Blessed at Christmas

Christmas,  it's where Easter starts. The Babe , born to die. 

Thank you God for sending Jesus

Thank you Jesus that you came. 

Holy Spirit won't you teach me

More about His wondrous name. 

Last December we really thought we were heading to Eves last Christmas with us. This horrid disease of Leigh's Encephalopathy was destroying so much of her brain, the epilepsy was causing almost constant seizures and the treatment left her so weak. 

Then came the Ketogrnic diet. It was an amazing change and Eve began to enjoy good times again. There have been a lot of ups and downs. Serious chest infections hit her and Rosie at Easter. Then a serious septaceamia  nearly took Eve from us in July. Whilst Make a Wish sent us off on a memory making trip to Disneyland Paris and our Summer holiday in Weston Super Mare were tremendous highlights leaving us with wonderful memories. 

Come September Eve's Seizures started to encroach on her quality of life again. It appeared the disease was again nibbling away,  frequent need to bag her when the ventilator was not adequate and periods of barely waking for days at a time, meant at her Annual Education Review the decision was made that Eve would not be returning to school. Cue the battle to get some form of educational support at home. At a very emotionally charged meeting following a period of extreme fragile health I laid out the absolute need to get some meaningful input in place without further delay. Then things started to take off and within a few days we had the best LSA from school coming out twice a week to work with Eve. Then the VI specialist and Sense intervenors were on board. By the beginning of De ember we had a plan for 5 lots of 2 hour sessions a week. 

Sadly Melissa has left to explore adventures of her own, this was a huge sadness to us as Eve clearly loved her and Melissa saw more of Eve's abilities working at home than she had at school. 

However life has really improved for Eve with the dedication and enthusiasm brought into her education by those visiting her at home. We even had a trip out to see Father Christmas last week. 

So this Christmas has been so much more than we could have hoped for 12 months ago. Happy times at home and love between friends and family. 

Sadly two dear friends have said goodbye to their children in the last month. Reminding us of how precious each day is. 

God's perfect plan in God's perfect time.