverse reactions - which is fantazmagorical !!!! We still have been having a bit of a battle with sleeping - he has slept through 2 out of the last 5 nights although I happy to report that there is relief on the way. Last Saturday Francesca and I went to see a family in Christchurch who also have a child with Angelman Syndrome. She has offered to make some sleeping clothes for Elijah. We took with us the sleeping suit that he has and manages to get out of and also the sleeping bag that we put him in as well. We had some discussion about what would work best, Trish then took some measurements some photos and said no problem she could make them for us no problem. What a blessing ! No more trying to put safety pins where he can't reach them and him getting into his nappy - this sounds like bliss and the opportunity for more sleep - yeah.

Also I Am most delighted to report that our fundraising for the whole family going to the Angelman Syndrome Confrerence in Australia in October has had another boost we are looking like we will clear 300 on the lamingtons and we were given another 500 from my work - To be continued