Poland Syndrome Awareness

I wanted to blog about our experience with Poland syndrome as we had such a difficult time getting diagnosed and finding someone who understood what was wrong with my son going back 11 years now when my eldest was born he was born early and he was happy and healthy.

One day when Thomas was a few months old I noticed that one side of his chest did not appear the same as the other there was a lump like a bone, I pointed this out to my health visitor and my GP and they said not to worry as he was growing this was becoming more noticeable so I asked to be referred to Alder Hey children's hospital we were seen by a doctor who sent us for an x-ray and he said some of Thomas's ribs were fused together and that was that some people are like that and it was nothing else, so off we went.

As Thomas grew his chest became more noticeable and 1 day whilst reading the paper I came across a story of a man who had just been diagnosed with Poland syndrome, I read more and was sure this was what my son had, I took him to the GP whom told me that Thomas did Not have Poland syndrome as his hands were fine, but  the older he got the more I knew that the muscle in his chest was missing and I was sure I was right ......But how do you go to your GP and say your wrong I'm right?

I eventually found an amazing support group here in the UK and spoke to someone I will be forever grateful to, a lady Lynn Farmer at www.pssgcharity.org/ she gave me so much information and support and put me in contact with a doctor who she knew could diagnose once and for all  by this stage my son was 8 years old.

We travelled to derby and the Doctor confirmed finally that my son did in fact have Poland syndrome, I was relieved to know that I was not just a manic mother but I was actually right all along.

After our visit to Derby, Thomas was seen in Alder Hey again this time by a fantastic Consultant whom was really interested in Poland Syndrome and he explained to us how rare it was and that this was the first time he had ever seen this, Thomas had to have a scan to make sure all his organs were in the correct place and thankfully they were although we were told it was a really interesting scan and he has many ribs fused together, also a couple of muscles missing on one side, but another muscle compensates as he can still do monkey bars, swimming and everything else.

Thomas who is 11 now can have surgery if he ever decides he wants it but for now he is happy and does not  mind at all, that's our journey so far but for anyone that does not know what Poland Syndrome is I am adding more information.

What is Poland Syndrome ?

Poland's Syndrome is a pattern of one-sided malformations characterised by the
absence of the pectoralis major (chest) muscle and short, webbed fingers on the
same side of the body.  Poland's Syndrome can affect either side of the body but
occurs more often on the  right side.  The syndrome was named after Alfred
Poland, the person who first documented the abnormalities.  It has also been
called Poland Sequence, Poland Anomaly, and Poland Syndactyly.


How Do You Know If Your Child Has Poland's Syndrome?

Poland's Syndrome is evident  at birth.  The first distinguishing characteristic is
the absence of the pectoralis major muscle, the main chest muscle that normally
attaches to the breastbone.   Nearby chest muscles on the same side of body
may also be absent.  In girls, the breast on the same side is usually absent.  The
second characteristic of the syndrome is the hand malformation of shortened,
webbed fingers on the same side of the body as the absent chest muscle.  In
rare instances, more severe finger,  arm, kidney, or spine problems may be
present.

I am a member of The Poland Syndrome support group who can also be found on Facebook they are very supportive and full of great advice.

SATS and STRESS

Stress Stress and more Stress ......... My 11 year old is feeling this way as his first SATS exam is today, I never thought about these year 6 exams before this year and I feel for any parent or child going through this. 

I suppose not all children feel the heat, but My 11 year old worries about worrying and these SATS exams have taken him to a stage in his life that no child should go ....... he feels that if he does not do well then he has failed and will never get a job and be one of life's failures, ( he's 11 for godsake).

I have been revising with Thomas the past few weeks and have never felt thicker, believe me I have found words and meanings I never knew existed I did purchase some amazing books Letts, KS2 Success  from amazon and these explain so much I can honestly say I would have cried without them I will do a review of them as they were so good and helped me and Thomas.

So what are SATS .......... National curriculum tests - popularly called Sats - are taken by 11 year olds in England in their last year of primary school, at the end of Key Stage 2. Pupils sit written tests in English and maths. The results are published by the government and are used by the media to compile primary school league tables................ So the question is will they have any impact on my childs future and the simple fact is NO!

I have tried my hardest to help Thomas and even though he got fantastic marks in his mock exams a couple of weeks ago the confidence has faded as I am sure it has for many other children.

Why when 11 year olds are going through a stressful enough time with the thought of moving from primary to high school add even more pressure to them? my so was upset and could not get to sleep last night due to the pressure he feels under which is not good for any child of any age.

I really cannot wait for this week to be over for the children so they can start enjoying what little time left in primary school they have.

I hope all children taking exams now stay calm and just do there best, us parents are proud of you this way no matter what the marks are.

Auditory processing difficulties - what next

Michael my youngest has had a long battle with his hearing and breathing problems, everything had been fine until his first birthday when he got Scarlet fever, and things went down hill his hearing was affected I did have to battle as I was told his hearing was fine by the age of two he had a teacher for the deaf and a speech therapist coming to see him weekly, and to add to this he was in and out of hospital with breathing problems severe asthma.

Now at 7 years old in year 2 his hearing loss has really gotten much better and he speaks brilliant, he does have SEN, me and his teacher decided he could benefit from another hearing test so a couple of weeks ago we went along to audiology and his hearing was ok, but Auditory processing disorder was explained to us and we were told it was very hard to diagnose but Michael did have Auditory processing difficulties and  most hospitals will not diagnose Auditory processing disorder no follow up appointments nothing.

 we are very lucky as my sons teacher has arranged one to one maths of a morning when all the other children are in assembly and he gets other one to one support in class but my worry is what will happen when the support stops?

We were told by Audiology that there was no need for a further follow up appointment with them as they could not treat Michael, so feeling a little lost  .

It  looks like google and finding other parents and ways to push Michael as hard as possible is my only way forward to try and help Michael as much as possible memory was one of the really low results so will be on the look out for memory games and as much information as I can get.

Ravensburger 3D Puzzle Review - not just your average puzzle

When we were asked to write a review for the Ravensburger 3D Puzzle we jumped at the chance, The 3D initial launch collection has 4 different amazing designs, The Eiffel Tower, Big Ben , The Empire States Building and A Red and White Lighthouse.

The puzzles have 216 pieces which include hinged and curved pieces and amazingly no glue is required because of great interlocking system, The recommended age for these is age 10-99 years, so an ideal gift for everyone, The prices start around £16.99 rrp.

We received the Eiffel Tower puzzle which once completed 

stand a brilliant 44cm tall.    

Inside the box you receive a very study cardboard decorative base, 7 plastic parts which will help form your 3D Eiffel Tower, 216 jigsaw pieces and your instructions which have some very interesting facts about the building you are going to make.

Thomas my 10 year old made a start on our puzzle, all the pieces are numbered which make things easier when constructing, The Eiffel Tower is built in three sections so Thomas decided to separate the jigsaw pieces for each part the numbers he needed were clearly noted on the instructions and this made things a lot easier and saved lots of time too.

Thomas set up his base and began building he built each part before placing it on the base and the puzzle was sturdy enough to do this, the pieces clipped together and stayed in place which really helped him to do it this way, The hinged pieces seemed a little tricky at first but he quickly got the hang of how to do them.

As the puzzle got taller, it also got thinner which made the pieces a little harder to place but Thomas managed fine.

Thomas really enjoyed making this puzzle and needed no help in doing it, he now has his completed puzzle on display in his room, I cannot say anything negative about this puzzle Only positive.

 Thomas has said he wants the other ones now, we would recommend for people of all ages.

A new family member finally arrived ......

After a very anxious and scary wait my little niece Abigail arrived, I have to say she is so beautiful and perfect in every way possible.

I am so lucky that I have a close family and see them everyday, sophie is no longer the only little girl and is over the moon that she finally has a little girl to dress up with her.

Congratulations to my family and Abigail's 2 big brothers ...Welcome to the world Abigail .

The Goblin and the Girl by Neil Irani ...... great book

Goblin and the girl children's book by Neil Irani and illustrated by Yun Park, published by Maverick books.

This book is quite simple and my children really liked the story  and the illustrations are brilliant being a mum I thought this book was getting another message across reading the title you obviously think there is going to be a Goblin in it, but its actually gone one step better and the little girl sees herself as a goblin when ever she looks in the mirror I don't want to give to much away but I guess most girls and boys at some point feel like this and this story does actually address that just because you feel this way it is not true.

At the end of the story it shows that the little girl actually only needed a friend and someone to talk to  and when she looked into then she seen herself in the mirror .

In today's society where people are so wrapped up in being perfect, this book explains in children's terms.

I highly recommend getting this book my daughter loved it, its easy read but a deep story with a simple text.

Secondary school placement wait

As every parent understands once their child reaches year 6, you have the dreaded decision of trying to choose the best secondary school for your child.
I like most found this really difficult what if I picked wrongly this was actually the hardest decision I have ever had to make, much harder than buying a house or picking a wedding dress this massive decision was my child's future and even worse what if they did not get a placement !!!

We have 3 secondary schools near us 1 which is catholic so this was not an option the other two like many parents we went and walked around taking the grand tour and meeting pupils basically cemented our original choice but catch we live just on the boundary or the catchment area like many other children applying.

The applying on the form it requests you put down 3 options, I did not want any other school and neither did my son, the secondary school we have picked is next door to my children's primary school so I will be there if my boy will still walk with me ( so many parents have told me once they go into high school it is not cool to be seen with mum) my boy still kisses me at the school gate, NEVER to old to kiss mum.

So the on line for had to be completed the beginning of October 2011, why does it take soooooo long to give us parents the decision Did our child get a placement ?? myself like many other parents am going loopy waiting, I try not to think about what if he is refused but as the 1st March draws closer my heart is sinking.

Really what if we do not get a place, Like thousands of other parents its a waiting game, and if I have not totally lost the plot by announcement day I will hopefully be able to celebrate.

Good luck if your a year 6 mum like me xx