2 Cor 12v9

Wednesday, 2 November 2011

Rocky Road

So we brought Scooby home on 17th October after a month in hospital. Then we took him back on the 19th. Then home again on the 21st. Then back in on the 24th. And home again on the 26th. You get the idea - things are not looking good. His seizures are out of control. We've gone from two or three three minute seizures a day to up to twelve seizures a day that are mostly lasting between ten and twenty minutes. The nature of the seizures have changed - they are more 'shallow' than they used to be in that he is stretched out instead of curled up and he can still talk throughout them, but they go on for what feels like forever and we have to give him his rescue medicine to try and make them stop, but it doesn't seem to be effective. As always, he is baffling all the experts. Each time he goes back in, a new plan is formed, medicine doses go up, but almost as soon as he's home it all starts again. He's currently on seven different medicines, plus the rescue ones they give him through a canular whenever we have to take him in.

Again, I don't want to be writing about this. So I will write about a happier occasion - Rocky's birthday. My baby boy was four on Tuesday. I really can't get over it - he is such a three year old in every way that he really doesn't suit being four. I am much more reluctant for him to grow up than any of the others, even Baby (who, btw, needs a new blog name as she is now 20 months which is officially past the baby stage) whose growing up just excites me rather than making me sentimental.

He, however, was ready to be four and to receive the presents that came with it, so I had to go with the flow. Unfortunately, Scooby had gone back into hospital with Richard the day before so we had to go with plan B (we haven't ever just made plan A for anything for a vey very long time) which was to spread out the festivities over several locations.

First I took the four children to McDonalds for breakfast, as is customary, for a gooey breakfast.



He opened a couple of presents there.


 Isn't that the best look of anticipation ever?


 The Tongue of Concentration... 



Ah, googly eye cards. You gotta love 'em.

The he came home and had bonus time on the Wii (boys are such simple creatures to please).

I'd asked him what he wanted for a special birthday dinner and instead of asking for Chinese food or home made pizzas like the others would have done, he simply wanted scrambled eggs, much to my relief as even I can manage that one.



In the afternoon we went to the hospital with the rest of the presents and got a huge surprise! The night before, Scooby had been really upset that he wouldn't be at home for his brother's birthday, but I told him the party would happen wherever he was, so he needed to get busy planning some ideas for it. I was thinking he would come up with some simple ideas, like Simon Says and musical statues, but he had roped the hospital staff into turning his room into a birthday grotto! There were lights hanging from the ceiling, disco balls shining around the room, music playing, a birthday banner on the wall, two birthday cakes and a card and a present.





We had a great time - we played Pass the Parcel and musical statues, opened his presents and had a birthday feast in a side room. 



The party planner, very pleased with himself.





 *UPDATE* Since I wrote this, we've been home, back in again, and home again (I couldn't get the photos to upload to the internet from my phone at the hospital!). He was in for four days this time, as his seizures are getting worse. He's dosed up to the max so we could bring him home for a little while, but we know he'll be going back tomorrow or the day after. He's now had his second dose of chemo but it will be another couple of months to wait until we know if it's working or not. Until then, we have to use whatever we can to keep him going.

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