These past couple of months have been a whirlwind. Oliver has barely managed a week without appointments, I haven’t had time to blog (brace yourselves, it’s a long one);  juggling work and trying to stay on top of all his paperwork has been a struggle.

IMG_2611Home Suction being sorted (finally) has made a massive difference. Receiving this equipment has been such a weight off of our shoulders. It means that when Oliver can’t manage his oral secretions or does fall ill we have been able to intervene a bit at home and stop him from aspirating. It’s not a miraculous cure and I’m under no illusion that we may have to have a hospital visit soon, but I’m trying to be more of a ‘glass half full’ person … I know, I know, we’ll see how long it lasts. 

After taking some getting used to, Oliver’s glasses are having such a positive impact on his development. Despite him not being a major fan of them and looking slightly like an alien, he is far more responsive, vocal and does seem to be taking more of an interest in things so that’s a win!

 

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His new chair finally got delivered the other week which he LOVES. If I’m honest, I think he may love it more than me and Craig. Seeing him happy and playing (smashing everything he can get his hands on) independently is priceless … even if it does involve him manoeuvring every toy he possibly can into his mouth and then lobbing it any in direction. His co-ordination isn’t the best but that’s fine – there’s no rush and I’m confident that he will learn.

My inner cynic can’t help but feel slightly annoyed that it took 20 months for him to be able to have a chair that he can use as a high chair and wonder what his development might be like if he had been able to have it sooner, but hey. 

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It is so nice that there are aspects of Oliver that we can finally see developing and progressing. Nevertheless, it is becoming more apparent that he has good and bad days with a vast contrast between the two.  His absence seizures are still prominent and there are days where he really isn’t with it,  in his own world entirely, glazed over and not really responsive.  Some days he doesn’t want contact, some days all he wants is to be held. Other times he won’t eat and gag before a spoon or bottle teat has even touched his lips, or he’s a little piggy and can’t down his bottle quick enough.

Most recently, It’s like a switch has been flicked and he’s loving life! Many months have been spent willing and persevering with him to take an interest in things, at times unsure if our efforts made were in vain. He seems to have developed so rapidly recently, almost overnight. We can’t quite believe the positive change we’re seeing in him and it’s the most cherished, overwhelming, rewarding feeling. We are seeing him deliberately happy, enjoying his food, making different noises.  He’s been extremely hit and miss with his solids and swallowing but recently has been tolerating different textures and food. This progression has given us hope that a feeding tube may not be an inevitable future prospect.

We’re starting to feel hopeful for the first time in a long time.  I’m unsure if this is embracing the half full glass or delusional, but I’m sure time will tell.

IMG_5524Craig and I have been off work this week too which has made a huge difference. Family time is the best time. Even just all of us taking the time to watch a film and be silly together. It’s the simple moments that are treasured.

We took Oliver to the zoo yesterday and the weather was great which lifted everyone’s mood. Oliver wasn’t the happiest sausage and slept the majority of the way around, intermittently stirring from his slumber to give us a death stare, but it’s making memories that counts.

Oliver had a skin & muscle biopsy back in March. After we felt confident his wound had healed and the weather brightened up a bit we took him back to his favourite place – the swimming pool.  It was the most wonderful time and it was as if he had never been away! He tolerated a whole 45 minutes kicking and splashing around, looking at the sensory lights and laying there like a King whilst we showered him with the watering can every now and then.  If I’m ever fortunate enough to win the lottery the first thing I’m buying is a Hydrotherapy pool!

I’m trying to forget about the medical side of things for the time being and just enjoy the time we’re having together. His most recent MRI results weren’t what we were hoping for (I’ll go into this another time) but we’re learning to focus on him and his abilities rather than what a scan is telling us.  We’ll hopefully get his skin & muscle biopsy results in a couple of months too and know more about everything then … hopefully.

 

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There are so many possibilities with Oliver and his conditions, in all honesty we are struggling to keep up.  So, we’re trying to be positive and remember that any outcome, positive or negative is exactly that … a possibility.  It’s not definite nor confirmed, it’s something that may or may not happen.  If you’re reading this and can relate in any way, it is taking a long time but we are slowly learning to have hope.

On the bad days it’s hard, especially when all you can recall from recent months are hospital admissions, appointments, feeding struggles and a miserable child who you can’t console or communicate with how you wish to. But just that one day, one hour even, of happiness or the slightest miniscule development in their behaviour can turn your world upside down in the best way.  Oliver is generally a happy child, ecstatic almost,. but when he’s feeling under the weather we sure do know about it and it’s important to stay positive and hopeful particularly during those times.

Hope makes anything possible. 

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Unsurprisingly, life doesn’t always go to plan. Sometimes this can work in our favour and other times it can be somewhat destructive. Life can change in an instant, it may be a curse, a blessing or both. It can be a welcome, sometimes encouraged change or a very uninvited, unexpected change.

I first started to notice my son wasn’t developing as he should be when he was about three/four months old. He wasn’t engulfed by rolls of chub, expressive or particularly interactive. I voiced my concerns countless times only to be reassured by medical professionals, friends and family that he was fine.

So, I carried on as ‘normal’, pushing the growing niggles to the back of my mind and allowing myself to indulge in everyone else’s optimism and reassurance. I queried the missed milestones but was met with an abundance of similar retorts – ‘all babies develop differently’ and anecdotes about their own offspring.

As imagined, more milestones were missed, more hospital admissions were encountered and the endless optimism and reassurance from others became less convincing. I could sense the doubt in their eyes but their words were as desperate as ever. I knew they wanted to believe as much as I did that he was just ‘a bit behind.’ IMG_2447

To cut a very long, upsetting and difficult story short my son was six months old when he was first classed as having global developmental delay and neurological abnormalities.

Initially, I completely dismissed this information, searched for alternative answers and was in denial for a long time. I so desperately needed my instincts to be proven wrong. However, as time progressed the inevitable dawned on me and I had no choice but to begin to accept, well, the inevitable.

Acceptance is imperative. Because once you begin accept things aren’t how you imagined, you can start to move forward. You can start to live your life. The adjusted, altered, real version.

Nonetheless, with acceptance came anger. I was consumed by resentment and began to see the world from a very obscure, unattractive and bitter view point.

A sense of entitlement for what I had ‘lost’ overcame me and bitterness crept in throughout the most mundane of tasks. I could have easily strangled the pregnant women I saw smoking outside the labour ward without a second thought. The things I was getting myself worked up about bared no relevance nor significance to my current situation. Those pregnant women smoking weren’t affecting Oliver, and if they stopped he wouldn’t suddenly get better. Of course he wouldn’t. It wasn’t impacting him at all, but instead of letting that anger subside I let it build up into such an overpowering sense of resentment I didn’t recognise myself.  There was literally no one to blame, nobody was at fault and there was absolutely nothing I could do that would make my son better.

In order to overcome the anger and begin to accept Oliver’s prognosis, I had to begin to adjust, to forget the ideal of parenthood that we had envisaged throughout pregnancy and stop allowing this bitter parasite of hatred taint my every day. I realised that by holding on to these negative feelings I was only turning an incredibly difficult time into a far more challenging time for myself and those around me.

Adjustment is an ongoing process and in time, it becomes natural. I have become accustomed to our own journey. I have learned to forget the milestones and the ‘should haves’ and the ‘have nots’. To adapt and start living our life to best of our ability, to stop comparing it to the ideal it should have been and have the best intentions to reflect on every single positive aspect that I can daily.

No child deserves to be unwell and no family deserves to experience the grief and hostility that accompanies it.

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I think I’m still at the anger stage and probably a part of me always will be. Oliver is only 20 months old so we have a long road ahead of us. I’m bordering on the adjustment line and teetering on the edge of acceptance.

The three A’s are all part of the journey of a child who is medically complex or has special needs. Like most journeys, you can take a wrong turn, you can climb a mountain only to reach the top and see a plague of mountains, far higher and far bumpier. Some journeys don’t have an ending, sometimes it is a long road that never turns. Sometimes it’s a short road with lots of turns or barely even a road at all.

My son has taught me so much about myself, the world, and life.  I know what unconditional love is and I know that it will see us through anything.  Some days are harder than others and some days are a little less hard, but one look at him and I know in that instant why I keep going.

I can only ever hope to have a soul as perfectly pure as his one day.

Well, what a start to 2018! To be honest, I haven’t been able to catch my breath and cannot believe we are almost at the end of January already.

That feels like such an adult thing to say, you know when people comment on the weather or ‘I don’t know where the time goes’ But seriously – where does it go!? I mean, I haven’t even properly begun my pathetic attempt at a diet yet, let alone found a moment to berate myself over failed New Year Resolutions.

I am feeling really positive about this year. I’m way past the whole ‘New year, New me’ crap but am actively trying to have a less cynical outlook on life in general (ever the pessimist).IMG_2102

In hindsight, last year was a total bloody nightmare. Our lives were turned upside down and at times unrecognisable, woeful and incredibly scary. There were numerous occasions where I questioned my capability of parenting and being a functioning human in general.

Therefore, this year my mantra was is to be as positive, happy and optimistic as one can be. I was under no illusion that we would be put into challenging and somewhat daunting situations; I just didn’t anticipate quite how soon it would happen.

When it rains, it pours and oh my have we had a flood and a half.

Amongst other pressures which are too complicated to get into at the moment, Oliver decided he needed another hospital admission for the better part of two weeks.

***
Far too often I mistake familiarity for comfort.  I have to come to terms with the fact that it will never get any easier seeing him unwell. He deteriorates so rapidly and I always worry whether it’s the start of something far more serious than an acute illness on top of his other needs.

Nevertheless, having to constantly fight my sons’ corner is growing tiresome. I don’t begrudge it; at all. It’s my job and duty as a parent. To fight for him, to protect him, to shelter him. It just never fails to surprise me how often I am challenging the very people who are supposed to be working with me and not against me.

Medical professionals are exceptional. Seriously, I am more grateful to them than they will ever know. But … why, oh why won’t they listen to me? My child is medically fragile with a range of complexities. I know him. I know what he needs. I know what will get him better 99% of the time. If they would just listen to me and take my advice into their considerations he could be on the road to recovery a lot sooner.

Don’t get me wrong, I really am not one of these parents who think they know everything and disregard Doctors’ knowledge and expertise. I’m a reasonable gal. I am always willing to have an open and honest discussion about Oliver’s illnesses. They can be as blunt as they wish – I would rather know the ‘nitty gritty’ bits than live in blissful ignorance, no matter how appealing it may appear.

But, when he is being admitted for the umpteenth time with similar symptoms to previous admissions – please, oh please, just listen to me! Do the x-rays, take the bloods, get him hooked up to Vapotherm or CPAP or whatever it is he needs this time. Because the longer they wait for different professionals to come and assess him or give their opinion – he’s worsening, he’s deteriorating and he’s suffering.

And – it’s not bloody fair. Because ultimately, they go through all of these motions and inevitably their course of treatment is exactly what I initially suggested …

This most recent time I found myself becoming increasingly frustrated, not least because I am having to chase anyone and everyone for answers, but for him. For the pain that he’s in, for his inability to comprehend what is happening and for not being able to comfort and console him when he needs it so desperately.

It is always draining seeing Oliver unwell enough to require hospital care. Nonetheless, the added stress and uncertainty of whether he is being cared for properly is sometimes too much to cope with.

The Nurses on the ward are all incredibly lovely caring people, but there were a couple of days where my patience was tested. Oliver’s care was less than adequate and in all honesty quite sloppy.

I understand that there are staffing and funding pressures. I am more than respectful and patient when it comes to his care as I know their capacity is stretched with the current demand.   On the contrary, at the very least, I expect basic care to be followed through and will not apologise nor concede this expectation.IMG_1995

More frequently, I am finding there is a limit to my own patience. It’s a fine balance between being compassionate towards the daily pressures staff face but also appropriately advocating for my sons’ needs. Recently, I have discovered that you have to be ‘not so understanding’ sometimes in order to achieve the best care possible.

This is in itself is exhausting. I don’t want to be a dragon, I don’t want to be difficult. I want to say ‘It’s okay, it doesn’t matter’ and sometimes I do; after all they’re only human. But, other times it does matter; it really matters. He is precious, he is my everything, he is complicated and he deserves their undivided care and attention. He deserves to be a priority and he deserves to be cared for competently.

Oliver being admitted should not be an occasion where I have to fight for him. It should be a time where I can solely focus on being a Mother, become estranged to the medical jargon and plead ignorance. It should be a time where I have nothing else to focus on other than being a parent.

Thankfully, Oliver is now at home safe and well, we just have routine appointments and procedures planned for the immediate future. Hopefully, he won’t give us any more surprises!

***

Oh, the irony. I’ve basically just moaned after talking about what a positive outlook I was going to have this year.

I guess I’ll blame it on the ‘January Blues’ and can only hope that the rest of the year will bring more answers, positivity, fewer obstacles and considerably less stress …

 

 

 

 

Regardless of whether you strictly abide by ‘Breast is Best’ or formula feed your little one, it’s essential that feeding is a special time, one of peace and tranquillity.  It is one of the most natural things in the world and such a primal, instinctive action that allows you to bond with your baby like nothing else can.

Sadly, like many other families, I never had that experience.

I had made the decision throughout my pregnancy that I would breastfeed for a short while but inevitably move onto formula.  I was quite pragmatic and frank about the decision. There was no specific time frame, no underlying reason; it was purely personal preference.  As long as my baby was eating, gaining weight and healthy, I didn’t care how he got there.

In hindsight, I think this decision was partially contributed to by fear of my own incompetence to be able to breastfeed successfully.  By opting to formula feed of my own accord I eradicated any chance of failure.

Anyway, if you’ve read my previous blog posts you’ll probably have correctly predicted that things didn’t go to plan.  Oliver did not latch on, I persevered with several different nurses pulling my tittybumps in opposing directions until I
was at my wits end; by the end of his first afternoon on planet earth he was on formula.

No big deal, I had wanted to formula feed eventually anyway so it was just happening sooner than originally anticipated.  I was slightly frustrated with myself, but all in all, as long as he was being fed, that was all that mattered.

Oliver did not like feeding, even when he was well.  I cannot even begin to express the stress, worry and exhaustion experienced.  He struggled to latch on from day one. He would soon become breathless after a couple of gulps meaning he had to stop despite still being hungry.  We would then try again half an hour later or so and he would take another tiny amount and so on and so forth. It was a vicious cycle for many months.

I would try and time feeds impeccably to the last minute hoping each time that this would be the feed that he took a worthy amount and things would change – they never did. If we offered him milk when he wasn’t hungry he wasn’t interested, but if he got to the stage where he cried because he was hungry, he would become too breathless to take
milk and tire himself out. We couldn’t win, it was impossible to second guess him.

Sometimes it wouldn’t matter how much he was enjoying his bottle, he would just stop himself.  There would be
no distraction, no interruption; it was like something switched inside his brain and he just would.not.eat.

I was (still am) envious of parents whose babies looked like Michelin men and would jest about what greedy guts their offspring were.  I would’ve have given my right arm for Oliver to down a bottle even once.


Last Christmas (2016) Oliver was critically poorly and was admitted to hospital for two weeks.  He required an NG tube as he had lost his ability to latch onto a bottle altogether. He had needed a tube when he had been unwell in the past, but this time was different – we were going home with it.

Oliver was discharged shortly after New Year 2017 and was tube fed for over a month at home.  This was undoubtedly the most distressing, testing and exhausting time I’ve ever experienced. NG tube feeding in itself is actually really simple to do, and once you get into the habit of it becomes normal. But it does make every feed a lengthy process and requires a lot of care and attention.

Much to my initial horror, he must have vomited up his tube at least a couple of times a day for the first two weeks.  This soon became the norm and more of an inconvenience than anything, but the first time it happened I shit myself. We had to pull it out through his nose and I was in pure panic mode.

I stopped at my parents’ as Oliver’s Dad works nights and I wasn’t confident enough to be on my own with him.  Having my mum there with me, persevering and supporting me through everything was priceless; I would not have gotten through it without her.  Her resilience and determination never waivered and kept me going through some dark days.  She was and always will be my rock.

The community nurses were amazing too, coming out to the house at least a couple of times a day to put the tube back in. He had so much mucus in his system which I think caused the vomit, but it was literally just a case of waiting for him to clear it.  Being in hospital would have made no difference to his care so we battled on at home.

Eventually, Oliver did regain enough strength to bottle feed again and the relief and joy is a feeling I will cherish forever.  Out of all the struggles we’ve had with Oliver, feeding has been a prominent, ongoing issue and one that has seriously pushed me to breaking point. I am so happy to be able to say that we’re almost out on the other side. He takes his milk with no problems now (touch wood) and we are slowly trying to wean him onto solids. Oliver has recently had a swallow assessment too that went well so we have the green light to slowly build in texture to his solids.   We have been told to keep an open mind about a gastrostomy but I’m praying that that won’t have to
happen, and if it does, we’ll face it when the time comes.

Any parent that has ever tube fed, peg fed or struggled with feeding (reflux, colic etc) their child I have the utmost respect for you.  There are so many aspects that attribute to making something that should be such a simple, joyful time into a difficult, stressful time, but we have no choice but to keep on going.  After all, our babas need their grub!

To say I’ve been quiet recently would be an understatement.  Being back at work has been a shock to the system; the adjustment and struggle to juggle everything is real.  The mornings are getting darker, colder and I’m snoozing my alarm way more than I should be.

Oliver has been a busy boy.  He’s had a standing frame delivered which surfaced a mixture of emotions.  Initially I was dreading it, pre-empting him resisting it and months of painful tantrums and tears.  In fact, I was pleasantly surprised. He absolutely loves it!  Although it didn’t stop an uncontrollable sobbing session, but there were tears of joy amidst the breakdown.  It’s highlighted how much he wants to be in control of his body, independent and doing things for himself.  It really has given me hope and potentially a new outlook that he could possibly do things freely for himself.  The strength is there he just needs to learn how to use it and it’s our job to teach him.

We have also attended Oliver’s first time at a playgroup for children with medical needs/learning difficulties.  There’s only a couple of children and albeit daunting it was a wonderful experience and definitely beneficial to Oliver.

In all honesty, I wasn’t really sure how I felt about going.  I am the furthest thing from a social butterfly (more of an awkward sloth) and if there’s a chance for me to not interact I will pounce on it.  But, this was for Oliver so of course there was no question as to whether I would go or not. Oliver’s dad was naturally amazing and befriended everyone there anyway.

There was a huge sense of relief. Those nerves I had had when taking him to other mother and baby groups weren’t there.  Possibly because we were going as a family this time, or possibly because I knew this type of group eradicated any possibility of looking at every other child and feeling an insurmountable wave of jealousy whilst wondering why
Oliver isn’t doing what they are doing.  Everyone was in the same boat; it was extremely liberating not to have to beat around the bush for once or sugar-coat Oliver’s conditions.

Don’t get me wrong, I did feel a sense of sadness after it had all sunk in.  I suppose it was another activity that made me realise that Oliver’s difficulties are very real and very present, that they will be long term. That this is our reality now and we need to embrace it.

However, despite having felt incredibly lost over the past couple of months, it did certainly reassure us that we weren’t alone.  Sure, we’ve had inundated support from family and friends, but to meet other families enduring similar struggles who we could be totally honest with was amazing.  Comparing medical notes and learning about other children’s needs without a second thought was priceless.

 

There’s a hydrotherapy pool there which is definitely Oliver’s niche. We took him swimming for the first time in a heated pool when we went away over the summer and he thrived so much in the water.  I had wanted to take him swimming from when he was very little but he had been too weak and poorly.  It was such a special family memory to
make given the obstacles we have faced, and the fact he loved it so much made it even more precious.  When we returned home we tried taking him to a normal pool but he couldn’t regulate his temperature so that didn’t work out.

Having this accessible facility there at our disposal is such a privilege and we are so, so grateful.  He’s been twice now and combined with the standing frame we are already noticing  an improvement in his abilities.

He’s also been three months hospital free (aside from routine appointments) which has made the world of difference to our daily lives.  Dare I say that I am starting to relax a little and not always anticipate the worst?  Possibly not yet, but things are looking up, and I’m trying my best to go with it and not dwell on the what ifs.

It’s hard work, really hard work, but we’re coping and managing as best as we can.  The support of family and friends is second to none and we couldn’t be without them. Oliver is so happy at the moment despite trying to gnaw on anything and everything he can get his gnashers on.  He’s growing up so fast and looking more like a little boy each day.

God, I love him.