Sooo 2015 is already coming to a close!

Where did it go? seriously? I know everyone is probably asking the same thing, as they do when they get older the years go quicker. Oh to be a child again thinking the years are so long and dragged out. Doesn't seem like a week ago since we were at last Christmas, first one in the new house, with my friend from OZ over.  Bam.. year has gone and its nearly 2016.

I keep trying to think what has happened this year, we spent out first full year here in Bournemouth! Any regrets? no apart from not having family around the corner or just a phone call away. The traveling can be hard, when it can range from 5 hours and up ( can be timed at less depending on length of service stops.. but we like a stretch ) Though haven't done as many trips up as i thought we might do this year, didn't help that on one trip up we actually broke down. .. ( we didn't get very far thank goodness!! )

I have  made some lovely friends since living here, though i don't normally feel very confident with making friends, I feel I've made some really close friends, though my friend from round the corner who has allergies, and hypermobility is moving a bit further away ( only a bus ride!) our kiddies get along and we can talk and that makes all the difference. It will be an excuse to leave the house!

In November, it was me who needed a hospital visit in what turned out to be appendicitis! that was a first for me to be in hospital for something other than the children ie giving birth or them in general. It  was a bit scary, and its taken a while to heal, longer to get over the tiredness which i didn't expect! Still currently not allowed to lift anything heavy but another week or so and i should be able to shift anything i want! But i found out what real genuine friends i had around me. And much needed for the star bucks coffee trip one of my friends did! and the school lifts, though school really did try to help, even offering free breakfast and after school club, but we couldn't work it round with hubby going to work.


We've had the usual hospital apps this year with the eldest! and all of her issues. We've even had a new one added with her hearing bless, due to frequent headaches  i was talking to the dermatologist who suggested getting a hearing test done at school so sorted that round school, who found there was an issue with her left ear. ( never would have thought there was an issue) and we got sent to a local community pediatrician. more tests to find its not ear wax or glue ear and we are being sent to someone else to check the bones in her ear! ... well it explains why she sometimes can't hear me calling for her.  But its another thing to the list! and the worry that goes with it, as there isn't apparently much that comes on to affect a childs hearing apart from ear wax glue ear, etc unless they were born with issues which  madam wasn't!  as her speech is above average for her age so its something thats come on.   However least this is being investigated! where as her hypermobility is just being left and told we just have to get her exercising. Ok.. she has been doing football twice a week, once at school and then on a Sunday with  a "this girl can" group. which she has really enjoyed. Doesn't sort out her flat feet.. or her swollen knees and ankles.  But i'm just holding off now. They are sending me on a parenting course to deal with madams anxiety.. ( because apparently this is all it is?)

Little man is doing ok! though also being investigated for hypermobility, as his fingers are very HM and i want something in place before he starts school full time in September! We did have some physio back in April after i pestered the GP.. but instead of checking all of him, they literally just checked his legs and feet and told me not to let him W sit... yeah like i just let him.  Even madam still does it and i have to tell her to move. Nursery are very good however and have been doing some exercises with the class which has helped improve mr's balance a bit. They also have a Occupational therapist in who suggested we get him checked out... yeah ok we are trying. Our original referral got lost! after waiting two months i decided to chase it to find it had been sat in someones tray undone for the time. Not happy. But should be getting an appointment for that at some point soon. Shall we place bets that  it will clash with madams audiology appointment?

We haven't done a great deal this year apart from settle in as much as we can here, we went to Cornwall on Holiday, which was a lovely holiday, and we try and explore more round here, we visited the air show, which was a interesting experience but i won't be doing that every year!!

 We are practically ready for christmas, we  just need to wrap a few more things, as we keep finding some little things to add. We are then visiting family after and i can't wait, as it feels like forever since we saw anyone!

Fingers crossed we will have a good run up!

Next year , well what does it bring? we would like to go to France if we can, we probably have lots of appointments to deal with and we will just have to take everything one step at a time. I know we can get through anything because we have got this far!. I turn 30 this next year... no plans as of yet to do anything apart from maybe a meal out. It is also our 10th wedding anniversary!!  (where has the time gone?! and also a big fat raspberry to anyone who thought we wouldn't last this long)  That we want to go to a concert, we just need some willing baby sitters to come down for a couple days in half term! Pretty please lol We don't exactly go out on our own often ;)

All the best for the holidays and the new year! Lets hope it is better then the last one.

Mummies turn for a hospital visit

I'm pretty sure everyone has had enough of my tale already, however with how  everything happened I want something written down so I can remember something  and hopefully remember  the symptoms for someone else next time if there ever is a next time on the same lines.

On Wed everything was fine, I hadn't been ill, we had a lovely time at my childrens parents evening, madam is practically gifted, teachers words not ours ( and I cried because we know how much she deals with and she just gets on with it! ) little man got seen by a Occupational therapist in school and yes definitely has hypermobility and we need to chase it up and make sure he gets help so was nice to get some other backing! And he's very nurturing and empathic with other children... just not his sister lol.


Thursday morning.. i woke up at 6, and got out of bed straight away.. I don't usually follow hubby straight down, but my tummy was bloated and sore, thought i'd just had a funny tum.  Though i do recall some sort of pain in the night, again prob just put down to something else.

I didn't fancy eating and sat on the couch with my morning brew like I always do! had about half and just couldn't feel like any more. so left it, hubby left for work though suggested i had some milk of magnesia or something but i had already taken rennies to no effect.  I felt a bit off when in the kitchen i think i was getting breakfasts and then suddenly my half a cup of coffee was up. That wasn't good.  not something usually that happens. I messaged my friend to ask if she could take madam to school as i knew i just wouldn't manage it. all this by 7:30 am. I had to get daughter to get her lunch together as i was worried if it was a sick bug she would get it so wonderful love managed it we got her dressed as usual and off she went with a friend.

Poor little man was left with me, i felt terrible. I just couldn't get comfortable, at all, the pain across my stomach was odd, i tried lying in bed i tried sitting with cushions on the couch. nothing was helping. i was up and down i had a bath, i felt almost like it was labour but that just wasn't possible! I was having hot flushes, pain.. and i couldn't keep anything down at all not even water! i attempted some ice pops that just about stayed down and mr tried to steal.  At 1:30 hubby calls as usual and i said i've been sick and still in alot of pain etc, so he insists ring the dr see if you can talk to dr. ok i do.. i wanted a home visit, but dr said come in now there is a emergency surgery at 3pm but if i got in they could see me. So.... taxi up with mr. I had a feeling then that i wasn't going to be going home.

At the drs she was so understanding, not like usual and said she knew there must be something as i never go in to the drs, never and i said no i don't,  so talked through the morning got on the bed pressed around my tum then the right side and pow! hot sweat and pain! .. dr wasn't happy, i wasn't happy and she was immediately concerned.  had another feel then let me get up. Mr was being so well behaved bless  as he had been virtually ignored all day not even any lunch ( he got some crisps and some choc at some point) dr said she wanted me to ring hubby she thought it was appendicitis.. something i had been trying to deny! Hubby immediately left work, dr rung the hospital so they knew i was coming and gave me a letter to give then put me in another room to wait for hubby.

Whilst in the room mr was given a biscuit and some water that i wasn't allowed to touch and didn't want and we then waited. I needed an over night bag and was trying not to freak. i felt so ill and still not comfortable!  before hubby arrived i had brought up bile and the dr was going to ring an ambulance ( she didn't want to because it wasn't a blue light event.. and could take 2-4 hours)

When hubby arrived he had been home to get a bag for me and we were off to the hosp! going over every bump hurt!  but we just had to get there and then get to the ward. When there I spoke through what was going on, again.. though didn't want to lie down had to. Bloods were taken  and options were discussed as well as speaking to a consultant. We weren't sure then if it was kidney stones or something gyny or appendicitis as they have to rule it out. Poor hubby and little man had to leave to get some tea and madam from a friends house. I was left to be taken to x-ray to check for kidney stones ( i did have some medicine during this time thank goodness! ) Down to x-ray and took forever to come back up where i was then back in pain, i could hear the staff chattering saying my bloods had come back with a high inflammation marker so it looked like appendicitis but they would do a scan in the morning just to rule out anything else and then go in and check my appendix! .. Off to the ward we went.


It was busy! very ... i was left... until about 9 pm when i asked for some pain meds as mine had definitely   warn off. Though pretty sure remember now i threw the next lot of morphine up.. was given some liquid paracetamol and anti sickness stuff again and some anti biotics. .. couldn't get comfortable, i couldn't get any sleep, there was too much noise going on, lady opposite me had a oxygen mask that she kept taking off.. that made noise and staff had to come and sort out. some time after midnight and a check up it seemed i had gained a temp atleast 38.8 for one reading so was put on more anti biotics. one of the staff and thought i was flushed earlier and said he would check but never did and i had asked for the window open, i was not covered. At some point it was said my surgery would be at 6 sod any scans.


 I then started to shake, like shivers when you are cold but so much worse the bed was shaking with me! I tried so hard not to shake, i really did, but i couldn't. I could hear staff in the room so called to them to come and help. One was trying and failing to get a blood pressure reading from me, and bloody oxygen level in.  ( she was annoying, did it several times and tutting when she couldn't and told me to stop shaking.. as if i could! ) they put me on oxygen and eventually my body stopped shaking and they left to call the surgeon.  when i was sleeping some one came to take me to x-ray.... found out they wanted to check i had done no chest damage with my shaking. that was 1 am.  Surgeon came and said we need to get this surgery done tonight as i had two lots of different anti biotics and it just wasn't working. It was a odd conversation he stood with his arms crossed looking.. concerned. " it's not working this isn't good" so he left to make phone calls. by 3 am i was down in theatre..  Couldn't even ring hubby for fear of waking the children.  everything had gone so fast.

I remember waking up afterwards feeling the blood pressure cuffs on my legs.. and i felt so much better like tons better, it could have been the meds i had been given. but the sickness and pain were gone. I can't remember any conversations with the nurses and was taken back up by 6... as i found a fb message i sent to hubby.. at 6.   I was told at some very early morning that it was definitely appendicitis and it had gone gangrene.. and there was pus in my pelvis! .. not good. But good job they caught it when they did and that i was brave... I didn't have much choice. I couldn't sit and cry i couldn't go home. It had to be done! One of the ladies on the ward just said, aww you said in a little quiet voice ok.. when told you were going to surgery. I think i was just fed up by then, i knew it needed to be done and i was resigned to the fact, and i didn't want to be in pain any more!

Felt ok throughout friday! lots of meds and i was able to get in and out of bed, but was allowed to drink and kept it down, and a cup of tea ! and we worked up to soup for lunch and something light for tea and ice cream.. which i managed a small portion.

Got home on sat afternoon after  pressing them a bit. I didn't want to stay i wanted to be at home with the kids and hubby with my blankets and quilt and people i knew. been told to expect infections in my wound sites thanks to the nature of my infection but on a course of strong anti biotics and pain meds and have to visit the nurse at the gp!

Told not to over do it and i'm trying not to, its been hard trying to get sleep trying to get comfortable and honestly.. why don't they tell you about the bloating and wind? blurgh.. its annoying! 3 days since op and my appetite is not here, .. which for a foodie is disturbing. i've drank so much water and had enough meds to last a while but have to keep going. I know its going to take a while to be 100% and trying to do things bare minimum.  though hard when i'm normally in and out or walking or something!

Least i won't get appendicitis again! but i will know what to look for if anyone else in the house or i know gets it!

The ups and downs of an Air show

This last weekend we went to the Bournemouth Air show! I haven't been to an Air show since I was rather little and even then I'm not sure, as my memory is rather shot due to my dyspraxia. ( Which is always fun when people are trying to tell you things and you forget and you've forgotten most of your child hood and it takes your older sister to remind you of alot of things! Sure I've blanked alot out for various reasons!)

Anyway decided we would go as one, it is a free event, two we have free bus travel and three it should be fun!! I took the children by myself on the Friday and ended up standing close to the Pier as I didn't want to wander to far down the Prom and it was busy as it was rather sunny ( I got rather sun burned! ouch )

I am very thankful that we still have the use of the British heart foundation Wheelchair as I'm sure madam wouldn't have lasted the full day with out it, esp as we had no where to sit after we had moved to go and get ice cream!

The children loved it! and so did I, Even though it was very crowded, I managed ( I don't like crowds)

Love how clear this one is! 

The little man's favourite, a Nook nook! (Chinook) 

The Red Arrows

Saturday display Red Arrows

On the Saturday after madam had been to a birthday party  ( which was stressful enough as we  wanted to go to the air show etc and she ended up leaving her allergy bag there!) 

It was very busy and  I was very stressed about it, however we managed to get a really good spot in the middle of all the action!  Perfect place! and hubby loved it, as he couldn't come on the Friday. It was Epic! we got to see the Vulcan fly past on its way to another event, and I've never seen such a big air craft! 

Really it was worth going just for that!  Not long after we decided to go as it was getting close to closing for the air show and I wanted to get on a bus without the crowds ( and people round here need to learn how to move a couple inches across a pavement when in a que.. when we were trying to get on the bus! heaven forbid we are trying to get a wheelchair on.. claiming their was no room, no there was plenty you just couldn't be arsed moving!) 

We managed to get home and even managed to get our own little fly over of a Typhoon and could see its display from home!  ( not that was noisy!! ) 

Part of me can't wait to go again, I would get to the beach at the crack of dawn to get a good spot if possible or even hire a beach hut because it would be so worth it!  However there is the down side,  and after we came home on Saturday we heard about the Shoreham air disaster at their own air show.  

This is what makes it so scary, a plane never pulled back up after doing a loop and it crashed onto a main road! It makes me sick thinking about it and my thoughts and prayers are with the families of the 11 that have lost their lives, people who weren't even at the air show. As fun as air shows are, the  danger to the pilots and others ( especially when in built up areas like Shoreham. It's just not worth it!  yes its exciting and daring and fun! but so so scary! People are saying they should be more like ours out to sea but at Bournemouth on Saturday there were apparently 1200 boats watching!  so even then they would not be safe even if the planes out out to sea.   The thing could be said about any dangerous thing, cars are dangerous, normal planes are, roller coasters air ( look at Alton Towers recently but i'd still go) 

Thrill seekers are always going to want something and people are always going to want to give as well. 

As much as I loved the Air show I feel bad for loving it with what happened at Shoreham.  Not sure how I could get over this feeling I just hope some answers may be found so that  future events could be made safer if possible! 

Family holiday to Cornwall!

It's Friday evening and just putting the children down to sleep after a week away to Cornwall! Slightly strange planning holidays that don't involve coming to Dorset! ( after all two out of the last three holidays where to Sandford which is about 15 minutes down the road from where we live now!) Not sure why we picked Cornwall, I think because neither of us had been we thought we would go!  

It was an interesting week and went to a lovely camping site on a working farm not that, that got in the way of the camping site. Court Farm Cornwall I would highly recommend, it was cheap (electric pitch for £200 for a week is good in our books)  the management don't pester you, when we arrived there was just a sign on the reception  door to where our pitch was and it was fairly quiet when we arrived. Ended up next to a older couple who although lived in Devon where originally from Bolton!! (small worlds and all that!)  It was a well run site, with clean fields big pitches ( pity never took a pic to show how big the plot was) there was a big expanse where the children could all play and  no one went there. There were also fridges and freezers to use which we've never had before! Everyone also seemed to stick to the rules and weren't up making a racket after 11pm something which has been a real issue in the past on holiday resort/ park sites!. 

I think the high light of the trip for me would have been going to Eden Project! it was awesome there, and obviously very eco/ planet friendly. We got there early and so were one of the first ones there! ( booked in advance for cheaper tickets and got discount  due to madam but can get voucher books in Cornwall for the same sort of discount as what we got!) They have a theme on at the moment of dinosaurs and so we spent most of our time hunting for dinos! ( we found a baby one and another ) and saw an exhibit of them as well as the children getting to play at being paleontologists! something which at the moment madam would love to do.  It was a really good day even with the rain, we didn't eat there but the food smelled gorgeous ( and you could watch from above them cooking/ preparing it! ) Very user friendly and highly recommend it. We spent a good 3/4 hours there and only left as we were getting tired. ( gift shop was fairly reasonable price too) 

This was the first camping trip where the children made some proper friends, ones where you get up and go play with each other first thing and are up with till late. madam got involved with another family playing cricket ( who were really good with her and understanding) and she got to burn off some energy!  Was so nice esp when today they were waving good bye to us. ( I was good I didn't cry!!) 

We did have to spend a day in the tent where it really did rain ( and we have some leaks in the tent :( ) we went out for some lunch and ended up in traffic for an hour!  we explored some of the little towns and visited some more national trust places! ( why not we have the membership!)  Overall it was a much better trip then last years, yes madam has been in pain and had some issues with her eczema and asthma but pain was more or less manageable we did try and keep things short though

It was lovely to get away and spend some quality family time, even if it was the same things we do at home it was just nice not to have school, work and nursery in the way. Already planning for our next trip... which is going to have to include good air beds or camp beds as sick of air beds this trip! ( .. sleeping on the floor most of the night is just a no. ) 

We threatened to put her in the bin when she was complaining of hurting etc.. this was the closest bin! 

Studying a map over lunch at a National Trust Garden

The End of the Universe.... well as some might think!  ( really over commercialised there though :(  ) 

Finding it hard to talk

I know some people will probably find it funny, that I might find it hard to talk. Get me on the right subject and I can be off. Those who know me better will actually know I can be quite withdrawn and no want to talk. At the moment i feel this is the case, I don't have alot to talk about, unless you want the details of the 3 year old and what we did in the morning before nursery, which is normally watching cbeebies. That or talking about my eldest which is the main subject I have to talk about because of how much we have to do.  So sorry if it is boring people but when it is such a huge part of our lives what she is going through i don't get to read up or find much other things to talk about.
I don't watch Game of Thrones, I'm not a sport person ( i only watch Wigan Rugby League) And i don't have many friends to talk to which then brings it full circle.

I find it hard to communicate, I don't send messages to people but then get upset when no one gets in touch, which i think alot of people do!  I think facebook and other mediums along the same lines can be dangerous things, esp for people like me! I get addicted to looking at it, posting, seeing if people respond, seeing what people are up to but then it is the craving attention or some interaction! it is very odd!  Winds me up something awful when people i know happily comment, like, interact with other people i know but yet wont do the same with what i post. Which then again  brings it back to almost being depressive/ obsessive.

I have made friends now where we live and even go round for a brew/ chat  which is great! and i feel very welcomed. I still worry that i have nothing to talk about though! There isn't much on the news and so i'm left with what i do. ... Hrrm back to basics then!


We are having quite a few issues with madam,  she sprained her ankle quite badly over a week ago and still can't but any weight on her ankle, going to go to the hospital if she can't weight bare at the end of the week. Her knee is playing up,  and so is her other ankle. Doesn't help the sprained ankle is opposite to her usual bad knee. She is currently sleeping on her mattress on the floor as her high bed is just to much trouble to get into! ( im hoping she doesn't broadcast that at school as it doesn't sound very good does it! ) She had a MRI scan done on her right knee last week too, and we should find out  soon if it has shown anything, tbh i'm not sure it will but at the same time i'm hoping it does so that finally someone may take us seriously! Not that i'm going to start that rant again.

I think i'm going to try and message people more, and see if i can find something in common to talk about that doesn't involve ill children. Must be something out there for me to talk about?

Time to myself

Well it was a very long week last week! i wanted to do so much, it was Allergy awareness week and i wanted to promote allergies more and do more for the cause so to speak. It never ended up happening apart from a post i did on Pollen allergies!  Not exactly the full scale i wanted to do! 

Why? well little man started nursery last week  and even though i've been trying to gear him up for the big change for a while, pointing out nursery, we went to a little party there so he could see the teachers, getting him involved in getting his shoes etc. First day came and of course he was upset but went and that started off a full week of lunch time woes. So much so on Wednesday when dropping him off he was sick when he was there. It was just very busy as there were more children at drop off time. When he comes out he is crying and clinging on to me and has mixed responses when asked if he liked nursery. Freaked out at taking his bag, freaks out if his spare clothes are left on the peg... all very stressful for me when i then sit at home and think about whats happened and on Wednesday i actually cried. I felt so awful for doing this to him! But at the same time it is a step i want to take, need to take. I need the time to myself in the afternoon, to chill, to catch up on any jobs i can do without a 3 year old hanging off of my arm!  Also the potential to take madam to any appointments in the afternoon if possible to get there and back in time to pick him up!

I'm hoping as well that him going to nursery will help bring on his speech and his ability to play with others as its not something he actively does  ( not sure fighting with his sister counts!) 

What shall i do with my time? well... not sure i should say catch up on the tv shows i've missed !  but i did do that last week, some of the more violent ones that i don't want the children to see! But i think the more i get use to this time the more i shall do with it as its about 2 whole hours ( plus more but i pick him up just after i pick madam up and the walk back can vary on time! )  

Got a few appointments to chase up and other ones to change this week. We had a  "interesting" physio appointment this last week. Although she doesn't see madams knee and ankles as being particularly bad she was rather fascinated with how much range her right leg/ hip had! so much so she wants her to have a hip x-ray to rule out hip displasia well that was a bit of a interesting turn. Though dr google doesn't help in this case as its mostly babies diagnosed, the possibility that it could be this means there will be rather invasive surgery needed to correct the issue if she does. scary! Though i try not to worry about that but it says something when the specialist physio was in awe of it! And was adament that something needed to be done to check. ( she went through a little speech saying she wouldn't just be asking for xray unless it was really needed and she needed to justify looking ) 

Also told me madam couldn't have jhms as she is only suffering in lower joints... surely you can have something even in the lower extremities. wish they would stop picking  at  the other specialists diagnosis! Because it still leaves me very lost! though the physio does want to get to the bottom of whatever madam has. it just makes me feel like a liar as i always say well madam has jhms.. so what now?  more waiting! 

Joint Hypermobility Syndrome

Seeing as it is something I talk about alot due to madam and her diagnosis last year I thought it would be good to do a proper post on the subject and what JHMS is, what it means, how it differs person to person and how it affects us. Now I know alot of people in my life are more then likely fed up of talking about JHMS but if the information is out there perhaps it could help someone else? the back up with information the could take to the gp and suggest it is looked at. For us we had to struggle for 4 years for someone to properly look at madam and not just dismiss us saying it was growing pains. ( That is such a bug bear even now)

Okay so first things first, what is Joint hypermobility syndrome,  some people may have heard of hypermobility, it used to be the coined phrase of "double jointed" it is generally those who have a wider range of movement in their joints. This can be a great advantage to dancers, footballers etc as they are able to move in a better way, more fluid, but they have control as well, some dancers even condition themselves with time and training to be as flexible so that they are more subtle with their dancing, fluid and well graceful. If anyone saw my daughter she is anything but graceful when walking!
This link takes you to the NHS description for JHMS
NHS Joint hypermobility

As it says on the NHS page, Joint hypermobility Syndrome, differs from just hypermobility, it can range quite alot from those who really suffer day to day to those who might just have a bad day now and then. It involves pain that can be chronic, fatigue, issues with bladder, bowels, issues with the skin being very soft, dislocations and much more. Though the more symptoms you find the more you start to cross over int Ehlers Danlos type 3 which is a whole new ball game. ( And is also said that those that do have JHMS have EDS type 3 because they are basically the same condition but not going there just now)

http://hypermobility.org/ Link to a Hypermobility page that is a foundation set up to help inform/ education and support people with the conditon.




Now with madam where do we start?  didn't really notice anything when she was little after all we had her eczema etc  to worry about she was a premie baby though not by alot but she was small when she was born. ( 4lb 14oz at 36 weeks) didn't figure anything was wrong, she was a little slow with walking but  no one ever flagged up that there were any issues! she was 18 months, not terribly slow, but not exactly fast either.  When she was 2/3 noticed that she use to fall over alot, basically over her own shadow, she would tire easily and she started to complain of pain in her legs. ( being quite verbal she was able to communicate very easily with us) I took her to the gp and told them. They said because the pain was in both legs then it was just growing pains and to come back when it was in one leg.... Ok so it continued, weeks, months, any amount of walking and she would be up crying in her bed needing her legs rubbing.

This went on for quite a while. There is only so much you want to go to the drs  for them to knock you back.  With all her allergy appointments etc with the pediatricans I brought it up with them, to have a dr at the hospital barely do anything with her to check and go its growing pains.  Head against a brick wall moment. To put this in perspective this had taken years to get to this point, she was 5 when we had this doctor saying its growing pains. So i requested a transfer to another hospital because I was sick of the pain she was getting which was getting worse and the fact she could do freaky things with her legs was coming to light. ( not often you catch your daughter with her toes on her nose.... going the wrong way to do it.) 

When we got our new referral which was last year everything changed. we were not in with the doctor 10 minutes when she said madam had jhms. All these years all the asking and the dr manages to tell us in such a short time. bam! She showed me why and looking at madams knee  she told me where the ligaments should be.. and where hers where. lets just say they are not in the right place! It felt so refreshing for someone to listen, Someone to take a proper look and not just dismiss us. How i didn't cry I don't know.

I wish I could say things have gotten better since that diagnosis but they haven't, madam has actually gotten alot worse, to the point sometimes she can't get out the door.  she locks her knees in place so  she can literally walk. Her ankles are very strange.  she bruises easily ( currently have a bruise that going on for two weeks not fading)  It is affecting us, going out shopping ,days out, school, us as a family. It is very draining. Unless she is doing her funky tricks no one can see what the condition is like.
(going to show a few pictures)

There is a start of a bruise along her wrist, possibly hard to see for those who don't know what they are looking for but there is a dark line that looks like a grubby mark on her wrist, also her thumb is rather swollen, this is from her first session of tennis at school... so nothing extensive for the 7 year olds and yet she came home like this! I wouldn't have said it was normal. 

This was taken a few weeks ago, she'd had a interesting day and bad mummy i thought she was trying to gain some extra time before bed when she was saying she was hurting( yes i ate my words after) the red patch on her knee suddenly came up when i was sat with her. her knee was swollen and the next day i took her to the rhumatologist on a emergency app who found that she had a low grade inflammation, the only cure? a steroid injection which she had two weeks later, Those two weeks were hell she could hardly walk!  the injection went well and so far she has been better, not great but better! 

 Please excuse the mucky shoes, but here are her school shoes, suppose to be the best out there for her ankles for support, ( she does have a insole for her shoes as well) this wear and tear has happened since September, they are both wearing down on the outside of the shoe! Not very good and show the insoles arn't doing alot of good atm.

And now the ankles in question, above is the left ankle the one below is the right, I was watching how she was walking in our hall way and you could see  the ankles sliding from one side to the other, creeeeeepy. now these are not as bad as some I have seen, but you can clearly see that her ankles are not what they are suppose to be and they are  forcing themselves out the other side. Is it any wonder why she suddenly goes over on her ankles they don't know which way they are going.


Now there are those at there who are worse then madam with the condition, and there are some who are better and don't have as much pain. As mentioned in other posts we are having issues with people down here believing what is going on with madam and that she is getting her own way. However it is not like the above things can be faked, you can't fake these ankles as much as you want to try, and no child ever would refuse to go into a toy shop, for a toy if they were putting it on.


Madams Symptoms:
Knees, ankles, hips flexible also slight elbows.
Pain in knees, ankles, legs, sometimes hips back and neck.
Frequent headaches
Fatigue
Bruises easily, slow healing.
Issues with bladder control ( more so suddenly not needing it to be extremely urgent need to go!)
Trouble getting to sleep ( not just her being a pain in the bum)
Ankles, knees giving way
Flat footed when weight bearing.
Soft skin
Over pronation evidence from shoes.
Poor Core muscles ( what helps you balance)
Also tight hamstrings, leg muscles a consequence of her other muscles compensating for her lax joints.


We are having physio again and I'm hoping they will listen and be supportive because we really could do with some supportive medical professionals at the moment. Instead of the negative.  I'm hoping to find more people near us that have the same issues and that we can go and talk, because its very hard to talk to people who just do no understand what we have to do or think that madam is putting it on.