Tuesday, 31 May 2011

The Simple Things

Its amazing how the simplest of things brings about an hour or two of happy playing between a couple of friends.

Our Becca and her friend M had come in saying they were bored so I gave them a tub of chalks and told them to go decorate the driveway........here's three of the better pictures that they drew and thought I'd share them:

I also thought I'd share with you some pictures of a rose I bought as a dry stick for 50p about 6 years ago, don't ask me what its called cos I haven't a foggiest lol :P

Monday, 30 May 2011

From the other day

Found these photos we took on Saturday when we went to the football match - before we got the phone call about our Felix.

Mother Nature to the naughty step please!!!!!!

Had to have a trip upto A&E last night as nasty Mother Nature blew our gate shut! Nothing spectacular about a gate being blown shut......unless a 10 year old's left wrist just happens to become the filling in the gate/gatepost sandwich!

Heard the gate rattle as if it had shut then heard the blood curdling scream of our Becca!!!!!

Tears running down her face she couldn't say anything as the pain in her wrist was so horrendous. Made her keep it under running water for at least 5mins while I got the ice-pack sorted.

Now with Mother Nature on the naughty step for making the gate bang on her wrist, in steps Horrible Meany Mother. I thought she'd be fine after the ice-pack and it would settle down, uh oh not this time! Two hours later she's still looking a bit pale and isn't using her left hand, I know the answer but I ask the question "Does it still hurt sweetie?", we get a very upset Becca slowly nodding and she says "Can the doctor have a look?"

Off we go to the hospital, thankfully we didn't have a major wait to be seen in triage who packed us off to x-ray. Went and had the "pretty pictures" taken of her hand, she handled it quite well actually considering that when they moved her hand she was almost on the ceiling!

Got back to the triage area and the pics were already there - they send them electronically now which means no more sneaking a peek! The Doctor showed us where she broke it and she's got if I remember rightly a splinter fracture on her 5th Metacarpal. The nurse that came and put her cast on was lovely and helpful, he went to put this netting thing on but it itched Becca straight away. Told him about her being on the spectrum and had sensory issues, his reply was well then we'll just take it off and put this cotton wool on to keep your arm warm instead then. Becca was full of questions of whats that? whats that for? why do you do that? he def had his hands full hehehe and he didn't appear to mind answering the battery of questions. She told him he was awesome when she found out he helped saved lives as well as put plastercasts on bless her. The only time she got in a flap over it was when some of the excess wet plaster got on her trousers!!!!

In total was in and out including getting cast on within 1¾ hours which must be a record considering it was just after teatime! This is the pot she has on until Wednesday afternoon when we go back for fracture review, she's only got a back-slab (half cast) at the moment and is coping better with I thought she would:

Thursday, 26 May 2011

Answers???? mmmmmm you decide!

Well we went to see the Rheumatologist (the physio and the paediatric) and in we raised our concerns.

We explained about how Becca is in pain a lot of the time especially when she comes out of school and towards the end of the day. Even gave her a letter to show that I'm having to take medicines up to school the majority of the time. Rheumie examined Becca and said that there was no inflammation at the moment in the joints or any restriction of movement - almost felt like by her saying that Becca shouldn't still be in pain.

We discussed Becca's meds and she looked shocked that she was taking so much and it still wasn't working. I asked about any support for her knee when it hurts ie a brace, apparently they don't like bracing a child and will only brace an adult's joint; this is so that the child uses the joint and muscles to make it stronger - sorry don't buy this, it just sounds like they can't be bothered to help her.

I asked the doctors "so where do we go from here then?".......

.......and they're brilliant answer????..........

......"Well I can't do anything for her so we'll refer you to the Paediatric Pain Clinic in James Cook Hospital (this is the other hospital near us) and we'll discharge you from this clinic as I don't think we'll need to see you again as yes Becca is hypermobile but she's by far not the most severe case we've seen"

When asked what about exercises and physio etc they said the Pain Clinic is multi-agency led and this involves their own physios etc so now got to wait for the appointment to come through from them *insert a dirty big great sigh*

Gonna see what they come up with and if still not satisfied then going to ask them for the referral to Great Ormond Street, just so fed up with the system now! :(

Time To Demand Some Answers!!!!

Why oh why do we have to fight for the basic care for our special kids???? Anyone got an answer.....nope me neither *shakes head*

We've got a follow up appointment with Becca's Rheumatologist and can foresee how the appt will go:

  • We'll walk in Rheumie will comment on how well Becca is walking now since the last time she saw her
  • She'll ask how things have gone since last appt
  • She'll ask for the physio's opinion on how she thinks things are going
  • She'll then try to fob us off that everything is ok and that we won't need to see her again for a long time blah blah blah

BUT...... this is where the scenario will change, we (as her parents) will turn round and say to Rheumie

  • what is she going to do about the constant pain Becca is in?
  • we'll say how tired she is at the end of the school day and that she is that sore AND tired she flings her school bag at whoever is collecting her as she can't carry it anymore
  • we'll be asking how a child of 10years old is supposed to live on painkillers that half the time don't even touch the pain - the gp has prescribed stuff for becca and she is at the maximum allowed for each medicine :(
  • we will also be asking for a referral (which is our right as parents) to the rheumatology clinic at Great Ormond Street Hospital in London.

As a parent I hate to see my daughter in pain but at the same time I hate having to fill her with medicines everyday that don't even appear to work. Whose to say that in the future her body will become immune to these medicines and then when she really really really needs them there won't be anything anyone can do for her!!!!!!!!!

Take care my friends and thank you reading my rants again, I do appreciate your comments so please leave them underneath xxxxxx

Monday, 23 May 2011

A sad day on Saturday.........

 .....as we got a very unexpected phone call to say that one of our Mum's cats had been found dead in a neighbour's garden.

As a family we had decided to go to a local charity football match to benefit Cash For Kids (they help disabled and disadvantaged kids) but just as the 2nd half kicked off I got a phone call to say that a neighbour had found poor Felix (she was only 17mths old) in another garden. We took her to the vets and when they examined her they said it looked like she'd been hit by a vehicle which ended up in multiple broken ribs, an injury on the underside of her left hip and unfortunately internal bleeding.

As a parent I didn't know how my kids would take the news of Felix passing but they have on the whole taken it fairly well. When we got the phone call we told the kids straight away and Becca got upset which is completely understandable but it went straight over Stevie's head - almost as if it hadn't happened. When we were at our mum's Becca got a bit clingy and curled up with my brother and my ex (the kids dad) while I sorted things out with the vet, whereas with Stevie he just went in and played with his pot of Duplo as if nothing had happened which was quite surreal.

Thought that the kids had taken it quite well considering their Autism and possible Autism; Becca had a small problem falling asleep but was ok once Daddy had curled up with her for a bit, then later on Stevie came down saying he felt unwell on the inside as well as being a little bit sad still about Felix    :( bless them but they did go off to sleep ok in the end. Today Becca has been subdued and Stevie has spent the majority of the day glued to his DSi in his own little world.

Just want to end this posting with some piccies of Felix to share with you as she was a gorgeous little pusscat; Felix and Tiggy (her brother) were the only two kittens born to their litter and have spent all their lives so far together as my mum chose to have both kittens. Poor little Tiggy is wondering round wondering where his sister is and just can't fathom out why she's not coming home.

RIP Felix 01/12/09 - 21/05/11 you will be missed by all who you knew you xx

Thursday, 19 May 2011

We have a results!!

Tried to post on here the other day but blogger decided to go offline, so take two on telling you the results we've had lately ;)

First up on the 12th May we had our Multi-agency Autism Assessment Team (MAAT) clinic appointment, at this appointment we found out that our Becca was formally diagnosed as being on the autistic spectrum and that we would now be passed from CAMHS to the Autism Outreach Team (AOT). We also got asked to sign a form to allow consent for the diagnosis to be passed onto the AOT and school. Over the weekend we received the official paperwork from the MAAT clinic which says that Becca has been diagnosed with the clarification of Aspergers Syndrome.

We went into school this morning to speak with the Deputy Head about a school trip that Becca is partaking in tomorrow and the attitude towards us has changed considerably from 7-10 days ago when we asked for some help smoothing little details out for the trip. Why should it take a "label" of a diagnosis for them to start helping Becca more by explaining in detail what is going to happen on the trip to Whitby????

Our other result is that we now have a referral for a Wheelchair Assessment which was instigated by our Occupational Therapist (OT). We're just awaiting some further feedback from the consultants/gp then we will get our appointment. This is a major breakthrough for us as Becca really struggles on long days out like a day out at Whitby etc. Will keep you posted as and when there is an update on this.

Take care everyone and keep smiling, will hopefully have some lovely pictures to show you in my next posting from the trip to Whitby. School have agreed that I can meet her towards the end of their trip to collect Becca and take her the long way round to the church at the top of the hill, this is because otherwise she would have a walk of 199 steps to get to the church.

Love and hugs to one and all, thanks for reading xxxxx

Thursday, 12 May 2011

OMG I've left it how long since my blog!!!!!

Hi there followers, I'll start with apologies for my absence but here goes with my update for the last couple of months.

First update is that Becca's pain that she incurred back in the beginning of February didn't disappear until just before Easter. She ended up having an x-ray then an MRI done to find there was nothing in the soft tissue of the knee which was quite a relief. It was decided between the Orthopedic and the Rheumatologist that her kneecap kept subfluxing (partial dislocation) and this was causing her the pain and discomfort as well as the inability to walk on it fully. She had to use elbow crutches to get around for best part of 2½ months because of the pain. She had to have some physiotherapy to help stretch the muscles as they had shortened while she couldn't/wouldn't walk on it; poor Becca was in a catch 22 situation she wouldn't walk on the knee as it kept "clunking" with each subflaxion but then due to the pain this caused her she couldn't walk on it. She was also dosed upto the eyeballs with pain relief which most of the time didn't kill the majority of the pain :'(  so sad for someone so young.

Becca had an assessment by an Occupational Therapist (OT) back in February and it was decided that one of his colleagues would come and work out in the community with Becca at school. This started this week and she seemed to enjoy it, each session lasts between 30-60 minutes. The OT has referred Becca to the Wheelchair Services because she has mentioned to him that she gets tired quite a lot in her legs due to the Hyper Mobility Syndrome (HMS), we should have been to see that but it has been postponed while they wait for her consultant to get back to them.

We've also found out that our Stevie has HMS in his shoulders, hips, wrists and fingers. It has been decided at the moment that he doesn't need any physiotherapy but we will see how this goes in the future. The physiotherapist did say thought that Stevie has a style of hypermobility in his shoulders called "winging" where when he puts his hand behind his back his shoulder blade extends further than it should do due to the amount of hypermobility in it.