Special Needs Parenting: What a Difference a Year Makes!

In September last year I took Jenson to school for the first time.

My little baby boy was only three years old – was I doing the right thing?

Would he thrive, or be overwhelmed?

Was I right to abandon mainstream nursery for this specialised early years provision, at such a young age?

I cried that day when I dropped him off.

Well, he cried later that day when I picked him up.

He didn’t want to leave; he was having far too much fun.

We haven’t looked back since.

It’s impossible to quantify or put into words (or a school report) how much Jenson has learned in these past three terms.

To paraphrase the school’s standpoint on assessment: it is preferable to assess students by what the school values the most, not what is easiest to measure.

Two plus two might still give you “cat” in Jenson’s world, but ask him to join in with a sing-and-sign or sequence the letters in his name and he is showing impressive advances.

Therein lies the conundrum.

How can we reliably evaluate a child’s progress in confidence, patience, independence and attention?

Jenson’s teachers have shown me that in fact, these things are wholeheartedly valued, observed, appraised and documented at every step of the way, and our children are rewarded and recognised throughout their learning journey.

Gone are the days when I fretted over whether Jenson would acquire any academic skills or qualifications, whether he would show prowess in the prose of Shakespeare or Chaucer, solve a quadratic equation or apply Newton’s second law of physics.

The conventional definition of ‘achievement’ has been overturned and we have a whole new realm of measurements by which to define Jenson’s progress.

Despite coming from family that holds academia in high regard this was a surprisingly easy u-turn for me to take.

It has been refreshingly pleasant to be able to abandon the stark, one-size-fits-all assessment framework of the mainstream world, and embark on a learning platform uniquely designed with Jenson in mind, putting enjoyment and positivity at the centre of everything he does.

He is a different child to that coy, bottom-shuffling little three year old I dropped off at school last September.

He glows with energy, sparkles with excitement and dives head-first into new challenges.

In three school terms he has progressed from bottom-shuffling to independent walking, with the help of specialist equipment, physiotherapy, orthotics and a whole heap of determination, from himself and the team around him.

There were a few tears of joy that day when I came into the classroom to see five of Jenson’s teaching staff standing in a circle around him, cheering him forward, as he took his first steps.

Who would have ever predicted that, one year on, Jenson’s repertoire of vocabulary would be so vast, and he would be able to answer questions and communicate his wants and needs?!

Or that for a child that wouldn’t eat or drink until he was two and a half, he would be willingly sitting with his friends at lunchtime, eating adult size portions of stroganoff?!

Amazingly he seems to know the days of the week:

Monday morning he greets us bright and early with, ‘oool’, (school) and, ‘erk’, (daddy going to work).

I’m sure he knows when it’s a Wednesday as he says, ‘imming’, (swimming).

This year Jenson has received a plethora of awards and certificates, including four swimming badges, student of the week on five occasions, awards for art and technology, music, speech and language, PE and physiotherapy.

I have attended the Friday lower school assemblies and the end of term assemblies to watch the award presentations and I have shed a little tear for each and every one.

At the most recent presentations, Jenson has even walked up to Mr Brown to accept his certificate, before taking a lap of honour, hugging each of his Explorers staff, and reluctantly sitting back down!

It has been a privilege to meet Jenson’s class buddies each of whom I have become very fond of.

I’m really looking forward to watching William, Barney, Elisa, Leanne and Delilah grow and learn along with Jenson, in the many years to come.

I’m also so grateful for the friendships I have made with parents and the support I have received from the staff, on a personal and professional level.

The support network and feeling of family spirit is omnipresent throughout the school.

I now also meet up with mums outside of the school which gives us all a great opportunity to let off steam, chat without interruption, and laugh and relax together.

My family has also been actively involved in raising money towards the school’s expedition to NASA, Florida, for some of the older students to achieve the Gold Duke of Edinburgh award.

There have been enough memorable occasions this year that I could write a book; a blog just isn’t sufficient.

Along with an open invitation to attend the weekly lower school assemblies, parents are encouraged to attend the end of term assemblies and a host of other social events throughout the year.

Events this year that are etched in my memory are the Harvest Festival, Christmas Carol Service, Victoria Grand Prix, sensory bubble workshop, performance by the Bournemouth Symphony Orchestra, and Vintage Car Show.

The amount of extracurricular and off-curriculum activities that are provided leave me at a loss to know where the staff find the time!

Whether it be trips out, visits from theatre companies, national sports week, Strictly Come Shakespeare, or creative arts week (the list goes on), the dedication, inspiration and sheer hard work from staff is awe-inspiring.

If I could sum up with the three most inspiring things about Victoria, it would be the warmth, energy and unity that you feel every time you step through the front doors, the equity with which the students are treated across the school, and the unequivocal passion and dedication imparted by every member of staff.

The year has been a whirlwind of fun, learning, friendship and discovery. And that goes for Jenson and myself!

Special Needs Parenting: Acceptance is Key

Hearing of a medical condition or disability is usually a great shock, and goes against what we were expecting.

I often laugh at my pre-Mummy naivety, a time when I thought a shelf full of maternity books and expensive pregnancy vitamins would ensure a healthy, typically developing child.

A time when I didn’t have the sense to wait and see what our babies’ talents, tastes and needs would be, instead I tried to imagine their lives mapped out ahead of them even before they’d taken their first breath.

I suppose we all do it; ponder which school and clubs they’ll attend, even think ahead to fantasy weddings.

We imagine they’ll take after one or other parent, and only the wise simply wait to meet that new person and love them for exactly who they are.

I wasn’t one of the wise, and when Down’s syndrome was identified a few hours after Natty was born, I went into deep physical shock, imagined our lives were over and questioned whether I even had the skills to be her Mum.

As the months passed and she melted our hearts, I think a kind of denial took over.

I became obsessed with researching therapies, early intervention and support, maybe in the hope of making the extra chromosome fade, or perhaps trying to see into our futures.

It was when Natty was about three years old that I realised she was turning into a ‘project’, the target of way too many SALT and physio activities.

And although I wish I could turn back the clock and see her simply as our beautiful daughter rather than her condition in those days, I am grateful that I took that moment in time to give myself a good talking-to.

I had to love Natty unconditionally and get to know every aspect of her, and Trisomy 21 was just one.

I had to realise that although learning to be as independent as possible was a priority, success at school was never going to be her be all and end all. It was more important that she felt fulfilled and secure, enjoyed the company of friends, made choices about what food and music she liked.

Together we have all learnt to appreciate each girl for their uniqueness.

Ways to let you child know that they are valued:

– Have fun together as a family, sing, get messy and be silly. It shouldn’t all be serious, despite inevitable worries and times of stress.

– Teach your child life skills as early as you can. Having even simple household chores such as sorting laundry or feeding a pet makes them feel useful and valued and helps towards their future independence.

– Show your child that they are loved exactly as they are and tell them often. Write a little note or draw them a picture.

– Set achievable realistic goals that will encourage them to develop, and boost their self-esteem.

– Celebrate successes, however small, and praise your child for each new step. Tell everyone how proud of them you are.

– Finding an online forum or another parent who has a child with a similar condition makes you realise that you are not alone, and you can swap useful tips.

– Try not to let your child hear you being negative about service providers, medical teams or financial worries. By saving such niggles for when your child is asleep or an online chat you will prevent them from feeling like an inconvenience or worse still, a burden.

– Learn what your child’s individual differences are. How do they learn best, what triggers their anxieties and what kind of rewards do they enjoy most? Once you understand what makes them tick you can make minor adjustments to the way you do things in order to work with them.

– Try not to wrap your child in cotton wool. It’s easier said than done, and as a natural worrier I have to work hard at letting Natty take small calculated risks, but it’s the only way to learn about the world and feel included.

I will never be able to eliminate all the struggles we face for Natty throughout her life, but coming to terms with a chromosome is no longer one of them.

In fact she absolutely wouldn’t be ‘our Natty’ without it.

ADHD Awareness

Children with ADHD may be hyperactive and unable to control their impulses, or they may have trouble paying attention.

It is a disorder in which the brain’s neurotransmitter chemicals, noradrenalin and dopamine do not work properly.

It is a disorder that, without proper identification, treatment and management, can have serious and long lasting consequences and/or complications for an individual.

It is important to note that ADHD is a very treatable condition. If diagnosed and properly treated, people with ADHD can reach their potential and lead happy, successful lives.

I don’t like writing about ADHD, mainly because of all the backlash that comes with ADHD.

I don’t like talking about ADHD either, for the same reasons.

I always and I mean always have to debate ADHD as soon as it comes out of my mouth.

It’s ADHD awareness month.

Let me share with you what ADHD means to me, my family and, most importantly, my young son.

ADHD takes over when his eyes won’t shut and let him sleep,

ADHD takes over when his brain refuses to quieten,

ADHD takes over when an idea gets stuck on a loop,

ADHD takes over when this idea has to become a reality,

ADHD encourages those little ideas where safety isn’t a priority,

ADHD encourages one to speak regardless of interrupting a private conversation,

ADHD encourages those little feet to run, those hands to fidget too,

ADHD encourages those little white lies which we can spot on top of that small nose.

ADHD brings out the brightness, loudness and energy,

ADHD brings out the spontaneity, we all wish we had,

ADHD brings out forgiveness, the charm and honesty (often brutal!) too,

ADHD brings out the adventurer, we all wish we could be.

ADHD makes up a part of my son; that’s a statement not a question to be debated.

ADHD is very real to our family.

ADHD can cause arguments, destructive behaviour and often unreasonable reasoning.

ADHD is indeed very real when our child can’t concentrate on what the teacher is saying because they have used long sentences or he has been sitting too long, or there’s a light flickering outside…

ADHD isn’t equal to bold, spoiled or bad parenting.

ADHD is real.

ADHD makes up a part of my wonderful, smart, funny, goofball son; that’s a statement not a question which is open to debate.

Baby Loss Awareness: Our Darling Daughter

You have one left

Don’t despair

Mammy and daddy

A little boy is still in there


It’s easy to imagine

How she’d fit in,

Brothers who adore,

No doubt a daddy’s girl.


A life spent imagining,

Her face, smile, eyes …

Visions of one so small

Growing in life’s stages


Birthdays, Christmas,

Family celebrations,

There’s always,

Someone missing.


She’s never far

She’s always here,

Despite the years,

It’s still hard to share


Guilt invades

Why didn’t you grow?

Was it my fault

I’ll truly never know


There’s no preparing,

No understanding,

If’s, but, and whys

Are all left unanswered.


A life unlived

Surrounded with hushes

Let’s not speak

Of the angel not here


The unseen tears,

Broken hearts

No time can heal

Although it tries.


Never held,

Never physically here,

Always with us,

My darling dear.


Sky x

Waiting Rooms and Autism

It’s the in-between bit that comes in the centre of ‘first and then’ and in their minds, nothing should come in the middle. First doctor, then home…why have this great big long wait in the middle?

Yet we spend hours of our life waiting. As adults we wait at traffic lights, wait for phone calls, wait to be seen at the doctors and the worst one we all dread is waiting on a call centre answering when you have to listen to music over and over again!

Unfortunately, my children also need to wait. We spent hours some weeks waiting in waiting rooms to be seen by eye specialists, paediatricians, hospital specialists and nurses. My children hate it.

It always amazes me how so few clinics have anything for children to do during that waiting stage.

Over the years I have learnt to come prepared and if I have to collect my children from school for an appointment I have a bag ready with snacks, drinks, nappies, wipes, and most of all their iPad. One thing I can always predict is that neither of my children will just sit on a seat quietly and wait doing nothing until their name is called.

Sometimes other people look at me when I pull out an iPad for my children. Some perhaps think I am spoiling them or encouraging them to be antisocial.

Other children often look on in jealousy. I never say anything because I don’t see the need to single my children out by saying publicly that they have autism.

It is no-one else’s business.

I have tried without the technology. I have tried without the snacks too. My son (who is non-verbal and a huge sensory seeker) played with the doors and refused to allow anyone into the waiting area or out of it.

He climbed over seats, he flushed toilets and he pulled out toilet paper. He screamed, he ran away and he kicked and punched me.

I don’t need that. No-one in the waiting room needs that. My daughter just cries, curls up into a ball and withdraws so badly it takes days to even hear her talk again. Her anxiety overtakes everything and I have had to leave before being seen on more than one occasion. I do what needs to be done to avoid that.

Waiting rooms and autism are an awful combination. The fact is they are often small, have a distinct smell of clinics, there is nothing for children to do, and there is the transition into the room and then into another room again.

You can not predict how many will be there, how noisy it will be or prepare them for how long the waiting will last. To my kids, they are like holding cells full of strangers with no time limit to how long they will have to be there.

They get so stressed and anxious about them so I do everything I can to help.

So I am that mum who has children in the waiting area who sit playing their iPad and I don’t care.

If we have to be there then we make it through in whatever way we can! After all how many adults happily use the time on their phones, so what is different?

The Time a Stranger Gave me Money because my Child is Disabled

It’s a story worth sharing and one thing that is interesting about it is the diverse range of responses the story has received from different people I have told it to.

You’ll see why when you read on.

We were out at a shopping mill. Yes a mill! Where I live in Stockport there are a lot of old Victorian age mills. They’re mainly either flats or in our case a shopping centre selling all sorts of interesting things.

Amy had taken one of her rare power naps and awoke a little disorientated and confused.

Whenever this happens I reassure her by singing her favourite songs to her and eventually the tired confusion changes to delight and cheers. It’s one of her quirks that I love the most.

I had noted that the whole time I was doing this that an elderly (and presumably retired) couple had been watching.

I’m pretty used to people watching, or staring and sometimes even pointing. I don’t really mind anymore, they’re usually marvelling at how cute she is anyway.

We were in the queue now waiting to pay. I was buying a measuring jug for Amy’s’ feeds, I’m sure a lot of tube feed parents will empathise with my hatred of numbers washing off things.

The old man approached me. He said “Why is she like that?”

The phrasing of the question immediately angered me and my response was “sorry… like what?” (I play ignorant when on the defensive)

He repeated himself, this time pointing her up and down, “Why is she… like that…what’s wrong with her?”

I sort of sighed to myself but then took a deep breath. After all, this is a chance to educate and raise awareness. “Oh, she has cerebral palsy” I replied, a bit reluctantly.

The way I said it undermined the severity of her condition, I said it nonchalantly as if to imply HE was the “different” one for seeing her as different.

“Do you do everything for her?” He asked.

Puzzled and bewildered I replied “Well yes! She’s my daughter, of course I do everything for her!”

Sometimes I am irked that people are in awe of what carers do – we do what we do because we have to.

We didn’t choose this life, but our families are everything… we are parents and we will go above and beyond any call of duty to give our children an amazing life.

I could feel myself getting a bit red and annoyed, please don’t see my daughter is a burden. Yes it is exhausting, but she didn’t choose this either. I would do anything for her.

I looked into the man’s eyes. (Eye contact isn’t always my forte) I noticed something… the man was crying.

“Why on earth is he crying?” I thought.

He extended his hand out to me, I look down. He was handing a £20 note over to me.

“Oh! No no, I couldn’t possibly… thank you though… that’s a kind gesture…”

The man wouldn’t take no for an answer.

“It just isn’t fair” he kept saying. “It just isn’t fair”… He was visibly shaking his head and crying.

“It’s okay” I said. “She’s a very happy little girl, she has lots of friends and family, she has a great life”.

“Yes but what about when she’s 9 or 10 and she sees all of the other children around her and she realises she can’t do that” He began to cry again.

I didn’t really know what to say to that. I assured him how lucky she is and how she wasn’t expected to make it through the night when she was born and not to feel sorry for her.

Right now, yes she has a lot of challenges and frustrations, but we are working on it. When I look at her a year ago, she has transformed.

She is becoming a very bright little girl and is very determined to get what she wants out of life.

We parted ways, I paid for the jug with my newly acquired money. His wife hadn’t really interacted with us but gave a smile and a polite wave. They were gone.

For a moment my mum and I stood there silent. Not really sure how to process what had just happened.

I thought – why say that about her peers and being different? No mother or father wants to think of their child feeling heartache over being disabled. How dare he say that?

These are the same negative thoughts that pop up in my head constantly when we visit parks, shops, all kinds of places where able bodied peers congregate. But we push that away.

It isn’t productive. Negative thoughts breed negative thoughts. Being upset and dwelling over it all won’t make it any easier, that isn’t what Amy needs.

You have to acknowledge the thought, and throw it away.

Sometimes it upsets me that a complete stranger can just come into our world and force me to relive a traumatic birth, or that we aren’t like everyone else.

At the same time I couldn’t help but reflect on this lovely mans’ generosity. I have noticed it is often the older population that have trouble processing the prospect of a severely disabled child or person.

Perhaps they didn’t see many when they grew up due to the shocking way in which a lot of disabled people were cared for, or maybe because medical technology has advanced so much that they are saving the lives of more children like Amy and therefore there are a lot more of us around.

Perhaps also the stigma is diminishing… more families like ours are accessing the community now how we should. Who knows?

I have told people of this encounter and had either “WOW. He sounds a little ignorant” or I have had “oh wow, how incredibly kind, what a touching story”.

I am mixed. I thought the man was so lovely. He meant no harm. Obviously it pained him to see Amy in his eyes “struggling” and wanted to do something to help.

I will never forget his kindness. I hope that what he took away from the experience was what an amazing little girl I have and how lucky we all are to be alive.

What do you think?

Special Needs Families: He is 1 in 1000

My little boy is part of that 0.4. Spina bifida is a main diagnosis that is followed by what type of spina bifida that person may have.

There are three types one can be diagnosed with, spina bifida occulta, meningocele, and myelomeningocele.

Although it is considered the worst of the three, the most common that follows a spina bifida diagnosis, is myelomeningocele.

This is the one my son was diagnosed with, at just 20 weeks gestation.

It can be seen through ultrasound, if the tech or doctor is viewing the spine or one of the most common markers; the brain. That isn’t to say that it can be missed in an ultrasound, but the brain would show what is known as the banana or lemon marker.

But before we get into this, let us backtrack to what spina bifida (we will focus on myelomeningocele) is.

This happens when the spine fails to completely form together resulting in a sac that protrudes from the opening which contains part of the spinal cord and nerves. The fetus faces severe nerve damage as the sac is no longer protected by bone structure and is open to physical damage and damage from the amniotic fluid.

The sac can protrude from anywhere on the spine, but the most common are found at the bottom near the S and T vertebra.

Because the spina column is now open, cerebrospinal fluid is lost into the amniotic fluid and can actually accumulate with failure to properly drain from the brain. This is called hydrocephalus. This is a big marker through ultrasound because it is shown as water on the brain.

If the hydrocephalus is severe, it can damage the brain and even halt further growth.

The banana or lemon marker I mentioned above, is a common marker, because the spinal column has lost most of the cerebrospinal fluid that regularly allows our spine to freely move up and down without damaging it.

This results it the hind brain, cerebellum, having a pulling effect on it, literally pulling it into the first spinal C vertebrae.

Let’s say you have a roll of play dough in the shape of an oval, and you pull on only the middle section. It will soon resemble the shape of a banana or dumbbell even.

This can lead to the diagnosis of Chiari malformation.

All of which are common “hand-in-hand” diagnosis with spina bifida myelomeningocele. My son’s spinal opening occurs in the lower region of the spina and because of the damage it faced during pregnancy, his nerves weakened and even experienced paralysis in his lower limbs.

Because many of our processed foods now contain folic acid, which is said to lower the risks of a neural tube defect, spina bifida is considered rare.

Unfortunately there is so much more to research, regarding folic acid deficiencies or underlining gene mutations such as MTHFR that can hinder these processed foods useless to guarding our bodies against such diagnosis.

My family and I have come all too familiar with what spina bifida is, according to the textbooks and articles, and what it actually is for our family.

A precious little boy, who is 1 in 1000.

Why has Society Got Such an Issue with Parents Being Carers to Their Own Children?

‘Oh wow. Where do you work?’

‘From home. I care for my disabled son.’

‘Oh, you mean, you are a stay at home mum?’

What is the problem with people understanding the fact that I can be a mum and a carer for my own son?

Even within the community I am part of (families with one or more children with a disability) some still don’t understand. They see what I do as what every mum would do and to an extent they are right.

The issue is my son’s needs are so great at present that I am unable to work. He has complex needs and is therefore entitled to a benefit for disabled people.

Part of that means someone is able to claim a separate benefit to care for him. Why can’t that be me since it is me who is doing that job?

If I were to devote the same hours to caring for my elderly mum, or for my next door neighbour or even a friend I would be seen as noble and brave and most people would be urging me to claim the carers benefit to cover my expenses of taking them to hospital or making them meals or even as token payment for my hours of care.

The issue only seems to be when I mention that the person I care for is in fact my own child.

You see people are able to see that caring for someone else necessitates a clear distinction of roles.

There is an expectation of a carer to put so many hours in, put the other persons needs first, make sure the person cared for is getting the best services possible and facilitating them to attend places they need to go to. When you give birth to a child there is an assumption that a parent will do all of that for a child regardless.

But there is also an assumption that at some point the child will became more and more independent and the caring side of parenting (the formal looking after side rather than the emotional caring which lasts a lifetime) will gradually fade.

There was a time in my son’s life when I realised that for him this was never going to be the case.

It was not a day or even a week but a gradual realisation that the child I gave birth to was not meeting milestones and was never going to live independently in any way.

At 8 he can not speak. He has no concept of using the bathroom on his own. He can not open a packet of crisps nor use a knife and fork. He can not dress himself.

His care needs are 24 hours a day 7 days a week. He started receiving his disability benefits at just two years old.

I never started claiming anything as his carer until many years later. When he was still of pre school  age, even though he never became ambient until after 3 and he was uncommunicative with very limited understanding, I still viewed myself as his parent much more than any sort of carer.

When he began school I looked at returning to work either part time or full time. That was the beginning of me realising I was not in any way a traditional parent.

The school would call regularly just as his nursery had done previously. His medical appointments totted up quicker than I could keep up. His diagnoses accumulated continually.

His development, on the other hand, stalled. Sleep was just a few hours a night while screaming could last much of the day. I sat in so many hospital waiting rooms dreading what doctors would tell me next.

I googled what a carer was:

A carer is anyone who cares, unpaid, for a friend or family member who due to illness, disability, a mental health problem or an addiction cannot cope without their support (Www.carers.org).

I googled what a, “parent” or, “parenting”, was:

Parenting or child rearing is the process of promoting and supporting the physical, emotional , social, and intellectual development of a child from infancy to adulthood. (Wikipedia)

I thought about my child. If parenting is supporting his development from infancy to adulthood I was definitely a parent.

But I looked at the roles of carer and realised my child has a life long disability. He wasn’t going to get better and at no point in the foreseeable future would he cope without my support.

I could not get a job because my commitment to him was too high. He could not access after school care and neither could a child minder look after him.

Family members could not look after him either as his physical care needs were too high. I finally realised I was his full time carer as well as being his mum.

He is 8 and very vulnerable. As his mum I am not going to let him down and I will always be there for him. I will move heaven and earth for him like any parent would.

Equally I am more than a parent too. I have to do intimate care that no parent should have to do with a pre pubescent boy.

I have to communicate to everyone on his behalf since he can not communicate on his own. That is not what a parent of a typically developing 8 year old would normally do.

I have to fight for his rights in education, in health and in services he is due because he is often taken advantage of and ignored.

Most 8 year old boys would kick up if someone was abusing them and soon speak up should they be in pain and get ignored. My son can’t.

I understand that my role is complex. I understand that many would say, ‘Well surely any mum of a disabled child would do that?’

I see you metaphorically scratching your head trying to figure out if it is right that a mother can be paid to care for her own son.

While you think about it I am wiping dinner from my son’s face. I am holding his hand while he walks, I am lifting him into his car seat and strapping him in.

I am watching him through the night as he is wide awake yet again. I am bathing him and changing his continence products.

I can’t wait for society to decide if I am caring: I am far too busy being my son’s carer.

There is no-one else stepping in to the role after all.

Whether society wants to accept it or not thousands of parents in Britain today are caring for their own children as well as parenting them.

I am just one of them.

Special Needs Families: Neuro, Urology and More

We started off August with a visit to urology. Oliver had surgery for his bladder and kidneys back in April for reflux issues.

So our appointment in August was the surgery follow up, just a tad bit late.

The appointment consisted of filling his bladder to see how it held up and at what volume would it try and empty itself, if at all.

They also look at the kidneys to see if, at this high volume does any of the urine flow back into the kidneys.

This is what we do not want happening, as it can scar the kidneys and ultimately lead to kidney failure.

Luckily, we showed no more sign of reflux and that although in tiny increments, Oliver is still able to functionally empty his bladder somewhat.

We do however still need to continue cathing him like we have been.

In September, we continued the follow up process with a trip to his neurosurgeon.

All of these appointments are out of town a few hours, and with three boys, it can get difficult. Luckily my husband is an amazing support system, helping out when he can!

For our neuro appointment, we definitely were behind in follow ups, so we had to get a full scan of his head and spine.

The doctors use these scans to check his spine to make sure there is no sign of tethered cord, and they also check his head and brain to make sure his shunt is working properly and his Chiari is not showing him any problems.

Chiari can present problems like difficulty breathing, choking, headaches, and more.

We scored another lucky appointment and everything checkout out clear for us. I sure am knocking on wood when I say that we have gotten lucky with Oliver.

Most people with VP shunts face failures or infection with the device in the first few years of placement, which requires surgery.

Oliver is three now and we’ve been blessed to have no issues as of yet.

Glancing into the future a little, October is showing another eventful month as we go back for his spina bifida clinic and more urology visits.

I tell ya, this boy sure does keep us on his toes!

We will always take a handful of good check-ups though, over anything straying from that.