Sunday 23 January 2011

Pinch Punch...

Siblings at play...Joel not concentrating hard enough..  Notice the tongue is only slightly protruded...

 

I'd set my alarm to get up this morning.  My alarm went off just before 8am, followed by a text message from Louise - "Where's the key?".

Oh rats....  I'd taken the key for the food cupboard in the parents room last night, so now Louise couldn't have any breakfast because her All-Bran, bread, pop-tarts etc were in the cupboard, locked away for safety. It was in the pocket of my jeans by the side of my bed, in Walsall. I texted back...  suggesting pizza, sausage rolls, Petits Filous or Ginsters Chicken & Mushroom slice that I'd left in the fridge from the day before.  The response was expected, but if celebrities can eat Kangaroo anus and Witchita Grubs in the Australian Outback, I don't think some 1 day old pizza or a Ginsters slice is too bad for breakfast.  Apparently, none of that is as good as All-Bran. I'd have thought it would have pretty much the same effect, but there you go.  I told her I'd be there shortly.  Truth was, her mom and aunty wanted to come with us to the hospital and I couldn't pick Aunty Marion up until 9am.... and I was STILL late picking her up, and STILL forgot to take more yoghurts and milk from our fridge.

At least I didn't forget the Monsters Inc. DVD.

...but did forget Cars.  Bad daddy, bad, bad daddy.

 

Today, I joined the elite club.. Louise has been a member for a few days, my uncle John has been a member since last Sunday.... but today, I received my induction.  A punch, square in the face, from Joel.

While trying to make todays Lego model (Lego Creator, model 5868 if you want to know), Joel became quite agitated.  His fine motor control was playing havoc again and he was really struggling with putting some of the smaller pieces together.  I didn't want to help unless he asked me to, but I could see he was beginning to get angry with himself.  It must be infuriating for him, and confusing - he's done countless Lego models.. I imagine he wonders why he struggles now..

Eventually, I asked if he would like some help, and he muttered 'yes'.  I sat close to him, and he still became more agitated.  Then he threw the piece he was working on across the room.  I sat there and said "That's not very nice is it?" and then WHACK!  Right in the kisser.  I was stunned..  he seems to be getting angrier and angrier as the dosage of his medication is reduced.  I sat there, he sat there.. then he gave me a hug and I told him that I loved him, but that was not acceptable behaviour.  He's lashed out a few times today..  I think he's hit Louise at least 3 times, and flung several items across the room.

It's ironic that his fine motor control is preventing him from putting tiny lego bricks together, but he can still play iPod games and manage to accurately land a decent punch.

One of Louise's friends visited just before lunch..  She'd phoned a few days ago and managed to get through to the ward.. she didn't know where we were except for the Birmingham Childrens Hospital, but still endeavoured to locate us as we'd been switching our mobiles off when in the hospital.  She asked what Joel was into.. Toy Story?  Lego? Ben 10? Power Rangers?  Check to all of those.  Today, she arrived..  with goodies.

It's really moving when friends go to so much trouble to get in touch in times of need. She didn't have to buy Joel any presents, or go to so much trouble to find us and speak to us to offer words of comfort...  but she did. That's what she's like.. always been caring, and probably why she makes a great foster mum.

 

I think Louise feels a little embarrassed when Joel hits her..  I know I do...  while I know I had little authoritative power over Joel before he was diagnosed (my instructions would always fall on deaf ears), it is still embarrassing to be smacked in the face by him.  He didn't ever do this before, and I fear that visitors who witness this might think that it's normal behaviour for Joel...  That's what I'm embarrassed about.  I keep finding myself excusing his behaviour and blaming it on the steroids and pain killers..  which the registrar did say to expect..  I just wonder whether our guests believe us...  and I wonder if it will carry on after recovery...  How do you control it?  We can't punish him for it as it's the medication affecting him, but he's going to realise that he can get away with it and still get a hug and love after he's hit us...  how long before he crosses that line of doing it because of the medication, and it becoming part of his normal behaviour?  Louise doesn't agree..  I just worry about it.  I don't know why I doubt her. She know's her stuff.  I just worry too much.

 

Little Fat Farmer

Yesterday, we lost the little fat farmer from Joel's Combine Harvester that he'd built...  I thought it might be in one of the oxygen supply tubes or perhaps in Joel's nasal cavity, but thankfully, he was seeking refuge behind the radiator.  Louise found him in the night... I don't know if he was cowering there for long, but after a good dusting off, he was good as new - and sat in the cab of his harvester..  His coffee cup is missing, but at least that will reduce the risk of agricultural accidents and further burden on the NHS resources.

Would like to meet - short, blocky, level headed lady with gsoh

 

 

By 4pm, Joyce and Marion were ready to go home.  Eve started crying..  she hates leaving us - I think she just hates leaving her mom, but I say that I'll drive them home. Saves them paying £15-£18 for a taxi, and since it's Sunday, I don't have to worry about paying another £10 for parking if I come back.

Last night, I ordered them a taxi from the same firm who charged £18..  This time, the driver had a tom-tom and got them home in no-time - using the M6 as expected.  He charged them £15.  So I was right when I thought it would be less than £16 when I queried it the other night.  I have no idea why I'm worrying about a trivial thing like that - but I hate being ripped off, and I hate seeing my elderly relatives getting ripped off too.

Anyway, I almost get home and realise I need to fill up with petrol before I head back to the hospital, so I pop to the petrol station before dropping everyone off..  £66.87 to fill the tank.  It cost £45 to fill up when I had that car about 3 or 4 years ago.

I get home, dropping Eve and Joyce off..  I pop in to the house and pick up some more yoghurts for Joel...  Then I joke with Joyce that it will be £14.50 for the lift home.  She's still refusing to accept any money off me for the taxi's from previous journey's home..  It's not fair for her to have to pay the taxi fares especially when she's looking after Eve and staying at our house while we go through this.  But refuse she does...  I'll pay her back somehow.  Have no idea how..  she'll only return it as something for the kids anyway, but I would really like her to spoil herself for a change... after everything she does the rest of the time as well!

 

I got my new shoes on...Joel walks with us to the exit of the hospital

 

I drive back to the hospital and park in the same street as before.  It's quite cold out, but luckily not too far to walk.  Joel seems to have become a lot calmer by the time I return...  maybe it's visitors as well that is making his behaviour the way it is?  He's very loving now, very calm..  then he starts getting really antsy again.  He's becoming very argumentative, raising his voice, demanding things, and being silly..  not in a funny way, but very annoying and naughty.  We try to ignore it...  it's becoming more and more difficult to ignore.  I'm pretty sure people on the ward can hear through these walls as Joel is shouting and throwing things around.

I think he may be having a sugar rush...  visitors keep bringing sweets.  He wants sweets.  He doesn't normally eat many sweets.  He's craving sweets instead of meals now...  and to some extent, we're giving in quite a lot of the time..  must remember not to spoil him so much..  otherwise it's going to do him no good at all when he comes home.. He is definitely having too much sugar..  Nesquik Milkshakes, sweets, puddings - and that's just the hospital food, before you even get to the treats the visitors are spoiling him with, and we're allowing..  That has to change come tomorrow.

It's difficult though, not to spoil him, with what he's going through.

Perhaps Colin has the right idea.  He never did bring us that Kit-Kat.

 

 

It's now 8:45 and Joel is still wide awake and being very naughty.  Louise has just gone to give him a kiss goodnight again, and he's whacked her right on the nose.  He refuses to apologise or say why he did it.  This upsets me greatly..  IS he aware of what he's doing?  Does he regret it?  I'm sure he doesn't mean to do it...  but I hope it doesn't last long.

2 comments:

  1. Hi All, I have let the girls at HOS know about the blog and logged them on today so thay can follow the journey with you xx

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  2. Hi All, I have let the girls at HOS know about your blog and signed them on today so they can follow your journey, love to you all xxx

    ReplyDelete