Sunday, 29 June 2014


As regular readers of this blog will know, we have had a rough 6-7 months.

Jess developed breathing problems, resulting in having to have oxygen at night. She was found to be having seizures, she was given a rigid brace for her scoliosis, she has had her tonsils out, she has had a gastrostomy. She stopped being able to control her body temperature resulting in very serious extremes, and had chest infection after chest infection. 999 calls were made, ambulances came and numerous nights were spent in hospital. We had all our respite care and support from Social Services removed, and had to fight for it to be reinstated. We have also had major difficulties with Social Services regarding the home adaptations we need in order for Jess to live in our house, which are still on-going.

BUT, it feels like we have drawn a line under that horrible, horrible period and we are beginning to look forward. Jess had a appointment last week with the hospital paediatrician, where everything was reviewed and decisions made about how we move on from here.  She no longer needs oxygen routinely at night, we just need enough in the house to manage a seizure, and to give us enough time for an ambulance to arrive, should that ever be needed. We are slightly increasing Jessica's seizure medication to try to get the seizures better controlled and are playing with her anti-reflux medication as she is suffering again since the gastrostomy and wearing the rigid brace. The gastrostomy is going well, and Jessica is in good spirits and doing well at school. She has settled into her new respite care arrangements very easily and we are having more time together, enjoying being a family.

This feels like the real beginning of 2014 for us. We are beginning to make plans more than a few weeks in advance, on the assumption that Jess WON'T be in hospital. We are making arrangements for the summer, and are looking forward to our new start.

I feel I should be jumping up and down with energy and enthusiasm. But I'm not. I'm exhausted. It's as if I've been running purely on adrenaline since December, and now it's gone, I've collapsed in an exhausted heap.

I think it is going to take some time to fully move on.