After many trips to the neurologist, a failed attempt at eradicating the seizures with high doses of steroids we are back to trying to control the seizures.

Sawyer’s infantile spasms have grown into epilepsy.

He has very aggressive and prolonged seizures and our angel neurologist has left us in the hands of another really great neurologist.

Sawyer’s seizures now are so hard to detect unless you know what you are looking for.

He simply begins drooling, looks to the left and his right lip and thumb twitch.

The doctors and nurses rely on me to tell them if he is having a seizure which is stress beyond belief.

It all rests on my shoulders whether they administer more meds, give him more IVs or even intubate.

It’s scary but in the moment I remain calm and listen to my gut.

 I am happy to report that Sawyer is thriving more than we ever could have imagined.

He is incredibly smart and speaks with an eye gaze.

He remembers and understands everything and keeps us on our toes with his pranks.

He is working hard on walking. He rolls over both ways and spins himself around by kicking and spinning.

He can get himself all over the room if given enough time.

We do think he will be able to be potty trained at some point since he is very aware of when he is going.

We are feel so incredibly blessed that the nurse that day on the phone said that we should do an EEG just in case.

Infantile spasms can be devastating developmentally for children if they go on too long.

These seizures don’t look like the typical seizures and babies are so uncoordinated with heir movements at first that it is hard to detect but if your child is having repetitive movements, having the unprovoked “drop reflex” or something just doesn’t seem right.

It’s important you go and get an EEG.

Although these spasms are subtle they are an absolute emergency and need to be treated immediately.

Sawyer is a thriving little four year old boy and we don’t like to think of the outcome had we not caught these seizures.

Advocate for your child and ask questions.

As we entered the hospital I went straight to the front desk.

This was my first time at this hospital and little did I know that this would become a home away from home.

“I need to be admitted. My son’s doctor sent over an order.”

We waited for a nurse to come get us and were brought into a room.

At this point I was getting nervous and Sawyer could feel it.

Let me preface what happens next with this…..we have only had a few bad experiences with nurses in the hundreds we have encountered.

We were brought into our room and the nurses began asking me a flurry of questions. “What does he eat? What are his meds? What kind of bed should we get him? Does he need a cover for the bed?”

I answered as best I could as they repositioned him to begin putting on the EEG probes for the second time that day.

We were stressed we were hungry and we were emotional.

Sawyer was very upset about all of the poking and prodding he was encountering.

He also wasn’t getting adequate sleep due to the spasms so he was sleep deprived.

My poor little man was screaming his head off while they put on the EEG probes and held him down for an IV.

I don’t remember exactly what I said while he was screaming but she said to Sawyer. “Your poor mom.” I know he was being difficult but I also know he was scared and stressed and barely over a year.

It felt like a punch to the gut after all we had been through.

My reply was “Well he barely survived multiple infections so we are just lucky he is here.”

Fast forward 48 hours and he had medicine under control and his EEG was looking better.

We had a good dose for him and we were heading into discharge.

Our neurologist took us into a consulting room and brought up all the scans for us to look at.

She explained that children with Sawyer’s level of brain injury rarely develop past 6 months in age.

They don’t ever speak, walk, or use the bathroom on his own and will need life long care.

We were floored, we had no idea that this was his prognosis.

In the hospital the doctors didn’t seem to want to tell us.

They skirted around it and I understand why but our neurologist was still shocked we were not prepared for this.

The one thing that Ryan and I have always been good about is not giving up and remaining positive.

I told the doctor that if this was the case then we would love him no matter what.

She knew that but wanted to make sure we understood the level of care that Sawyer would need in the future.

We moved on to discharge with medicine in hand and very strict instructions on medicine and a scheduled follow up with our neurologist.

Where we are now will be in my next blog.

Did you know that infantile spasms only effects one out of a few thousand according to epilepsy.com?

I am spitting this fact out to you because Sawyer was one of those children.

We had no idea he was having seizures.

I decided to set up an appointment with neurology to get an idea of what we were facing with Sawyer’s brain injury.

It was something I advocated for because I am a planner and I wanted to know what to expect.

I remember calling to go over the questionnaire with our neurology nurse before we set up our appointment.

One of the questions was is he having some repetitive or jerking moments.

I remember saying “No, he seems totally fine.” I then added “He is doing this new thing where he is reaching over and over for something it’s super cute.” Thankfully the nurse said “Well given his history lets just set up an EEG to rule them out.”

Thank God for that nurse. I thought it was just another step.

I had no idea it would be life changing.

I remember going into the appointment and talking to my mom who was babysitting Sawyer’s twin sister at the time saying “I’m sure its no big deal, I will be home in a bit.”

Sawyer was very grumpy that day and it was stressful getting the probes on but once we got them on I grabbed my book to sit and read while holding him.

Forty five minutes later they came in and said they are stopping the test early.

I assumed that this meant he was fine and we would be going home.

I was brought into a patient room once Sawyer’s probes were all off and the doctor came in and sat down with all the paperwork.

“Your son is having Infantile Spasms.”

My stomach dropped. What does this mean? What do we do? How to we stop them and what causes them?

My mind raced but I stayed calm as I typically do in an emergency.

She said “I will explain more at the hospital but you need to drive him over to be admitted now. These are considered an emergency and he needs to be admitted now.”

WHAT? Is this real? That cute reaching thing he as been doing for 3 months isn’t a cute reaching thing?

The neurologist explained that these are a rare form of seizures in infants and considered an emergency and we need to get them under control.

“Do you want an ambulance or can you drive?” (She must have seen how confused and shaken up I looked.)

Ummmmm….. what??

“No, I can drive just tell me where. He’s safe in the car on the drive over right?”

“Yes, he will be fine, just go straight there.”

The journey of our hospital experience and official diagnosis will be in my next blog.

You may well have heard of the term “Early intervention” when going to various hospital appointments.

It’s a term I knew little about until the twins were born in April 2019 and quite frankly we are in the thick of it right now, with input coming from a multi-disciplinary team of professionals to help our children achieve their full potential.

This doesn’t mean it will cure them or “catch up” but be the best they can be and like any child will have stronger and weaker skills that may change in time with excessive input.

What I have learnt is that many of the things that were seen as impossible a year ago are now quite a possibility in time and as a parent adjusting to two children with development delays and complex movements, there are many more things to achieve than typical milestones of talking and walking.

There are all these tiny inchstones that are just as big an achievement.

A decent eye gaze that’s reliable, a few Makaton signs to communicate choices can make a massive difference in everyday life, from there we can add on more as time goes on!

The first few years are imperative to achieving the best outcomes.

Any child changes considerably in the first few years.

Children with brain injuries caused at birth get better outcomes than previous generations before as we as a community have realised leaving no stone unturned and supporting each area of development can wipe millions off a lifetime care bill and rewrite the text book of prognosis.

Many children who start early intervention programmes at home and nursery in the first year of life with appropriate postural support can rewrite the expectations of where they are on the gross motor function system.

Between ages 2 and 4 over half of these kids get reclassified at a more mobile level.

So when shall we start? From the get go!

There is no sit and wait, start helping your child understand there body and refine their movements, help facilitate weight shifting, strengthening, weight bearing, fine motor movements, talking, social interactions, the list is endless!

No one will wish they done less therapy if there kids are running around and babbling, but doing nothing you will always wonder what could have been.

Have you ever watched a juggling act?

I remember seeing one on TV and thinking how incredibly talented the juggler was while also wondering how on earth did everything not come toppling down?!

That’s how I feel about our life at the minute.

Our beautiful boy is now six and if you’ve read any of my previous blogs, you’ll probably be fed up seeing the words “spina bifida, hydrocephalus, sensory difficulties and epilepsy”.

Those are just words on a page, but to us, they are the biggest things we have to juggle.

Jacob has battled some true demons this year, which hurts my heart so much.

If I could take it all for him of course I would, without a moment’s pause.

That’s a parent’s love though isn’t it?

In 2020 alone, Jacob has been admitted to hospital eleven times (not including the multiple seizures in between).

Eleven times we’ve had to watch our child become unresponsive due to seizures, call an ambulance, bring him through A+E and be admitted into his usual neurological ward in the regional children’s hospital.

I think there’s sometimes a perception that this becomes “routine” or “the norm” for us but truthfully, it doesn’t.

Each time it happens, I have the heart wrenching fear that we are going to lose him.

Is that being melodramatic? I don’t think so.

Jacob’s hydrocephalus is controlled by a ventriculoperitoneal (VP) shunt that drains the excess CSF from his ventricles.

This is a life saving device and if it malfunctions, it can be fatal.

Unfortunately, each time he has had a shunt malfunction he has presented in totally atypical ways.

There’s no pattern to follow, none of the usual signs or symptoms and nothing to reassure us that he’s OK.

He has had three emergency neurosurgeries within the past three months. 

The presentation on these occasions has been an increase of epileptic seizure activity.

That we could handle, it was a pattern! If he has more seizures, push to get the shunt checked. Easy right? WRONG.

The only real way to check the shunt is working well is to do a CT scan.

Children are meant to have a maximum of five scans in their lifetime to reduce the risk of brain cancer due to the exposure to radiation.

We’ve genuinely lost count of how many Jacob has had now (he’s on his eight shunt) so the two main teams who look after his shunt and epilepsy are growing increasingly worried about the risks.

How do you balance that?

Thankfully, it isn’t our decision (although is very much our worry). We bring him to hospital and tell the “story” of what’s happening and then it is up to the neurosurgeons to decide if the symptoms warrant the risk of a CT versus the risk of missing a shunt malfunction.

Sometimes it’s a case of “wait and see” in hospital which can be both frustrating and terrifying.

Our most recent admission has been the most confusing yet.

Jacob seems to be very triggered by school and will often have seizure activity there.

His EEG has confirmed he has epilepsy so we have to treat this as if he is in trouble and manage it safely.

Despite that…his behaviour worries me a lot.

As a trained learning disability nurse I have felt for a while now that Jacob shows some traits of autism (which isn’t to say he actually has autism).

For example, he is very reluctant to touch certain textures, he has a very restricted list of foods he will eat, he claps and shakes his head, he will seek out firm touch and will often not understand play if it isn’t directed by him.

Sadly, he also hits out if he becomes angry and will become incredibly emotional if he doesn’t understand what’s happening.

His neurologist now feels that some of his “seizures” are actually episodes where his brain “shuts down” because he can’t cope with what is being asked of him.

These totally mimic his epileptic seizures but if she’s right, they aren’t true seizures at all, although are definitely horrible neurological events for him.

So now if Jacob has a seizure we have to worry if 1) He is having an epileptic seizure, 2) He is having a “non epileptic event” or 3) His shunt has malfunctioned.

How on earth are we supposed to juggle all that when it looks the same for each scenario?!

At the end of the day, while he still needs an education, we always have to err on the side of caution at the minute until they tease this all apart.

That means we could be giving our child incredibly strong rescue medication unnecessarily, or exposing him to radiation he doesn’t need.

It is a huge mental load to carry and one that we are most definitely not yet working through effectively.

I can’t really find the words to describe the trauma I feel we have been through.

I feel guilty typing that because I truly know so many people have been through so very much worse.

Jacob is upstairs asleep safely at the minute; and I know how fortunate we are to have him here.

Our triplets are my husband and my whole world and were desperately longed for children.

Sometimes though, the juggling act we have to cope with gets too much and things just come tumbling down.

I’m not proud to say that I am suffering mentally from what we’ve been through and while I know counselling is probably a good idea, we genuinely never seem to get enough of a break to even organise this.

It’s been constant for so long now we are just exhausted.

I often hear people say “I don’t know how you do it!” but the truth is, you don’t get a choice.

Jacob seems to have been dealt a really rough hand and he deserves parents who won’t give up and will keep picking themselves back up off the ground and preparing for the next wave of pain.

This year has been a hell of a year. I am sure we can all agree.

Whilst staying home more, I have found myself relying more on social media for entertainment.

It keeps you connected with the world around you, helps you stay in touch with those you’re not seeing in person, and keeps you informed.

The downside to this for me is seeing how many awful things happen in the world.

The pain and suffering that goes on on a global scale, but also the struggles those I care about have to face on a daily basis.

It pains me to see bad things happening to good people. I use a lot of emotional energy wishing and hoping there was something I could say or do that could make things better for them; even if just for a moment.

There is such an ugly side to social media.

I find myself gripped by the comments sections of news articles.

People arguing their case over lockdown restrictions, vaccinations – just anything and everything really.

We are all frustrated and fed up and it’s all too easy to get involved and make yourself feel even worse.

I’ve seen people get personal with others and saying things I wouldn’t dream of saying to someone.

It’s easy to let this taint your view of the world and spiral downwards into a pit of despair.

So I just wanted to share a nice thing that happened recently.

One of the positives of this year has been I have set up a local group where we share accessible walks.

It’s a great and proactive place as everyone is on the same page looking for what we CAN do in life; something I hold dear in a world where quite often the world can seem so inaccessible and isolating. 

We did a walk at a local park and I was excited to share it with everyone.

We finished the walk and had a little wander around the precinct.

Who should we see but Father Christmas!

We still don’t know how much Amy understands, and most of her learning seems to be done via song.

So I started singing a Santa song to her. She looked at him and looked so excited.

This sort of excitement is a big deal for us as Amy quite often withdraws and only wants to look at her iPad.

She is a social little girl but it can take effort to help bring her out. 

Santa climbed out of his grotto (stepped out of his van, which was decorated beautifully) to get on Amy’s level.

He asked her name and spoke with her, and had his picture taken.

He gave her an advent calendar and wished us a Merry Christmas.

The elves were also jolly and went the extra mile to make Amy see how special she is.

As we departed I took note that they were raising money for a charity and popped some change in the bucket.

It was a really heart-warming moment and she cheered and smiled for a long time after the encounter.

When we got home I went on the Facebook page of the charity to post a photo and thank them for our unexpected nice moment.

The charity looked at Amy’s page and had a read.

They decided to give half of the money raised to Amy’s just giving account. (Don’t worry – they also made sure to match the money given so that other people didn’t miss out).

It was such a kind gesture, completely unprovoked, out of the blue.

I filled up with tears and showed Phil and then sent the messages to my family who were also thrilled for us.

Moments like that remind me that it isn’t about arguing, or being petty.

It’s about being kind to each other, about having empathy, about giving what you can, recognising other people’s trials and tribulations.

It wasn’t about the monetary value of the donation (though obviously it was gratefully received and will be wisely spent), it was about connection and understanding and what the gesture meant to us.

Amy had a tricky day that day. She was having a lot of seizures.

She was in pain with her leg. She was contending with a lot that day, and does most days.

So any chance to make her smile and remind her that life is beautiful is a real blessing to us. 

It’s tempting sometimes to remove all social media and become a hermit.

I’d love to go without and break that addiction, I guess it’s just about finding that balance and trying to make sure that more good comes from it than bad and to try not to read the comments sections. 

A big thank you to “Rob and his Angels” (please follow on Facebook!) for making Amy’s and our day special that day, and for helping to remind us that there are still good people in the world.

It made my day seeing so many people like and comment on the posts we did on Facebook about it.

Sure, it didn’t go viral, but it interrupted an otherwise negative news feed with something nice.

I mean what’s more magical than a child meeting Father Christmas?

I’m not undermining of course the very real issues that are happening in the world right now.

I am just trying to say that we have to make sure we don’t lose sight of the many amazing little things that are also happening right now, in spite of such a challenging time for everyone.

Have you got a nice moment or story to share? It would be great to start a positive thread! My other bit of good news was that I started a fundraiser to purchase a GoTo Seat for Fleetwood Beach Wheelchairs. I am so grateful to the people that donated.

People that maybe aren’t part of our world but can see the importance in making sure everyone gets to enjoy the beach, irrespective of mobility.

I can’t wait until they receive it and we can go with Amy and show you all what they’ve managed to achieve.

If someone would have told me in February that our “normal” life would soon come to a halt and that a virtual school program was in my daughter’s future, I would have thought the notion was preposterous. 

Unbelievable.  Inconceivable.  Yet, here we are. 

Parents of children with disabilities are anything but novices when it comes to making tough decisions. 

This is something we are constantly and consistently faced with.  However, this year, we’ve crash landed in brand new territory. 

We’ve been tasked with making unfathomable decisions, while in the midst of a pandemic. 

We have impossible choices to make and some of us question ourselves nonstop.  We ask ourselves repeatedly if we have chosen wisely. 

Having a daughter with multiple disabilities and learning differences, choosing a completely virtual model for this school semester was a strange call for our family to make. 

She loves her school and adores her teacher and her classmates. 

However, she also has complex medical needs.  Flu season is scary enough for us; respiratory infections are extra difficult for her to fight off. 

Fever notoriously brings terrifying seizures.  Our son has been enrolled in a virtual school program for the last six years.

He is a successful, independent learner and enjoys working at his own pace. 

Even though this is not the case for our daughter, and she requires one-on-one direction, for the sake of her health and safety, we chose to keep her home.

We made the right decision, didn’t we?

While she was thriving at home and we settled into our new routine, we missed our vital therapies.  OT, PT, Speech, Feeding and Aquatic therapies were all key parts of our busy life before this abrupt change. 

Despite our worries of regression, we continued to keep her home, away from all that she was accustomed to. 

We made the right decision, didn’t we? 

No matter how many times I deliberated with myself, in my heart, the answer obviously was always YES.

The health and safety of our vulnerable child was first and foremost. 

Even though we were diligently working with her at home, there was always a sliver of worry; we didn’t want her to lose the valuable skills that she had worked so hard to attain. 

After six months of being without our in-person therapies and supports, we made the arduous decision to start back with some limited face-to-face visits. 

The first time I dropped her off at the door for Physical Therapy and watched her being pushed in her wheelchair by someone other than myself or her Dad, it hit hard. 

Tears stung my eyes as I walked away. 

Although I was thankful for all the safety procedures set in place, and I trusted that she was in good hands, it was so difficult to leave her. 

We were no longer covered in the security of our safe, comfortable bubble at home. 

My child had been safely glued to my side for the last six months.  I had tormented myself with uncertainty before that first session. 

As I waited on her, my eyes were fixated on the therapy room door, watching for her to emerge. 

I sat in my car as the minutes ticked by, at a snail’s pace.  I called my husband, and I asked him,

“We made the right decision, didn’t we?”

In the months following, we have slowly added a few more in-person therapies back into our routine. 

We’ve even transitioned from Telehealth to many necessary face-to-face doctor’s appointments. 

Every single time we venture out into the world, after shielding for so long, I hold my breath and wonder if we’re doing the right thing; if we have in fact made the right decision. 

Witnessing the excitement on her face as she sees familiar people she’s missed and watching her easily bounce back into the swing of her old life, it feels right. 

We exercise an abundance of caution in everything we do.  We do not live in fear, but we are extra meticulous in the precautions we take. 

In time, we are optimistic that we will be able to fully return to our “normal” life.  Until then, we remain vigilant. 

We continue to be extremely selective with the activities our family engages in, using careful consideration. 

For now, we assess each situation, hold tight to hope, and do our part to help things get better.  It must get better. 

We ALL wish to return to some semblance of what life was like before this. 

We reserve the right to question ourselves and our decisions at every juncture, and to change course if necessary.  

For now, we stand firm and believe that we made the right decision…the decision that’s right for US.

I have a big biological family; I am the eldest of five and with us all having partners and children of our own you can imagine those multiplying figures. 

In a lot of my SEN blogs since the start I’ve spoke about their support over the years, how were a multiplex family and how we share our journeys to some extent. 

Without them we would not have been able to carry on being a full-time working parents; they supported, adapted and helped us thrive.

They mean the world to me.

This blog is dedicated to the family that I chose for myself.  My FR-AMILY.

We all know that family isn’t always blood relatives, it’s the people we choose to have in our lives who also want us in theirs. 

They are the ones that accept us for who we are, warts and all. 

The ones that would do anything to see us smile.

My what’s-app is an awash of different group chats.  I had to turn the vibration off for the constant bzzzzz, bzzzzzzzzz of an evening, whilst I chuckle away at the latest GIF or try to offer my pennies worth in a debate. 

I have the besties groups, the kebab girl’s area and prosecco queens to name a few. 

There are friends within these groups that I can see up to once a month or as little as a once a year, but the love remains strong and we can just pick up where we last left off.

It is within these safe spaces that we can share our happiest and or our deepest darkest moments with these people. 

Share burdens that you would not necessarily want to worry your parents/siblings with, or a risqué joke that would makes your mothers toes curl.

I’ve told my son as he entered high school this last year that it’s not about having a 100 people who you know’ but selecting the right handful that you can take forward for the rest of your life. 

Its these people for me; mainly from my childhood and high school years that are here by my side today – oh but not forgetting those kebab girls I picked up in work a few years ago, they are alright and worth keeping around.

The encouragement and love we receive from the people we choose to have around and to share our life journey with is the perfect life tonic. 

I love my fr-amily – thank you all.

With all of the ups and downs of my daughter’s health, I have found myself having extreme separation anxiety.

There has never been a time when her father or I have not been with her for more than a few hours.

There are a couple of immediate family members that know how to care for our daughter’s needs, but it took me a long time to even feel comfortable being away from her in the care of those closest to us.

In my heart I always knew they were fully capable.

My mother is a nurse. She even had previous experience handling feeding tubes and people with disabilities.

My mother in law is highly attentive and is naturally an amazing caretaker.

Even with all of the reassurance in the world, I felt incredibly anxious being away for any extended period of time. 

Stella will be starting preschool in the near future, so I’m trying to come to terms with the idea of her being under the care of others.

I have recently been given somewhat of a practice run with therapy.

Due to the pandemic, parents are not allowed to attend therapy sessions at our local clinic so we have become accustomed to waiting in the parking lot.

Even though it is just a short period of time it still feels strange. 

The irony of it all is that my daughter is rather independent.

She has never been a particularly clingy child.

If she could speak she would probably say “how about a little space ma”.

It probably does not help that she is an only child.

It is really easy to get hyper focused on her when there is not much distraction.

I feel like a lot of it stems from the PTSD from coming so close to losing her.

She also was diagnosed with epilepsy a little after she turned two, so any amount of stability I felt with her health went out the window.

Her seizures are not frequent, but when they happen it is always completely out of nowhere.

It keeps you constantly on guard.

It is just hard to expect anyone to be as prepared. At least In my own mind. 

Soon it will be a sink or swim situation.

We are postponing attending school for a few months with the threat of the pandemic, but the time will soon come.

Like all things that come our way I know we will adapt.