Forwards and Back Again

So much has happened in the last ten days.  I have been to my cousin's wedding and my great uncle's funeral, and to church twice last Sunday, and seen more people than I have for the rest of the year put together. Richard came to the wedding with me, making it our first day together away from hospital this year. The other things I went to with the other children and extended family around me. All of them were tough, but all of them were well worth it.

I loved being able to worship in church at each event. I really miss doing that on a regular basis. It wasn't like normal worship though - it cost a whole lot more this week. Talking with people, singing songs and listening to preaching and sharing from the front while having a background loop playing in my head that says; 'Your son is dying,' is the most expensive kind of fellowship I've ever known.  But after each time, after I'd managed to raise my hands and voice, the peace and real-ness of God that came at the end was amazing.

We also had an amazing meeting this week with about fifteen professionals from all over the north west who are trying to make our desire to spend time together outside of hospital a reality. These people are pulling strings left, right and centre to gather all the equipment and support networks in place so we could bring Scooby home, even just for a visit. We were overwhelmed with the amount of people who are giving up their time and offering costly services just for us. The first step was going to be a few days in a hospice next week, where all of us could be together, but then we realised that because Scooby had contracted a hospital bug (CPC) a few months ago, he wasn't able to go for infection reasons. Still, we had a bed and hoist delivered to the house in Preston, and had a practice run at driving Scooby round the hospital block in our new wheelchair accessible car, so things were in place and ready to go.

Then at the end of the week, his temperature, stools and seizure patterns showed he has another infection. It's not showing in all the tests so they don't know what anti-biotics to treat him with. His oxygen levels keep dipping, and so now bringing him home is looking less and less likely. He'll have a CT scan tomorrow to look for a chest infection and anything else they can think of to find it.

From hope to despair again.

Please keep carrying us in your prayers. Thankyou.