Monday, 27 January 2014

The Magic of the FA Cup...

When Kyd was in hospital he missed a whopper of a football game a 7-1 win for Reading at home to Bolton. Kyd has had a season ticket for 7 years now and he has NEVER seen a game like that. He has seen 6 goals and begged for 7 but he's never seen a game where he's been chanting 'We want 8, We want 8'. Alas due to having surgery on the Thursday he could not attend this game and he felt cheated, like he'd hit the beans on toast in a 0-0 tie against Man Utd at the 90th minute... cheated.

Luckily we did hear it... BBC Radio Berkshire did a great job of containing their excitement and not squealing down the radio mic (that is a slight mistruth)... So the atmosphere was there, in the empty ward bay we were in, volume up loud and shrieks of joy as we learnt of each goal. So as you can see, all was not lost.

A lot more was gained the next day however. Much to the surprise of Kyd and The Hoff, I had a little secret outing planned... if the Doctor's allowed me to steal Kyd away for a few hours that was.

I had to beg the doctors and nurses for a pass to escape but at the last minute the surgeon said 'You can go, be careful, don't have too much fun and be back by 7', I was over the moooooon, I had a little secret... that secret was almost out of the bag.


So it turns out I had to tell Hoff what was going on as he had to drive over an hour to get from Oxford to Fleet, he happily drove after I told him what was going on, when I say happily I mean eagerly and excitedly... but carefully, obviously.

Kyd was still non the wiser, Kyd thought we were going to a party, a football themed party.

When we got to Fleet we entered a house... who's house?... Non other than Mummy Barrow's house!

As we walked in, we were greeted by the most amazing sight.

A sight football fans, like us, could usually only dream of.

A sight you don't see everyday.

A sight we would never see again.....

NOPE it wasn't Mummy Barrow in the buff, or the famous mask wearing duck....

It was this...


THE REAL £1.5m FA CUP... accompanied by 2 lovely, hairy biker lookalikey, security guards.

I whispered in Kyd's ear 'What's that Kyd?'
'It's *long pause* the cup...' he said with a surprised look on his face.
'What's it doing in T's living room?' I said
'I dunno' he laughed
'I reckon she's stolen it Kyd, what do you think?' I said
'Noooooo really?!' he asked giggling
'Do you want to hold it?' Mummy Barrow asked him
'YEAAAAHHHHHHHH' he said gleaming from ear to ear nodding.

He was still a little shell-shocked and dosed up on pain killers from the hospital, so he sat down and listened carefully to the very specific instructions given by the security man about how to hold it....

So there he was, sat with his baby brother Rocky, who was desperate to touch the shiny new toy, holding THE REAL FA CUP!!!

All the people that have held that cup before him, all his heroes, all the people we watch on the tele week in, week out... all the people most men would love to be.

David Beckham once said as he held the exact same cup as a child
 'One day I'll hold this as a champion'
... in 1995 he did just that!

We have set Rocky that target.... No pressure Rocky.

He held it, loved it, cried because he wanted to pick it up and then spent the next hour trying to get around the security so he could break it.... we don't call him Wreck It Ralph for nothing... but I suspect with the right skills he too could hold that as a champion... and give his mummy a lovely share of his wages on the way to hitting that goal *grins with a hopeful look on her face*

As football fans this meant a huge amount to us. Kyd even made it into the local Fleet paper read it here and it was all thanks to the new FA initiative here is a bit more info below...

- New FA Cup initiative to make kids’ football dreams come true -
 The FA is giving children a chance to make their FA Cup dreams a reality throughout this season’s competition ­ culminating with one lucky fan winning the ultimate sleepover with The FA Cup trophy at Wembley Stadium the night before the 2014 Final.
The scheme will give boys and girls around the country the chance to live out the dreams of countless football fans from the Third Round through to the Final ­ with some fans even winning the chance to walk onto the Wembley pitch with the players at The FA Cup 2014 Final.
People always talk about the magic of the competition and I think we saw it at its best last season when Wigan defied the odds against Manchester City in the Final ­ and the Third Round this season has again thrown up a load of David vs Goliath ties in a way no other competition in the world can
The FA Cup is one of the most recognisable pieces of silverware in the world and I hope to see the next generation of aspiring footballers fall in love with it the way I did
Children and families who enter the competition on The FA Cup Facebook  will be chosen at random to win once-in-a-lifetime FA Cup experiences including the chance to win round-by-round sleepovers with the official trophy in their homes overnight and drift off to sleep dreaming of their heroes who have lifted The FA Cup before them.
Winners will be chosen at random ahead of Third, Fourth, Fifth and Sixth Round ties. An overall winner will then be selected to win a sleepover with the trophy for their family at Wembley Stadium the night before The FA Cup Final.
The initiative is part of a wider FA Cup Dreams campaign launched by The FA this season to take the magic of the competition to a new generation of fans at every participating club throughout the 2013/14 season

That night I wrote this status on Facebook...

*reflecting on what happened today* 

Kyd was let out of Hospital for a few hours today to do something extra special... Hold the REAL FA Cup!!! The £1.5m trophy of the footballing world in which all of his heroes have held before!! It is stuff most grown men would only dream about. Kyd, with his freshly operated on ACE tube and his cannula still in, got to do what every footballer and fan dream of in their life and do just that from the comfort of a sofa in the living room of a friend... A friend I met only a short time ago but has become an amazing part of my life, a friend who I only know through blogging but who's life is actually more bonkers than mine!! Today Mummy Barrow made this poorly little boy very, very happy and now it's sunk in and others have told him how jealous they are, he's even happier. He's back in his hospital bed sleeping now but still smiling in his sleep.

 Today dreams were made. Today was a good day. Tomorrow who knows what that will bring but we will always remember today.

Thank you T it honestly couldn't have come at a better time. Xxx

There were several excited people at the party, some kids, some adults, but for all of them, that day, would go down in history for them all as one of the best of their lives. An opportunity you don't usually get in everyday life.

We would like to thank Mummy Barrow and her family for having us round that day and for making memories that we will never forget.

Sunday, 26 January 2014

An update on Kyd...

I can not believe it is nearly February already. 2014 seems to be disappearing before my very eyes.

I have had a very busy first few weeks of the year though and I suspect this is what the theme of 2014 will be from now on.

Sadly my laptop and all that was on it died a hideous death whilst we were in hospital and I was left with no access to my blog and to top it off, with a dying smart phone too I couldn't even get much time on facebook or my emails either and for me that is a complete mess and tragedy. So as you can see, I have had a nightmare few weeks of technology based emptiness and sadness and so if you've not been able to get hold of me... it was their fault, stupid laptop, stupid phone *mumbles expletives under breath*

ANYWAY the good news is...

This blog update has been brought to you via my brand new, slightly early, birthday present from The Hoff. He has literally saved my world more times than not and so I am very much in debt to him right now... just don't tell him that or he'll milk it!

Anyway back to the important stuff...

*An Update on Kyd*

Kyd is recovering well from his operation and is coping well with his new ACE tube. He has an infection in the wound where the tube enters the body but apparently this is quite common, it is sore but he's fine with that because he's a trooper... However he isn't happy that the antibiotics are not yellow and do not taste like bananas, they're red, look like they're going to taste yummy but alas they taste like earwax... *Just to add, we don't eat earwax, it is a reference brought to you from an accidental tasting of fingertips after itching ears... lets face it we've all done it!*

He's had a rocky few weeks but he has smiled throughout, especially at me when I was getting angry with my computer for being dead, he liked that, he thought it was hilarious... it wasn't!

He has had some great days since he had his operation, including going to Mummy Barrow's house to hold the real £1.5m FA Cup... no really, it was in her house, I'll tell you about it all in the next post. He's played with Mum on the Brink's children in the hospital and even wrote her little girl a love letter, *coughs with wide eyes* I thought this generation only used emails and texts so a letter was lovely to see, he's an old fashioned soul. He has also been back to his favourite cafĂ© in Reading, Shed, which he had been asking for the whole time he had been in hospital. He scoffed his way through his usual and then a large piece of cake and then asked for more... little porker. He has had Nanny to keep him company whilst out too. She was down looking after Rocky whilst I was concentrating on Kyd so he's been happy to see her too. He even learned a few new tricks from the football freestyler Matt Minnis who was in the local shopping centre yesterday, which went down well.

He goes back to school tomorrow. He has had only a week and a half off and he is like a fidgety puppy needing a wee. He is so desperate to see his friends and teachers and show them his new addition, his tube. He is a real boy he loves a good scar or wound, he has shown everyone it since he had it done and I suspect will do for some time to come. The good thing about SEN schools is that he can go back this quickly because they have a nurse on site at all times. The nurse is even trained in his tube treatments and dressings etc and so I am at ease in knowing that he is in good hands. He is going to have a large dressing over the tube so it doesn't get knocked or pulled or so on so he can play as usual... just no wrestling or swimming for a while.

I am pretty sure Kyd has some sort of super powers. He's hardly had any pain relief since the op and he was up and about asking to go to school before we even left the hospital. Most adults would have been whining for ages after and stayed in bed for as long as possible with a sick note to boot, let alone dealt with the new daily regime that his ACE has left for him to do. I am pretty sure that his extra chromosome has added a little something to him, like when Spiderman was bitten by the spider in the lab, he has grown this thick skin that makes him more powerful than you or I... well that is what I tell him anyway...

So from all of us here at superhero towers... I mean... My Life, My Son, My Way.... We would like to thank you for all your kind words and prayers whilst he was in hospital, it helped, he's just fine.

Lots of Love and Thanks

Saturday, 18 January 2014

Chronic Constipation in children with Down Syndrome

On Thursday 16th January, Kyd underwent surgery on his bowel at the John Radcliffe Children's Hospital in Oxford.

Kyd had his bowel flushed, known as an evacuation of the bowel, and then an ACE tube fitted via the appendix and into the bowel itself in which he will have daily washouts through a tube in his side.

Kyd has suffered from Chronic Constipation throughout his life and he has been through the mill when it comes to medications and illnesses due to the condition. We have been through every diet, allergy test and every cocktail of medications that the doctors could prescribe, including in the last year, using adult strength medication instead of the ones suitable for his age. He has suffered with severe pain and swelling which have resulted in his inability to preform the smallest of everyday tasks like walking or even dressing. At one stage he even had to have two different sizes of clothes, one for the first part of the week and one for when he was too swollen to fit the first. He still wears nappies and for an 11 year old boy, this isn't ideal but manageable and less embarrassing than soiling his pants.

It is a common condition in children who have Down Syndrome and can often be helped and controlled with medication and diet but for others it can result in surgery. Everybody's bodies react differently to different things, including those with Down Syndrome, no two cases of Down Syndrome are the same despite what myths tell you, they all have their own issues good and bad.

What is Chronic Constipation?
The definition of constipation is opening the bowels, which doctors call stool frequency,  less than three times per week, or straining, having difficulty passing stools or passing dry, hard or pellet-like poo regularly. The direct cause of constipation is not enough water in the stool. This occurs because of the diet not having enough water-retaining elements (fiber) or because the stool is kept in the rectum too long, allowing the colon to reabsorb more water than usual. It can cause side problems like incontinence of the bladder, nausea, vomiting, lack of appetite and swelling of the stomach. It is also linked with contributing to a poor immune system. (Chronic just means 'long term' or 'severe'.)

Chronic constipation: What causes it?
After eating, food moves through your digestive tract. The intestines take water and nutrients from the food. Normally, the process continues until a stool is formed. Squeezing contractions in the intestine then pass the stool out of the body.
The most common causes of constipation are insufficient fibre or fluids, inactivity, changes in routine that alter bowel habit or ignoring the body's call to go to the toilet.
There is a strong association with stress and emotional disturbance, but more research is necessary to better understand how constipation happens and to unravel the mysterious links between the gut and the brain.

In children with Down Syndrome, two factors exist to make constipation more likely: low muscle tone and decreased motor activity. Both of these make the colon more likely to retain stool for longer periods, leading to loss of water from the stool. 

If left untreated?
Constipation can lead to:
(1) Rectal fissures: tears in the rectum leading to bright red blood on the surface of the stool and on the toilet paper, but not mixed in with the stool; 
(2) Impaction; 
(3) Stretching of the rectum leading to the loss of the sensation of the need to have a bowel movement. 
This last problem can further lead to the weakening of the rectal muscles (sphincters) and cause the child to have bowel movement accidents

The usual treatment of constipation is dietary: increasing fiber, fruits and vegetables. In bottle-fed babies, the introduction of a stool softener is used, such as corn syrup (Karo).
Increasing the amount of fluids the child drinks is helpful; and in older children, decreasing the amount of constipating foods (milk products, bananas, white rice) may also help.  
Diet plans and allergy tests may eliminate natural causes to the problem.
Medications such as Lactulose, Movicol and Dulcolax is also used in children and adults. All of these soften the stool by adding water to the stool.
If the above doesn't work you may be offered enemas or rectal wash outs called Peristeen which is an anal Irrigation system.
Serious long term damage to the bowel from the above can lead to surgery such as having an ACE stoma fitted (daily washouts through a tube fitted into the bowel, reversible if the bowel cooperates and heals itself over time) or a Colostomy bag (a non reversible procedure that leaves the patient with a permanent bag attached to their body).

More serious cases: Hirschsprung disease and Hypothyroidism.
Picture courtesy of Mayo Clinic
Hirschsprung disease is a condition in which a segment of colon directly above the rectum is formed without nerve endings. This condition makes it impossible for that segment to push the stool along into the rectum; the stool backs up just above the rectum and only enters the rectum when enough stool backs up to push the front along (like a train caboose pushing the engine). These babies typically do not pass stool in the first 48 hours of life, and are chronically constipated. Children with Down Syndrome do have an increased risk of having Hirschsprung disease, and sometimes it can be very difficult for the doctor to tell the difference between Hirschsprung and the normal stooling pattern of a baby with Down Syndrome. The diagnosis is made by first performing a barium enema on the child, and if that exam is suspicious, confirmed by a rectal biopsy. Treatment is the removal of the segment of colon without the nerve endings (the length is variable from child to child). The traditional treatment was performed in two stages: the first surgery attached the ending of the colon to a specially made opening (colostomy), and then reattachment of the rectum was performed months later. Now, however, many surgeons are removing the involved segment of colon and reattaching the good colon to the rectum in one procedure. This surgery solves the problem of constipation, though children without long segments of colon may have problems with diarrhea and malabsorption for the rest of their lives.

Constipation is also one of the signs of Hypothyroidism, another condition more common in children with Down Syndrome. Because the signs and symptoms of Hypothyroidism can be well hidden in children with Down Syndrome, a regular thyroid screening blood test is recommended every one to two years, even if the child is growing well.

Luckily Kyd hasn't got the above but is tested yearly for hyperthyroidism just to make sure. 

This is a brand new start for Kyd, something we have waited a long time for and I really hope the ACE tube makes way for a better and pain free life for him.

If you have any questions on a parental basis please don't hesitate to ask below on the comments and I'll try and either offer some help or point you in the right direction of someone who will know more.

Wednesday, 15 January 2014

Kyd and Yoda the Monkey Doctor

Kyd spent today preparing for his operation which is tomorrow morning.

He did all his favourite things in town, he had his favourite food at his favourite places and then made himself his third hospital bear.

He creates a hospital bear at Build-a-Bear each time he has an operation for taking down to surgery with him and helping him get better afterwards.

His hospital bear keeps him safe whilst he's in the operating theatre.

His hospital bear is there to make him smile when he wakes up.

His hospital bear is there to hug him when he is in pain.

His hospital bear sits on his bed as he gets better and tells the doctors if he needs anything.

His hospital bear smiles even when he doesn't feel like smiling.

His hospital bear is there to remind him how brave he is being.

Annnnnnnd this time around...

His hospital bear is as crazy as he is...

Meet Yoda the monkey dressed as a Doctor, who sings the Star Wars theme and smells like strawberry's.

He has helped Kyd pack tonight too... but keeping with the theme of bonkers... he packed an apple instead of a banana because apparently he 'doesn't do bananas' *rollseyes*

Yoda has an alter ego too... 

By day he is Yoda the Monkey Doctor... 

By night he is Yoda the Iron Man Monkey hacker!

Naughty Yoda!!

I caught him hacking my blog... Naughty, Naughty Yoda!!

So, could you all please wish Yoda the Monkey Doctor/Iron Man luck with helping Kyd during his time in theatre and with his recovery... it's a tough job but somebody has to do it... and if Iron Man can't help... WHO CAN???

Good Luck Kyd (and Yoda) 
Love From
Mummy xxx 

Wednesday, 1 January 2014

Our Crazy 2014 To Do List...

 *Please Note* This is not a 'New Year's Resolution' post. 
Is a good old 'TO DO' list post.
One that won't put so much pressure on us to complete.
One which we will add things to as we go too, so it is never ending.
One which we think will be fun to do rather than a chore...

 This year we are mixing the less ordinary with the ordinary and creating crazy... same as last year then really.

So here it is,
When the item on the list goes RED it means we've done it and we have celebrated appropriately/inappropriately.
  1. Re design my blog (01/01/14)  
  2. Alice & Hoff to sort their Wills out 
  3. Alice to pass her driving test 
  4. Go to Majorca
  5. Work hard on my blog and be a success (Alice)
  6. Win a blog award because of the above (Alice)
  7. Go to Alton Towers
  8. Go to Thorpe Park
  9. Go to Legoland 
  10. Get Kyd into space (being an extra in Star Wars will do) 
  11. Go to Greece with Mark Warner
  12. Meet Dave Grohl (Lead singer of the Foo Fighters)
  13. Lose at least 1st each (A&H only)
  14. Raise at least £300 for charity
  15. Start Rocky at Little Kickers
  16. See the Wombats live
  17. See Aerosmith Live
  18. Meet Phillip Schofield
  19. Go to at least 2 away games
  20. Start potty training Rocky
  21. Meet David Beckham (Kyd) 
  22. Be a Mascot at an England game in the World Cup *wide eyes* ummm, yeah, OK
  23. Watch EVERY game of the world cup
  24. Win tickets to the World Cup
  25. Go to Lords for Cricket and Aly Palley for Darts (Kyd)
  26. Be an extra in Eastenders & Hollyoaks (Kyd)
  27. Learn more about Social Media for the blog (Alice)
  28. Read an ACTUAL book... like a paper one
  29. Hoff to legally adopt Kyd  
  30. Make more money than last year

Ummmmmm, WELL, some of those things may be just slightly out of reach... 
Never say never, stranger things have happened to us in this family... most of them in 2013. 

*Disclosure* If we meet Dave Grohl I, Alice, am allowed to kiss him on the face. It was in the marriage agreement.

Hellllllllo 2014