goodbye to the bad and raise a glass to the good

OK 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
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

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 needs

Did 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.

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 .

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 .

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 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 .

Santa from behind small hands

Its 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 today

is 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 over

http://youtu.be/cASGQJYFUok

Heaven's very special child

Heaven’s Very Special Child

A meeting was held quite far from earth
It's time again for another birth
Said the angel to the Lord above
This special child will need much love
His progress may be very slow
Accomplishments he may not show
And he'll require extra care
from the folks he meets down there
He may not run or laugh or play
His thoughts may seem quite far away
In many ways he won't adapt
And he'll be known as handicapped
So let's be careful where he's sent
We want his life to be content
Please Lord, find the parents who
Will do a special job for you
They'll not realize right away
The leading role they're asked to play
But with this child sent from above
Comes stronger faith and richer love
And soon they'll know the privileges given
In caring for their gift from heaven
Their precious charge, so meek and mild
Is "HEAVEN'S VERY SPECIAL CHILD

where 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 much

welcome

Hi and welcome to my blog it is about rasing a child with complex needs and how it affects us as a family