It's beginning to feel..........

...............A bit like Christmas.
At last!!!!

I can't believe it has been nearly 2 months since i last blogged.
Have i had nothing to say??
Well, no, not really, just not much time to say it!
Such is life in this house.

After the departure of Josh, we now have 2 new workers and some back ups as well.
Ok, Callum started off as a back up worker, but is now doing Mondays with Peter and it seems to be working out well. They have lunch, go swimming and then decide what else they want to do. Usually works out well.
Lauren is doing Wednesday and Thursday. 
Again, going well and like Callum, often thinks of different things to do.

We've had a hospital visit.
Remember the infected toe? 
Well, we decided that after years of infections (and that doesn't even count the times we've managed to stop the toe becoming infected), it is time to get the toe nail OFF. A segment was removed 10 years ago, but the good effects didn't last long.
The podiatrist at the clinic thought day surgery and a general anaesthetic was the right way to go.

Pre op assessment last Wednesday and hopefully, the surgery will be done and dusted before mid feb.

We also had a visit from the psychiatrist from the Learning Disabilities team at the beginning of the month. She has started an assessment and will see if she can figure out these vacant spells and laughing/talking to himself spell that Peter has been having. She'll see us next month, but meanwhile she's getting some of the paperwork our GP has sent to her so she can look at that.

To be honest, even though i'd bought and wrapped pressies, i couldn't start to feel christmassy till i'd got those appointments out of the way.
Oh, and found out who was actually going to BE here on the day.

Peter concentrating!

Simba hiding behind a Mickey ornament!!

Peter wondering if this is our transport home!!!

Luckily Matthew and Lou both have Christmas day off, so it's a full blown turkey and trimmings day!

Hope you like the photos. We kind of have a tradition that we put the tree up together. It may not be picture perfect, but we all get to look at the decorations we have amassed over the years, remember visits to Disney in Paris, being in Yosemite in California. It's a nice afternoon and we generally put on a Christmassy DVD.

What am i saying - there is only ONE dvd we can have on.


Muppet Christmas Carol.

Nothing else will do, and i love to hear Kermit sing One More Sleep Till Christmas!!!!

You can just see Simba's paws under the tree. So far, the score is

Cats 2 - Christmas Tree 0 !!!!!!

I did say that i might take the tree down early, which brought howls of "but we always keep the tree up till the 12th night!!" Lou usually reminds me that i made sure i got home in time after Peter was born to get the tree down. (not that SHE can remember!!!!)

And the last photo - at George Square - with Rudolph!!  


So, by tomorrow night, we will all be home, getting ready for the day.

Mind you - 101 things to do before that - Lou has work, Matthew will sleep off the 3rd night shift and i think Peter and Callum are going to the carnival. (thanks to some free tickets that Enable gave me!!) Paul might go with them - IF i give him enough money!

Whatever your plans over the next few days, i hope you have a lovely, peaceful time with people you love and care for 

Life is a series of meetings and partings...........

Now, i'm not going to get all Christmassy on you - yet.
But i just thought Tiny Tim's words are apt for my life at times......

Over the years we have had many meetings and partings. 
Some good, some bad and some terrible, but mostly, it has to be said, i have learned to deal with them.
Obviously, we have had medical staff - the meeting with the doc to decided to "diagnose" Peter with a condition he didn't have was not the best meeting. And it was a parting that couldn't come too soon!!!

Genetics and neurology came along. Genetics are still lurking in the background, but the other lot have almost fallen off the edge of the planet!!

The partings i didn't really didn't like were the ones where we had met and built up a trusted relationship with medical or teaching staff.  Then they went off to pastures new. Certainly, in the early days it was VERY hard - i felt often i was left in the lurch and then had to start explaining things all over again to someone new, who may (or not!!) think i was a tad neurotic! 

It was even worse when the more or less told you you WERE neurotic and that your problem was that you had "too many professional friends"!!!!!!

Anyway - our latest parting is Josh.
He's been helping to support Peter for almost a year.
But i feel as if i have known him soooo much longer.
It seems like we've known him forever.
As i've said before, he's very gentle, but always knows just how to push Peter a bit further when he needs pushing. 

Josh has decided it's time to go off to Amsterdam to live and work for a while. He felt if he didn't do it now, he might never. 
So, reluctantly i let him go.

Now, i did consider tying him up and locking him in the garage or the boot of Lou's car, but that would have been a bit much, wouldn't it?!?!

[just agree with me and don't tempt me into ways i can't get out of!!!]

So he's Amsterdam bound in the next couple of weeks.
He tells me of good easyjet prices for flights!
My brain is working overtime - a little trip to the city of canals and trams.

All part of Peter's respite and support of course!!
Mind you - i need to work on the outcomes and state my case!!!!


Mind you, we did have nice meetings and partings as well in the past couple of weeks.
We were off to Skye to meet up with Linda et al and renew our acquaintance with Chrissie and her Hubbie who run the B+B. Chrissie is lovely and thinks Peter is great. If all he wants is sausages and toast for breakfast  then that's what he gets.
And the views out of the window are heavenly. We saw the Cullins with a dusting of snow on top and the trees had hues of browns and reds. I would challenge any artist to capture the scene and do it justice.

During our time on the Island, Linda, Peter and i actually headed back on to the mainland.

The first day we headed to Plockton, a little village. Some years ago, there was a fictional police programme set here called Hamish MacBeth. But it was Jock the dug who always made it for me!! (Jock being Hamish's trusty friend!!!)

Now, if you think Portree is quiet, wait till you visit Plockton.
A smattering of houses, a few little shops and a pub.

Oh, and the main street ends in a dead end.
Only one road in and you take the same road back out!!

But the views across the water...............

We went to the Plockton Inn for lunch and loved it. 

The next day, we headed off to Elian Donan Castle, which inspired the castle in the Disney film Brave. Again, lovely views across the water back towards Skye.  And lunch was good.
I know it always sounds busy when we head to Skye, but it's "good" busy.  We enjoy being with Linda and her family and it gives us a break from our usual routine. At night, before we went back to our B+B, we would go back to Linda's and relax - helped by the bottle of Southern Comfort and the Kimble's goodies!

These kinds of meeting and partings i don't mind - because we usually visit every few months and enjoy. And while the partings can be a bit sad, we know that soon enough, it'll be time to head back.

And enjoy!!!

I'm sad to say.........

..................... The shoes have left the building and gone elsewhere!!

Donna from Enable - she of the fabulous shoes and high heels has left Enable and gone on to pastures new :-((
No longer will i be able to comment on the latest addition to her shoe wardrobe!

It is a sad day indeed.

I'll just need to go to conferences she'll be at and stalk her so i can report back about those shoes!!!!!!!!!

Ah, well, life goes on - but I'm gonna miss that footwear!!

And the results are.......................

......................... 2 lines of letters, numbers, brackets and full stops!!!!

Yes, we were back at Genetics to get the lab results yesterday.
This was interesting, not just because after 22 years they had actually found something  but because the Genetics department has moved hospital! A hospital is being built in the south of Glasgow, on the site of the present Southern General. At the moment it's half building site, 100% working functioning old hospital and a smattering of departments from the children's hospital which will be rebuilt on this site and is due to open in 3 years. (yeah - like we've heard that one before!!!) Oh, and a maternity unit and the institute of neurosciences /surgery!

I had lost the map with the directions, but i knew which end of the hospital site this new super-dooper lab medicine building was at, so it couldn't be that hard to find - could it???

Now, the present children's hospital is soooo easy to get to for us. Cross the road, get on a bus, sit on it for 40 minutes, get off the bus and walk up the hill. It's a journey i've done so many times over the years!
But with the new hospital, i had to walk to the station, wait for the train, spend 20 minutes on said train, then get out of the station and find where the bus is to the hospital and spend another  10 minutes on the bus and even tho it dropped us off in the hospital grounds, we still had to search for where we were going!!

Any way - we got there and waited. Eventually we saw the geneticist and he started explaining the results. For all there is a string of numbers and letters, the basics are this - Peter has a deletion on the long arm of chromosome 4 and some extra material on the long arm of chromosome 15. The karotype (that long list of letters and numbers) give the more in depth details on exactly where the deletion and the extra material is. 

The report said that it would be useful to have bloods from Matthew and i to find out if it is something Peter has inherited from us or it's de novo (just a random happening)

Given that 6 months ago, we were thinking that nothing would come of these bloods, it seems odd to be getting all this done .

I didn't cry, but i did ask the doctor to let the initial guy who diagnosed Peter with Prader Willi Syndrome know that he was talking a pot of crock!!!! And my message was to make sure he thinks about what he's going to say to parents before he opens his big mouth!

More bloods taken and to my amazement, Peter decides to have one of the funny little episodes he's been having for a while. For a number of years, he's had vacant episodes - they generally don't last long and you can normally bring him out of it by saying his name or asking if he's ok. But for a couple of years  he's been having them and talking away to himself and laughing . We just thought it was "just Peter" until one of his support workers mentioned it a couple of months ago.

I started to describe all of this to the doctor and Lo - he starts on one of these episodes!!!!!!! Man - i've only been tearing my hair out for years over this to be told nobody else sees it, and BINGO - right on cue, it happens!
So we had a discussion about the best person to get a referral for. We're thinking maybe a Psychiatrist who deals with people who have learning disabilities. 

So big deep breath - got to see the GP to try and sort that out.

And send a copy of the report to Unique to see if anyone who has the same or similar Karotype.

And filling out the forms for DECIPHER, which is a world wide database of chromosome abnormalities, so that if anyone else comes near or matches, we can find out more.

Meanwhile - life goes on as normal.
The world hasn't stopped and we haven't fallen off the edge of the universe.

And hopefully, it won't take another 22 years to get more info!!

Back at the haven again.........

............Yes, we were back on Skye again last week! I don't think i realised how tired and stressed i'd been and really needed time to slow down.

We had made a few plans before we went up. Maybe back to Dunvegan Castle. And go round to Staffin.

So off we went on the tuesday morning. Mind you, Peter had the beginnings of an infection in his toe and i don't think the journey on the bus did much good. (we could get to New York quicker than we got to Portree!!!!)
Linda met us and we headed off to pick up the fish and chips she'd ordered and then home.

We were all so hungry that the eating was done before the unpacking!! 

Mind you, when i did unpack, Linda was laughing at what we'd brought up. Half a ton of dishwasher tablets (all of them bought on special offer), food for John and Gerry the cats, coffee (special offer in Costco), 2 bottles of Southern Comfort and the Kimbles chocs. (the partridge and the pear tree are being taken next time!!!)

After having a look at Peter's foot, we decided that he really needed to go to the GP, so that would be organised in the morning.

Wednesday was our "lazy" day. Appointment made for the GP, we stayed in till lunchtime and then went off for our lunch. Then shopping then the doc. Toe infected and some heavy duty antibiotics. Poor Peter - by this time he was limping about and not feeling too good.

Thursday saw us go to Staffin - there is a Charity called Columba 1400, who have a base in the village. They work with youngsters who may be vunerable, leaving care, isolated - and others. They try to help build up confidence and give them ways of coping and getting on with life. The building itself is lovely and welcoming. We had a look around inside and out and then decided to have lunch in the cafe. Gorgeous views out of the windows and even more gorgeous food to eat. And it tasted so much better because all the profits go back into the charity to help more youngsters.

Evings - if you've read my blogs before - are spent chatting at the kitchen table and putting the world to rights. With a liberal dash of something alcoholic and some chocolate. It doesn't get much better. Peter enjoyed Lachie's company and they watched DVDs and fav programmes.

Thursday we went to Dunvegan Castle. I'd always loved the story of the Fairy Flag when i was young. And Skye and Dunvegan seemed so far away from my life in the city. So it was good to go back there again. Flag still there. And Prince Charlie's waistcoat still there. And we still think he was a bit of a soft looking wimp!!! It was only Flora who saved him!!!!

As usual, our time flew past. I wanted to stay, but the thought of the 3 humans and 2 cats pining for us at home made us get on the bus!

As if - pine for us?!?!?! they prob did all the housework in the hour before we got home!

We are going back mid october. So i didn't feel too bad about leaving this time. And as usual, we have more to talk about when we go.

So i feel rested and refreshed. 

Now all i have to do is the last of the financial management plan and send it off.
And pin Lou down to a day she is off so that the Social Worker can   visit. Not as easy as you'd think - Lou has a crazy rota, so after finishing her night shift tomorrow, she's off for a week. But the SW is duty worker next week, so can't really go out much. Then Lou has 2 weeks induction into life that is PICU. (basically you don't have much of a life for 5 weeks out of 6, then you sleep for 6 days and it's time to go back to work!!!) We're thinking the 3rd of october. Yes, nearly a month away.

Trouble is, i'm not sure if it's october 2012, or 2013 we'll be having this meeting!!

Off to our own GP in the morning to get the toe checked. Think more antibiotics will be needed and maybe a referral to get the toenail sorted.

Back on that roller coaster.............

....................And I really DO want to get off.

It has been a fairly crazy few week chez Johnston.
Nothing big or life threatening, but a million and one small things all happening at once, or at least, one after the other.
Now - if it was one BIG thing i could cope, but not a run of small stuff.

It started just over 3 weeks ago. Long story short, we decided to get another cat. Were going to adopt one, but due to circumstances it didn't happen. So Lou had a look on Gumtree, we found a kitten and got in touch.
Next morning when we got up, turned on the laptop and found it had a virus and the firewall was denying access to the internet.  
So off we went to pick up said kitten (went well ) and go to buy new litter tray plus kitten food.
On the way home, it rained so much, i thought we were sailing back up the motorway!!! Got home and Lou went to get my friend May to let her meet the new addition.
By the time may went home, i was wondering if we'd done the right thing - hissing and growling a plenty and litter trays at dawn .

Sunday morning got up. Cats still alive - the had been kept in separate rooms!! And then i found a note from Paul - the washing Machine seemed to be having problems.
Oh and on top of all that, i got a form about one of Peter's allowances, to be filled out to see if we could still get it.

Monday was spent phoning - vet insurance, wet and washing machine man. Needed him most!!!
Tuesday, the vet - to find out that our "she" was a "he", so not only a sex change, but on to our 3rd name in 4 days!!!! The cat is now called Simba!

Wednesday took us to the Enable office  to get help with the form and on to Kimbles for hot choc!!!

Thursday the washing machine got sorted.
Then the postman arrived with a letter. From Genetics. Results. 

It seems that Peter has a deletion on chromo 4 and additional material on 15.
At the moment, i'm not quite sure what it means, but i'm made another appointment with the clinic, we've waited 22 years - another few weeks is nothing.
went shopping with Lou later. We had to pick up a dress in town. Alas, on our journey, we had a bump in the car. Bolshie woman in front who told Lou to get outta the car in the middle lane of the M8!!! I didn't see her gesture, and if i had, Lou would have been told to stay put. Woman was very intimidating and very loudly told Lo to Come see what you've done and demanded her insurance!!! Luckily the police arrived and told us to move over to the side.
Poor Lou - this wifie's car had one scratch. Lou's had a bashed in grille and a smasshed up reg plate. But she insisted on getting the dress!!!

Friday - well, trip to the Docs - Lou was very shaken and when i explained to the receptionist, she said she'd get the GP to phone me. He did and said to bring her up. He was really good . Calmed her down.
Can i just say here - our receptionists are always really good and they KNOW i don't call for   just anything. And they listen to me.

Insurance was phoned and most of the rest of the day was spent talking to folk about the car or taking it to the garage to get the estimate. Mind you, as we were about to walk out the door, the social worker phones - he times it right - last time he called i was mopping up hairballs and trying to load up the washing machine!!

And so our days went on. I couldn't get a self referral for physio for nearly 2 weeks after the bump - told them to forget it, if  i was headless by then, i'd deal with it.

Mind you, for a couple of nights after the bump, i'm sure Usain Bolt was celebrating at the top of my spine and across my left shoulder!!!


A few other piffling things happened and i nearly decided not to head for Skye.
But we're going.
In the morning.
I NEED THE BREAK!!!!

Mind you, we did have something nice - i met up with some of the Unique families again - we went to kimbles and had a nice afternoon. A couple of families we hadn't met the last time were there and it was nice to meet them.
I had to giggle at one of the Dad's - we were chatting and Lou was there and said something about working in Sick Kids - the dad said "oh, i thought your face was familiar!!
This was Lou minus the uniform and with her hair down!!! 

So i'm away to pack the last of the stuff and get myself to bed early (which means it'll be about midnight!!).
But first - a strong drink!!!

All Quiet on the Eastern Front............

...................I should actually know better by now than to say that things are quiet in my house - it usually means something is a brewing up and will most likely blow in my face some time soon!!!


The boys had a good time at Kielder again this year. Canoeing, sailing, zip wire - would have been nice to see all the photos - if some little toad called Peter hadn't decided to delete some of them!!! So NO photos of the visit to the Birds of Prey Centre.
Thankfully, the one of Peter holding the Olympic torch was still on the memory card. I would have been gutted to be told he got to actually hold a torch, then not to have seen it. One of the visitors to the centre had carried the torch thru Perth a few weeks ago and brought the torch to show everyone. 
Something for the scrap book me thinks!!!!




Mind you - getting the boys home was a bit problematic. There had been horrendous rain and landslides on the track between Newcastle and Edinburgh.   
Much phoning and trying to explain to the guy from the train company that my boys WERE booked on one train(which he said didn't exist!) and asking if alternative arrangements were being made............. I decided to ask Lou if we could drive down to meet them.
The centre said that they would bring them up to Gretna, which cut an hour off out journey. We met them at the Outlet Park.
Shops.
Clothes
Mum's credit card if needed - what more could a girl want?!?!?


We decided to get something to eat (total rip off, as most places just off motorways are). Paul was grumbling that he was tired and really just wanted to get home and go to bed.
Lou told him NO WAY!!
If she had drive nearly 90 miles thru rain and spray from Eddie Stobart trucks, she was going to take advantage of SHOPPING!!!!


We did buy a few things - best bargain was a Gap zipper for Peter - £20 instead of £35.


And some chocolate from the Cadbury shop.


We eventually got home and i spent the next week wading thru washing. Fun!!!!


This week it's Matthew's turn to be off on adventures. He's camping on Skye - near Portree. Linda met him on monday when the bus arrived in town and promptly dispatched him off to the camp site with Harry, our taxi driver. He promised Linda he would phone and arrange a time for meeting up for lunch. 
That will raise a few eyebrows in town - Linda - with an unknown man who got off the Glasgow bus!!! My but isn't she a hussy that one!!!


Heck  i'm not saying anything here i wouldn't to her face! The only thing she said was they wouldn't go to Marmalade - she's been there twice in the past week with friends, so a 3rd visit, with a guy would really cause heads to turn!!!


Matthew is home on Saturday. I think he's been having a good time. Weather has been good and he's done a fair bit of walking about that part of the island.


Meanwhile, i'm meant to be working on a financial inventory and management plan for Peter's guardianship. Oh man - it's like losing the will to live - slow death by paperwork. Luckily, i can print off bank statements from the internet, but i need to get letters confirming how much he gets in allowances. Those phone calls are done and i can just print off what i need when i get it all together. But the management plan is so much harder. We have to account for what his money gets spent on - not piddly little things, but if i buy clothes or stuff - we have to show where his money goes. I can understand WHY, but i'm not an accountant or auditor. I have a couple of questions i need to phone and ask about, so that is on my "to do" list for next week


Next month, Peter and i are going back to Skye. I can't wait - a few days to relax, chat and just enjoy. I have been stashing away contraband!!
Ohh - that makes me sound dodgy, doesn't it!!


I have some posh nosh for the cats - the applaws food that seems to go down well. And some other food called Purely - Lilo enjoys that, so i thought i'd get it.


Fairy Platinum dishwasher tablets, to give said machine a treat!! Well, it's used to the Co op own make stuff, so it'll get a thrill! 
And of course - the Southern Comfort.


Tea bags and good coffee also stashed away and Kimbles choccies will be bought!!!


And the dealing with Peter's support is ongoing and booking some respite with the animals is  a must  - i may book myself in. Log fire, e reader. Cup of tea. I'd be happy!!!


So, actually, it's not been that quiet. But for once, nothing major, no tantrums, no fights, no bodies to be disposed of in the recycling bins - for now!!!