Journal

Saturday, September 5, 2009

Blimey o’ Riley!!!!! How many months???!!!!!!

I bet you’ve all been going stir crazy!!!!

It’s a bit like watching Lost or Heroes, when they suddenly decide to pause in the middle of a series!!

Well let’s get down to it then – God where do I start?

Charlie.... is now 6 years old!!!
His statement of special education needs at school finally came through and he has been awarded 630 hours of funded support from Education Department. This basically means 3 days per week support, either one to one or within a small group. In actual fact the school have assigned Charlie one to one support all day everyday because of his behaviour/problems/risk to himself and others!

Charlie is flourishing for this support, and actually stated that he LIKES SCHOOL!!! I know – I had to hear it more than once to take it in!!!

On 3 occasions Charlie has been awarded “Star of the Week” – the first for “Being Gentle with Other Children” – Bless!! The second was for “Enjoying School” or something and the latest for good behaviour during a school trip.

All in all, apart from a few minor misdemeanours he is on the UP – and in actual fact is a completely different child than he was a year ago.

Amy is now 3!!!!!

Amy’s type of Juvenile Rheumatoid Arthritis has now been diagnosed as Polyarticular Juvenile Rheumatoid Arthritis which affects both of her knees, ankles, wrists and elbows.

In December we took her to Bristol Children’s Hospital, to see the Paediatric Rheumatologist for our area, who was brilliant and has a Rheumatology Nurse who I can phone to ask questions or talk to whenever I need.

It was decided that Amy would return to Bristol to have steroid injections in all her affected joints – this needs to be done under general anaesthetic for children and Bristol is the nearest Children’s Hospital to us.

Between Christmas and New Year we returned to Bristol Children’s Hospital, where we stayed in a ward just across the corridor from where Jamie practically lived and Amy received steroid injections in all affected joints – wow her symptoms melted away and it was like it had never happened!!

Amy has even started going to Ballet, which she loves.

She was also started on a course of oral Methotrexate – which is an immune suppressing drug (arthritis is the body’s immune system in overdrive attacking joints) and also used to treat Cancer. She has to take this once per week and needs monthly blood tests to keep check on her blood counts and liver function as well as monthly eye exams to make sure she doesn’t has inflamation of the eye, Uveitis.

All had been going great, until the recent Swine Flu scare when I was advised to stop giving Amy her Methotrexate. After a 6 week break in this medication I then spoke to a different member of Amy’s Rheumatology team, who had no idea why we had been told to stop Methotrexate and told us to restart it.

This 6 week break caused Amy’s Arthritis to flare back up and her symptoms started creeping back, along with a new diagnosis of Uveitis in both eyes – a condition that can accompany Juvenile Arthritis and that can potentially cause damage to eyes and loss of sight if left untreated.

This flare up began in June this year and we’ve had a difficult few months with weekly appointments to the Orthoptist to monitor her Uveitis and some weeks of eye drops every hour in both eyes, and then worrying side effects from the eye drops that needed further eye drops to correct!!

In August Amy returned to Bristol to have the steroid injections again, and was put on a 10 day course of oral steroids for her Uveitis and is due to receive her weekly Methotrexate by injection instead of orally – meaning a weekly trip to the hospital on top of 2 monthly trips for bloods and eyes.

Amy is just like Jamie was, high pain threshold and very easy going when it comes to blood tests, taking medicines etc... So this isn’t really affecting Amy’s quality of life as much as people would imagine. She very rarely complains, and to tell the truth it takes a Spanish Inquisition for her to even admit where if at all the pain is.

Like before, Amy’s Arthritis Symptoms melted away and we can carry on with life, like it never happened, almost!!

This new term Charlie has moved to class 2, with Jamie’s old teacher and Amy has started going to the school’s nursery for 4 mornings a week.

Any other news?

Ah yes – we are now the proud owners of 4 chickens!!!!

Dave decided one day that he quite liked the idea of keeping chickens in the garden, so bought an Eglu (funky 20th century Chicken House with run attached) along with 3 chickens, from our gardener; 2 young chickens and 1 year old Bantam.

We promptly named the youngsters Dora & Scooby and the 1 year Bantam is Rosie (I got mixed up when told their different breeds and thinking that Rosie was a Rhode Island I called her Rosie as in Rosie Red)

All was going excellently – I was stroking and handling the chickens daily and they had become more tame, especially Scooby, who was the eldest of the 2 youngsters and my favourite.

Then one day my gardener told me that Scooby might not be a female – over the next few weeks or so I may notice certain tail feathers sprouting and eventually Scooby may start to cock a doodle do – apparently chickens are difficult to sex before a certain age!??

Sure enough Scooby was definitely a cockerel a few weeks later, without a doubt, and so I found a local chicken farmer willing to re home Scooby on his free range farm rather than the alternative which was to be dinner.

The very next morning we woke to the sound of cock a doodle doing from the garden.... Dora!

I’d had my suspicions that Dora was showing the same signs of being a cockerel too, but my gardener had assured me 2 days earlier that Dora was definitely female... it would seem that in the absence of the dominant cockerel Scooby that Dora suddenly found her voice!!!

So Dora was also taken to the kind chicken farmer to join Scooby and as replacements I chose 3 more young chickens to keep Rosie company.

Now we have a Cuckoo Maran called Shaggy, a White Sussex called “The Colonel” and a Rhode Island Red Crossed with something called Marge. Rosie is half their size but has taken role of top dog from day one and is extremely bossy and pecks any chicken that gets too close to her and so the 3 new chickens all sleep cuddled together in one nesting box while Rosie sleeps with the other nesting box all to herself!

I will upload some photos of the kids and chickens shortly, and not leave it so long before the next update, because I’m sure I forgot loads of stuff!!!

People can still keep an eye on us through my Facebook -

http://www.facebook.com/kelly.rendall

I have also made some changes to Jamie’s website www.beebo.info – making it more dedicated to the Neuroblastoma Warriors – which is where I have lots of other sufferers, survivors and Angels of Neuroblastoma featured with their first name and photograph which links to their websites so that other parents going through Neuroblastoma can have access to contact and support from other families going through the same thing – with Neuroblastoma being so rare many parents feel isolated and lost when their child is newly diagnosed – and I have been told that my website is a great source of comfort and support to them – even after I started it 6 years ago I am still receiving requests from parents to include new children from people all over the world.

Also I am in the process of transferring this Caringbridge journal to a more modern version of the website which will have the option of better photos and stuff – so will update with a new link when it’s ready


Love Kelly
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www.beebo.info

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