Shoes To Fit Splints

One of the downfalls of having children with Cerebral Palsy, is finding adequate shoes that can fit over the splint. Both Lauren and Luke wear splints, Lauren 24 hours a day (with maybe 2 hours rest) and Luke wears day splints. We have been attending Orthotics clinics for years now with the kids and we have never been recommended of a place that actually sells shoes to go over splints……We have finally found somewhere. The day I found them I was over the moon, as any parent whose child has cerebral palsy will know how hard it is too find good supportive shoes to go over the splint.

Splints are commonly made out of plastics that can be heated and moulded directly onto the body. They can be produced quickly; however, the plastic is not very strong. As such, splints are usually recommended only when the device is needed for a short time, or when there is not much force placed on the material. So finding shoes that go over the splint , it was like winning the lottery

Laurens Splints and Trainers

Laurens Splints and Trainers

The other thing is that shoes that we do find and normally it is trainers, wear down very easily as sometimes when Lauren is on her frame she will get lazy and drag her legs, scrapping the shoe. We find ourself buying trainers every 6 weeks. So Im hoping these new shoes will last a bit longer.

It is a sport shoe, so its not like Lauren is finally in heels, but it’s a shoe that accommodates the splint. These shoes are called Tomcat Twisters. They are available in all sizes from a childs size 7 to adult size 5 ( in the UK). There is a winter and summer collection and they are available in 4 different colours…. We will be getting the pink :)
The company is called Tomcat and they don’t just do shoes they also do bikes, trikes, chairs and safeguards for beds.

Tomcat Twisters

Tomcat Twisters

Tomcat Website http://www.tomcatspecialneeds.co.uk/products

Lauren’s Pumps

Lauren is absolutely delighted. She has finally fitted into her 1st pair of pumps with her splints. It’s so hard finding shoes that fit with her splints. Her words were “Yes, I’m so lucky”. Little things like a pair of shoes, have just brought a huge smile

20140430-163157.jpg

Erin Can Finally Hear

20140311-102133.jpg

Yesterday was a very long awaited and anticipated day.  16 months ago my daughter Erin (6) was diagnosed with deafness, another symptom from her primary condition FACS.

Since becoming a mum, I am used to having diagnosis of many things with the kids but I was so upset about Erin having hearing loss.  She was always very loud but I just put it down to Erin being Erin and also having 2 sisters and 2 brothers a way of her seeking more attention.  I also envisaged the hearing aid she was to be fitted with like my Grandad’s (15/20 years ago) an aid that would be like a box, a mustardy grey colour and be whistling on and off.  It may sound very nieve and in a way I am, but until your faced in this situation, you don’t know what to expect.

What a long way in technology we have come.  The hearing aids today are fantastic.  They come in lots of different colours and are a lot lot smaller than they were years ago.  What has amazed me about Erin is how she has been looking forward to getting them.  No embarrassment, she has been telling everyone about how excited she is and can’t wait to see them.  Erin picked pink and glittery  (she’s very girly), and when we saw them today,  I was still a bit sad that she did have to wear them, but that all vanished when they were fitted.  The look she gave me and her dad, a huge smile.  I asked her could she hear better and smiling she said yes straight away.  She told us the noises she could hear were clearer. I can’t tell you how fab it was when she said “I can hear”…… brilliant.  A game we would regular play, in which we would cover our mouths and say words she could hear what we were saying where as before she couldn’t hear anything, or would guess at words.

She woke today excited to go to school to show her friends.  She has been assigned a support worker who will go into school and help her adapt to them.  She is also going to do a talk to the rest of the children about hearing aids, explaining what they do and what they are used for.  Erins teacher also has hearing aids so this morning after having spoke to Mrs T she couldn’t wait for her school day to start.

20140311-102047.jpg

20140311-102156.jpg

You Are My Sunshine

20140202-184647.jpg

I’m linking up with Autism Mumma on Twitter, for “You are My Sunshine” something that has happened in our week and has made us smile.

I’ve had a really rubbish week this week, I couldn’t wait for it to be over. So when my daughter Erin, came to me showing a picture and writing she had done…… I was made up. All it was saying was that she was going to bake me a cake, but it made my day.

As the saying goes “The Simple Things In Life”

20140202-184315.jpg

Patient Advice and Liason Services (PALS)

20140119-233405.jpg

The Patient Advice and Liaison Service (PALS) offers confidential advice, support and information on health-related matters. They provide a point of contact for patients, their families and their carers. If you are not happy with the service/advice/care you have been given by your GP, Dentist, Hopsital or Pharmicist

PALS is an independent service that has been set up to support patients who are not happy with the way their care has been carried out. I was never aware of this service until I was advised by a health professional to make a complaint about the way my daughters operation procedure was being carried out. Lauren has Cerebral Palsy and we were told 18 month ago that she was put on the “emergency” surgery list to have her operation carried out. With the conversation we had with her surgeon we were made to think she would be called in at any moment (within weeks). We put our summer holidays on hold and not to mention in that time was preparing Lauren for the procedure she was to have.
Within the 18 months, Laurens mobility had definitely got worse and finally came to a point where she was using her wheelchair a lot more. I was advised to make a complaint to PALS. PALS investigate what has happened in each patients case and act on your behalf .
To cut a long story short I lodged my complaint and within 6 weeks Lauren had been operated on and sent home to recover.
PALS are situated in most hospitals in Great Britain and the service we have had was fabulous. I would highly recommend to use this service if you are not happy with how your care has been managed. Each health authority/trusts are different so I am not saying that you wil definately get results within weeks but these services are there for you and your family so do access them

How Can PALS Help You?
PALS provides help in many ways. For example, it can:

Help you with health-related questions that you are concerned about
Help resolve concerns or problems when you’re using the NHS

PALS offices are generally situated within Hospitals but you can also look for your nearest PALS Office on the NHS Website

You can find your nearest PALS office on the NHS Choices website (click link)
http://www.nhs.uk/Service-Search/patient-advice-and-liaison-services-(pals)/LocationSearch/363

You can also ask your GP surgery, hospital or phone NHS 111 for details of your nearest PALS.

Laurens Operation : Update

Sunday 12th January

Its now 6 weeks since Lauren had her operation, she makes me so proud every day.

The 1st few days after her op were just torture for her. She was in so much pain and basically had to get the right balance with regards to her medicine. 20140112-223828.jpg
She was medicated with Morphine, Paracetomol and Ibuprofen and even though it did do the trick and relieve the pain, we had to start to wean her off the Morphine as there is risk of addicition (Yes even in a small child)
Having such a big operation on her legs, you would think she would have been resting…….but no. She had a programme from the Physio team and she had to walk everyday as much as she could. It was awful watching her as she was in pain but she had to keep mobile or else there would have been no point in her having the operation. She had to keep mobile so her joints wouldnt seize up.
20140112-224015.jpg
She has amazed me with her courage and strength. Her legs were cast upto her knees so it was very heavy on her little body She never moaned about doing her Physio, she happily got on with it and tried to walk as much as she could. By the end of the 2nd week she was trying to get up the stairs, there was just no stopping her. She loved all the visitors that came to see her and all the extra treats she received.
20140112-224040.jpg
Last week she went back to the clinic. We were under the impression that she was having the casts removed, so were very disappointed when they told us she needed to keep them on. She got cast with new and lighter casts. Walking the way you and I would walk is not a natural position for people with Cerebral Palsy, and you can tell even though shes trying and keeps going… she is struggling.
20140112-224200.jpg
We always questioned were we doing the right thing going ahead with this operation. Before the operation, Laurens legs were virtually twisted in and as she walked she would be tripping over. Watching that happen 4,5,6,7 times a day is just awful. You can tell by her face she just wants to be like her big sister , be able to run, dance, skip and hop the way she does.. It’s for that reason why we went ahead. So that when Lauren is in her teenage years going into adult hood she is as mobile as she can be. Operations like the one she are more successful the younger the person is. Her surgeon has told us that once a child with Cerebral Palsy starts the route of operations it is usually a constant continuation implying that more surgery will be needed. Lauren was born 3lb when she was a baby, I know if she can survive the life threatening months says had when she was born……. She will get through this.
20140112-223934.jpg

Grief…….Will it Ever Heal

It’s 10 years since my life changed forever….I was pregnant with my 1st child and got the news my mum was dying. She had breast cancer, successfully won but went onto develop into a tumour in her brain. 7 month into my pregnancy she passed away, she was 42.

wpid-1143592184014-2.jpg

Having just been to the cemetry to lay flowers, the only way we can be together, makes me so upset. We should be going out for lunches, phoning each other, rowing over silly things and mine and my sisters children should be staying over at their nannnas. Instead questions such as “Why is nanna in heaven?” “Where is your mum” Innocent questions that the children ask as they do know they have a nanna in heaven, but questions that break my heart. I still cry most days over her as she was mum/dad/friend all in one.

IMG_2280
Its 10 years, shouldnt you be over it ?
Until a person lives the experience of grief, somebody close to you that has died, in my opinion I dont think you will ever get over it. People have suggested councilling, and I did try it whilst pregnant (which was the wrong time) but throughout them sessions I was coming home completely devastated, even worse than when I had walked into the session. I would love to be able to talk of my mum and not feel so sad and upset, I cant. I just miss her so much
Am I Bitter?

In a way I suppose I am. My mum should be here watching me and my sister have got married, watching her son who is now 18 Graduate from College, be able to watch her grandchildren at school plays, and for her …for her life to have carried on being the wonderful person she was. As the saying goes “Gone Too Soon”

2_quotes_about_losing_someone_you_love_to_cancer

Things Happen For A Reason?
I truly believe this saying, and if this would have been said to me 10 years ago, you would have got a very negative reply from me. My family and I since her death have been threw more traumatic and life changing circumstances that some families would never encounter. The only reassurance I get from her death is she has made me and my sister the mums/people we are today. With the kids diagnosis of FACS me and my husband have had to literally do everything on our own. I know if she would have been here, the kiddies would always have been at nannas ::)) Something we have never done. I also know after 10 years if I can semi get through (and still be here) the hardest period of my life, I can get through and achieve anything. She has made Kerrie, Kieran (my brother & sister) and myself strong people with a different view of life.
wpid-c18d99b464b34ce2a5e932f97c84f29e-4.jpg

Do you ever get over grief?

My opinion is no….. you learn to live with it. Im finding the older Im getting and especially since Ive had the kids its been getting harder. Talking of my mum to the children, reliving memories can be so funny but then you get the innocent questions that are so hard to answer. My husband Joe once said “Your not the Emma I met” and hand on heart I never will be. Apart from the kids, the biggest and most influential person was taken so young and so soon and it has changed me as a person. It just doesnt seem fair, their are such wicked and evil people out there who go on to live for years and years, yet it seems the best go too soon.

309230_504044896296364_498467184_n

If you are reading this blog and someone close to you has died recently, all I can say is take each day, day by day. Some days will be worse than others. You wont want to get out of bed, you may spend all day in tears and in my case feel….”Whats the point in carrying on” Threw my experience councilling or alternative therapies never worked for me but may help you so do try them. Grief affects everyone differently in so many ways but deep down the only person that can help is yourself.

Samaritans : http://www.samaritans.org/how-we-can-help-you

My Newspaper Feature – FACS SYNDROME

wpid-c8ff39658c5d61c97318af73b7d52243-3.jpg

Knowing and living with the fact that a prescription drug described by my GP, has affected the health
of my 5 children is something I will always have to accept and live with.

The Government seem to focus on the dangers of smoking, alcohol and recreational drugs in
pregnancy. What about prescription drugs? Prescription drugs are not a choice for ladies in
pregnancy, they are prescribed for a reason whatever it maybe. Its all well and good focusing on
smmoking, alcohol and recreational drugs, awareness wise it is a good thing, however they are a
choice. A conscious choice the lady has taken upon herself, prescribed drugs are not.

I was prescribed the drug Epilim aged 12 after being diagnosed with Epilepsy. For people with
Epilepsy, Depression, Bipolar, Migraine, Pain Relief etc Epilim is one of the best drugs to control
these conditions. However the effect is has on the unborn baby is a different matter. A medicinal
drug I was prescribed and at no point throughout my pregnancies was I warned of the dangers of
what Epilim could do. An action in todays era is shocking. This is a position ladies up and down the
country are facing and have done since Epilim was introduced onto the market in 1973.

Back in 2005 the MMr scandal caused huge controversy as it was THOUGHT that having the MMR
injection to babies MAY cause Autism. Last week a medical journal was published categorically
stating that if a baby is exposed to Epilim during pregnancy it will cause “Neurodevelpomental
Disorders”. Figures from our medical team that 48,000 children have been exposed to Epilim and
40% of those children will have both physical and cognitive long term conditions. This will result in
the child then being diagnosed with FACS Syndrome, and other conditions associated with it.a

Use of the drug?

With regards to my care during my pregnancys about my Epilepsy, questions would be asked as to
how I was with my epilepsy? Was I having seizures? However at no point throughout consultations
was I advised about the affect Epilim could do. This would be discussed with midwife, anti natel
consultant and the advice given back was always to continue with the dose of Epilim and to increase
my dosage of Folic Acid. This was advice given by fully qualified GPs, Midwives and Consultants who
have studied all areas of their field….who am I to question advice given. I had full trust in them,
after all they are the professionals.

How did I feel when I realised it was Epilim??

Call it a mothers intuition, the older the children were getting I always knew deep down something
wasnt right. Comments were always made as to their faces…. there eyes looked chinese or there
cute button nose, something that really annoyed me. This I know now is a symptom of FACS – Facial
Dysmorphic Feature. Developmentally they were always late in reaching milestones particularly
when it came to speech. During this time I had been diagnosed with depression and whenever I
would bring up the fact something didnt seem right, it was a case of “Emma you have depression,
theres nothing wrong” Making me feel as though I was a neurotic mum imagining things. Constant
crying all day wih the babies, taking them too hospital to see why they were crying so much….”Its
just Colic” Raising my concerns with health visitors, the babies getting frustrated and banging there
heads off the floor in Tantrums “Its the terrible two’s” Constantly getting brushed off. Finding out
it was actually the Epilim, was a mixture of both relief – I knew I wasnt going mad or imagining it but
complete devastation knowing I had taken the medication and it had caused these difficulties with
my children.

Awareness

Awareness within the medical world needs to be highlighted more. Taking the children to
appointments to find that most clinicians are not actually aware of FACS SYNDROME is still to this
day very annoying. On every appointment with the children we would always bring a very basic
booklet for the Dr to look at explaining what this condition was. It was like Groundhog day on every
appointment. When a Dr is asking you the parent what the medical condition is, frustration is not
the word. If Drs were not aware of this, would ladies on this drug be?? With that I decided to use
the social network site Twitter to try and raise awareness and to see if any other parents were facing
the same thing. I then decided to talk more about it, and formed my blog, just talking about the
children, posting pictures and my thoughts Amazed by the response I had and finding that still to
this day ladies are not aware of the effects Epilim is having on their babies, a very scarey thought.

Each year the drug company who make Epilim, profit continuously. In 2011 they made 388 MILLION
euros by this one drug. They are totally aware of the effects Epilim has on babies as they have paid
for various studies to be carried out. I fully understand that they are a business and it all comes
down to money but how can they seriously allow this drug to affect babies in such a devastating
way. Under the FACS Syndrome umberella approximately 5000 babies are born each year. Why
should it be the taxpayer paying for the care of these children it should be the drug company. As a
trust our next step is to carry on raising awareness within Government. Our EDM (Early Day Motion)
has just been accepted so this will back up and strengthen our case to hopefully get the Public
Enquiry that is needed, to stop this continuous rise in affected babies.

Make It Count

Make It Count

TWITTER : Emma4facs

WEBSITE: www.facsa.org.uk

The Emotional Part Of Being A Mummy

Erin is 5. She has always been loud, bubbly, cheeky…..a fab little girl. We never saw the signs of her having trouble with her hearing. She never complained of her ears being sore, she  would never be picking or prodding them. She would often ask questions again but Erin being the cheeky little girl she is, we presumed she was messing about.  Having been told this week she is practically deaf has really come as a devastating blow.  I remember when we were told Lauren had Cerebral Palsy, I was shell shocked, it feels the same this time round.  Within the space of a couple of months she has gone from being vibrant and happy to withdrawn, teary and frustrated. “Mum, my ears won’t let me hear”   How do you answer such a question?? The Truth is at the time I couldn’t.  Even though we have been told she will need hearing aids, and technology is fabulous today, it still doesn’t take away the fact that my little girl has hearing damage and will affect her all her life. With all the kids having different health needs with FACSSYNDROME, you may think we are used to different diagnosis and it should get easier, but it doesn’t. If anything it’s getting harder. At the moment we are waiting to be seen by audiologist to have her fitted for her aids, so in the meantime, we are having to talk louder and directly to her face. This has also impacted on her pronouncing words. As she can hardly hear, some of the words she’s hearing she is saying wrong ie Lauren…. she says “Rauren” . Using sign language is helpful. I’ve never done this course before, but for simple things like “cup” “food” “tired” it is helping slightly, so it will be looking like maybe sign language is the way forward too.
image

image

Yesterday I was at the hospital with Lauren, and just the same as last week, yet again I’m feeling devastated. We were told that the Botox Lauren has to help her Cerebral Palsy, is no longer working and she will definitely need continuous operation. The Dr explained the procedure that Lauren will have and it doesn’t sound great. She will be in a wheelchair for between 6-8 week’s depending on how she recovers. I wasn’t best pleased he was explaining it all in front of her as she was then crying, saying “I don’t want to have it done mum, Why me” Another question ….How do you answer?? We were both just sat hugging each other crying. Promises of magazines, treats, having visitors while she’s in hospital took away the upset for a while, but since being home, she’s asking “Do I have to have it done??” I would love to be able to tell Lauren she doesn’t have to have it and everything will be alright. Me and Joe (dad) both reassure her that things will be ok but deep down,we can’t say if it will or won’t. We know she has to have the operation. It will never cure her Cerebral Palsy but it’s the in between, the tears, tantrums, and the constant pains she is in, questions that as parents are very hard to handle.

image
image

On the other hand as bad as things feel at the minute, everything is happening for a reason. Whether it’s to make my children stronger for the future,or to help other children and families diagnosed with FACS the fact it may have helped one family is good. They will always have FACS SYNDROME and the disabilities/ illness that come associated with that, at least I have 5 beautiful children that I wouldn’t change for the world.