First off, William had his gastrostomy operation 2 weeks ago now, the operation went really well and he was in Brighton hospital for 2 nights. Kev was amazing and stayed the night in the hospital so I could go home and sleep. The gastrostomy tube goes into his stomach just above and to the left of his tummy button. Its great as we can now feed him through this via a feeding pump and he can also have his medicines through it.
We did have a few teething problems to start with and were very stressed out about the whole thing. We were discharged on Friday but then ended up in Worthing hospital all day on Saturday as he had an infection. Then on Sunday we both got a fright when the tube started to poke out a lot further than we'd expected so we rushed him off back to Brighton hospital but it was fine and was something that they say is normal! Wish they'd told us that before we'd spent all day there!
We've also managed to get William on a milk that is suitable for people with milk intolerances as I have been convinced since he was just a few months that he is milk intolerant. Well it seems I may be right! He's been on the new milk for less than a week now but the difference in him is huge. He can now feed without getting pain and having to squirm about and be winded constantly, he has still been sick a couple of times but I put that down to us putting him on his back too soon after a feed. He isnt choking anymore as he's being tube fed but we are hoping he will continue to have small tasters of foods.
All in all he is a much happier and more comfortable little boy now. So all that worrying about the gastrostomy wasnt needed, it was the best decision we could have made for him and now we know what we're doing its much less stressful for all of us.
Here he is chilling on the sofa having his lunch - something he's never been able to do on his own before!
We've also had a new physio take over and she is brilliant. We've only had one appoinment with her but already she has actually done some physio rather than just sing and adjust equipment which is whats been happening for the last 2 years. Sandra went through all the things she was doing with William and showed me how to do it an explained why, something I've never had before. She was so positive about everything from school for parents to brainwave. It was such a nice change to the constant negativity we face from everyone else. Our old physio has moved onto a different role in the hospital but to be honest I think for William it was the best thing that could have happened as I now feel confident that he will be getting the therapy he needs in order to be able to maximise his potential.
We went to the opening of We Cycle Too this weekend and we were completely blown away as it was so brilliant. It is a new part of the Brooklands park and has a great cycle track and bicycles that are suitable for children with various types of disability in order for them to be able to enjoy cycling. William went on one of the amazing bikes, he cried the whole time but I think thats coz he was having a bad day - I'm sure he'll love it next time! He also went on the wheelchair accesible swing in the park and he loved that - not sure his buggy was meant to go on it but he enjoyed it!!
One thing that has happened since our last update that isnt so positive is the results of Williams EEG. The results showed that the jerks that he has are infact epileptic seizures. He has up to 15 or so of these a day so that really wasnt good news. We are seeing the paediatrician again today to discuss changing his medication doses and perhaps putting him on a course of steroids but we need to know about the side effects etc first. If we could get those under control it would be a big weight off our minds. We are still carrying his rescue medication with us everywhere we go but it is still a worry as he hasnt had it yet.
William is off to Chestnut Tree House this weekend as we're going to London for a few nights and already he seems excited about it so I'm sure he'll have a fantastic time. We've got a few days booked in over the summer holidays too which will take the pressure off as I am dreading the holidays when he isnt at the Camelia Botnar nursery. Such a shame they dont have the funding to remain open all year round as they used to.
On that note, please if you can do pop along to the summer fayre at Camelia Botnar, it is on 8th July 10am-2pm. The nursery is fully charity funded and is the only one in our area that is for disabled children and children with special educational needs so if you know anyone or if the company you work for is looking for a charity to support please tell them about this one!
