Day +443 (phew I think we’ll have to stop counting and maybe just call it Day+a lot!)

To all you faithful blog readers out there a big apology from a very useless blogger! I've been rubbish in keeping things up to date, mainly because everyday life is so busy I never have a moment and there is so much to say I can’t even start as I know I’d never finish. But, guess what, I’m on holiday for 4 days and I’ve found a moment so here goes with the most important things first…

Jesse is 8! His birthday was on Sunday 13 April, we spent it in Greatham with Chloe and had a lovely if dramatic day (there was a lightening strike and the power was off for a couple of hours). He had wanted money, armour, a jelly mould and military surprises. He got some money, no armour (it’s too expensive so that’s what the money is for), three olden days jelly moulds and loads of military surprises, including many camo goodies, an ammunition case and a medal. He wouldn’t let us sing Happy Birthday (he hates singing), blew out all his candles and tucked into an enormous slice of Scooby Doo cake. I wasn’t worrying about his appetite that day! Here are some photos…

Opening a mountain of presents...

Scooby cake with angel candles!

No singing "Happy Birthday"

Jesse nearly ate all of this slice, unbelievable!


Generally Jesse is fine…he has loads of energy, is mostly happy, hasn’t had diarrhoea since the end of January and can eat anything he wants (the only slight problem is that his appetite is erratic and he is a very faddy eater but he’s gaining weight slowly so I try not to worry).


We slowly weaned Jesse off cyclosporine (one of the two immunosuppressants that he was on) in the hope that his immunity would increase but his lymphocyte count still isn’t very good. As a result he needs up to 12 meds a day still and iv immunoglobulins every three weeks. We were hoping that all this could be stopped and he was booked in to have his Peg and Portacath out at GOS on 31 March but his CD4 level came in at 125 (it needs to be 300 to stop everything). It felt like a big disappointment as normality beckoned, but we’re over it now. So the lines stay in for now but with any luck should be out at the end of July. This is because…


Jesse is going back to school! On 21 April Jesse will be joining a wonderful Year 2 class at Balfour Infants School. At first it will only be mornings but we hope to increase it to full time as soon as he is ready. It has been a long and difficult battle getting him used to the idea but over the last few weeks of the spring term Jesse has been going into school with his tutors (who have been fantastic) and acclimatizing to school life. We have had a few tantrums but overall it has been very positive…on the last day of term he was “Star of the Day” and led the class into assembly. We struggled with the idea of keeping him down a year but think we have made the right decision; he feels very comfortable with his new class and says he has lots of friends already! He will have help through the day with a dedicated Teaching Assistant, so I think he’ll be well supported.

I think those are the most important points, everyday we realize how lucky we are to have him with us still. It is wonderful to see him grow in strength daily. Everything else pretty much ticks on too. All the other kids are fine (except Bernie who came down with chickenpox yesterday)…the shop is busy,Derek and I are fine too (if a little exhausted by everything). I will try and write a blog the week Jesse goes back to school with some pics of him in school uniform. In the meantime here are a few recent photos that can probably tell a better story than any words. We are very grateful, especially to that very kind and brave man in Germany who was Jesse’s donor, we can’t thank him enough!
lots of love
Claudia
x

Jesse enjoying the snow!

With a snowball

Throwing it!

Bernie at the window...it's the first time he's seen snow!

Jesse doing archery at Greatham with Derek and Sally.

Jesse the ninja, thank you Ruth for a wicked birthday present!

Jesse on the slide at Greatham in full camo as usual!