OMG Fubar is back! but I am LUCKY!

Well FUBAR is BACK!  Well you know I'm a stubborn mule, (I'd like to add old but, some of Oatie's followers might throw some EGGS at their screens) LOS (LOS= laughing out silently).  Well I might be a naive NEWBIE, but...

OMG the photo! no before you report me to Blogger it isn't a part of anyone's reproductive areas... it's VOCAL CORDS!!! (NOT MINE!!!) but what I'm ranting about today!

Well those who have been following for a while, will know that I have had a "lump" in my throat.  I lost my voice for a month around Christmas (yes my hubby cracked open the Champagne), and well since then I felt like something was "ripping off" if I was swimming fast or ran fast...

YES, I was also told that I was "imagining" it by the walk in clinic, and well my GP did say that he would refer me and it was a 5 month wait.... I waited and waited and well, despite our fabulous Canada Post strike, I hadn't heard and went to see him, taking OATIE and my husband, we kind of had to squeeze in his Cupboard of a consulting room, I'm sure he felt that my husband and Oat were HEAVIES!

Well as it turns out, I was NEVER referred to the Ear Nose Throat guy at all... I apparently had to go for a test that he told me it was "optional" 'something to fill the time, while I was waiting for the referral'  OK you can throw the EGGS now!  WHO, WHO has time like that to just saunter down to a clinic often down town 45 mins away to go and sit there and have a not very useful xray done to fill the time!

WHO more so when you're caring for someone who isn't independent AT ALL!  YES I know I should have gone back for more visits and pestered the guy, but he was good for his word till then.

What I thought was unforgivable, was that he left my referral letter WAITING on his desk on wait for the return of this "optional" scan... and then FILED IT!  YES he FILED IT!.... I could have had CANCER and he FILED it, not a single call from his office, like 'are we still your Dr's?', where's the test results, are you ALIVE!!!!!  WE'RE CONCERNED YOU NEED THIS SCAN..... nope NOTHING!

So anyway, during our AMBUSH!, the Dr said well it's probably nothing, so my husband said, if it's nothing then PROVE IT, right here, right now!

I went on to saying that my quiet speaking was a loud as I could get, and it's got to the ridiculous in our house, I'm using messenger from the kitchen to call my family down for dinner, and as I can't shout, I ask Oatie to go up and hound everyone and he likes repeating sentences so he bludgeons them till they cooperate!

So anyway, within one hour of leaving his office, I get an appointment to see an ENT!.  I went on Wednesday and..... well despite I have not much confidence in this man, I will get to that in a minute.... and think **** he's operating on my throat!!! The lump is so ANNOYING! that I just want it out!

Well here's how it went... I turn up, wait half an hour, they leave all the consulting doors open so you can wave at the other people, he has 5 patients on the go...  So I tell him about my symptoms and he's looking at me like MAD crazed ENGLISH WOMAN... I tell him it's on the LEFT,and yes I could see the eye roll that took place non visually with him.  So he grabs the device I was dreading the fibre optic which goes up your nose, along you eye sinus and down your throat! The classic "It doesn't hurt!!!)  Hhhhmmmm!!

Anyway, he pulls it out and says, what side did you say!  I'm like the LEFT! he said how do you know that?  I'm like I can feel it, it aches and I know it's the left....  Well you have a BENIGN Granuloma!  A growth that should be removed.... on the vocal cords....

So I'm like great it's benign, expecting to wait a month to have it out... relieved to know what it is... anyway he gives me antacids when I never even had heartburn when I was +70lb's pregnant, I think I've burped twice that I ever remember and once was trying on purpose with my brother after drinking a whole can of coke when I was 11!

Since looking on the net, I found out that it could be from Neck Trauma and he never asked if I had that, I did crack a bone in my neck 8-9 years ago from a obese out of control snowboarder who decided to use a 124lb woman (me) as crash mat! he came over a ridge flying mid air and I was downhill skiing in my beautiful parallels straight down looking elegant and thunk he just landed on me!

So, after he said that and I was counting out the weeks for month for the opp in my head... he said to his receptionist, "we have a queue jumper!"  I'm like well WHY??? he just looked at me?  Well I don't like the look of it!  (I'm like it's benign....)  I said why do I get to jump the queue, what about the other similar cases before me, and you said it WAS benign, so what's the rush.  He said that it HAS to be out within 2 weeks!  Still reeling taking a step back, I'm having admittance and next of kin forms to fill in... going WTF?



arghghghg is what I'm thinking.... so I fill it out, and hand it back, and the receptionist said is July 5/6th OK? I'm like sorry!!! did you say the week after next?  She apologised and said she wished it was sooner, as they are trying to OPEN ANOTHER OPERATING THEATRE FOR ME!  I'm shaking my head thinking WTF?  She's looking at me all teary-eyed... and I'm scowling at her like WHAT!!!!

Why would you be opening another operating theatre for me, when its BENIGN!  WHAT ARE YOU NOT TELLING ME?  I asked her repeat the date as I was shocked it was within 2 weeks.

Well the next morning I get a call, Yesterday, asking if I can go in on MONDAY they had a cancellation, they said they still wished it was SOONER!  !  !  I'm like WHY!!!!????  I don't know what to make of the mixed messages... just that it will be chopped out on Monday....

So, today I spent the entire day at the hospital.... for PRE-OP, don't get me started... about that!  (It's basically a waste of government funding having a department that you meet the anaesthetist and check that you won't die during the procedure....)  England is rather awful, but you spend one day there.  The idea is to make the operating day smoother... so I was told I'd be in and then out...

Now after doing the pre-op and being told that I'm a super candidate for being operated on... they say they want you 3 hours before and will be in 4 hours after, so how is that streamlining ANYTHING!?!?!?

OH! and the best bit is that they won't tell you what time to be at the hospital till the afternoon-evening before.  I did say that I have a 'special guy' that one person, stepped forward to look after my Oatie, and this lady has 4 kids of her own around my kids ages and one older.  And I need it to be done in the morning, so this poor woman doesn't have 7 under 12's in her home one of which has CP!  (as her 4 will all be at School for the day) so she'll have my eldest and Oatie for the day..... and if it's an awful time, then she may not be able to help me as her husband doesn't get home till 7pm!  They were like NOPE! you get what you get... I was like don't you have ANY COMPASSION!!!  I'm ASKING BECAUSE I NEED THIS, I NEED to know that my 3yr old CHILD who no one wants to look after, is and can be looked after by the one person who has offered/able to!  I wouldn't be ASKING if I had 3 able-bodied children.  I DON'T and I've given up today to help you do what you need for the day and I'm asking that you take in to consideration that I have a kid with special needs, and if you don't know already, NO ONE WANTS TO LOOK AFTER KIDS WITH SPECIAL NEEDS!!!!  (sorry for the generalisation, but you know what I mean...) and yes today I felt very much in the sphere of the world of disability... thinking OMG I thought going on a plane was BAD!  There is 'nothing' for the caregiver of permanently dependent dependents...!  I could have asked a friend to pick me up, but not being able to utter a single word, I can see that right from recovery room, I need someone who pretty much finishes my sentences to be my advocate to stand up for me.... as after all the other general anaesthetics I've always been able to ask for water or ask for my husband.

They said I would be in pre-op today for 1-2 hours, well I was there for 2.5 hours!!! YIPEE, this is what they did, they asked me to take any medication that I'm on with me, listened to my chest, took my heart rate and BP and my weight and height!  and THAT's IT!  like REALLY!!!  What was the point of that.  After that I went for my CT scan that was scheduled from our AMBUSH... so which they never told me that the CT involved intravenous dye!

So I will not be able to speak for 10-14 days, not a sound.... (I know, I should have got some sponsorship money in for charity as well those who have met me know that I like to chat...) and I raised £1000 for a one day sponsored silence when I was a teen (Yep I talk THAT much) so two weeks! WOW!    

Well I'm going out tonight with me fellow Scouters for a celebration of another year... and enjoy my last drink till I will get some "liquid lunch in" for next week!!!  lol!  Go Guinness!!!  As I can't swallow lumps for a while...

Well at least I have my Oatie, who will play the piano for me....

Well, if it is benign, I'm lucky! so very lucky!!!!, there is so much worse out there, so much worse, what I was struck, by being in the hospital today, was lots of people were in the halls, walking around, being wheeled around like it was their second home.... and all ages, and I was like, I know having a special one to care for is challenging, but at least we're at home and not in this sphere.  So my heart and best wishes go out to all those who are in hospital on an ongoing-long term basis...

Easter Bunny, Parites and Chicken Pox...and.... and.... double test day! YES DOUBLE!

We've gone a bit A.W.O.L recently... I've been having a blog vacation like my dear friend Phil lol!

Well the kids are tucked up in bed. and I'm about to mix a scratch cake (home-made cake) depending on which side of the Ocean lingo you like... for my daughters 2/3 birthday cakes.

She is having her Birthday over 3 weeks, it sounds quite regal really.... Well with the upcoming UK Royal Wedding lol... She not intentionally but has 3 names, all of which were once English Queens lol!

She had one cake on her actual birthday, she was competing... and next Saturday she is having her party 2 weeks later... and she today chose a flat Castle cake,... and couldn't decide between a dolly pick cake and that.. so depending on time, she might get both lol!

Our Skating Season is officially at an end, or it will be after our round up party.  My eldest brought a lot of metal home.  And my daughter... well she's at the lower end of the level my eldest competes at... and although she didn't place but twice.  She actually, learnt not to really care if she got a medal or not, to be a good and nice competitor and she learnt to win and lose with grace.  She made a point of high-fiving all the girls who did get a medal (my son does the same).  And she's finally realised that these other girls who do get medals are all my eldest's age.... and that she only came last once.  She beat 7&8 year olds... she actually got 4th lots... which was brilliant!

And.... we had double test day.... My eldest tested the next dance... it wasn't his best skate of the dance,... but he PASSED!!!  My daughter, PASSED her Dutch Waltz... which we found out from another mum/mom that the dance partner used to a few years back insist that they were 8 years old... so that was another honour for her...and she passed it.  I did feel rather sorry for him, having a 6ft+ guy, having to skate in a almost 90 degree squat...with a 6year old and 5 days she told me!!!

I have been running and swimming and actually lost some pounds... would you believe... ! lol! my throat lump thing is still annoying me... but by not shouting and changing how I speak or how I swim, it's much more manageable... the worst bit was not being able to cheer the kids on at their comps... in the end I asked some other parents who didn't know me at all, if they wouldn't mind cheering on the girl with so much sparkles on you're dazzled!

Oatie had has his chicken pox vaccine... it knocked him for six, so we were a bit late in doing his assessment video... but him hacking up his guts, wouldn't have been a good video...  We go in a few weeks time for our next ABR visit.... his illness has really knocked our hours quite badly....

My daughter went to an "educational 6th birthday party today" I don't object to museums, but this was at the little girls house.... and we did manage to persuade the mum to put the Mensa brain quest cards on the side...

Well I had better get mixing that cake... and hopefully if the Easter Bunny comes and after the hunt, if he does... I might get some bench in watching some Pooh Bear Eastery films which are Oatie's favourites...

And.... just in case you're wondering... there are Still no buds on our trees, not a single one, and we still have a garden full of snow!!!

The older kids did a beautiful Easter Bunny Murals in Chalk on our drive...  Huge WELCOME... they wrote the bunny a song this evening and sang at full volume and in different languages so he could hopefully understand one of them.

Sweet Dreams, and hope the Easter Bunny leaves you an Egg hunt...

Oatie - In limbo, a disabled fraud or where?

On Friday we did manage 2:39, of Manual ABR and has his Machine every night but two, since we got  his ABR Machine.

Well while I went swimming and had the "mean swimmer" swimming in the next lane as my muse... (joking about him being my muse, just relieved not to swim with him),... I was wondering about the "F" word, (Future), for Oatie.  Sunday night we did his flashcards with him, and he will always orientate them correctly and he got all correct apart from his newest word that he hadn't seen for 2 weeks, he is so obviously very very bright... and even though it's  2.5 years till he starts Grade 1, that's only 30months...   Why was my head swimming when I was swimming.... well apart from the best place for me to think;

• My eldest school is also having a re-vamp and well there was no mention of adding any disabled facilities to the school, it's not even an old building and had a huge overhaul 8 years ago and even then when they added an upstairs library still no disabled method of conquering the stairs.  We would like Oatie to go there when it's time... but that is a battle to come, for another day...

• The the other recent experience of the whole speech thing at his school, "oh sorry our budget is exhausted..." and I was like with whom?  Oatie is your most severe disabled child, and you've spent NOTHING on him... so who took the WHOLE budget?"  "Sorry our OT is pregnant.... so nothing this year..."

• Parking in a disabled bay WITH our badge WITH Oatie in the car, the scathing looks of the elderly like WHO is disabled in your car....!  (Yep they can push their cart and walk unaided to their car, not saying they don't' deserve their badge, but... what makes them think that they have any right to judge whether Oatie qualifies for his badge)

Well, who needs Google, from swimming regularly, and at the same time as the adult swim-club (I don't swim with them...) but I know quire a few people who do.  I am finding out a wealth of info on disabled services and the best way of accessing them.  Only, there was a disabled swimming group, which isn't open to the public it's organised via a Dr's referral... granted it was for adults... but only because I swam much later today did I ever see or hear of this group.

Everyone says he will walk, and for him, I really hope he does, it would open up the world to him, but if he doesn't walk, he doesn't walk, people can lead a super life without walking too.  But at the same time, no one thought he was "disabled"/ had CP.

So I kind of feel that Oatie/we are in limbo, it's taken a huge effort to keep our disabled and our able bodied worlds both open, and sometimes I'm thinking.... why did I fight for this, to be in both?  (But it is for our family good to be in both, it just is painful from time to time, but that's ok).  It's good for my elder two to have a 'normal life' and embrace their brother's and it's so so so good for the "normal" people to have a reality check with seeing a disabled person in their face, and for their kids, to see that it is perfectly normal for disabled and able kids to mix, and in my opinion, how it should be.  Another blog I follow of a girl called  Ashley, her mum has been campaigning to get Ashley into a mainstream school.


I can now TOTALLY see why we don't see many families with a young disabled member, being in the able world, as it's fairly painful actually...  being in a fairly small town, if you're a sporty family, you tend to see the same people/families around town all the time.

From the able world, you get the uncouth remarks, then they go oops... or they arrange an able bodied activity/social for the kids and ohhh sorry I forgot... or a play-date with the kids the same age... but not Oatie... and they turn and say, "Well he can't do X..." and like I had at the volunteer commitment / no one wanting to babysit.

Where as in the "physically less able world", although we all have our different plights and each of our children all have unique "conditions", we all stand together and that's so nice.

Recently one of the blogs I follow,  of a gorgeous young man called Adam, Sharon put a post about WHY, why don't people look closer to home...

The blanket definition of CP, each child who has CP, it affect them all in a different way.  From love that Max


Oatie is 'lucky' as I don't know if that the right word, but he has the "normal" life just out of his fingertips... always..., he's blipping between the two worlds, his speech, walking improved day by day, but will it be 'enough' in 30 months time?, I wonder where his life will lie, in which sphere able or less abled?  Some day's I wonder if we're a fraud in the disabled world as there are so many kids/adults who have much bigger challenges to climb than Oatie... and then, we don't fit in the "able" world either.  I have to say I feel more at home here in the the "physically less able"  that's why I sometimes feel that we're in limbo,... and more so as we're out of the "medical system" as we do ABR which is out of the medical system.

We didn't do any ABR over the weekend as he really wasn't very well, a parting souvenir from preschool before spring break.  But today he didn't want to eat his lunch, he said, "Mama I'm tired" something he's only said to his dad before and then I said well "eat your lunch and you can have a Nap then?",  he said... "NON!! in his French accent and said " I want BED", so I sat him down for lunch, and he drank his drink and said, "Tired... Tired.... Tired.... Tired... Mama... Tired..." etc so he took himself off to his bed for the whole afternoon, and didn't want to get out of it, he reluctantly came down for dinner and we said he could play for a bit as he'd been in bed, and said, nope! I Tired, I want Buzz Bench (ABR Machine), I sleep!

So as my bench companion (Oatie) went to bed...., I made two pairs of figure skating pants this afternoon for my eldest,  I was hemming them as he went out the door...they compete in the weekend after next for three weekends in a row....

Hoping to get some ABR in tomorrow,

Love Oatie's Mum
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Oatie's bouncing back!

Oatie is bouncing back! ABR support is really great, our Area resident trainer is on annual leave so another branch trainer emailed with some exercises to do get him through his ill period, but he was so so so ill I just couldn't do anything apart from put his machine on, but today he looked like he could be up for his manual ABR. The only thing is, is that mummy got used to having more time on her hands (from not rollling him for hours each day) to play with the kids and have a more relaxing time at home life, I even painted my nails and not feeling like a ping pong ball. But... Going to push the selfishness away and get back on track, Oatie needs me and my other two are so lovely and unjealous they don't mind me rolling him for hours and actually encourage our bench hours, they can see how much ABR helps him.

Phew! That was close...

I have Bronchitis, and the doctor couldn't believe it was my very first antibiotic since I was born!  The Dr said that if it had been left and with the CP, it was almost certain it would have developed into pneumonia, mum and dad have pneumonia radar fortunately!

I'm on my way home, it's a 30min wait at the pharmacy for my prescription so dad and I are buying some things to go in our Christmas Crackers that we make, at least I'll get to go to the Cinema on Saturday after all, I've been looking forward to it all week. and... I'll get my manual ABR back when i can breathe better, I've really missed it with my brothers school skating and my bout of illness.

Love Oatie

I'm at urgent care

Dads taken me to urgent care, I remind mum and dad of Luke he had a full appetite and happy when he had pneumonia, so let's hope it's nothing!! So dads taken me to get checked out, I was so excited for the expedition, I packed some toy cars, taken my Dora DVD to occupy the wait, meanwhile my brother was crying in bed thinking I'm going to die and my sister declared she couldn't live without me, for a little brother who enjoys terrorising my siblings on an ongoing basis, they sure do love me, by now mum will have the sewing machine out to take her mind off worrying.

The Preschool Plague

Being handicapped adds a new dimension to the preschool plague, maybe as my hands are on the floor lots or maybe just bad luck. I've been ill since just after Halloween with 3 back to back illnesses, shook off the first, shook off croup and now I have something else. My mum and dad have kept me home when I was really ill on the ill ill days where as the fad seems to be take ill kids to school with fevers, who by bad luck cough or sneeze right in my face and voila my next illness... I missed school again today, so I might be taking a whirl to urgent care just to be on the safe side.