tag:blogger.com,1999:blog-36967580896446323932024-03-12T21:42:07.222-07:00mystarThis blog is about how having a child who is undignoised affects are familycjchttp://www.blogger.com/profile/17481176032494995077noreply@blogger.comBlogger25125tag:blogger.com,1999:blog-3696758089644632393.post-38938162232647223262012-08-20T13:11:00.000-07:002012-08-20T13:11:35.242-07:00Chicken pox It's the little things that you don't think about that are the ones that hit .This week my star went down with chicken pox but in true star fashion he got covered in them and very sore he wanted cuddles but it hurt him to be touched when he saw the spots on his arm he screams and try ed to get me to wipe them off at night he cry ed out in pain every time he rolled over no matter how much i try ed to calm him and explain he just didn't understand that's when it's hard that's the days when i see the sad nest in his eyes the looks of pain and help me mummy these are the hardest days the days when i feel i cant do anything to help my poor star these are the days when i feel like a hopeless mother , i know chicken pox is a normal childhood illness we all get but why does my poor star have to suffer so much i know in time the illness will pass and so will the spots but the scars will always be there along with others in my heart cjchttp://www.blogger.com/profile/17481176032494995077noreply@blogger.com0tag:blogger.com,1999:blog-3696758089644632393.post-88315615645177668702012-05-09T02:36:00.001-07:002012-05-09T02:36:08.153-07:00<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhL2kx30XnGdCTKuU0mYGE6xHl9xYQpKStdeu9U4NI5loswQjQtTeCpMTTaQx5MaIBajYn1YUo8Wy_91fIuNaYvLDqha6OMVxyCUl72DwdLT_j3wcC5pSS1kjiAhnzc8gzFJqYXc7Dye64/s1600/easter+2286.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="191" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhL2kx30XnGdCTKuU0mYGE6xHl9xYQpKStdeu9U4NI5loswQjQtTeCpMTTaQx5MaIBajYn1YUo8Wy_91fIuNaYvLDqha6OMVxyCUl72DwdLT_j3wcC5pSS1kjiAhnzc8gzFJqYXc7Dye64/s320/easter+2286.jpg" width="320" /></a></div>
Happy 1st birthday to the fantasic SWAN UK , thanks for all the support and friends you have brought to me , your all fantastic xcjchttp://www.blogger.com/profile/17481176032494995077noreply@blogger.com0tag:blogger.com,1999:blog-3696758089644632393.post-33904330868013093342012-05-05T12:52:00.001-07:002012-05-05T12:52:08.929-07:00What a lonely world it could beI feel so lucky to have found the amazing SWAN UK group and my lovely SWAN SISTERS they are there for me come rain or shine there is always someone there to offer support , to moan with , to laugh with and to celebrate even the smallest things with .<br />
Without SWAN i know my life could be a very lonely place knowing there is someone who understands really brigthens my day .cjchttp://www.blogger.com/profile/17481176032494995077noreply@blogger.com0tag:blogger.com,1999:blog-3696758089644632393.post-39528629085435257762012-04-21T06:10:00.000-07:002012-04-21T06:10:52.107-07:00SWAN sistersOK so at present I'm full of smiles not because things in life are great not because we've had answers that's all still not changed its because of a very special group of ladies these ladies i like to call my SWAN sisters i suggested a group of us got together and did a sponsored weight loss to try and help raise money for the fab SWAN UK we spent the evening all chatting over facebook and our smiles just got bigger and bigger i love being part of this swan family it doesn't matter if i want to cry ,shout , giggle and laugh or sit in the corner rocking back and forth theres always someone there to hold my hand don't get me wrong these new found friends don't replace my other friends how can they we've been through to much together , my new found friends understand in a different way to others as they live the same life as me so today i want to send extra big hugs to my friends i call my SWAN sisters thanks for picking me up on a low daycjchttp://www.blogger.com/profile/17481176032494995077noreply@blogger.com0tag:blogger.com,1999:blog-3696758089644632393.post-48521774666050706242012-04-19T03:37:00.000-07:002012-04-19T03:37:46.307-07:00A lovely day outOn Sunday we <span style="background-color: white;">decided</span> to pack the 5 kids into the car and make the most of the last day of the Easter break my Daddy Star wanted to go to a little coastal village called Beer so off we went it was a beautiful day the kids and daddy star went climbing around by the rock pool whilst me and Tommy sat and watched the beautiful view on the very stony beach we sat and cuddled and took lots of photos of the views today Tommy wasn't bothered he couldn't join the others in there fun he was very content on cuddling up with mummy and pointing out the boats and taking photos today was lovely no crying in frustration at the fact his legs would not carry him across the stones to the rest of the family today was what id call a perfect day our life Ive wrote this blog as part of the define normal challenge <a href="http://www.justbringthechocolate.com/define-normal/">http://www.justbringthechocolate.com/define-normal/</a>cjchttp://www.blogger.com/profile/17481176032494995077noreply@blogger.com1tag:blogger.com,1999:blog-3696758089644632393.post-71733686982280198612012-04-17T06:47:00.001-07:002012-04-17T06:50:11.793-07:00Back to normale<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjMWHzg9MnQA04_-YdIEMlALJ0hUdOZRThpoPfGo87jZTaVOKDN1JnnmC63Q6zFOXpgpInjUJb58Nnpm1RC8RgFvZSchtQChYImWEQnDdTJuGGVMoJbsQtj4-zlJlW_9goITFz9VpIq0hI/s1600/easter+2430.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjMWHzg9MnQA04_-YdIEMlALJ0hUdOZRThpoPfGo87jZTaVOKDN1JnnmC63Q6zFOXpgpInjUJb58Nnpm1RC8RgFvZSchtQChYImWEQnDdTJuGGVMoJbsQtj4-zlJlW_9goITFz9VpIq0hI/s1600/easter+2430.jpg" /></a></div><br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjG8cwn3Cj1pM-jqlL2oEcZ4JZEOdb2ZRmuZGJPhaAbAJoMBrON8XyDkoU_p_KWcPbwbB6AATBQJ1BEO_RnC3PEWDYYDGTHuwinMQnGfRxYcGj8FG3aZ9ocE5tx-9PfJVk3Gw304tr5xj0/s1600/easter+2428.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjG8cwn3Cj1pM-jqlL2oEcZ4JZEOdb2ZRmuZGJPhaAbAJoMBrON8XyDkoU_p_KWcPbwbB6AATBQJ1BEO_RnC3PEWDYYDGTHuwinMQnGfRxYcGj8FG3aZ9ocE5tx-9PfJVk3Gw304tr5xj0/s1600/easter+2428.jpg" /></a></div>We've had a great Easter Tommy loved having all his brothers and sisters home he only had one crash out day during the whole time which was good , he enjoying following them round the woods to find his eggs during a family egg hunt and seeing the animals on the farm its was smiles the whole break for all of us but then yesterday the kids went back to school it was as if he was saving it because yesterday the coughing started today his chest is bubbling and hes so weak he cant sit up so back to normal we are again but its not going to get me down as Ive such lovely memories from our Easter break we spent a lovely 2 weeks as a family which was needed by all sometime out as a family with lovely memories sharedcjchttp://www.blogger.com/profile/17481176032494995077noreply@blogger.com1tag:blogger.com,1999:blog-3696758089644632393.post-36722201487188944072012-03-25T00:27:00.000-07:002012-03-25T00:27:05.496-07:00Alovely day on the farmYesterday after a busy week in the garden we decided to take the kids to the farm Tommy enjoyed himself and smiled from ear to ear signing each animal whilst making the animals noises pigs are def his favourite whilst he thought the ducks were just there for him to chase just like he does with ours from home was so nice to see him enjoying himselfcjchttp://www.blogger.com/profile/17481176032494995077noreply@blogger.com0tag:blogger.com,1999:blog-3696758089644632393.post-55386827196904430742012-03-23T15:06:00.000-07:002012-03-23T15:06:33.310-07:00Why is everything a fight ?Feeling very cheesed off tonight as i write this blog we went to look around a special school today which was lovely whilst we were there we saw the schools on site physio who was lovely within 5 minutes of watching Tommy she said he would get lost at mainstream school (my worse fear where school is concerned is confirmed) she also commented that he should have support on his ankles due to his hyper mobility and muscle weakness another of my bad feelings confirmed we were told in Sept 2011 he ankles were strong enough to manage without support boots now we've always felt this was not right and now today we are told are feelings were right so why is it I'm now going to have to start fighting for more support yet again i was told the reason why today and that's because all people see is a happy little boy who is now able to walk so is now shoved to the end of the pile she said its not till people have spent more than hour with him and watched him closely they realise things really arnt right argggggghhhhhh i just feel like I'm banging my head against a wall and that my son is not as important to others I'm so tired of fighting whens it going to endcjchttp://www.blogger.com/profile/17481176032494995077noreply@blogger.com1tag:blogger.com,1999:blog-3696758089644632393.post-65631084089357433282012-03-14T13:34:00.000-07:002012-03-14T13:34:44.331-07:00Another hit of things arnt the sameToday Ive been left feeling sad Tommy spent a good 30 minutes sobbing at the back door whilst he watched his brothers and sisters play in the garden it was heart breaking to hear and see the sadness in his cry and in his eyes brought pain to my heart i wish i had a extra pair of hands so i could have carried on cooking the dinner whilst my extra hands could have taken him out to play sadly Tommy is to unsteady on his feet to be outside without support its just another stab in the heart that Tommy is unlike other children of his agecjchttp://www.blogger.com/profile/17481176032494995077noreply@blogger.com1tag:blogger.com,1999:blog-3696758089644632393.post-76199310182511114742012-03-10T13:15:00.000-08:002012-03-10T13:15:25.420-08:00our normal lifeSo you ask me how a normal day begins for us well Ive had to think long and hard about this as I'm so set in our morning pattern i could do it in my self it all begins at 6pm when 2 of my stars wake up this is normally followed by my Tommy wakening up calling for me so i go up and carry him down we then sit on the sofa for a ten minute cuddle and i massage him feet ankles and legs as he waves them about at me indicating they are causing his problems what we don't know as he can not tell us yet every morning i hope or the answer then when hes settled its time for breakfast and for morning meds heart meds , thyroid meds and now his new meds for the dribble after breakfast its time to get dressed and time to fit Tommy's hearing aid depending on the sort of the we have ahead and also what type of day Tommy is having it could be a my muscles are weak snuggle on the sofa day or it could be a full of mischief get in to everything day or a my eyes are bad (nystagmus) so I'm going to have major sensory issues to us taking each day as it comes is normal for us we never no from one day to the next or even hour to hour how Tommy will react or what his needs maybe , also fitting in all his many appointments is a step away from ordinary life they same as his changing bag is far from normal instead of the normal nappies etc we have it full of meds hearing aid battery's blood testing kits , hospital phone numbers extra dummy's and his snuggle blanket in case of a sensory flip out for us its normal life we don't see or think of it as different but when we think of a normal 2 and a half year old and there daily needs we see a big difference but this is our normal life one we've fallen into with out realising or thinking its second nature to be giving Tommy his heart meds 3 times a day every meal the bottles put on the table almost like the salt and pepper pots its just part of our life OUR NORMAL TO US LIFEcjchttp://www.blogger.com/profile/17481176032494995077noreply@blogger.com2tag:blogger.com,1999:blog-3696758089644632393.post-24566813670380807632012-02-28T07:19:00.000-08:002012-02-28T07:19:24.428-08:00Another big step<span style="color: magenta; font-family: Verdana, sans-serif;">Well I'm feeling very proud of myself today last night we took a very big step and put Tommy into his own big boy bed we decided he wakes up between 2 and 8 times every night calling for me and at present we can not find a cause well after having 3 weeks of no less than 5 times each night i said it can't do any harm so the bed was made up and at bed time up he went it took about hour for him to drop off he got out of bed 3 times and called me from the bedroom door but each time i went up and said back to bed and with help from mummy back in bed he got , throughout the night he only waked 3 times much better one time was because he was confused as to where he was so took 45 Min's to calm him back down the other 2 times i went in kissed him and laid him back down so that's another big step for Tommy and a even bigger step for mummy as now it really feels like my little man is growing up , go go Tommy </span>cjchttp://www.blogger.com/profile/17481176032494995077noreply@blogger.com0tag:blogger.com,1999:blog-3696758089644632393.post-69508785361668638352012-02-25T00:49:00.000-08:002012-02-25T00:49:24.857-08:00Time to LISTEN<span style="font-family: Verdana, sans-serif;">OK for a while now I've been feeling really low and doubting myself as a mum i know friends don't understand what emotion's you go through having a swan child and no matter how hard you try you can not switch off certain feelings it's easy for people to sit and tell you what you should and shouldn't do and say and when your head's in a mess after 2 yrs plus of no sleep no time to self worry confusing info overload etc etc there is going to come a time without you realising that you've lost the old you recently I've been feeling quite hurt by some friends and the manor in which they've spoken to me they've made me feel so small it's not worth me being here , for the past year my minds all over on the outside people think I'm happy and fine but on the inside i spend days walking around in a daze and even spend time crying to myself over something someone may have said but because i wont let my mask slip in front of certain people they just think I'm OK and if i wonder off my normal path for a while and spend time doing different thing's that I've turnt my back on who i am this is not the case at school i spent years on my own in the playground school was a sad place for someone with no confidence and who was quite and shy i went through bulling everyday and through out my adult life with different people i was to scared to stand up to but not now i now have to stand strong and be proud of who i am and what i can achieve the most important people in my life are my children and my hubby followed by my mum. I know at times people may feel let down by me and the things i do but I'm sorry I'm only human and I'm not wonder woman the poem below springs to mind at present maybe instead of people getting all funny maybe try to talk to me ask how i really feel but then STOP and LISTEN to what I'm saying DON'T but in and tell me your point of view just LISTEN being a swan parent without the answers we spend are life being spoke down to and there does come a time when we get fed up with those who know more or better than us and maybe not on purpose or sometimes without realising we might snap or turn are back but maybe that's the time to stop and think hey are they really OK because more than likely they will say yes but deep deep inside the answer maybe no i know in life everyone has there only problems and maybe i have not stopped and helped or listened to people that might have needed me and for that I'm sorry. So now thanks to the support of some fab people I'm ready to pick my self back up from the low I'm feeling i will try and ignore those that talk down to me and think they know better I'm proud of who i am as a doctor told me last week I'm doing a fab job through some very hard times and i am only human i will keep fighting for my son i will do my best to make this hard process easy for my other 4 stars i will do my best to carry my hubby as he still grieves for the loss of his mum whist trying to find time to do the things that help me carry on and make me feel good about my self and if by any of what I've said it's offended anyone maybe read it again in till you realise all i needed was someone to LISTEN to me not answer me and tell me there point's of view i know peoples points of view but for us swan mums the biggest thing we need is someone to LISTEN </span><br />
<br />
<span style="font-family: Verdana;">Walk a mile in my shoes</span><br />
<span style="font-family: Verdana;">see what i see</span><br />
<span style="font-family: Verdana;">feel what i feel</span><br />
<span style="font-family: Verdana;">hear what i hear </span><br />
<span style="font-family: Verdana;">then and only then can you judge </span><br />
<span style="font-family: Verdana;">why i do the things i do </span>cjchttp://www.blogger.com/profile/17481176032494995077noreply@blogger.com1tag:blogger.com,1999:blog-3696758089644632393.post-78700921806486754142012-02-19T13:59:00.000-08:002012-02-19T13:59:23.906-08:00A long week<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj2_IItcNIs8ZG5SyRaFXm_T0zny4FZsPKfD708YJdBZwMCV0N7tQbNbQO8grEHenSQpyz2ItXLQs9r61orb1i36VCbD8IRZckznC9g-vFnzSN9Yy9BlsT53ftoIRMbWyd2kOSyeVVU6xY/s1600/val+bal+12.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj2_IItcNIs8ZG5SyRaFXm_T0zny4FZsPKfD708YJdBZwMCV0N7tQbNbQO8grEHenSQpyz2ItXLQs9r61orb1i36VCbD8IRZckznC9g-vFnzSN9Yy9BlsT53ftoIRMbWyd2kOSyeVVU6xY/s1600/val+bal+12.jpg" /></a></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj2_IItcNIs8ZG5SyRaFXm_T0zny4FZsPKfD708YJdBZwMCV0N7tQbNbQO8grEHenSQpyz2ItXLQs9r61orb1i36VCbD8IRZckznC9g-vFnzSN9Yy9BlsT53ftoIRMbWyd2kOSyeVVU6xY/s1600/val+bal+12.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj2_IItcNIs8ZG5SyRaFXm_T0zny4FZsPKfD708YJdBZwMCV0N7tQbNbQO8grEHenSQpyz2ItXLQs9r61orb1i36VCbD8IRZckznC9g-vFnzSN9Yy9BlsT53ftoIRMbWyd2kOSyeVVU6xY/s1600/val+bal+12.jpg" /></a></div><div class="separator" style="clear: both; text-align: center;"></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiY6JNNqvfeyD0ELOGxB0SpHTNpOtIh3PSiI3FYdSnT45DEqBBG3UdMyJqH0qTTMh0u_qgFifzQTKmZntwnS428r3-s9OE_7l4YhqVDYDbR7fqBBzqBUwW3XkciiTgW_SLhUtKB-fHpeUc/s1600/poor+babe.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiY6JNNqvfeyD0ELOGxB0SpHTNpOtIh3PSiI3FYdSnT45DEqBBG3UdMyJqH0qTTMh0u_qgFifzQTKmZntwnS428r3-s9OE_7l4YhqVDYDbR7fqBBzqBUwW3XkciiTgW_SLhUtKB-fHpeUc/s1600/poor+babe.jpg" /></a></div>A good week gone bad last weekend was fab on sat 11th Feb i held a charity valentines ball it really was a fantastic night enjoyed by everyone we raised £800 for the children's ward which was great lots of dancing and laughs were had by all. Sadly the highs of such a fab weekend did not last long as when Monday arrived poor Tommy awoke feeling week right on the half term holidays so Tuesday's planned family day out to monkey world with family and friends did not happen for me and Tommy yet again i stood and wave my other 4 children off to enjoy another fun day out with out me and Tommy watching them all go out with friends and knowing they were all having fun with others whilst i couldn't be there is one of the hardest things i have to deal with my family are my life but Tommy's needed me more so i snuggled in front of the telly with my baby boy for the day by now Tommy had lost the strength to sit or stand unaided when weds came he could hardly open his eyes so down to the hospital we go Tommy is now dehydrated and has a ng tube put down his nose it turns out he has rotas virus and sadly he couldn't keep anything in his tummy as the eve comes its time for daddy to take over and stay at the hospital whilst i go home to my 4 stars we jump into the normal routine daddy does the nights at the hospital whilst i do the days and then my wonderful mum helps at home with the 4 stars , Tommy looks so frightened as i leave him at the hospital his eyes tell me everything and i cry my self to sleep that night thinking of them eyes well day by day we carry on like this in till Fri night when the infections cleared and we can bring a very weak Tommy home still unable to weight bear or sit unaided but manging to smile we bring him home where his eldest brother awaits him with lots and lots of cuddles wow what a long week its been and a rubbish half term for all 5 of my stars as we had so much planned as a family i always feel so bad for my 4 older stars when ever Tommy goes into hospital as they miss out on so muchcjchttp://www.blogger.com/profile/17481176032494995077noreply@blogger.com1tag:blogger.com,1999:blog-3696758089644632393.post-615655739037897752012-01-23T13:14:00.000-08:002012-01-23T13:14:22.259-08:00At a low point - who knowsSome how I've fallen into a really low point and feel quite let down and hurt by a few people i thought might just understand what I'm feeling (maybe it's me taking things to heart). Maybe it's the lack of sleep the past week , maybe it's star's steps backwards , maybe it's just a build up from the past 2 and 1/2 yrs that I've fought against and never let worry me , maybe it's the MRI results , maybe its seeing the sadness in his eyes when hes weak , maybe it's the not knowing what the future holds , who knows who really knows if i don't then I'm sure no one else can , i mean who knows what me and my star fight against day after day all they see is his smiling face no-one hears his crys at night or the sadness behind his eyes when he's to weak to play , no sees the fear on his face when he wakes at night and cant focus to see his mummy.<br />
No-one knows they see a happy family full of smiles , the smiles are a mask so no one can see the tears in our eye's and the pain in our heart ,that we feel when he cant say whats wrong but the pains there in his face.<br />
So although I'm at this low point who really knows as i fight not to let my smile mask dropcjchttp://www.blogger.com/profile/17481176032494995077noreply@blogger.com1tag:blogger.com,1999:blog-3696758089644632393.post-66134785597427963232012-01-21T13:18:00.000-08:002012-01-21T13:18:38.578-08:00A step backwardsSo as you all now my little star has been doing so well the past few months but in the last week hes slipped back down hill it began with his nystagmus being worst followed by his balance he went from being able to walk 8/9 steps before fallen he could only manage 4/5 then it went to the moaning and crying in his sleep and being unable to roll himself over in his cot to Fri when he could walk at all he spent the whole day flopped on the sofa watch telly and wouldn't even eat a biscuit for everyone who knows my star hes a complete biscuit bin and never refuses them he had a restless night Fri and it took a few hours before his legs could carry him but today (sat) he had much more energy we went out for a lovely family walk where Tommy sat in his wheelchair and had a smile on his face the whole time.<br />
Sadly the way Tommy has been the past few days is very common for us as its happened many times before its just sad to see him take a step back but also good to know that with a lot of rest and TLC no matter how long hes down he will get back up again cjchttp://www.blogger.com/profile/17481176032494995077noreply@blogger.com3tag:blogger.com,1999:blog-3696758089644632393.post-59267746915475137312012-01-18T13:03:00.000-08:002012-01-18T13:03:24.073-08:00Every night i look at youEvery night before i go to bed i stand and watch over my little star so thought id share some of the things that go through my mind when I'm watching him sleep<br />
<br />
Every night i look at you and feel proud that your a part of me ,<br />
i wonder what your dreams might be ,<br />
as i watch you sleep soundly all cosy in your cot,<br />
at times i shed a tear or three <br />
and hope that the pain will leave you be <br />
you look so peaceful lying there <br />
as if your cares have past us by <br />
But in the silence of the night<br />
Your little voice will cry at sweet <br />
for what you can not tell us yet<br />
But the touch of my hand will calm you back<br />
Back to the land of your sweet dreams <br />
Where run and play freely you laugh and sing<br />
and know all needles and tests will let you be <br />
Every night i stand and look at you ,<br />
and hope some day a call will come <br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhhJ9fkui-uNY4nPjzHZctJKY6SLx6zC50N3WBNqCPHUMA_Fb16njbjAfI1gloMIFmP13BwKMbAPbzLsLbBuKRzusyFgemFd_ys5ibRpVoWOpfzABhU0imFE1Kk8i_eXFvU7pzLPKCnHmI/s1600/xmas+048.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" nfa="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhhJ9fkui-uNY4nPjzHZctJKY6SLx6zC50N3WBNqCPHUMA_Fb16njbjAfI1gloMIFmP13BwKMbAPbzLsLbBuKRzusyFgemFd_ys5ibRpVoWOpfzABhU0imFE1Kk8i_eXFvU7pzLPKCnHmI/s1600/xmas+048.jpg" /></a></div>to make your dreams come truecjchttp://www.blogger.com/profile/17481176032494995077noreply@blogger.com1tag:blogger.com,1999:blog-3696758089644632393.post-10915006566585643192012-01-13T13:24:00.000-08:002012-01-13T13:24:06.773-08:00Fundrasing<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhysOdtF0ZFy46Y_BAnhOHWEQ8JAfn9iRgIspBJhYexFilehYzrusefmjbjdK-fLfHvxj7lez5P-rkivfUnOOxeu2JPjm8G43n-F74wM4IRptwYv9FYgW-kBKOi1PY10sdFHXUuOALOnOs/s1600/lots+of+phone+055.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" kba="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhysOdtF0ZFy46Y_BAnhOHWEQ8JAfn9iRgIspBJhYexFilehYzrusefmjbjdK-fLfHvxj7lez5P-rkivfUnOOxeu2JPjm8G43n-F74wM4IRptwYv9FYgW-kBKOi1PY10sdFHXUuOALOnOs/s1600/lots+of+phone+055.jpg" /></a></div>For those that know me your know that since having Tommy I've started doing lots of fundraiser for our children's ward in the past I've had comments made like don't know why your doing that what do you want to do that for where do you find the time , well i thought id explain why i like to fundraiser as you all know Tommy has spent a lot time on the children's ward through illness so for the 1st yr the children's ward become like a second home to us so i feel what better way to say thank you for all the care and kindness they've shown us also i find when I'm doing the fundraiser its kind of a escape from all Tommy's problems and all the every day difficulties we go through each day also its something i enjoy doing and very like I've achieved lots since beginning my venture with fundraiser so watch out for lots more fundraiser fun this yr begin with our valentines ball on 11th Febcjchttp://www.blogger.com/profile/17481176032494995077noreply@blogger.com0tag:blogger.com,1999:blog-3696758089644632393.post-92086202440702167442011-12-30T11:06:00.000-08:002011-12-30T11:06:52.546-08:00goodbye to the bad and raise a glass to the goodOK so tomorrow night brings us yet another new year lets get down with the worse parts 1st a horrible beginning for Tommy with lots of illness mainly chest related and the 1st of two sad loses to our family 1st Goodbye to my lovely Nanny who was always smiling and no matter how ill and weak she was always had time to ask her her baby (Tommy ) was doing i know your watching down on him feeling proud of how hes doing your smile will always live on through him , Sadly June brought the 1st of the scary arrhythmia's which gave me the biggest scare of all time November brought Tommy's MRI scan and him being put under (still awaiting results) and sadly December brought the loss of a very big part of are family my mother in law whom we will always be grateful for as if not for her Tommy would not be with us today you were the strongest person i knew and your strength will always live on through Tommy we look to your star every night and know your always be with us love you xxx<br />
OK now time to raise our glasses for October brought the best news ever when Tommy took his 1st steps unaided that made our world a thing we'd never thought we'd see November brought the 1st steps of signing or Tommy as he learnt biscuit, cake ,drink ,chocolate and more but the thing i most want to raise my glass to is all my new found friends I've met through swan who've always been there with words of support and understanding through the good and the bad thanks swan family i love each and everyone of you loads and am looking forward to meeting lots of you face to face next yr also thanks to some special friends and family who have stuck by are sides the whole journey so far you know who you are so love you guys to and the biggest glass i raise is to my 5 kids my mum and wonderful hubby its been a bad yr but we've made it though step by step as the strong loving family that we are love you SO much your my world <br />
<div class="separator" style="clear: both; text-align: center;"><a href="http://2.bp.blogspot.com/-t4fH1mxUQiA/Tv4LJLDTX4I/AAAAAAAAABc/CzuTEzCmOLA/s1600/all+sorts+103.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" rea="true" src="http://2.bp.blogspot.com/-t4fH1mxUQiA/Tv4LJLDTX4I/AAAAAAAAABc/CzuTEzCmOLA/s320/all+sorts+103.jpg" width="191" /></a></div>So what are my hopes for the new yr well more than anything it will be for people to accept Tommy for who he is and not what they think they see for people to listen to what we tell them as Tommy goes through a lot more on a daily base as any of you wold ever know and some of his needs will never be cured so get over it and deal with it as we have as its what makes Tommy extra special we love him so much and yes my biggest hope would be a answer for all Tommy's needs and the hope i can be strong enough to fight and care for him as he needscjchttp://www.blogger.com/profile/17481176032494995077noreply@blogger.com0tag:blogger.com,1999:blog-3696758089644632393.post-36373314922329737012011-12-27T00:51:00.000-08:002011-12-27T00:51:34.225-08:00Did i get what i wanted for xmas ?Sadly i dread this question year after year as although i got lots of lovely lovely pressies and Xmas was fab with no illness the thing i want more than anything is not the answers to Tommy's complex needs like you'd all think - although that would be the best pressie ever no the think i want more than ever is for people to except Tommy for who he is now he is walking people think oh hes ok hes developing and will have a normal life now this really makes me sad as it just goes to show they only see whats on the out side not all the ongoing dips in the road we go down ever day i know it hard to understand in till you've dealt with it your self but having people not try to understand or even listen to what we tell them hurts Tommy has many complex needs that will never get better and will always stop him from having a normal life hes on 3 different kinds of meds some 3 times a day he has hearing and sight problems and joint and muscle problems his body can crash out with out warning at any time of day but its a case of its behind closed doors so what people cant see in there minds doesn't happen its the same as his sensory issues until you see it happened you don't know.<br />
<br />
Here's a few things which made Xmas different for for us , no Xmas light search due to Tommy's problems with his non dilating pupils makes going in the car at night painful and scary for him , no singing Santa toys sensory problems again , Xmas crackers on Xmas day when those little hands went up and from behind them peeped scared little eyes , Xmas pressies of singing and moving Teddy's and toys up went the little hands again , his big brother got a plane that fly's in the room yep and up went those hands now i feel the pain my eldest goes through as hes told to put it away .<br />
<br />
Those little hands are his shield they make him feel safe but behind them there's no smiles just sadness and fear and to see that makes me sad .<br />
<br />
So no i didn't get what i wanted for Xmas as all i wished for was not to be told yet again how hes developing fine now and will have a normal life .But please before anyone <span style="background-color: yellow;">comments on my blog behind my back like you do let me just tell you i prob had a more rewarding xmas than i could have wished for as it was full of love .</span>cjchttp://www.blogger.com/profile/17481176032494995077noreply@blogger.com0tag:blogger.com,1999:blog-3696758089644632393.post-22959912686582884662011-12-17T00:38:00.000-08:002011-12-17T00:38:13.668-08:00Santa from behind small handsIts that time of year again as today we prepare for Ellis's birthday/Xmas party and being Ellis loves Xmas so much like the little excited 4 yr old he is he has invited Santa to his party today so excitement from all round at the thought of such a great party guest but whist the others will shout and cheer up will pop a little hands and from behind them the cutest eyes will shake and peep for little Tommy has issues with Santa , why we don't know i wish he could tell ,so many questions of what it could be is it his nystagmus making it hard to focus , is it yet again another sensory issue all these questions the answers still unknown - having a swan child we've learnt answers to questions do not come and coping with issues have just become a everyday thing so when all the other children are enjoying the party and chatting to Santa those little eyes will just peep if approached gently and slowly with help from Mummy those hands might come down but its something we will have to wait and see , i love Xmas so much but part of me feels so much pain for those little eyes behind those small hands no cheeky smile we will see when Santa comes to play todaycjchttp://www.blogger.com/profile/17481176032494995077noreply@blogger.com2tag:blogger.com,1999:blog-3696758089644632393.post-18299704949922553212011-12-14T12:46:00.000-08:002011-12-14T12:46:19.710-08:00is it that hard ?Back in November my little Tommy went to have a MRI brain scan afterwards i was told to phone up in two weeks for the results so after 2 weeks of worrying i phoned back to be told the results weren't back yet so phone back next week so i did and still no results this was last Thurs so i was told to phone back Monday so again i did to be told still no results phone back tomorrow so today yet again i phone back and the sectary then puts me on hold to phone the MRI unit she then comes back and said the results are in but waiting for them to be signed off shes asked them to phone her the second they are done and then she will phone me - not going to hold my breathe on that one i can see myself having to chase her problem is once the results are back she cant tell me what they say i will have to wait for the neurologist to phone and tell me so who's for putting on a bet i wont have any news this side of Xmas waiting for results is a worrying time as it is without all this added bother arghhhh really is it that hard to read a MRI scan result and sign them off - OK sorry moan overcjchttp://www.blogger.com/profile/17481176032494995077noreply@blogger.com1tag:blogger.com,1999:blog-3696758089644632393.post-8442170413933813532011-12-12T14:41:00.001-08:002011-12-12T14:41:36.387-08:00<a href="http://youtu.be/cASGQJYFUok">http://youtu.be/cASGQJYFUok</a>cjchttp://www.blogger.com/profile/17481176032494995077noreply@blogger.com0tag:blogger.com,1999:blog-3696758089644632393.post-51506576801528343672011-12-11T04:31:00.000-08:002011-12-11T04:31:30.294-08:00Heaven's very special childHeaven’s Very Special Child<br />
<br />
A meeting was held quite far from earth<br />
It's time again for another birth<br />
Said the angel to the Lord above<br />
This special child will need much love<br />
His progress may be very slow<br />
Accomplishments he may not show<br />
And he'll require extra care<br />
from the folks he meets down there<br />
He may not run or laugh or play<br />
His thoughts may seem quite far away<br />
In many ways he won't adapt<br />
And he'll be known as handicapped<br />
So let's be careful where he's sent<br />
We want his life to be content<br />
Please Lord, find the parents who<br />
Will do a special job for you<br />
They'll not realize right away<br />
The leading role they're asked to play<br />
But with this child sent from above<br />
Comes stronger faith and richer love<br />
And soon they'll know the privileges given<br />
In caring for their gift from heaven<br />
Their precious charge, so meek and mild<br />
Is "HEAVEN'S VERY SPECIAL CHILDcjchttp://www.blogger.com/profile/17481176032494995077noreply@blogger.com1tag:blogger.com,1999:blog-3696758089644632393.post-20588851678829099192011-12-10T08:16:00.000-08:002011-12-10T08:16:08.801-08:00where to start ?Where do i start ? well i guess at the beginning back in Feb 2009 i was at a really happy place in my life i had 4 beautiful very healthy and happy children and a wonderful hubby then came the shock of the yr i was pregnant due 2nd Oct 09 how could this happen i was happy with how things were life was going well and then bang it took me months to come to terms but slowly i did in till at 30 weeks i went into prem labour lucky it stopped so bk to enjoying the summer hols with the kids in till 24th Aug arrives and my waters break no this cant b happening Ive 6 weeks left so down the hospital we go scan shows baby OK but no water left round it a few hours later it all began a night i will never forget with pains coming along fast they discover baby's heart beat drop low a few times and then pick bk up the night of pain just seemed to go on and on with my hubby and mother in law by my side i struggled with the pain and kept fighting i remember saying to hubby if the baby's a boy Ive a feeling he wont b healthy but if its a girl she will b fine then it starts i need to push the heads there and then its gone what was going on all i remember was the pain finally after this happened a few more times there was no going bk i was pushing and the head arrives "stop pushing" shouts the midwife but i cant then my mother in law grabs my hand and looks at me stop or your baby will die i look at her Ive never seen tears like that in her eyes before and that's when i knew i had to try and stop after lots of pain and drama our gorgeous baby boy is born the cord had been wrapped around his neck twice but he was out doctors grabbed him and ran out the room go i shout at hubby go with him your mums with me i will be fine she wraps her arms around me for what seems like forever and then comes a noise i will never forget a very weak cry hes OK the doctors bring him back in long enough for a very quick cuddle and kiss and up to the special care unit he went he spent 2 days in a incubator and then a further 8 days in hospital trying to feed and put on weight he was so tiny he didn't wake for feeds and struggled to feed he also failed his newborn hearing test saying they had no responses in one ear i remember sitting in hospital looking at all the other baby's thinking why wont he look at me when hes feeding i even remember saying to one of the other mums on the ward i cant wait till he gives me that intense look newborns give there mums when feeding finally we were allowed home and our baby Thomas became known as tiny tom at birth he was 4lb2oz but due to lack of feeding he feel below this by the time he reached 14 days old he had managed to pull himself bk up to 14lbs a few days after being home i got the 1st big hit i had a phone call asking me to take tiny tom to the children's ward as something had shown up on his heel prick test after a lot of waiting around we met a lovely consultant who told me tiny tom had congenital hypothyroidism and he would have to take a tablet everyday of his life and have regular blood tests so we went home a few days later he began being projectile sick we went to the g.ps who sent us straight bk to the children's ward after a week of tests and not being able to keep his feeds down he was diagnosed with pyloric stenois and had to be blue lighted to a different hospital for a op on his tummy after the op we went home a few days later with his weight then dropping to 3lbs due to being ill and then starved before the op back at home we continued to note different things that didn't seem right he was still not feeding , there was no eye contact ,he seemed to have no knowledge of his older 4 boys and sisters running around him -and believe me they are not quite , he just seemed to lay curled up in a ball leaning to one side we noticed his right pupil did not react to light and was smaller than the left and that his eyes seemed to dance his left ear was also misshaped and he seemed a grey colour all the time and he was as floppy as a rag doll also he had a high pitched cry he had his ear retested and it was confirmed he has severe loss in the left ear we contuied to fight and point all these things out many people told us it was because he was prem and he would catch up but in my heart i knew different we saw a physio in the Nov who referred Tommy for a scan on his hips thinking he had clicky hips but no it turned out he had hyper mobile joints we saw many docs and he had many tests in the Dec he was taken ill in hospital with bronchitis then finally in Jan he smiled his 1st beautiful extra special smile and began to give some eye contact he slowly put on weight Feb he reached 8lb and could fit into newborn clothes at last Tommy struggled with clearing the secretions in his throat and went blue a number of time but no one seemed bothered but after fight for help he got hyoscine patch's by the time Tommy reached 1st birthday he rolled for the 1st time and got his 1st tooth but we still had no answers to why he had all these problems in Sept 2010 it was discover Tommy had hypertrophic cardiomynophy (thickness to the valves of the heart) yet more daily meds or him to take by now he was on thyroxine 1x day for thyroid , hyocine patches for his secretion's , senna and lac for his constipation but we just seemed to roll along with it all how are life's had changed in a year the winter of 2010 brought many admissions to the children's ward with constant chest infections by Dec Tommy sat for the 1st time which was great but we noticed he was starting to have lots of sensory issues with different things - wheres it all going to end , a new yr a new start ha not in are world in may 2011 Tommy was very ill with pneumonia but slowly recoved and seemed to bloom as the summer began he began to walk with support for his 2nd birthday and in November took his 1st steps unaided Tommy's a fighter and will keep fighting though all life throws at him many people don't understand Tommy and all his problems and think in time he will be like all his brothers and sisters and that it was due to his bad start in life that his development was behind but we know its much more than that he has lots of complex needs and also a few dyamorphic features for now Tommy's whats known as a beautiful swan (syndrome without a name) but we will fight for whats best for him and what he needs in his life thanks to the people who has supported us through the past 2 years and who have believed with us and not told us in not so many words that we don't know what we are talking about ,thank you to my mum who has been there helping us every step of the way and lastly thank you to my mother in law who helped keep Tommy alive that horrible night i know you are now watching him from above and will always protect him and thank you to my 4 children i couldn't ask for better and i love you all so much and to my hubby who's stood by me and helped me to fight every step i love you and to Tommy i love you and no matter how hard life gets you've taught me so muchcjchttp://www.blogger.com/profile/17481176032494995077noreply@blogger.com1tag:blogger.com,1999:blog-3696758089644632393.post-38007716478866727292011-12-10T01:27:00.000-08:002011-12-10T01:27:39.346-08:00welcomeHi and welcome to my blog it is about rasing a child with complex needs and how it affects us as a familycjchttp://www.blogger.com/profile/17481176032494995077noreply@blogger.com0