Tuesday, 19 October 2010
Deion is back home and in considerable better shape than me. He woke up after a pretty rough time feeling okay, and lets be honest, pretty high on drugs. I think that the hospital should give us parents some of those drugs while we are bedside waiting for good news...it certainly would have saved me about three heart attacks, a stroke and half a head of hair!!!
The operation did not go as smoothly as we all hoped, Deions tummy was in a funny place apparently, so they had to open him up and do the gastro externally. He was only supposed to be in theatre for an hour and a half, and I was climbing the walls after two, then the surgeon rang from theatre to say they needed to cut him open and it was still another five hours before I could get my hands on him.
They kept him pretty high on morphine for a couple of days, so he doesn't remember much about the first two days luckily, I'm more pleased about that than anything because it was pretty rough going, poor little guy.
Of course all that matters is that it was done in the safest way and the outcome is what we wanted.
He has an extra scar and a few extra stitches, but once they stop being sore, they will be a war wound for him to boast about I'm sure.
Once he started to feel better, he bounced back pretty quickly, The special milkshake is going in his special tube and he is tolerating it well. he is so glad to be home, we both are.
We should get the results of the muscle biopsy in a few days, and probably a good thing... I'm too exhausted to be stressed about the results right now. All that matters is, Deion is smiling again and it is wonderful to see his handsome face without the NG tube taped to it.
Deion is now well nourished, getting a proper little chubster and although we are having a few teething problems with the tube site, its still worth it. Life is slowly getting back on an even keel!
Thank you for all you lovely wishes and get well messages.
by Sally's World | 8 commentsLinks to this post Email this post
Saturday, 11 September 2010
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Monday, 5 July 2010
Okay, so its now 2 days until Deion goes into hospital for his operation for his gastro tube and his muscle biopsy...he is unfazed, I am a nervous wreck.
The few weeks with the NG tube haven't been as bad as I thought, and like everything else that comes along, its just slotted into Deions life, all of our lives.
I got myself in a bit of a state, so ended up with everything from migraines to ear infections in the fallout.
I know its a basic procedure, I know they do thousands a year...yep, heard it all, "he'll be fine, don't worry"... I get it, I would be saying the same thing to anyone else, problem is, I do worry, its in our make-up as parents, it's mandatory. I hate it, I hate that moment when they put the mask over his face and put him to sleep and tell me I have to leave him with them. His Little eyes looking lost and bewildered as he goes under....I actually have nightmares about it.
Okay, I know Dee is as tough as nails really, he will be fine and they will make sure he's pretty much pain free, and as soon as they call the ward and tell me I can go down to recovery, I'll be fine...the three hours of pacing, biting my nails, pulling my hair out and snapping at anyone in a ten foot radius will be forgotten ...and the second I get to him and see the recognition in his eyes and his arms reaching out for me...I'll relax.
Until then, I will be the bitch from hell, I have turned into a dictator indoors, the clothes are ironed, the meals prepared and frozen, the house spring cleaned,Lists are made... because of course, I refuse to admit that the three adults left in the house would be able to cope and would not actually starve and be forced to wear wrinkled unkempt clothes, without my superior organisational skills...but hey, its how I cope!
I guess it's to do with the fact that ultimately, I have made the decision, and I know I have made it for the right reasons, but if anything goes wrong, if he's in pain, if he hates the tube...guess who I'll blame?
The biopsy results are gonna be hard to wait for, We more than anyone know how life altering those moments the results are read out can be. I'll try not to panic, or dwell or preempt, I can promise to put it out of my mind and not worry until there is something to worry about, but my pants would just burst into flames as it would be a big fat lie...
But one thing at a time.
We will be in for a week then at home for a week, and Deion is strangely looking forward to it and knows he is going to be able to run me ragged, that I will be unable to say no to him for anything...if I so much as hesitate, he will bat those big brown eyes at me and even though I know i'll have been played for a fool...I'll do what he wants anyway!
So wish us luck, I will let you know how he gets on xxxx
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Monday, 7 June 2010
I just wanted to say, that there are times when kids get a bad press, but on the whole, the way kids care, really warms my heart.
When Deion came out of hospital with his NG tube, he was really worried about how the other kids would react if he went back to school. Its not like you can hide it. And I have to say, we held our breath that first day back, after all, we are talking about kids who don't have much experience with special needs on the whole, so it would be new for them too.
Well, Deion was asked questions at first, which he answered, and no-one seemed all that bothered or treated him differently as far as he was concerned, but Deions key worker spoke to me at the end of the day and he was surprised at the sheer number of kids who came up to him and just wanted to know that a) Dee was okay and b) the tube didn't hurt him.
It goes to show that having kids with special needs in mainstream school, works, and works well, not just for the child, but it promotes a caring attitude in other kids too. The teachers I've spoken to have noticed a change in the pupils attitude since Deion started too. It makes me proud now that we fought so hard to get him there.
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Friday, 4 June 2010
I do sometimes wonder where he gets it from, but I am just glad he has the ability.
But even I was surprised when he announced that he wanted to learn Japanese...okay, so I got him the books and CD's he asked for, but on flicking through and realising there are about 10 different alphabets and about 2000 characters, I was less than optimistic...
Well, just a few weeks later, Jordan has memorised most of the alphabet, knows dozens of phrases, has learnt what alphabet is applied where and can read quite a few phrases as well.
I am very impressed, of course Jordan thought maybe a trip to Japan to try it out was in order...nice try J, a trip to the nearest Sushi bar will have to do!
Wednesday, 2 June 2010
Gosh, I'm glad to have found another minute so soon. I have just got in from work and thought I'd click on quickly.
A weird night at work tonight.... I got called to a police station for a kid accused of arson, accused of burning down a house (a vacant one luckily). Now, just because he was caught running away nearby and is known to police doesn't mean he's guilty right, so I went with an open mind.
Of course, the kid denied everything in interview, and I really tried to stay impartial, but the truth is his hair was all but smoking....seriously, the kid stunk of burning rubber and god knows what else...so, my advice, if you're sitting in an interview with soot stained fingers, reeking of burning building, and have your eyebrows singed off....then maybe it's not the best idea to tell the interviewing officer that you have not been near a fire, set a fire or know anything about a fire!!!!
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Monday, 31 May 2010
Wow, Hi everyone,its been a long time. There has been so much going on, I don't know where to start.
Home life/work/family...all totally crazy, and although that's nothing new, it has been getting on top of me more than usual. Six more hours in the day needed here!!!
Deions been in and out of hospital quite a bit, had a few bugs and chest infections. He has a nasal gastric tube now so he can have special calorie laden milkshakes right into his tummy. the swallowing got so hard for him that he just couldn't stay well, so we have this tube temporarily until his has the operation to give him his gastreostomy on the 17th June. I've forgotten how much is involved, all the ordering of the supplies (from four different places) the tubes, syringes and pumps...wow, but its all come flooding back.
The botox in his legs didn't make all that much difference,despite three hours of stretches a day! so he has to have the operation on them, but that's a few months down the line, and we have been having hydro therapy every week to help with the pain and movement...then a few months after that, he's having an operation to reroute how his bladder works, which is a positive thing because he'll have more Independence.
He is having his muscle biopsy the same day as his gastro in a couple of weeks to save an extra anaesthetic. We have made the very hard decision, that if the biopsy shows nothing, we are going to draw a line under it, as it were, no more tests, it will become an obsession, and we still have to live and be happy. Nothing is going to change Deions personality, its too big for that LOL! but I don't want his whole life to be about finding out whats wrong instead of living. And quite simply, there aren't always answers.
The other kids are great, Robyn just finished work experience, and I felt very old as she left in her grown up office clothes every day...Her and Jordan are both in the middle of exams now and are not stressed at all, which is not how I remember my exams being, we're having no tantrums, no all nighters, no ripping the hair out and throwing text books out the bedroom window...weird!!!
Better go, sorry, no time for frills or pictures, I will be back soon, I promise, I have some hilarious work stories and lots of news on other stuff, I hope you are all well, miss you all.
by Sally's World | 8 commentsLinks to this post Email this post
Wednesday, 3 February 2010
Hello, remember me? I'm that person that used to blog every day, catch up with all your blogs and offer some sort of support (I hope).
For the first time in what seems like forever, I have accosted Dave's computer and have a few moments to catch up and let you know whats going on in our insane lives...
I'm working ridiculous night-time hours, which seems ideal for an insomniac...but I'm not sure when I am supposed to catch up.
Deion is finally getting his botox in his thigh muscles, this should ease the pain until his operation to put his knee caps back down in the right place... where the thigh muscles are tight, all the exercises he has to do are pulling the kneecaps up, rather than stretching the thigh muscle...ouch!
Deion has had some special tests to see how the swallowing is going, his swallow is now unsafe with bread/cakes, anything of that consistency as the tongue is not holding his food in his mouth, so it slips down and he aspirates...hence all the chest infections.
Also plain fluid goes down too fast with the same results...so he has to have thickened drinks.
The doctors are talking about giving him a gastosteomy feeding tube so he can have enough fluid and calories safely...although this terrifies me because its all a bit "de-ja-vu" I am obviously happy to do whats best for Deion. Deion however is refusing, because the only person he knew with a gastro tube was Aaron and no matter how much we are trying to reassure him its different, he is scared. He also, very intelligently pointed out that we wouldn't tell him if he had an illness like Aaron's anyway...which is probably true, not sure how to reassure him really, and that kills me.
We get Deion's neurology results on the 10th Feb...so wish us luck.
I am feeling a little under appreciated to be honest, this may seem selfish and shallow compared to Deions dilemmas... I wonder why everything I do goes unnoticed, yet I am supposed to celebrate everyone elses achievements with gusto... I don't really know how to keep up with all the housework, cooking, cleaning, appointments and work these stupid late night hours. Of course, everyone still expects dinner on the table, dry cleaning collected, food in the cupboards and ironed clothes!!!!
Maybe I can arrange for the fairies to come in and do it while everyone is asleep...well, everyone except me of course, because I shall either be sitting in a police station somewhere asking a twelve year old why he thinks its okay to be stealing cars at 2 am/thumping his mum/carrying knives/smoking cannabis...or else I'll be trying to catch up with the bloody ironing!!!
Enough about me!!!
Jordan and Robyn have just had a few weeks of intense studying and exams, I think they have come through it relatively unscathed, if somewhat tired....mind you, now they have less study...maybe they can help out more round the house....sorry....just a thought!
Deion had his first secondary school report....8 distinctions, 6 merits...way to go Deion...a total star, that's gonna cost us!!!
We were snowed in for Robyn's parent teacher meeting...but she was so keen for me to see her teacher and be impressed that we trudged about four miles through the snow, met with the teacher for about 5 minutes...because of course he has no worries and thinks Robyn's a star, then we trudged four miles home....tell me again why I couldn't have that conversation on the phone???
Jordan and I seem to be bickering a bit at the moment, I guess its because he is in that in-between stage, he thinks he knows it all and is a grown man at the ripe old age of 16... "I'll be able to drive next year you know mum"... (that'll keep me off the roads anyway!)... and I still think he's my little boy... I must learn how to let go. I just see so much scary stuff out there, its not that easy.
The house is slowly getting sorted, we are 'nearly there' on most things... bit of tiling, bit of painting, a few shelves to put up...we'll get there, I'm just glad to be in and that everyone has their own space.
Okay, I suppose I'd better go, I'm not sure when I shall get a minute to get back on the PC.
Thanks for your e-mails and comments checking I'm OK, I really appreciate it,
Love you all
Friday, 22 January 2010
I cannot begin to explain to you how hard it is to hear that your child has a terminal illness; I’d say it was like having your heart ripped out, but it’s actually much more painful than that. The world stops spinning, your heart stops beating and you stop breathing as your child’s future is suddenly ripped out from under you. Then you want to punch someone or something, then you deflate like a balloon and try not to let the awful news sink in.
One of the first things you do is think about all the things that you never got to do together, all the things you wanted your child to see and achieve, you think about all the things you wanted to enjoy together. You think about how your other children will miss out on growing up with their sibling and having those memories together.
So this is why wish foundations are more important than I can put into a few paragraphs here. They enable families to go with their child and do something that will make whatever time they have left together special. And not just the child, their siblings and parents also get to experience something wonderful together. That’s something you can’t put a value on.
When we all think of Aaron, one of the first things we think about is the look on his face that first time he saw a dolphin. We have many magical memories, the dolphins, Lapland, Disney, that is what keeps us going now, knowing that we don’t regret not doing it; because we did it…and my goodness did we do it!
We had help from a wish foundation when we were fundraising and it helped create the most precious memories for all of us. There are no words to express that gratitude to the wonderful people that helped.
It’s not all me, it’s a joint effort with another family and lots of friends and family are going to be involved (through choice or by force!). We are building a web-site now, with the help of an incredible web wizard who is offering his expertise for free…thanks Mark! It’s coming together with lots of information about us, about the dolphins, and about our own experiences. We may still be in our infancy now, but you have to start somewhere. In time we hope to be able to help countless families.
We’ll have an on-line shop selling the t-shirts and baseball caps with Heaven’s Special Child’s extra special slogans. 100% of all profits from the charity shop goes towards helping families realise their dreams of dolphin swims.
So even if you don’t have a child with a life threatening illness, if by some miracle you don’t know a single child with a life threatening illness, you can still make a difference. There are so many wish foundations out there to help and support, go to any of the folowing we sites to show your support.
We all get bogged down with life, we all think we have it hard sometimes, but it is important to not get so wrapped up in what’s going on around you that you can’t see how lucky you are compared to many families. Besides, look at it as an investment, because when you do something good, it makes you feel good, by supporting someone else, you are investing in your own self, because it’s good to do a good thing.
Take care, and do what you can
Posted in childrens charities, disability, dreams come true, family, florida villa, HCPT pilgrimage trust, make a wish foundation, special needs, starlight wish foundation, support, wish foundations by Sally's World | 0 commentsLinks to this post Email this post
Monday, 18 January 2010
okay, I'm having some problems in blog world, first if I try to open someone elses blog, it opens it over and over again until I shut the computer down, it hasn't let me on my own blog for a few days, and when I got in just now, stuff has moved around in my posts, also there are dozens of 'anonymous' comments that are just lots of japanese writing, often loads on the same post.
I tried to go into the settings and make it so I can no longer accept anonymous comments....it wont let me...help! anyone else had this problem, or know what to do ?
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Friday, 15 January 2010
Seeing as it's after three o'clock in the morning and everyone else in the house is sound asleep. It seems like a good time to tackle the issue's surrounding insomnia. I have no hope of getting to sleep next to Dave's freight train like snoring anyhow. It wouldn't be so bad if there was something decent on the telly at this time of the morning...there never is, although I am now somewhat of an expert on African and Indian wild life.
Insomnia is something that I have suffered with for so long now, that I don't even think anything of it anymore. And this is a problem I share with several mums and dads I know. It seems to frequently go hand in hand with having special needs kids.
I know exactly why it began; Aaron had sleep disturbance from day one, he never slept more than 2 hours at a time no matter what, so I had to get used to having short bursts of sleep whenever he did. Of course the other children came along and it was no longer possible to do that, and Dave was working full time, so I never expected him to do the waking nights (besides it would have taken a small explosion to wake Dave once asleep) so I just got used to having less sleep.
Although this may be a major factor in my extreme clumsiness of course!I was always, stumbling out of bed, stubbing my toe, tripping down the stairs, and the kids learnt some rather choice words too.
I guess my body just trained itself to adjust, I got into a routine of four hours sleep and that was that. Of course when Aaron became oxygen dependant, he needed someone with him 24 hours a day. He needed suction, percussion physio, and of course he was tube fed, so it was an every minute job. A family support worker we had recently met did come and see us, and was clearly shocked at how shattered I looked ('you look shattered' I believe actually translates to 'good god woman you look rough')and so she arranged for a nurse to come and sit with Aaron three nights a week for six hours at a time.
So that's when I slept...from midnight to six am on Mondays, Wednesdays and Fridays. I was up every minute of every other day. I did doze of a couple of times, once while I was actually standing up doing the ironing would you believe and another time while I was in the middle of changing a nappy (just a wet one luckily). But I got used to it, and I valued those precious hours in bed.
So I guess my insomnia is self inflicted in some ways, and I now find it impossible to sleep normal hours. It's not my brain or my body's fault, I've deprived it of sleep for so long, it's getting it's own back now.
Besides, you don't really want to be in the same room as me if I've had more than four hours sleep, I'm a nightmare, I bounce off the walls and run around like a Tasmanian devil on acid. Dave and the kids joke about not sitting still for to long in case they get dusted, polished, painted or tidied.
But on the other hand, I don't think I'd get everything done if I had to take four hours out of my schedule. I need another three hours in the day as it is! Twenty hour days seem extreme, but I think my life's pretty extreme. There are too many things I want to achieve to spend too much time sleeping I suppose. of course, the odd lay in would be good.
Night night, sleep tight!
Friday, 8 January 2010
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Wednesday, 6 January 2010
I've managed to jump on the computer for a few minutes...since we've moved the only PC is the one in Dave's office, so I never get on it...my new years resolution (or one of them) is to get my own one sorted and back to blogging.
So i thought a small update....no-one was ill over Xmas, a record for my children, we all ate too much, drank too much and spent too much...the usual...
We are snowed in though, of course they are not complaining.
Work has been mad, I keep getting phone calls at 'stupid o'clock' to go out and see kids who are not deterred from crime even by the minus temperatures...fools. Although the custody sergeants are laughing at me, because when they get bailed/charged and get ready to leave, i keep forgetting to leave my mummy persona at home and tell said kids to stay inside where is warm and ask them where their scarf and gloves are...
The new house is great, of course everything is 'nearly finished' but we'll get there. But if i never see another paint brush, it will be too soon lol!
Deion has a ton of appointments this month, always the way after the Xmas break. I'll let you know how they go. we had a chuckle though as when we went to the wheelchair clinic, they said his back tyres were below the limit and they changed them. Now we keep teasing him about getting pulled over for bald tyres.
Deion will be 12 next week...how did THAT happen...my baby, but its impossible to know what to get right after Xmas.
It was my Mums birthday new years day (I know!!!) we all had a lovely day, we like Mum to know she is loved and treasured.
uh oh, gotta go, Dave's kicking me off the computer already...
Happy new year to you all
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