Update

Hiya, had a really good trip to Naomi House last Friday. We were given a tour of the hospice and met several members of staff who all seem lovely. Naomi House is quite different to Julia's House, it's more like a private hospital. It's a great building in a really lovely location, surrounded by 'telly tubby' hills. All the children have their own room on the ground floor with doors that open onto the garden, and the family rooms are just above on the first floor. Patrick would have 1to1 care during the day and over night they have about 4 staff to up to 10 children but all the rooms have audio monitors. As Patrick has silent fits they said they would make sure his room was opposite the carers station so they could see him. We have been allocated 14 days that we can use this year although they are already pretty booked up. We are hopefully going to have our first stay there on 1st-3rd of July. We have asked for a 3 day stay as I think as it would be the first time leaving him (even if he is only downstairs) it will take us a couple of nights to relax enough to get a good nights sleep. We are going to have to go midweek and take Isaac out of school, they haven't got any weekends available until October but that shouldn't be a problem.

Had a good weekend, myself my Mum and Aunt did our 'Race for Life' on Sunday. Thankfully the rain did just about hold off and we managed to finish the course in 50 minutes which we were pleased with. We were a bit embarrassed to have been over-taken by a chicken, a giant bra and a lady on crutches but we managed to raise about £200 between us so we're happy.

Unfortunately Patrick hasn't had a very good week. His fits have been getting a lot stronger again. Last night he was particularly bad and from 2:30 - 4:30 he was awake and fitting quite badly one after the other, not really having time to recover in between. We gave him his madazolam which is his emergency med which did stop him fitting but it didn't last long and he was fitting again within 20 minutes. He did eventually manage to drop back off to sleep but was so exhausted this morning that after having his breakfast he slept right through until 2pm. I have spoken to his neurologist Fiona this morning who has suggested we go back up a little bit with his Vigabatrin, that will let us see if weaning that has made him worse and I have arranged an appointment with her for next Wednesday when she'll prescribe him something new.

Keep fingers crossed for him over the next few days, I'll let you know if anything changes.

Lots of Love xxx

P.S The photo above isn't us being cruel, we took the boys to a community fun day recently but Patrick slept through it. I always like to include Patrick when I'm taking photo's (I have a big collection of pictures of Patrick asleep in his buggy in various locations) and we didn't want him to miss out on the fun!