Thursday, 22 March 2012

World Down Syndrome Day 2012: Kyd's magic treat list...

World Down Syndrome Day.... 21st March 2012

World Down Syndrome Day is quite a new thing so don't worry if you've not heard of it... I hadn't until last year. It is a day to celebrate Down Syndrome and educate the public by making them aware of the strengths of those with Down Syndrome... I think it's nice to show off their strengths for a day rather than defending their honour against the ignorant. The day is also set up to raise awareness of the amazing achievements of those who work with people with Down Syndrome and just proves how much YOU can do to make that small bit of difference in someone else's life....

Why the 21st March?
People with Down Syndrome are born with an extra Chromosome 21, that is all that makes their genetics different to you or me... just that one extra part of their DNA.... that makes their chromosome 21 count to 3 not 2... March being the 3rd month of the year... hence 21-3.... TA DA... clever hey! lol

Last year we were a little unaware of what we could do to celebrate so we just had a nice dinner... but this year WDSD has hit the world of Down Syndrome by storm and there were all sorts going on from fund-raisers to parties all the way around the world.

So we thought, as we were on a trip back from visiting family and watching football, we would do something extra special to make the journey and day a little more interesting.... To celebrate Kyd being Kyd and all things Kyd... We got him to list exactly what he would like to do in one day if he could have the best day ever.... who's silly idea was that ay??

HERE IS THE LIST (It's a bit random)...

See Family
Eat Pizza
Meet a player
Have a Sleepover
Have a Lie In
Play FIFA in Bed
Chocolate for Breakfast
Play Computer Games
Buy a New Wrestling Game
Buy New Football Cards
See Flynn the Dog
Go to the Seaside/River
See some Horses
Drink Coke
Go To the Pub
Play Darts and Pool
Phone Stacy
Eat Chips in the Pub
Play more iPad
Sing to The Kaiser Chiefs
Go Home to Cats
Play Play Station 3
Watch Tubes (Soccer AM) 
Go for a Drive in Car
Look at Trees
Go To Shops
Get Money (not sure who or where from just get it... if only I could do that)
Go To Park
Watch TV with Hoff and Mum
No Rain
See some Sheep
Dance Madly to Music
Eat Sweets
Go to the Gym

These were ALL achieved in just 1 day (although a couple of things were improvised) and they were documented by photo's and regularly updated on Facebook and Twitter for evidence... some were achieved the night before, but let's be fair somewhere in the world it was already WDSD so it technically wasn't cheating! They weren't achieved in the order he listed them as that would've been madness but they were in fact ALL ticked off before bed time... well before he passed out on the sofa anyway! I quote Kyd... 'The Best Day EVER!' well that was one way of keeping a long journey from being a bore... even if it did mean a bit of a detour and a few extra hours due to stoppage time...

It was lovely to spend the day with my (slightly huge) baby doing everything he loves. It was even lovelier to see his smile so wide and so constant, it made me realise what an amazing achievement I've had bringing such a beautiful, funny, talented individual into this world.

World Down Syndrome Day 2012 to me meant, an overwhelming sense of that Proud Mummy Feeling and a picture of that amazing smile that will stay in my head forever!

World Down Syndrome Day 2012 to Kyd meant, a way of showing the world he loves everything that you love too... nothing about him is different, his life is just that little bit more interesting... in good ways and bad!

Don't ever hesitate to ask me any questions about Down Syndrome, I won't be offended or shocked I will try and give you the answer you need and I will always aim to educate you further and give you an insight into the world of Kyd and his friends.... 

So that's World Down Syndrome Day 2012.... DONE! I wonder what next years will bring?!

Sunday, 4 March 2012

Pregnancy Diary: 01/03/2012 - I'm petrified of putting on weight!

So I know what you are going to say, and I know, I know, I’m pregnant I’m going to be putting on weight! BUT I have this hideous niggle in the back of my head about just how much weight I’ll be putting on. I have hated my body for years and at certain stages have gone as far as making myself sick and taking stupid amounts of laxatives to lose weight... just to add that doesn’t work but you do become addicted to them and your body takes more and more tablets to make them work. I have issues and I have worked through them and come out of the other side, albeit with a damaged bowel and IBS but I now know the dangers. I think at the time it was a way of dealing with the madness surrounding my life and I know that now but I’m petrified that I’ll slip up and start obsessing again if I start gaining shed loads of weight. I didn’t really let it become common knowledge at the time as certain family members had suffered eating disorders most of their lives and I was trying not to draw attention to my own issues in case it took it away from their more serious ones. 

I must admit I’m still crap at eating regularly and I like to eat crap, this is an issue... but I can go all day and not realise I hadn’t fed myself. I find myself realising more now I’m pregnant that I have a horrible eating pattern and I need to fix it. My average day if I am at home, on my own or with Kyd, I would not eat breakfast, forget to have lunch and then realise at 3/4pm that I’d not eaten, scoff a bag of crisps and a biscuit and then eat dinner as usual with everyone else... then snack on things whilst watching TV.  I hear you health folks screaming ‘THIS IS SO UNHEALTHY ITS UNREAL!!’ but scarily this is my life... feels worse now it’s written down. It was often different if I was meeting people for lunch or if I was out and about.
In the first 3 months of pregnancy I was so ill and had such a rough time I wasn’t often hungry and I often threw up what I did manage to eat so I lost quite a lot of weight... like a whole 8lbs! 

Now that I’m 4 months pregnant I try and eat cereal at breakfast, try and eat a healthy lunch and have a decent dinner with the family at the table... but I’m still a bit pants at remembering the first and middle bit but I am starting to get more and more hungry so my body/sprout is reminding me to eat. I do eat a lot of fruit and veg and I am very into rocket at the moment... and crisps... Salt and vinegar bloody crisps and here is what is worrying me!!! 

I’m eating/snacking a lot more than I did before and I am struggling to stop myself from eating crap. As I watch my belly grow and my bum get bigger, I’m beginning to freak out. What if I become huge? I’m 6ft tall and I will end up looking like the honey monster. I know if I put on huge amounts I won’t be able to lose it after the baby and in time for the wedding exactly a year after my due date! But my biggest worry is I’ll hate myself and my body again. Most women will understand my angst and I know many will laugh and say I’m being paranoid but I’m praying I don’t get overly big as I don’t want to go back to my stupid ways of thinking, as I was so unwell before. I am trying to eat well but with Kyd being unwell and certain smells freaking me out I’m struggling....
Anyway, I know this post will annoy some people and I know they will tell me I’m stupid and after all I’ve been through I should be enjoying my pregnancy...  But right now I am more worried about the size of my bum and my thighs because for the first time in 4 months I’m being selfish and thinking about me.... I don’t think that’s a huge amount of selfishness really is it?

PS my boobs can stay, they're huge it's brilliant!!!!!

Saturday, 3 March 2012

Pregnancy Diary: 20th-28th Feb 2012 - OK he's definitely moving!!

20th February 2012 
So after all that wondering if it’s IBS or sprout doing acrobatics, I’ve come to the conclusion.... IT’S DEFO SPROUT! He’s running and jumping against the wall of my womb and bouncing off like some weird mini version of a street jumper. He’s taken it upon himself to fidget around all night and then wiggle around all day... does this baby ever sleep? Worryingly I’ve been told this may be a sign of things to come and after Kyd being ill for over a month now, we’ve not slept AT ALL and I’m feeling rather like a dead woman walking... I’ve come to the conclusion that I’m not too sure I’d be much good as a zombie I feel like I’m not getting much done... If I have another night owl growing inside me... Oh my life somebody shoot me!

28th February 2012
Kyd is feeling a bit better chest wise but is now struggling with his bowel condition which has taken a turn for the worse. He has been having mummy cuddles on the sofa tonight and during this Sprout took it upon himself to kick him in the head... over and over and over... What he hadn’t got at this point was that Kyd wasn’t feeling any of it, he was just getting me! This was the first time he’d been this active and all because his brother had his head on my knee and resting on my belly. When I told Kyd what was happening it was the first time I’d heard him giggle in ages and he then carried on putting his head on and off my belly trying to feel his brother. Kyd and I came to the conclusion that he was trying to wrestle him and he was pretending to be John Cena (a wrestler). It was lovely to see Kyd engaging with my belly. He was talking to him and trying to make him jump. He has been so poorly it was a good distraction... made me all lovely and gooey inside... minus the bruises I may have on the wall of my womb lol.

Friday, 2 March 2012

Pregnancy Diary: 12/02/12 - Where's the heartbeat?

Today we got to hear our baby’s heartbeat for the first time since the CVS test. I’m not going to lie I was freaking out. I know we heard it literally straight after the CVS test but since then... nothing. I was scared that I may have miscarried and not known. I think I’d got reliant on the many checkups, tests and scans that we’d had over the first few months and this quiet period had been all of a sudden.

This morning was all a bit of a fluster, we had managed to get there way too early. Kyd was really poorly so not at school and he had to come with us. His cough, that he’d had for a few weeks now just hadn’t budged... this always rings alarm bells in my head as his coughs often settle on his chest and he gets very poorly. We haven’t really had much sleep and we tend to rush about thinking we are late... because, usually, we are late. I had phoned the doctors the day before to get an appointment for Kyd and we had only managed to get him a phone call appointment which was fine with me, as that usually leads to a ‘come in asap’. Anyway, as we were there early for the midwife the secretary, who is one of Kyd’s biggest fans, noticed how poorly he really was and called a doctor into the waiting room. The doctor took us off and checked him over... turns out he has a very bad chest infection... AGAIN! We have had years of this so I wasn’t surprised. Anyway our bonkers rushing around and our earliness had worked out for the best as now we are sorted and when we get back we don’t have to mess about again and get back there.... and the wait we were dreading was now over and we had been distracted by Kyd and the doctor... Hoorah.

Right, well now it was that time, time to go in and face the ‘is it there? Isn’t it there?’ The midwife said that all the paper work was up to date, she did the urine testing, All Clear, then said do you want to hear the baby’s heartbeat... I explained that we were nervous because we’d not heard it since the CVS and she said ok well let’s get your mind cleared. She also said that If I ever got that worried again just to phone up for an appointment and they’d do a quick heartbeat test... yeah brilliant tell me that now!! Lol. 

I laid down, she put the cold jelly on my belly and then... NOTHING... she looked very confused. She said something like ‘he’s hiding’ but I can’t remember, I was freaking out. My fingers instantly crossed and I went to look at Hoff... he was holding Kyd’s hand and he looked horrified. She re placed the monitor to another part of my belly and then said ‘let’s try again shall we’... still nothing... I was sure it was all over and he’d gone. But then a really quiet ‘dum de dum de dum de dum’ came across on the monitor... Oh My Lord, are you trying to kill my nerves baby! The midwife said he was still hiding but he was there and that the heartbeat, although quiet, was perfect... now if I could have smacked his bum at this point, I’d have done it, stubborn little monkey... I have no idea where he gets that from... *whistles*. The little live wire wouldn’t stay still for the scan the other week and now he hides for the heartbeat monitor... I think we have our work cut out with this one.

So there we go he’s there and he’s alive and he’s as stubborn as your average Baillie, much to Hoff’s horror. I must admit I took the deepest breath once I heard it. I was petrified the risks were so high after the CVS but the test results had all come back clear, so what was the betting it’d be just my luck for it to go wrong now... Turns out I might actually be one lucky little bugger myself. Wuhooooooo!

Thursday, 1 March 2012

Kyd's month of Hell! - Negligent doctors and success!

We started off February 2012 with a lovely meal out for my birthday, we ended it in hospital. 

Kyd is your average kid when it comes to snow but snow dislikes Kyd more than I dislike courgettes! He loves to play in it... mainly because for years he wasn’t allowed to. He always seemed to get chest infections and illness’ after playing out at break times in temperatures in the minus’, so I stopped him going outside in them unless he was wrapped up with an over the top amount of layers and was careful who he mixed with after. It seemed that the colder it got the less his immune system could cope, as colds turned to flu and coughs turned to chest infections. As he grew up and we managed to get the Flu jab each year he seemed to not be getting ill as much... he still caught bugs but his chest seemed to stay clear. So this year I decided I may have been acting slightly over the top and so I let him go out at break times in the snow with his friends... little did I know, that this would be the start of weeks of sleepless nights and illness... I’m not 100% that this is to blame but it’s a bloody coincidence it all happened at the same time.

Your average winter for us includes many bouts of illness and lots of individual days off school. As he’s grown his immune system has got stronger and he has been a lot healthier... we still had time off and illness’ but not as many as before. I had gained hope that eventually he would be fit enough to fight off most illness’ and he’d be at school as many days as he should be throughout winter as well as summer. You see, summer is a completely different story! He’s happy and healthy and although he suffers from Hay fever this is controllable and easy to manage... we make the most of our summers each year as we only have a few months of it and then it’s back to hell. 

So, back to his month of hell...

We began with a cold... just your average cold... we then had a cough... just your average tickly cough... we then progressed to a chesty cough... which progressed to a chest infection fit for a king. This chest infection came on faster than a bullet in a drive by and was so intense he had to have several weeks of the lovely banana antibiotics and several weeks off school. He lost his appetite, then got it back... then lost it again and for Kyd this is worrying. He loves food and he only doesn’t eat when ill. But this run of illness was just the start... what was happening elsewhere in his system was to become the next hurdle.

Kyd has a bowel condition called Lazy Bowel Syndrome. This causes chronic constipation and means weekly medication just to get him moving... sometimes this doesn’t work so we have to double the dose... sometimes this also doesn’t work so we have to triple the dose.  Once in a blue moon this also doesn’t work and we are left with a very full Kyd and a very painful belly. We then have to have a trip to the hospital clinic and then they give him an enema to clear him and we are back to square one.... BUT as we found out last year, quite abruptly, due to the hospitals constant change in system apparently this is now ‘not what they do’ they will not administer enemas to children unless it is completely necessary (apparently nearly 3 weeks wasn’t classed as ‘necessary’ last year) and it had to be under sedation. This means being admitted and they are reluctant to do this also...

For a long time now we’ve had the condition stabilised and it literally is once in a blue moon having to seek help elsewhere occurs. We have had test after test and changed medication continuously for almost 10 years now but at the beginning we had help from a specialist who then referred us to a constipation nurse. After having as many tests as humanly possible they came to the conclusion it was just lazy bowel and that there wasn’t much else they could do other than to treat him regularly and stabilise the situation. We then were discharged from the specialists and in turn because of this, lost the contact of the constipation nurse. We were then just under the care of the GP for this who alternates meds until we find one that works.

This I thought was normal... this I thought was the only way forward... as this was what I was told all those years ago.... TURNS OUT that this, was not the only route and he should have been constantly and closely monitored by the constipation nurse, at least, but due to apparently slipping under the radar we not only are lacking a paediatrician but have been dealing with his condition alone for longer than we had help in the first place. The GP’s fault? or the specialists? Or Mine?

Now all I can think of is ‘is it my fault? Should I have pushed harder to get help or should I have flagged up the problems sooner?’... But actually from what I remember I have done this in the past quite a few times and nobody listened. The GP just said there was nothing he could do other than what he was doing already. I even went in to the paediatrician’s office myself and they said he’d been discharged as he was now at school, I thought this was normal why would I question it?! This whole situation has been hell for nearly 10 years, so if there was in fact something that has been there to help him all along I’m going to scream! 

Anyway it got to 27 days of not going to the toilet, YES that it 2 and a 7, 27. After weeks of meds and nothing we realised that maybe the antibiotics had disturbed his bowels routine. I was well aware he hadn’t been and he was struggling and I had given myself a time limit of 3 weeks as last time we were told that wasn’t long enough and this was as long as when I’d let it get to and then I’d go to the hospital. On day 27 after screaming the house down whilst trying to go to the toilet, but not being able too I decided it was time to go through to the clinic as I was scared of a perforated bowel. He was due to go back to school after 2 weeks off so we needed it sorted so he could go back. But after last time I thought ‘how do I go about this?’. I decided that as it was a Sunday the out of hours doctors might be able to refer us over to the clinic quicker as it was based in the hospital... OH HOW WRONG WAS I?!

After waiting ages at the WestCall clinic in the hospital Kyd was called in to a GP. She then proceeded to annoy me immensely by asking stupid questions that would’ve been answered with a quick read of his notes. I didn’t mind at this point until she started questioning what I was telling her like I was lying... ‘Are you sure it has been 27 day?’ no I’m lying because I find it fun to see my son go through an enema... *shakeshead* I understand they need to question me but the way she was talking to me was as if I was a moron. I went on to tell her his complete history and who and what we’d seen in the past, she looked at me again blankly and said that she thought that an enema was too extreme and a different medicine was called for. I told her over and over that this wouldn’t help and that the blockage would get worse and by giving him more meds she was adding to the stomach cramps and pain. She told me she could phone the paediatric system but their doctors would completely agree with her as they ‘don’t administer enemas anymore’.  By this point I was fuming. She said take this prescription and take these meds for 48 hours and then if nothing come back... leaving it until 29 days but with added pain of more meds. I could see I was getting nowhere so I reluctantly took the prescription from her and said ‘will they even have this? As they don’t have his simple laxatives in usually’... ‘it’ll be fine’ she said... I was then told the hospital pharmacy didn’t have them... so what hope was there for anywhere else. Hmmmmppphhh!

So day 28 and the search for the meds was on... after trawling around 5 different pharmacies with a poorly Kyd in his buggy, which was too hard for me to push now he’s so heavy and I’m pregnant... I had been told over and over that it would be 48hrs to get hold of them and that I could ask another pharmacy.... I broke down  in tears out of frustration and pure exhaustion, in the middle of the town centre Boots... embarrassed much?! I was mortified! The pharmacist was amazing! He said he would see what he could do. He managed to get hold of it for that afternoon and he said he would ring me when I could come and get it... He was at that moment in my head on a white Horse wearing shiny armour! He was amazing, I was slightly in love with him. I dried my eyes and made my way home. When I got there I have never felt happier to see my sofa. Kyd went straight over to the chair covered himself over with a blanket and he looked so annoyed that I’d dragged him out. 

After receiving the phone call to say the meds had arrived, I rung around to get someone to pick up his meds for me so not to upset him further and my lovely delightful cousin Red, jumped up out of her lunch date in the pub and went all the way to town to get them... how lovely is she?... THEN as she got there she’s told they aren’t ready... ‘that’s fine’ she said and off she went window shopping. I then got a phone call to tell me that the doctor who had prescribed the meds HADN’T SIGNED IT OFF!... what the f**k?! What sort of doctor doesn’t sign a prescription off??? He had to get hold of her to get her permission to hand them over... OHHHHH but that wasn’t the best part... after a short while I got another phone call... not only had she not signed it but she had prescribed the adult version of the medicine instead of the Paediatric version so he couldn’t give us the meds he’d so kindly argued to get... OMG I was going to scream!!! He now couldn’t get them in until the next afternoon... which was when we were told to go back to the GP to see what the next step was... I was fuming! I had disturbed Red to go get what didn’t even exist and put the pharmacist through so much just to find out the main person, the most qualified person out of the lot of us, had cocked up!
Let’s just say I wanted to strangle someone at that point but I think I’d have been unsuccessful as the tears would have drowned them before I had got to their necks! The exhaustion of the whole thing had killed me off. I couldn’t move, I couldn’t even speak. I was told to keep my stress levels down as this baby was a miracle as it was so not to risk anything... and so far I was stressed, pushing a poorly almost 5st child and buggy around and being told that even the professionals dealing with it all were a complete joke... The poor Pharmacist was so apologetic but it wasn’t his fault he’d gone out of his way to fix her mess! Grrr still makes me angry.

So the next day I picked up the meds at 4.30pm, on day 29, and on my way back I went to the GP’s and insisted I spoke to him. He was very confused. He told me to bring him in the next morning for him to deal with it. 

Day 30!! The GP has spent ages pressing his belly in confusion. He rung up the hospital and spoke to a Paediatrician, he put it on loud speaker so I could answer the questions instead of him repeating himself... they wanted the GP and the nurses there to administer an enema... HE quickly assured them that wesn’t possible and he told him to send us to A&E and we’d be seen by the Paediatric assessment unit there and we’d go from there. RELEIF! Someone was doing something... 

A&E, our local hospital has a separate A&E for under 16s. It’s amazing in there no drunks or druggies, just cbeebies and colourful walls. It is also doubled up as the Paediatric Assessment Unit so we were there for them to finally do something. We went in and they gave him a balloon for letting them do his obs and then we were sent through to see the doctor. He was BRILLIANT, he didn’t patronise me, he didn’t make me feel to blame or like I was lying. He simply listened to his history and said well that sounds like a fight let’s get this sorted for you and try and get a future plan set up... FINALLY I’ve found a professional Professional!! Fantastic! He sent him off to have an X-Ray on his belly to see where the blockage was and although we had a wait on our hands the relief of being listened to was over whelming and just like heaven! We went in I hid behind a screen due to bump and then we waited again. He was so brave through this whole thing and considering how much pain he must be in, he’s not whinged once. I’m so proud of him. We were called in by the doctor again who said he’d never seen a bowel so full! I asked to see the x-ray as I was intrigued to know the extent in which he was full... F me... it was shocking! How can anyone let it go on that long... I felt so guilty but I know it was not my fault and that there was nothing I could’ve done differently. The blockage was really clear, a tennis ball sized and shaped ball was blocking the way. The bowel was so distorted from it, it had gone from a thin tube shape to a ball shape... poor mite. 

Next step was seeing the specialist as this needed to be sorted not only now but in the long run. We went up to the clinic that we used to go to originally and we waited... and waited.... and waited... but for some reason, what would normally get on my nerves, made no difference to me at all. I was just so happy to have been listened to and that something was actually being done that I was oblivious to the wait. After a long time we actually got to see the other doctor who was also fascinated by his history. She said she needed to clear the blockage but would have to sedate him to do it and so he’d have to be admitted. Luckily they couldn’t do it until the next day so she said we could go home and come back before 9am. She told us to give him a big dinner,  10ml of his meds before bed and 10ml in the morning but he wasn’t allowed to eat at all after he woke up.... easier said than done.

DAY 31! Today he has been admitted to bed 12 in the children’s ward and although he was in a lot of pain and not happy with being woken up this morning, he is all set for what is going to happen... but then 5 mins after arriving he starts crying and saying he needs the toilet... so I took him and low and behold... BOOM... he literally fills the bowl. I knew the doctors weren’t around so as I’d been told as evidence before I’ve had to take pictures of it to explain the amount I did just that... this might sound bonkers but it works as a way as you just couldn’t explain that lol. Plus it meant Hoff got to see what I was having to deal with lol. So I took a picture and tried to flush... then tried again... and again... the water was just rising. OMG he’s blocked the toilet. What was left after the flushing was the long thick hard lump in which had also blocked him... apt really lol. So I went to find the nurse to explain and she was over the moon. We still needed to see the doctors as there was no way as much there as there was on the x-ray so it was a ‘What happens next?’ situation.
The doctors were great they understood and explained we shouldn’t have been left to get to this point and we must have sunk off the radar of the constipation team. They ummed and ahhh’d about whether to do a full clean out and then went off to get hold of some specialists. We have had a bit of a wait but in the meantime he’s been to the toilet again and this is a great sign, so maybe he doesn’t need an invasive flush out after all. He’s perked up and is singing Foo Fighters at the top of his voice so must be feeling so much better. We then had to wait for a verdict from the specialists and we’d know what we were doing. 

I’ve just had Great news he doesn’t need any invasive treatments and he’s been given special meds that will flush him out just the same a bit like a detox. We will start on a new meds routine and we will be seeing several specialists in the near future to be helped along the way so we never get to this point again!!
We can go home to do the detox flushing so no overnight stay, I am so happy about that, it’s been a long day but at least I’ve caught up slightly on my blog posts that have been put on hold over this madness.

It’s been a hell of a month and I cannot wait to get this sorted and under control for good. He is an amazingly active child and this holds him back so much.... 

I’ll keep you updated on the detox but I won’t give you all too much information or picture evidence you may want to be spared of this, it’s not nice.... 

Now to make a complaint about the original Doctor who saw him and messed up so royally... I’m going to enjoy this!

Pregnancy Diary: 8/02/12 - Can I feel him Moving?

So that really weird feeling inside where you don’t know whether your belly is struggling to digest your lunch or it’s your baby moving, has just occurred. I have IBS, so in my head I’ve been telling myself it was just my belly being awkward but on the other hand I reckon it might be him wrestling with himself in there!... if he’s anything like his brother wrestling would be the only thing he was doing as there is no ball in there to play football with. But then again I’m not quite sure whether it is him or not, this is so confusing.
I know that with your second baby you can often feel things quicker, so it would be more than likely that this awkward sensation in my belly is him freaking out inside me.... But is this too early to feel it? I’m now 16wks... is that normal? Oh I don’t know this is all alien to me.  I can’t help but want to think this is him telling me he’s here!... I’ll go with that lol.