Wednesday, 8 May 2013

one helluva update

Je suis tres desolee mais j'oublie de ecrire mon blog pour beaucoup de temps.

In other words, am very sorry again. It has been too long since I wrote a blog entry. Not cause I didnt want to, but for some reason time seems to have slipped away so fast we're in May already.
Anyway I promise todays will be lengthy.

I shall start with Harry. Much has happened since I last wrote. To set the ball rolling here's my little Harry blue eyes. Yes showing a RB trait but still so sparkly blue.

I posted the following on Facebook. It sums up a milestone for Harry nicely...

Omg I never shared this!!!!!!!!! Harry went to Preschool this morning with William. He gets 2yo funding cos of his special needs. His visual impairment teacher wad there as his 1to1 and he loved it. I was so worried about him being safe, but I have to learn to let go and let him find his feet in his own way. It's just hard accepting he may hurt himself but when I am with him I'm responsible for him and not having that control isn't easy to accept. BUT I am over the moon he had a whale of a time and he's chattered non stop about having a nice time at school and playing in the water. I wanted him to go whilst William is still there so he can hear a familiar voice whilst he settles in. They've had to change the whole room layout to accommodate him and they've had training in looking after him which is fantastic. All the other kids smothered him trying to look after him as they've been told he can't see much and they need to look out for him. My superstar Harry is on his first wee road to finding his independence, way to go little man. I am so proud of you xx

Actually its a major milestone for me too. The little girls adored him. Isobel asks daily if Harry is coming today. The school were keen to say he has 15hours paid for and I can add additional sessions. But I think my nerves will only allow the one at the minute. But I have to reiterate how wonderful it was to see him so happy. It would have been horrendous if he cried when I left him. I enjoyed a lovely hot coffee and did my housework in record time before I went to pick him up. It was sort of quite nice not to have to monitor him constantly but I didnt half miss him.

He's really come on leaps and bounds with his development. He seems to be catching up, but sadly not in growth. He went to the hospital for some investigations into why his growth curve resembles something more like a downhill ski run. They put on some magic cream to numb areas to take blood. He was none too impressed and cried.

We then went to x-ray. He went mental as we pinned him down whilst they took x-rays of his wrists and hands. His face was purple, covered in tears and gooey runny nose stuff and he screamed til your ears hurt. The poor radiographer apologised constantly, poor girl I bet she was glad when it was finished. Harry changed instantly back into the litte lady charmer he is at that point. He fluttered his soggy long eyelashes and cooed 'bye bye lady' in his uber cutee little voice. She melted when he asked for nice kiss, and offered his puckered mouth.

That soon changed when we went back for bloods. Screaming Harry again. I am so not looking forward to Birmingham next week. His reaction to all things medical gets worse. I don't suppose I can blame him.

These tests will see if Harry's growth system is working ok, if he has any disease or something that affects growth and I'm quite positive all will be ok, but I can't help feeling that his chemo has meddled with him. Cancer has already robbed most of his sight, if its robbed him of growth too then it better stay away from me!!

It will probably be donkeys years before we get the results. He is back in Birmingham for his EUA next week. It will be 9 and a 1/2 weeks since his last. Something I am nervously terrified about. They postponed his appointment by 10 days so they could accommodate 2 new babies diagnosed and on chemo. Good in one respect as they trust his eyes will have behaved so they could move his appointment, but bad for my nerves. I am already playing the what-if game. What-if there is something new and its beyond the remit of the laser, and 10days could have made a difference? Irrational I know.

I am friends with a load of Rb Moms on facebook, and they are amazing people with a wealth of knowledge having 'been there done that' but what is worrying is the number of their children who relapsed after months of clear visits. I cannot yet get my laurels out and will make do with resting on my holly leaves. A sharp nudge every now and then to remind me that Harry still has a long way to go before we can breathe that huge sigh of relief and rest into the aforementioned laurels and smile away that Harry has well and truly kicked cancers ass.

For now, he's still kicking and I will make do with that.

Away from Harry, we received confirmation that William will join his siblings at Quernmore school. He is very excited and asks every day if he can go. I hope he is still excited in September.

Matthew turns nine in a few weeks, I so cannot believe where that time has gone. He has asked for a real football and wants to got for a pizza with a few mates. Parties are not for him - he's far too grown up. Oh okay, I sorted the grown-up invites/sorry messages for his mates. He really is growing up - until he remarked 'don't forget I want a chocolate birthday cake and party bags' Not so grown up really.

He is really tall, his feet are a size smaller than mine. I've just had to kit him out with new shoes/wellies and clothes.
Madeleine wasn't wanting to be left out so she too grew loads and ended up with some new shoes, wellies and clothes. Ask Rachel, I am not sure where my children (apart from Harry) get their tall genes from. I do know its costing me an absolute fortune. Plus growing children equals larger appetites and my fridge is emptying more rapidly. Our local Asda would go out of business if it wasnt for me!!!

Oh well, I will wind up now. I have so many blogs to catch up on and a house that needs cleaning and oodles of clothes that need name tags stitching in. I may not bother with that, whats the point? They'll only grow out of them in no time at all!


1 comment:

  1. So glad they are all doing well, it must be hard too on brothers and sisters, they seem lovely children.