Tuesday 20th December 2011

Thought I should do a quick update before Christmas because I know a few people are keen for one! Since I last wrote William has been fairly up and down. After coming out of hospital last time he proceeded to get about five colds in a row. This meant for about 7 weeks he was sick at least once a day despite us feeding him much slower than usual. Don't get me wrong, when I say sick I mean sick. I've met many parents who say my child is sick a lot and then the child proceeds to dribble a bit of milk down their chin! When William is sick we get a whole feed of 150ml half digested lumpy milk which he first chokes on rather dramatically then projectiles out of his mouth. We reached a point where we got pretty fed up of all the sick and were worried about him continuously not getting the fluid he needed. He also kept spiking temperatures so I rang the community nurses who popped out to see him. They talked to the ward doctors about him who asked to review him on the ward. Turned out he had tonsillitis so they put him on antibiotics and after a week or two he was much better. He is being much less sick now but we're still having to feed him slowly so he spends at least half his waking day attached to the feeding pump.

In the midst of all these colds he's had a couple of bad spells with his seizures. At the time, in hindsight, when he probably was coming down with the tonsillitis his focal seizures (where he blinks rapidly) increased and at times he was having them every couple of minutes over a few hours. We were in discussions with his paediatrician about giving him a short course of a new medicine (to us) - Clobozam. We have this at home ready to use but she left the decision with us. We decided to sit it out a bit longer and within a few days he'd sorted himself back out. A couple of weeks later he had a spell of bad days where his spasms and tonic clonic seizures flared up. Again he'd have a couple of hours each day where they were really bad but he gradually came out of that too. At the moment he's fairly settled although I think he was a bit wheezy this morning and his temp was up again a bit so we'll see. Hopefully there's nothing else brewing, at least for another week or two!

Following on the from all the sick we had a good chat with his doctor about the possibility of him having a nissen fundoplication, where they tighten up the entrance to your stomach to stop sick coming back out, but the doctor wasn't sure it would help William as we think his sick is cough induced. However earlier this week we met William's community paediatrician for the first time and she was much more optimistic about the operation and thought it might help him so we'll see what happens. The community paed is a doctor based more in the community who will coordinate the services William receives such as his physio, OT and speech and language therapist. She will also get involved later when he starts nursery in ensuring they are equipped for him. She will also take more of a role in overseeing William's general development and health, whereas his epilepsy will remain with the neurologists at the hospital as it's so severe. She had a good look at him on Monday and was a little bit concerned she couldn't locate two certain parts of his body (ones that only boys have!). She'll keep an eye on him and check him again next time we see her but this could mean him having an operation in the future as it increases your risk of getting cancer if not acted upon, hopefully though this won't be necessary and they were just hiding!

Despite all these goings on medically William has been super busy. We celebrated his birthday just over a month ago with a jungle themed party with some of his nearest and dearest at our house. It was a lovely day and William was relatively in good spirits considering he'd been ill. He had much fun playing 'bounce the balloon off my head' with great aunty Jan in the morning! He received so many lovely presents and we were really touched at how many people sent him something. We made a little video of him playing with his birthday toys to send out with his thank yous, but I thought I'd share it on here too. Click here - http://www.youtube.com/watch?v=X9ZLGxf6TzU
William has been really busy over the Christmas period so far. Firstly we were given tickets by the children's ward play worker to visit a local Christmas attraction. William was able to take a train ride to meet Santa and his reindeer and alpaca, ride on a 1920's merry-go-round and browse the craft stalls! Later that week we attended the hospice Christmas party where William met Santa again and got another present off him! The party was brilliant and it was a real privilege to be a part of it. This week William went to the Holly ward Christmas party, where yet again he met Santa! It was really lovely to go to a party with lots of his friends and some of his respite nurses and community nurses were there too. You can see the photos here: https://www.facebook.com/media/set/?set=a.10100242427332478.2608514.199702150&type=1&l=89a00be157

In other news, William has made a few new friends recently at his play group and at the hospital. His new chair is now here and in action. We are in the process of ordering him a specialist bed ready for the new house. The physio is in the process of ordering him a standing frame. I have been to visit another family's adapted home and was blown away by how lovely it was. We have exchanged contracts on our house and will be moving hopefully at the end of Feb once our new house has been finished.

That's a quick run down of life at the moment :-)