The Haven comes to Glasgow.............

..................Yes, Linda was in Glasgow and we met up for lunch!!

It's funny - any time i'm with Linda now seems to be spent on "Skye Time!". A slower pace and a bit of quiet for us both. 
I dropped Peter off at college and headed into town. For some reason (maybe because i  - in my head - had switched myself to the slower pace) - the buses and the cars and general hubub seemed to be so much noiser than usual. 

I wanted my peaceful place!!!!!!!


So we met just before 12 and headed to the Enable Office. I needed to check up on something and Linda was keen to meet some of the folk we talk about. So intros done, a bit of chat and we went off for lunch. They knew JUST where we were going.

KIMBLES!!!

Linda has heard me talk about the place and i always get her box of choccies from there when we go to visit. They have a deli as well as the choc shop and a cafe. Food is gorgeous and the menu is good.

We opted for a bowl of soup each (sweet Potato and Chilli - not too hot, but enough of a kick). 
And we had a cheese and fruit platter to share. Well - it was a bit different from a sandwich and it was yummy. Normally it's served with oatcakes, but we asked if we could have bread instead - no problem. 
It was sooo tasty and the chutney was delish!!! 

No - i didn't take photos - we were too busy scoffing it all to think of feasting YOUR eyes on our lunch!!! But i MIGHT do it next time!!!!
We also had some apple, pear and grapes on the plate as well.
And we sat and caught up and generally enjoyed!!

Next thing we knew, Peter and Lauren had arrived at out table. They had been at art class and decided to pay Kimbles a visit for tea. Best bit was that the grown ups paid!!! It was nice for Linda to meet Lauren as well and she caught up with Peter.

But our time went far too fast - we could have spent another 2 hours there and it wouldn't have been long enough. 
It was nice in the middle of all the bustle to have a bit of calm!!!

Mind you - at one point we heard a noise - it sounded a bit like gunshots (but was prob just something falling!!) Linda said "that sounded ominous". My reply was that i didn't really care what the noise was - i was enjoying my lunch too much!!!!

So that is us.
 Peter's toe continues to improve. We were at the clinic on tuesday and they said we could just continue to dress is on our own till the wound heals up. Plenty of dressings and the clinic phone number if needed, but to be honest, we're most likely just as quick heading to our GP.

I will leave you with the thoughts of our bread, cheese and chutney!!!!

Up before the crack of dawn...........

.................... What am i saying! It was WAY before the crack of Dawn.In fact, Dawn still had the sense to be in her bed snoozing peacefully and was showing no signs of even thinking about wakening up!!!

S Day had arrived.
Surgery.
At last - going to get Peter's big toe nail seen for for all time - hopefully!!!!
We had yet another post op assessment and met the surgeon 2 days before the surgery. 
She seemed to be ok, but Lou and i began to get a bit worried that she may not quite get why the procedure should be done under a general rather than just letting our GP do it. Had that deja vous feeling for a few moments, till she asked "So, what diagnosis does Peter actually have???"

We explained and she sent one of the staff off to get a form for her to fill in. She explained that this form just meant that she could talk to us about what was going on. (should have told her earlier that the guardianship already does that!!!!!)

So Friday morning - up early and got ready.
One son to be dropped off at Strathclyde University for a boozy musical weekend and we headed off to the hospital.
Now, we were early, which was great - it meant we got a parking space near the door and thankfully we didn't need to pay!! 

Off to the Day Surgery Unit. Now - i have to admit, i was a little worried. This is the first time that Peter has had anything surgical done in adult services. We had been assured at the first pre op that there wouldn't be a problem about us being there with him, but i did wonder how much would actually be passed on.

The Nurse came to get us and said that only one of us could go through, so off i went and lou went for a cuppa. The girl did say that they didn't seem to have any notes for Peter. I fell off the seat laughing - this was a regular occurance at Sick Kids - the mystery of the case notes!!!

So they had to take details again. we got the portable dvd player set up and watched Cinderella - much to the amusement of the staff!!!! They checked it was ok for Peter to wear his jammies rather than the regulation gown - it was.

So a stream of doctors - check that Peter knew why he was there, draw an arrow on his foot to the toe that needed done and the anesthetist to make sure Peter was ok. Man, what it is to be popular on a friday morning!!!

9.15, the nurse support said Peter would be going round to theatre soon and she gave me a stylish sack like gown to wear. After checking there were no sneaky cameras to take photos of me in such a thing, i put it on. Off we went, with Peter, Jack and Gus Gus (the mice from Cinderella) and the Cheshire cat!!!  

Cannula in and anaesthetic given  - i went to get Lou. The nurses said to come back in about half an hour. So we went for another cuppa and waited. 

Why does time ALWAYS go so slowly ??? I felt i'd been away weeks and it was only 10 minutes!

SO we went back - Peter not out of theatre. Which got me freaked because they said it would be half an hour tops!!! Lou came back to the waiting area and we  - well, waited!!
A while later, they got us in - Peter still tubed and sedated, but we could wait. 

And wait!!

Eventually, they asked me to go through to recovery. Peter was out of it - zonked!! Usually he's out of the anaesthetic fairly quickly, but this time he wasn't. Till they told me they'd given him a dose of medazolam to help relax him!! No wonder he was zonked!!!!!

When we got back to the bed bay and put on Cinderella again - that made Peter open his eyes fairly quick.  He had something to eat and drink and then put on Toy Story - yup - he was on the mend!!!! 

We got out mid afternoon, armed with painkillers and an appointment to get the dressings changed. Peter asked for some ice cream in that kinda voice that said "i've been in the wars mum - i need goodies!!!"

Quick dash to the shops while Louise got ready to go off to work (matthew had already left for his night shift).

So after Lou went out - we were on our own. To be honest, we w ere bothe shattered, so I sent Peter off to bed then headed myself.

So our weekend passed in a haze of painkillers for Peter and ironing for me.
We even attempted a shower this morning - half a roll of cling film over the dressings and a plastic bag!!!!

Calum was in today, so they had a dvd fest - Fawlty towers and goodies to eat.
Toe still a bit sore, but he gets the dressings change in the morning, so i'm hoping that we can get rid of the mad shoe thing he has to wear and get the trainer back on.

But i'm telling you - i will be in bed early tomorrow night and not out of said thing till at least 10 am the next morning!!!!!1

My Life is like herding cats..................

........................Almost impossible to do, but funny to watch.

As long as you're on the outside looking in and not in the middle of it all!!!!


We have the ongoing saga of Peter's toenail. Pre op before Christmas and told we should be done and dusted by mid feb.
So, when i got a letter about the psychiatrist coming to visit again and the time not being suitable, i knew i had to chase up the date again. I didn't want to change that appointment, only for the op appointment to come in and be the same day, or the day after.
So i sat down, phone in hand and wondering if i would have time to book a few days respite before said op.

Eventually, i got the consultant's secretary who said Peter was in the next batch of letters to go out, but she thought there was a cancellation for the 8th of feb - would we be interested???

Yes, yes and duh - yes!!
Only thing is, it's not our nearest hospital, but not that much further to go.

So that sorted, i got the psych visit sorted as well - that's now on the 1st.

I'm telling you -  herding cats to try and sort out things.

I began to think about a few days away in London for me and Peter - go to a show, see a few things.
I did look on line, left it, went to the travel agents - got a price and then said i'd need to check what the balance of the budget we have is. 
But when i got home and mentally went thru the figures, i knew it was pushing it - a lot!

So i went back on line last week - managed to find a cracking deal at a hotel, central enough, checked ticket prices - i knew we had the money, but still. 
Something stopped me from hitting that button.

I don't know what, but i just couldn't do it.

The following evening, my brother phoned.

Now - he rarely phones and we keep it short, sweet and civil.

(it's a better relationship than i have with my sister - i cannot remember the last time we spoke. Oh, yes, i do - and it took me a LONG time to get over that. Thankfully i have some good friends and a couple of good cousins who got  me thru it all)

Anyway - bruv had phoned to let me know that our Uncle Peter had died. 
He is (not saying was, because he's a part of our lives) a lovely man. Married to my Dad's big sister for nearly 60 years. Writer of books on Cicero (found that one out on Amazon), translator of ancient texts, Professor of Classics.

But to me, he was and is just Uncle Peter - plain and simple.
When i tried to explain to my friend, WHY i liked this man - it was really hard.
I always just liked being in his presence - even when i was young. Something about being with him. I remember when i was about 9 or so, walking into his study and loving the room. He didn't chase me out, or tell me off - just a "oh, hello - it's you. Terrific!"

My cousins - all 5 of them - are now spread far and near (from Glasgow, to London and south coast of England, to Spain then Australia  Any further away and you're coming home the back way!!!). I can't always say we've always got on all the time, but i have tried to kind of keep in touch on some level. 

And now, as an adult, i can see a lot of what i loved about my Uncle coming out in them in some ways.

Sitting with them today, it was hard to believe that i and 2 of my cousins are parents to children who are 25 this year!!! 

And none of us look a day over 22!!

And the younger children - 2 of them have the same long red hair that Louise has.

It was funny at one point - we were talking to Stephen - Well - Lou was and i went to say something and he said "you butt out - i'm not talking to you!!"

My retort was that i would kick his ankles and run (he's about a gazzillion feet taller than me!!) and he replied " that's so like the kinda thing your dad would have said!!"

Which led to him telling a story about my dad to Lou, to add to the story i'd told his daughter Olivia last night about Stephen giving me loads of street cred when i passed him in the street one day at school. I went to the girls convent he was at the boys fee paying school. He was nearly 16 and i was 12 - he waved and all my friends asked who the good looking boy was!!

Funnily enough, to my pleasure, the nuns never did get wind of this boy waving to me or me waving back - i would have been toast!!!

I will miss my Uncle, but as i get to know my cousins better as an adult, i think i may still know him well!!!

So i'm going to try to keep in touch a bit more - there are stories to be heard!
And photos to see!!!

The Funeral was today. We went to the church, then on to the cemetery. I had no (or little clue) where we were going, so armed with Lou's sat nav and following Stephen's car (with Tony looking out the back to make sure we were still there!!)  Lou and i started singing "i'm sticking to you - cos i'm made outta glue!!!" I know - random, but it seemed funny!!!!
We arrived at the cemetery and followed the line of cars in. Lou's comment was "where are they going to drop him mum?!?!?!"

Just as well some people were NOT in the car with us - that comment wouldn't have gone down well. But she's not my father's granddaughter for nothing!!!

We got out of the car and Stephen said something like "oh, you caught up with us". She said yes - had the sat nav on.

His retort was "well, why didn't you shout the directions to me?!?!?!?"

Can you tell i share my weird and wacky sense of humour not only with my children, but others?!?!

So tonight, raise a glass to my Uncle Peter - he's still out there - somewhere, probably with my dad and hopefully they are both thinking we're not too bad a bunch!!!

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!!