Just a quick post update.
we have only been home over the weekend and Seraphina is still not tolerating feed. Each time we try she seems to be in pain and the amount of dilute feed we get to before she gets upset seems to be less and less. she has had diahorrea again too with blood in it.
Sheffield wanted to admitt her yesterday afternoon and said they had spoken to Great Ormond street about her but when asked what the plan was they didnt have one. so instead we are going tomorrow morning to meet with the consultant and try and thrash out a way forward for our little girl.
The difficulty seems to lie in the fact that not many girls with rett syndrome have this extreme of problems with their gut..its like a kind of intestinal failure but no-one knows why or how to treat it. Seraphina is one of only 4 girls who have had this extreme problem for which as with the rest of Rett...there is NO cure yet.
The chaplain who came to visit us in hospital asked me whether I was angry at God for what was happening as he would be. the answer is categorically ...no. Im not angry. God hasnt 'made ' this happen.What I dont understand is 'why'., not why us as a family because the answer to that is simply 'why not us?' but why Seraph has to suffer so...it breaks my heart to watch.
This is where faith comes in...I dont understand why but God is still God, God is good...not some of the time but ALL of the time so I have to trust that although I dont see the plan in all this, there is one, and one day I will understand.
So today I am once more packing our things together for a hospital stay...I dont know what tomorrow holds,Im still praying for that miracle but I know whatever happens God has my Seraphina in his care.