July 27th, 2010 by aimeem

Hey all,
Just a reminder that race night is this Saturday so if you would like to come I have just a few tickets left so message me on aimeemain@gmail.com (details on fundraising page).
HOWEVER if you are unable to attend why not take a few minutes to look through the list of items we have up for auction on the night- the bidding has already began! If you would like to place a bid please email me and I will add your bid to the list. Remember- no bid is too small.
I also have raffle tickets left and would he happy to bring them to you.
Raffle and Auction
…
Top Raffle prizes- 32″ flat screen hd ready TV, Cannon Digital camera and an ipod shuffle plus many many more

Auction Items are-

Authentic Signed Kings Punjab Club Cricket Shirt belonging to Ravi Bopara-
The shirt is signed by the England World Cup Winning 20/20 Team from this year- 2010

Authentic Signed Golf Flag from the ‘Shark Shootout’ tournament from this year.
Signed by golfers Iain Poulter and Ross Fisher

Authentic Barclays Capital Iridium Cricket Bat signed by Freddie Flintoff

Authentic boxed framed football boot and print signed by Bobby Zomora

Studio session and a 15 x 12 inch print of your choice at Richard Holmes Photography, Burgess Hill- worth £225.00

Personalised signed picture card from Peter Andre (successful bidder will receive after auction to enable Peter to personalise the autograph)

Overnight stay for two at The Avisford Park Hilton Hotel in Arundel, including dinner and breakfast- worth £164.00

http://www.hilton.co.uk/arundel?WT.srch=1

July 6th, 2010 by aimeem

Hey all,
Just wanted to update you all that the Summer Ball has been cancelled due to low ticket sales. Sad but true! However I am instead holding a ‘Race Night’ on Saturday 31st July at Wivelsfield Green Village Hall, and it is gonna be a blast! I have organised for a Professional Race Night Host to come along and run the evening for us. There will be 8 horse races, as well as holding a raffle and auction. Tickets are £10.00 and include a bowl of chilli and rice cooked my very own father and brother (they are both qualified chefs). There is absolutely no dress code and it’s a ‘bring your own drinks’ so can’t say fairer than that!
Tickets are limited and are selling well so if you would like to come contact me ASAP on 07769 186879
Cheers, Aimee x

June 10th, 2010 by aimeem

It is been an absolute lifetime since I last blogged! Unfortunately for the time being I am not able to blog all the details of what my little princess goes through as we are involved in litigation regarding her birth and injury; I can however tell you about how she is developing and how we as a family are doing.

Sydney-Mae has had a heck of a few months but boy you would never know it! I often wonder what makes her such a happy little girl; I truly believe she has a very special spirit and she will just put up with whatever is thrown her way and still come out the other side smiling! She laughs from morning until night- always a joy to be around. She is still going to The Dame Vera Lynn School once a week with me and she has learnt some great new skills such as improving her eating skills. We are still attending ‘The Scotson Technique’ and Sydney-Mae and I are due there in the next few days to learn our new subscription of exercises. Of course we still do twice weekly Physiotherapy and Sydney-Mae loves her Physio so much (she has seen her weekly since she was three weeks old!) so she thoroughly enjoys these sessions. We have a wonderful NHS Speech and Language Therapist however she only gets to see her once every six weeks so as well and paying for weekly private Physio, we are also paying for two weekly Speech and Language Therapy. Physio is £60.00 per hour and Speech and Language is £70.00 as you can imagine fundraising is imperative in order to maintain these therapies.

As ever we are working hard to help Sydney-Mae develop her Gross Motor Skills which entails lots of work on sitting and crawling and we are also using a walking frame with her. She absolutely loves her walker and is getting a lot better at using it. At the moment we still have to help her by pushing her as she hasn’t yet managed to learn to propel but she is definitely improving. We now have a standing frame (which is pink I might add!) which she goes in for short periods of time each day which she also enjoys. The frame supports her in a standing position which is very good for her hips and will help them to fix into the socket, hopefully preventing the need for surgery once she is older.

We are working on an oral programme with her to assist with helping learn to speak in the future. She still very much wants to put everything to her mouth, as when her peers were doing so she wasn’t able to get her hands to her mouth etc so she is very immature in that respect. It is absolutely quite remarkable that every little thing a baby does has a part to play in their development,  for example when a baby is born their mouth is extremely sensitive so by eating their hands and putting toys to their mouth they are desensitising it. They are also learning about what is where, how far they can poke their finger down their throat without choking themselves etc. Don’t even get me started on how amazing eating skills are! For Sydney-Mae to chew something it takes a lot of effort and concentration as the muscles in her mouth are affected by her Cerebral Palsy. Now you just think about when you put food in your mouth; you posit a bit in one part of your mouth whilst you eat another bit etc- all without even thinking about it! How much we all take for granted and don’t realise how amazing the human brain is, and just how much of a struggle life is for people with special needs. I personally am thankful for everything I am able to do and so wish life was as easier for Sydney-Mae.
I heard someone talking the other day about their little girl due to start dance classes and it is that pain I feel right there that I wonder if it will ever go. I wonder if I will ever be able to see little girls wearing ballet clothes and not want to sob. I then have to remind myself I am so so lucky to have been blessed with my two amazingly wonderful children and that I must be thankful I have them and not dwell on what isn’t, and embrace what is.

Sydney-Mae attends a local nursery two half days a week and I cannot praise them more. They haven’t ever had a child there with Cerebral Palsy before so to begin with I was of course a little anxious, but I really had no need to be. They have bent over backwards to accommodate my little princess; the staff are all so eager and willing to learn and I feel so confident I drop her off and feel at ease. Sydney-Mae absolutely loves the social interaction with her peers, she loves watching them all play and sing. They also are sure to involve her, often coming up to her chair to play with her. She has a 1:1 member of staff at all time so is fully included.

I am now selling tickets for The Sydney-Mae Fund Summer Ball so if you would like to come along and support us we would love to have you there! Please see the fundraising page for details.

Thanks for taking the time to read these blogs and for all your love and support, Aimee

March 23rd, 2010 by aimeem

I feel terrible I have not blogged for soooo long! I assure you I have not been sat on my bottom relaxing; the time just whizzes by. As ever there has been lots going on in the Wiggins household what with having two working parents, a very active nine year old, all the appointments for Sydney-Mae and fundraising. Oh yes and Ross training for the Brighton Marathon- mustn’t forget that! He is training very hard and is up to almost twenty miles and we are all so proud of him, he has such commitment and determination. He is running for ‘The Dame Vera Lynn Trust’ who funds the ‘School for Parents’ we attend in Billingshurst every week. I have spoken about it in previous posts so I won’t go on but feel free to have a look at their new and updated website; I have to tell you this place is just amazing and we love it! The website address is http://www.dvltrust.org.uk. Taylor is also in training as he is running ‘the mini mile’ part of the Brighton marathon which is the last mile of the route, so he will have lots of people cheering him on. Taylor’s cousin had Leukaemia when he was younger so Taylor has chosen to run for ‘CLIC Sargent’. If you would like to sponsor either of the men in my life please let me know, alternatively Ross has a Just Giving page- the address is www.justgiving.co.uk/ross-wiggins

Sydney-Mae unfortunately spent the best part of last week in The Royal Alexander Children’s Hospital with Pneumonia. She had been continuously poorly for a number of weeks with one thing or another and after a course of eye antibiotics and two courses of penicillin she was still becoming more unwell by the day. After four very hard days for her in hospital and numerous needles stuck into her and blood tests etc we were very relieved to come home. The doctors were actually confused (again!) as to what was wrong with her and were initially talking about seizures and brain bugs such as Meningitis so we were really relieved when they said it was Pneumonia as this seemed the lesser of all the evils. After weeks of her being very grumpy and crying lots it is awesome to be home with her being happy and gigging like the princess we all know!

Sydney-Mae will turn two in eight weeks and we can’t believe time has gone by so fast. I have spent the last year dreading her turning two as the guidelines for children with Cerebral Palsy state ‘if a child doesn’t sit by two years of age they will not walk unaided’. I have now come to realise a few things such as what if the child is like Sydney-Mae and very strong willed and every time you sit them down they throw them self back as they don’t want you to leave them; also what if they sit by 2 and a quarter etc. I now say sod it to the guidelines and Sydney-Mae will do what she will do regardless of what ‘they’ say, so there!

As ever I am fundraising at the moment as we need a certain amount of money per year to help pay for the treatments we do such as private physio and speech and language therapy, also equipment Sydney-Mae requires. I have decided to do a big fundraiser this year so not only can I raise the money we require but I can also give a substantial amount to another worthy charity; this time I have chosen The Dame Vera Lynn Trust (see above). We will be splitting the money raised by giving them 70% and The Sydney-Mae Fund 30%. The event is ‘The Sydney-Mae Fund Summer Ball’ and is a night you won’t want to miss! For more details please refer to the ‘Fundraising Page’ on this site.

January 10th, 2010 by aimeem

Firstly I apologise it has been so long since I last updated but we have had a lot going on with our fabulous two weeks in the states, Taylor’s 9th Birthday, Christmas and not to mention the snow! I will start with New York. It was an amazing two weeks and we appreciated every minute we were there and unlike past visits really appreciated how fortunate we have the opportunity. When we were younger before kids and mortgages we could go at least a few times a year but you will all know that kids+ mortgage = skint!! We just now have to pay off the credit card! New York is an amazing city and I can honestly say like no other place I have ever been . We were there for Thanksgiving and Lynn, our good friend who we stay with in New Jersey (Taylor’s God Mother) has this awesome job working as a Stage Manager at all of the hottest celebrity events and award shows and she was working at the famous New York Thanksgiving Day Parade. She gave us back stage passes and we were in the VIP area where Jamie Kennedy and Jennifer Love Hewitt were presenting live which was really cool- especially for us little people from a small town in England! Taylor and his God Brother were shot live on air with the presenters and had their photos taken with them which was kinda surreal.
As I mentioned in my previous post we had two appointments whilst in the states- one with a Paediatric Neurologist and another with a Physiatrist who both worked at The University of New York. Firstly we met with the Neurologist who’s first words to me were “are you expecting another?” to which I replied “no I am just fat” so that was a great start!! We were disappointed as we had emailed over Sydney-Mae’s file and sent her MRI Scan DVD so we presumed she would know all about her s to save time in telling the entire story to date but unfortunately that would be too good to be true as she “vaguely remembered receiving the information but cannot recall so please tell me again”. As you can imagine we were a little unimpressed with that. In a nut shell she observed Sydney-Mae and did not really tell us anything we didn’t already know other than she feels Sydney-Mae has mixed Dystonic Spastic Cerebral Palsy rather than just Dystonic, and also she feels I may have suffered a condition whilst pregnant which could actually explain what went wrong with Sydney-Mae, however I am not sure we will ever really know this for fact or be able to prove this. The Physiatrist appointment went well and again she didn’t really say anything new other than she was concerned for Sydney-Mae’s left hip and is anxious we have an X-Ray sooner rather than later. She also made some suggestions of alternative equipment we may want to try and medication to help with the tightness in Sydney-Mae’s arms but that is not an option we would ever consider at such a young age, we will keep her little body medication free for ever if possible. Both the professionals said they were ‘hopeful’ she would walk. The other thing these appointments highlighted for us was that the team we have around Sydney-Mae are in fact fabulous and doing a great job and there was nothing they were missing. We thought we may be met with a little opposition when returning to the UK with the reports suggesting a hip X-Ray etc but our consultant was fab as ever and referred us for an X-Ray which we are now waiting an appointment for. All in all we were a little disappointed with the consultations but just to know the care we are receiving here is no different to America was great. We also purchased a new special needs pushchair for Sydney-Mae whilst there which was a weight off our shoulders as we had been told the one we had was not suitable yet I hated the ones the NHS were offering as they were like wheelchairs with a baby seat in. I will post a photo of her in it soon as she looks super smart!

We has a wonderful Christmas and both the children were ridiculously spoilt but they are worth it. Sydney-Mae is still too young to understand what was going on but had a great time anyway. It seems the holidays are a time when you become more aware of how things are compared to how they ’should’ have been, for example I got Sydney-Mae dressed into her beautiful red dress and put a cute bow in her hair and it was as though for a moment I expected her to just turn on her heels and run off to play with her new toys from Santa. Then I remembered and lay her down on the floor and brought the toys to her and I just hurt so much I had tears streaming down my face. The upside is thankfully these moments of sadness are very short lived, until she gives you one of her famous smiles and it is all ok. I recently read in a forum I am a member of about a little two year old who they had mis-diagnosed with Cerebral Palsy when in fact she has a brain disease and has been given a year to leave. The mother posted a message on the forum asking us all to be thankful for our children and enjoy every moment and it is moments like this I am thankful she has CP and not some other horrendous condition. My heart breaks for that Mother and her family and they are in my thoughts.
A few months back I was very excited that she has now started to sit and I am excited to say she just gets better and better with it. No it’s not the conventional way where a parent plonks the child down on the floor and walks off, but all the same it is sitting. She needs to build up endurance now which is what we are working on. She also has a few new skills-

High fives
Waves- in her own way when she feels like it!
Beginning to actually babble
Attempts to sing ‘arr’ in ‘twinkle twinkle little star’
Has discovered ‘In the Night Garden’ and watches the shows and anticipates what is coming next by giggling a little too early
With support is learning to crawl
Is beginning to show signs of the terrible two’s which is absolutely age appropriate
Is learning to use a ’switch’ (a button she hits to play toys and games on the laptop as she can’t push the small buttons)

We are still struggling with feeding as she has a tongue thrust which means she tends to push it back out again but even that is improving due to the help we have received from both her Speech and Language Therapist and the staff at The Dame Vera Lynn School for Parents

I have contact with a few mothers who are also on this journey, mostly with younger children so are newer to this journey. I just want to say keep up the good work- I can assure you it does get easier. You will see small improvements at a time but hey- they are improvements all the same. At times you feel they are not getting anywhere but what you don’t see is that the brain is doing all the behind the scenes work and you will soon see the results. Keep on keeping on and you will feel so proud of every little thing.

Much love, Aimee x

November 16th, 2009 by aimeem

Well Sydney-Mae is just as it is says in the title- such an amazing little star! For a while it seemed as though her development had plateau and she was not making any new progress. It would now appear that the brain was working hard behind the scenes and we are now witnessing all the hard work! Awesome! As I said a few posts back she is now sitting unaided- WHOOP WHOOP! I have lived for this day for so long. Yes she is still very wobbly and needs help to get her balance initially but hey- who cares? She does it and it can only get better. For so long this is all we have dreamt of as ‘they’ say if a child does not sit unaided by 24 months they wont walk. OK she may still not walk unaided but now I just feel like I can relax and breathe which is always a bonus!

We had a big review last week with her Consultant, Physio, Occupational and Speech and Language Therapists. You may remember me saying the last time we met with the Consultant she told me that she felt she has misjudged Sydney-Mae’s disability and felt she was actually more severely affected than once thought. During this meeting she had also stated she felt Sydney-Mae will never be able to sit unaided without using her hands to ‘prop’ herself up with. Well you can imagine how amazing it was when she saw Sydney-Mae sat there WITHOUT propping herself- was fabulous. This meeting was just a very positive and uplifting one where the following was said-

We must be sure to talk to her lots and explain her environment to her as she can’t yet freely explore it

Also to tell her things which we feel a child would usually be asking as toddlers ask lots of ‘why’ questions

It is felt she has good intelligence and learning ability and we must hone in on this by reading to her lots etc

She should be encouraged to try to self feed so start giving her the spoon- encourage her to make a mess with the food, rub it on her face etc as this is all part of learning. Those of you that know me well will know I will struggle with the mess but hey, you gotta do what you gotta do!

They also Sydney-Mae use her walker for the first time and were amazed by her walking ability- she still needs someone to give her a gentle push as she has not learnt how to propel it yet but she does so well with the walking. The Physio and Consultant agreed they had never seen such a young toddler with CP get on so well with a walker. She is just such a little star!

We had our three monthly visit to ‘Advance- The Scotson Technique’ (www.scotsontechnique.com) last week and Linda Scotson was ever so excited with SM’s development, especially the sitting which was great to hear. Her body shape is changing as predicted and proved by the measurements taken and her breathing has drastically improved. When we had it measured in January of this year her range for velocity of expiration in the abdominal section was 42.99 where as this visit just ten months later it was 2.8. Again just great news.

We are off to New York next week and whilst there seeing two professors at New York University which we are just so excited about and hope they have lots of feedback and information for us. We have sent SM’s file, my maternity notes and the MRI and EEG Brain Scan results.

Here are a few more photos of the star herself.

November 4th, 2009 by aimeem

Enjoy!

Sydney-Mae on her first ever flight and she loved it

Taylor reading to his little sister- such a lovely big bro x

On her roll which means she is on her knees helping her to break her pattern

Sitting up unaided but not looking too happy about it! Mummy and Daddy are though!

Our beautiful halloween pumpkin in her new walking frame

Sitting again- uh oh where has Robyn's head gone though?!!!

November 2nd, 2009 by aimeem

It has become apparent to me in recent weeks that having a new sibling who has special needs is quite difficult for Taylor. Taylor is almost nine and a very grown, independent and confident nine year old at that. His behaviour had started to be quite challenging and Ross and myself found ourselves constantly telling him off, shouting at him and generally being frustrated. It wasn’t until I was in conversation with Taylor a few weeks back and we were talking about Ross and I had said “you are lucky as you have such a good Daddy” to which he replied “not anymore, he used to be”. I was very taken back and asked him what he meant when he replied “well before she came along”. She of course meaning Sydney-Mae. He had never once before made any negative comments about her, he is such a loving and gentle brother with her. I had a long chat with Taylor about how he felt and he said that we used to play with him lots; play board games etc and this had all but stopped when his sister came along. I felt as though my heart could break because he was absolutely correct- we had forgotten to do all those things. Obviously this had not been on purpose but when you have a new child with special needs and complications life is not as it once was- you are at continuous appointments, always working hard to help the child reach their full potential and just generally become consumed with fear and worry for the future, as well as joy for today. I called Ross to tell him and he felt as terrible as I did. Needless to say we have been playing much more with him and his behaviour has gotten much better.

Yesterday I was changing Sydney-Mae’s nappy and he asked me if she will always need her nappy changed. I replied that I pray with all my heart not but that some children with CP cannot be toilet trained so we would just have to wait and see. He then asked if she could not be toilet trained would he have to change her nappy when I and his Daddy die. I assured him that if that was the case she would have carers to look after her and he would never be left to look after her if he did not want to. He then said “I won’t mind- I am going to have a massive house so she can live with me with a swimming pool which she can use”. I could have cried, half because he is such a lovely little boy to feel that and secondly as it hurts to think that at the age of nine he is wondering who will help his sister when he have died.

Today was the first time we took Sydney-Mae out with her new walker. She is not confident in it yet as we have only had it a few days so I thought we could take it along with us and put her in it in the local playland. Taylor carried the walker in and as he did we heard this little boy saying “that little boy can’t walk properly, he needs a wheelchair” (why someone needing a wheelchair would be carrying a heavy walker is boyond me). Taylor was mortified at this and said to me he did not want to have to carry it as he found it embarrassing. I asked him if Sydney-Mae is one day in a wheelchair is that embarrassing and he said “yes”. I felt like telling him off as I was so hurt and the tears were stinging my eyes but then I realised he is only 9. I need to let him work through it himself. I know if ever that time comes he will be proud of his sister and push her down the road, because he is a good loving boy. I just feel as though today was a tough day as it was the first time anyone knew that she has a disability due to the walker- but screw them! She is my little princess and I am so proud of her. I am proud of both my children.

I guess my reason for this blog is to highlight the difficulties for the siblings of special needs children. It must be so hard for them as life is not as it is for their friends e.g. Taylor can’t just sit and play with Sydney-Mae in the traditional sense. They can’t go run around the park together or Sydney-Mae is not the normal annoying sister who steals his toys and runs away. I now have more realisation and understanding of Taylor’s feelings and we will ensure he does not feel left out again.

October 28th, 2009 by aimeem

After a long sixteen weeks of blood tests being messed up and doctors not communicating with us (!) we finally have the results for the Angio-Oedemia. Thankfully they were negative so we are obviously very relieved; however we now have to enter into a whole new barrage of tests. I had to take her to the Alex last Friday where they did another chest x ray, an ultrasound of her face and her neck. They also did her bloods again to ensure the white cells had gone back up to a normal count. I am presuming they want to rule out all the nastiest I have previously told you about. I have also requested that they also go down the route of allergies as I have a sneaky suspicion it could well be allergy related. We so far only have the results of the bloods which were fine thankfully.

Sydney-Mae had her first measles injection last week as we have chosen to do the MMR individually and so far so good. We were slightly on edge due to the higher risk of seizures. She is currently cutting four teeth so is having us up in the night and moaning lots in the day unless she is being cuddled but I think that is all pretty age appropriate!

We have had a few good weeks with Sydney-Mae development wise. We are now three weeks into Conductive Education at The Dame Vera Lynn School for Parents in Billingshurst, and she really has come on leaps and bounds- all very small steps admittedly but all going in the right direction. She is now rolling a lot more and becoming more and more happy to be on her tummy. She now plays nicely on the floor lying down and loves picking up toys etc. At school we do ‘crawling’ practice and she really gets how to do it with her legs but her arms are another story. Her arms are so much worse affected than her legs but we are seeing that her arm function is slowly improving e.g. occasionally getting her dummy into her mouth and putting a biscuit to her mouth. She has amazing stepping and we are awaiting the arrival of a new walking frame that will hopefully give her more independence.

Our Physio is super excited by Sydney-Mae’s development and I wanted to share some notes she has written about her this past week-

17/10/09- Home treatment

Treatment with Ross. Fantastic session. Ross feels Sydney-Mae is using her hands well and rolling around a lot, yesterday he found if he supported her she “crawled” her legs but seemed unable to move her arms. We started off commando crawling into the kitchen. Sydney-Mae thought this was very funny and she liked the different floor surface. We then worked with her roll on high kneeling pushing her body up using flat open hands. Sydney-Mae was able to lift up her trunk independently on “command”. We also spent quite a lot of time in 4 point and low kneeling both with fantastic weight through open hands. Lots of giggling and gurgling. When sitting Sydney-Mae seems unbothered by trying too balance because she has finally discovered toys, she wants to hold them, mouth them, look at them and generally play! This means if she is propped forward she is not extending and so can balance. Now we need to perfect the sideways control. Another Thing Sydney-Mae did for the first time was to bend her leg, she can now internally rotate her right leg independently to side-sit. I am loving working with this princess and seeing her change!

That just says it all- we are so proud of her and celebrate her every little achievement.

Two of my fabulous work colleagues held a fundraiser for Sydney-Mae last Thursday and they made £97 which was just awesome. My line manager who makes a mean curry and one of our Admin ladies who makes the most scrumptious cakes, and they sold lunch of curry and cake for a fiver! Sydney-Mae also came along to the lunch as the guest of honour! Thanks so much to my fabulous colleagues who’s support we appreciate so much.

Finally we are off to New York in a month and we are so excited- I used to live out there as a nanny for four years and the family I nannied for are extremely close friends of ours and we are staying with them. Whilst we are there we are visiting NYU to get a second opinion on Sydney-Mae and a prognosis and information on therapies etc so watch this space. Our friends have just adopted a beautiful little girl so we will also be there for her Adoption Party, as well as Thanksgiving so we are really looking forward to two weeks of activity and catching up with old friends.

I began to write this blog entrance earlier this week but have been so busy I had to do it in instalments! Well I am so excited to be able to say that Sydney-Mae now sits up!! OK it is a little wobbly and she still needs me to be in close proximity and it will no doubt be a long while until she is ’safe’ at sitting, but hey- she can do it! We have waited so so long for this so I cannot tell you how proud we are of her. She also had a fabulous session with her Speech therapist yesterday who as ever was very impressed with Sydney-Mae and said that the way Sydney-Mae plays ‘turn taking’ with us with making noises is indeed the first stage of talking! All in all a good week!!

I will put some updated photos of her sitting etc in the next few days,

Aimee x

October 5th, 2009 by aimeem

On Friday 11th September Sydney-Mae started at her special needs playgroup. Half hour into the session I observed that her bottom lip looked a little blue and she was a little floppy and lethargic. I took her to the doctors straight away who told me she had a temperature of 103 degrees poor love so I took her home. I was advised if her temperature did not respond to calprofren within a few hours to take her to the Royal Alex. Later that day we went to the Alex and she was admitted over night. She had bloods done and thankfully they were all normal. We went home the following day and it took her the best part of a week to be back to her old self. I took her back to the Alex on the following Wed to have the bloods re done that they had so far managed to mess up three times previously. I found this visit to be particularly difficult as the consultant we are under for her puffiness around her face told me that if the bloods come back negative and she does not have Angio-Oedemia, they will need to arrange for her to have an ECG under a general anaesthetic to check her chest. I was confused by this and was informed they had to check for lymph node glands on her chest which would indicate Leukaemia. I was extremely taken back- during this conversation Leukaemia was mentioned about ten times. My Nephew had Leukaemia when he was much younger so we as a family have lived through it once and pray to God we never have to again. My Nephew has just started secondary school and is an amazing young man. They took her bloods again and whilst there took a full blood count (the same as they had done five days prior when she was admitted). Unlike last time where they were all OK we were told this time her white blood count was slightly low but not to worry! ‘Oh Ok then we wont, easy as that!’
She reassured me that so far there were no other signs to suggest Leukaemia but ‘it has to start somewhere!’ We were told the Angio-Oedemia Results would take two week and low and behold three weeks later are still awaiting the results so it has now been three bloody months and we are still none the wiser! It is safe to say I am not the Alex’s greatest fan at the moment!

As I mentioned we started a special needs playschool and am really sad to now have been told it is closing down at Christmas after fifteen years due to a lack of funding! It is so disappointing and frustrating as that means we no longer have any special needs playschool in this area. We are also going through the process of getting everything ready for Sydney-Mae to start mainstream nursery in Jan. I was initially told the LEA would fund a 1:1 for her but am now getting the vibe I may have to be prepared to fight for that a little so bring it on! It’s all about inclusion and she will not be able to be ‘included’ if she is left laying on the floor when the other children are playing musical chairs or whatever so she definitely needs a 1:1.

We started at ‘The Dame Vera Lynn School for Parents’ last week and it was just awesome! It was interesting as we had been told by our Osteopath Stuart Korth a few days earlier that he felt Sydney-Mae needed a kick up the backside and that she was capable of doing more than she is and both Ross and I agreed with him. She is indeed a little bit of a lazy madam and she was a little unhappy at the school that they made her, Princess Sydney-Mae, do some work! She made angry sounds I had not ever heard before and it did make me laugh! I am really positive about attending there and really hope they can help us bring her on. The most fabulous part of the day was meeting Dame Vera Lynn- apparently she pops in once a term and it just so happened to be our first day. I had a lovely chat to her and I had the opportunity
to thank her for providing the school to help parents such as ourselves who have been thrust into a life of uncertainty, the advice and support given at the school is just invaluable.

Finally- the saga that is the Disabled Facilities Grant! We are looking at plans to adapt our family home to accommodate Sydney-Mae if infact she cannot walk unaided. We had a meeting with our Occupational Therapist, Environmental Health Officer and a Surveyor. The grant we can get is £30,000 and the plans came to £68,000 so back to the drawing board with that then! We have been told that this entire process will take approximately two years so you will hear lots more about this I am sure!

To end on a more positive note Sydney-Mae has made some progress in the past few weeks. I am working really hard with finger feeding and she is really getting better with eating biscuits etc- not the healthiest but hey- whatever works! The awesome thing is that she actually bites on things you put in her mouth now and once it’s in her mouth she can continue to munch it and swallow it without gagging which we used to do a fair amount! She can also now at times pick her dummy up and put it in her mouth but bless her it really takes a lot of work. She is also rolling around more on the floor and showing signs of wanting to try to crawl but not actually doing it yet. We were told we have to start putting her on the floor more and it was right, let her go back to basics and do all the stages of development she missed out. Well Sydney-Mae you are doing well- keep it up! We love you and Taylor baby girl x