My Oliver Leslie.
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Diary
January 28th 2009
Today we went up to London to the Evelina children's hospital. It was a 2-day trip so we could take Oliver to 5 appointments. The first thing we attended was an EEG brain scan. Then we went to his pre-assessment clinic for tomorrow's anaesthetic. Then followed a specialist feeding clinic. Then we had some time to book into the parents accomodation Gassiot House and have a stroll around Westminster and have some dinner. Back at our room we were all asleep by 10pm, exhausted from the appointments and travelling.
January 29th 2009
We had to be up very early to give Oliver his usual anti-epileptic drugs as he wasn't allowed any fluids after 6am. We checked out of our accomodation and were in the hospital by 7.45am. Oliver had his general anaesthetic and whilst asleep had a lumbar puncture, blood tests and an MRI scan on his brain. He took a long while to fully recover from the anaesthetic so we left the hospital late afternoon and got home at 8pm. We were all shattered.
February 2nd 2009
Oliver had an appointment today at our hospital for speech and language therapy, occupational therapy and physiotherapy. Daddy took him and I had a couple of hours at home to myself. Nice long read of my book in the bath. Bliss!
February 9th 2009
Our teacher of the deaf came for a home visit today accompanied by our early years support worker. They are hoping to get Oliver into nursery after Easter with his own special one-to-one teacher!
February 10th 2009
Today Oliver had an appointment to see his geneticist. She told us she had attempted every known test she could think of on his blood and DNA and could find no underlying condition to explain his problems. Of course we are still awaiting the results of his recent lumbar puncture and MRI scan...
February 11th 2009
I had an appointment today to see my osteopath as I suffer with Fibromyalgia, similar to rheumatoid-arthritis. It started whilst I was pregnant with Oliver and has become worse as obviously we have to carry him around. I hope I'm not left too sore as I have college tonight. I am learning British Sign Language as I want Oliver to be able to mix comfortably with the both the hearing and deaf communities.
February 24th 2009
Oliver saw his paediatric consultant today. He has found out from Oliver's neurologist that the results are back from the lumbar puncture and the MRI scan. Everything almost certainly points to an underlying condition called Mitochondrial Disorder. We feel quite relieved as finally we appear to be getting some answers as to why Oliver is the way he is and may now be able to really give him some fully appropriate treatment.
February 26th 2009
Our teacher of the deaf came for a home visit today. She is also our keyworker which means she helps co-ordinate appointments and makes sure every one of the people who work with Oliver all receive copies of each other's reports. That way they can each tailor-fit his care from their department to allow for input and results from other departments.
My parents, daughter and son-in-law also arrived at lunchtime to spend the afternoon with us. They all looked after Oliver in the evening so me and Danny could go to the cinema. It was so nice to have a couple of hours to be a "couple". We held hands as we walked there and back and shared sweets and drinks as we lost ourselves into the film. It was a really special night. We "found" each other again, which is something we must keep going. Sometimes it's so easy to get lost amongst all the appointments, worry, sleepless nights and medical results.
March 1st 2009
The room is spinning and I can't breathe properly. My heart is racing so hard you can visibly see the pulse in my neck. I have just found out what Mitochondrial Disorder actually is. Our bodies have loads of cells called Mitochondria. These cells carry the energy from our food around the body ensuring our vital organs are being fed. In Oliver's case his brain is not being fed properly, causing his deafness and epilepsy etc. It is why he is so developmentally behind his biological age. Mitochondrial Disorder has no cure, no treatment and is a life-limiting disease.
March 2nd 2009
Today was Oliver's family service plan meeting. A chance for us to meet up with Oliver's medical providers and come up with a plan for the next few months as to what aims we have and want to achieve. It is all part of the keyworker scheme. These meetings are so helpful to us as a family but today was a sad meeting when I told them all that Oliver almost certainly has Mitochondrial Disorder.
March 7th 2009
We held a party at our house today for my parent's 50th wedding anniversary. My Aunts and Uncles and some cousins came and we had a full house! It went really well and made us happy to give something special back to my Mum and Dad after all the support they give us. I think the planning of it and organising the day gave me something to focus on.
I still feel like a part of my heart is numb and I'm finding it hard to deal with Oliver. I can feel myself withdrawing from him slightly as if I'm afraid to feel my emotions about him too deeply. It was sad to explain these latest findings to my family. He is such a gorgeous little boy and he just doesn't deserve this.
March 9th 2009
Oliver had another appointment today with physio, speech and language and occupational therapy.
March 12th 2009
A double whammy of a day today. Firstly I had a hospital appointment in the morning. I had a colposcopy and 2 biopsies taken to test me for cervical cancer after my recent smear showed abnormalities. I feel like each day is passing in a blur at the moment. It's just one worry after another and I have to wait 6-8 weeks for my results. I couldn't stop crying after my appointment.
In the afternoon Oliver saw his paediatric consultant to review his medicines and treatment. On a good note his recent course of ACTH injections and the steroids he is also on (along with his other medicines) have increased his weight. He seems a little bit more robust and his epilepsy appears to be under better control.
March 19th 2009
Another hospital trip today. This time for yet another EEG scan. Danny laid down on the bed while Oliver had the wires attached to his head and had the scan. Oliver was hopefully expected to doze off... which he didn't although he did lay still and quiet. However Daddy had a nice nap while laying there! Men!
March 23rd 2009
Back to the hospital today, this time to see Oliver's neurologist. We went armed with a list of questions about Micochondrial Disorder and to find out specifically how it affects Oliver in this case. We wanted straight answers. His neurologist said they don't have a 100% diagnosis yet, although he is almost certain that it is Oliver's underlying condition.
This is based on Oliver's problems collectively and the fact they have pretty much exhausted every other possibility. Oliver will need to have an echo-cardiogram and 2 biopsies taken under general anaesthetic, one of skin and one of muscle. His neurologist confirmed that Mitochondrial Disorder is life-limiting and told us we will almost certainly outlive Oliver.
I left the appointment and collapsed in the corridor. I was sobbing uncontrollably and could not stop crying for 3 hours. My head is screaming in agony.
March 24th 2009
Another home visit today from our teacher of the deaf/keyworker. Today she focused on us rather than on Oliver. It was nice to just sit and cuddle Oliver as he dozed off in my arms and pour out how I feel to someone outside of the situation. I find lately as I'm talking that i go blank and vague and seem to drift off. I think it must be all the stress I'm feeling.
March 25th 2009
Danny had another appointment today with his psychiatrist. Danny has Bipolar and with everything that is happening lately, understandably his medication is not quite cutting it! His doctor wants him to increase one of his anti-depressants.
NO, NO, NO! Danny came back from his appointment and we set about getting Oliver into the bath. As we laid Oliver on the floor to undress him he suddenly went into full-blown Grand Mal seizures. He has never had these type of seizures before and I can't understand why it happened. His recent EEG showed a much better control of his epilepsy.
I immediately phoned straight through to Oliver's paediatric consultant who told us to ring an ambulance and get Oliver straight into the hospital where he would meet us at the children's emergency assessment unit.
The ambulance rushed us in with full sirens and blue lights flashing. By the time we arrived at the hospital Oliver had had 15 of these seizures in a row. The hospital gave Oliver 3 types of anti-epileptic drugs before the seizures calmed down. He was also on oxygen and a drip as he couldn't swallow properly so his fluids were low. Danny stayed the night in the hospital with him and I came home to collect some more nappies etc.
March 26th 2009
I went back up the hospital today and Oliver was allowed to come home. He is not 100% back to himself and his arms have been left with some involuntary twitching. I can't look at him without tears welling up in my eyes. We have now got a full supply of his medicines at home and also an emergency anti-epileptic drug to give him if he ever has those huge fits again. I keep having palpitations and night-sweats and feel like I want to sleep for days at a time. I can't stop holding Oliver and snuggling into him and kissing the sweet soft skin on the back of his neck. I don't know another child who is worshipped more than we do him.
November 29th 2009
After a further week in hospital we brought him home. He was not the same boy he had been before. He was not very responsive to us. He didn't giggle or smile or make much eye contact. We began to fear that the doctors were right, that he had been left with brain damage. It was difficult for him to eat or drink safely as his mouth seemed more slack and he couldn't seem to coordinate his swallow properly. However gradually over the following weeks he became more animated and started to respond to us and play again!
Oliver was back!
Then in July Oliver went back up to the Evelina hospital to have an operation. He had a feeding tube called a gastrostomy fitted. It is a plastic bendy tube that goes directly through the skin of his belly straight into his stomach. So about 4 inches above his belly button he has this tube dangling out of his belly!
It has made all of our lives so much easier! We don't panic that he hasn't had enough calories, we don't have to try and force him to eat, he doesn't have to sit there crying clearly not enjoying mealtimes, and no more trying to pin him and make him swallow foul tasting drugs!
Oliver has put on weight and is now quite a chunky little monkey!
A couple of weeks afterwards, in September, we headed back up to the Evelina hospital so that Oliver could be "observed" and to also try and get his drug levels sorted as his seizures were becoming worse and more frequent. It was decided that as Oliver seemed to be so resistant to drugs it would be best to try him on the Ketogenic diet. Obviously it would be easy for us to give this diet to him as they would simply provide us with a new liquid to replace his milk-feed, but I sympathise with any parent who has to give the ketogenic diet to their child who eats normal food orally...a) as their child would well want to eat the things their friends do (crisps, fruit, chocolate, vegetables etc) and b) because what you do have to feed them is utterly disgusting and goes against all the things we try NOT to feed our children, huge amounts of fat etc!
December 9th 2009
After a few decent days with Oliver's new drug, he has gradually had an increase in the amount of seizure activity he is having. It's not as bad as it has been in the past but any downward slide and we just cannot help ourselves from feeling depressed about it. The Christmas cards are arriving daily and our lovely lit decorated tree has pride of place in our front room, but I can't help myself from looking at it and wondering why on earth there are Christmas things around us. Where did the year go? Is it really December already? I am usually one of the first to put up our tree and be organised and although I am going through the motions I just feel kind of disconnected to the world around us.
Today Oliver is not well at all. After our recent trip to London the 3 of us came home with colds, yet we all still have hacking coughs that just won't shift! Oliver's cough is so forceful that it has made him sick twice today already, and those telltale seizure signs are making themselves increasingly present. I have had a bad time trying to sleep lately and even when I do manage a few hours I always seem to have amazingly realistic detailed dreams and wake up in a sweating panic! I think I need to see my doctor about this. When I have time...or the energy to get out of pyjamas and actually leave the house.
December 10th 2009
Oliver's seizures are becoming more frequent again today and we have given him quite a few doses of extra medicines. Still nothing seems to be working for any great length of time. He seems so distressed and distant and is having trouble sitting up without continually flopping over. I don't know how many more doses we can give without having to call for back-up. Also Danny took him to our doctor and he was given antibiotics and an inhaler for his continuing cough. At least that has eased his discomfort and he hasn't been sick again.
December 11th-12th 2009
Finally at 2.30am we had no choice but to give Oliver paraldehyde and ring for an ambulance at the same time. The paramedics arrived and the 3 of us were once again taken to our local hospital.
Oliver was kept in resussitation for a few hours while they did a thorough check-up and once his oxygen levels increased he was transferred to the children's ward. Luckily for us the ward was fairly empty so Danny slept on the parent's bed next to Oliver and I was allowed to sleep in a bed in the empty ward next door. Well, I slept at 6.30am for 3 hours at least!
Our wonderful general paediatric consultant was on call today and he made lots of phone calls to the Evelina hospital in London and discussed Oliver with his neurologist based up there. The new drug that he is on has now been doubled each dose and after tea-time we were allowed to come home.
Luckily for me, Danny had slept a lot longer than me in the hospital and so he wasn't tired when we got in. He dealt with Oliver while I had a shower and I then slept from 8pm until 2am! 6 whole hours in one go! Typically, I still woke up sweating and having some weird nightmare about an airfield... (I have no idea what that was about!) but at least the sleep was much needed!
When I woke up Danny and Oliver were still awake although not very long after they both went to sleep. I guess on the plus-side I had some very-much needed sleep... the downside is that I'm now wide awake and typing this at 6.33am.....hmmm, might be time to make a coffee and finally write out my Christmas cards! I'm actually feeling like the Christmas spirit is rubbing off on me...and the thought of Oliver opening his presents on Christmas morning is even enough to melt Ebenezer Scrooge's heart! Who could resist that angelic face lit up with joy and happiness!
February 12th 2010
I can't believe how much time has passed since I last wrote on here. I did manage to write out my Christmas cards eventually, but Christmas arrived so quickly and I was nowhere near as prepared as I normally am.
On Christmas eve my family came round, (it is my Dad's and my daughter's birthday!) We had a nice buffet lunch whilst chatting and listening to cheesy Christmas cd's. When everyone left on the evening I had a meltdown and couldn't stop crying. No matter how hard I tried to "connect" with the festive spirit I felt like I was in some alternate world looking through the window into my life.
On Christmas day me and Danny started to open presents but it was clear that Oliver was not very good. He wasn't really connecting with us and kept flopping forwards or to one side. He was just very "out of it". We took a break from presents as it was clear Oliver had no idea what was going on. I used my mobile phone to video Oliver's behaviour as I felt sure we would be taking him to hospital and I wanted to show the doctors exactly what it is that Oliver does.
We eventually made the decision to give him extra emergency drugs whilst keeping a watchful eye on his condition, checking his pulse and breathing etc. He eventually fell asleep and me and Danny made the best of the rest of the day but to be honest for the first time in my life I actually hated the whole "Christmas day" thing. You plan it for ages and create such expectations in your mind only to leave yourself wide open to potential disappointment. I started thinking maybe life would be better taking each day as it comes and stop forward-planning. I also thought about other people maybe sitting alone, missing loved ones, not with their families or children, not in the place in their lives they imagined they would be. How disappointing the whole Christmas day thing must be for them too.
I'm not going to start muttering "humbug" at Christmas, but I just feel in future we may be happier not putting so much stock into it. And no matter how hard I tried I couldn't stop imagining children the world over ripping open presents and shrieking with excitment, zooming over relatives feet and ankles on their new bikes...
And there were we sitting looking at our beautiful boy, totally unaware of his new toys, falling and flopping uncontrollably in his wheelchair and trying to look at us with his eyes rolling backwards into his head.
As you can probably tell I am suffering from depression. It has gone from mild to moderate to now severe. All I want to do is either snuggle up to Oliver and hold his beautiful face or escape for a while being on the computer. I avoid going out or mixing with people. They would only ask "how are you?" to which I have 2 choices of answer to give; lie and say "yeah I'm great" and keep my feelings hidden, or tell the truth and watch their facial expression say "I wish I'd never asked her now!"
On the plus side we have another fabulous (NOT!) trip to London planned. Oliver has to go into hospital for 4-5 days for some more tests in March. It's called telemetry, what he is having done. Basically it will be an EEG (brain wave) test, except that the wires are attached to his head continuously for a few days and he will be videoed at the same time. It is not painful but I'm not sure he will be too happy about about wearing a helmet day and night.
The results will then compare what Oliver may be doing on the video, to what was happening in his brain at that exact second. For example when he goes floppy, does the brain show a seizure at that time...??? Or could it be an after-effect of a previous seizure, or a build up to an oncoming seizure... it hopefully will give us a better understanding of what Oliver's brain is doing at the times he is displaying certain behaviours. All with the hope of knowing when to give extra drugs or not, when to worry or not.
One of us has to stay by Oliver for the entire stay, so Danny has said he will sleep on the window seat in the hospital side-room. Other parents have told us how hard and uncomfortable they are so it's a good job Danny could sleep pegged up by his ears on a washing line! I will stay at the Ronald McDonald house again and this time my daughter Amy should be coming with us, so she can stay with me. Which is good as I think I would go mad on my own each night!
Last month we decorated Oliver's bedroom and it looks lovely. Soft blues with a subtle car-theme. Nothing too overpowering as he is developmentally behind his biological age, so I still wanted a kind of nursery/toddler feel, not a boisterous pre-school boys room. Oliver can't be left alone as he wouldn't be safe so his bedroom is purely for sleeping in. At night he has various projectors and lights reflecting on the ceiling, which is nice and visual because of course he doesn't have his hearing aids on in bed! (another reason he can't be left alone... hearing aids often end up being chewed!)
The next room to be decorated will be Oliver's sensory/play room. We have been awarded a grant which is paying for some padding for the walls and floor of our spare bedroom to give oliver a safe space to roll around and play and if he does drop suddenly he can't bang his head! That room is going to be my project and i have a castle kind of theme in mind...he is our little prince after all!
April 23rd 2010
Where is the time going? Well we have had Oliver's telemetry tests done in London, and although we are waiting for the full reports, the initial view is that Oliver is having far more epileptic activity than they first thought. As is usual with Oliver, despite increasing drug doses or tweaking things here and there, he is better for a few days and then the seizures take over his life again.
He started nursery last week...finally! (only a year too late!) We managed to arrange the meetings needed for him to be ready for nursery...or should I say for the nursery to be ready for him. Obviously there is a lot of red-tape to get through so that the nursery staff are confident about looking after a child like him. Nurses had to go in and train the staff on how to give Oliver his medication. It's a mainstream nursery but he is in the pre-school room with children aged 6 months-3 years. Even though he will be 4 in June it is a better environment for his developmental age. The staff are lovely, especially Oliver's one-to-one keyworker! :-)
He could have gone to a special nursery, but the nearest one to our home is quite a distance and not something we can consider as we don't own a car. This nursery is literally a 3-minute dash away from our home, so if anything too "medical" happens we can get there quickly. Just as well, as he has only been for 2 sessions so far and both times I have had to run over and pick him up half an hour early as he has needed emergency drugs. These drugs are given rectally and he then needs to be carefully monitored after having them. This is something only we or trained nurses are allowed to be responsible for.
Still, this was the best solution all-round. We have an agreement that for Oliver to be allowed to go there, me and Danny are on "standby" at all times. So we have a few hours break, Oliver has a few hours playing and seeing other children and if he needs urgent medical care we are just over the road to run back to him! Far better to do things this way, then at least he has some experience of nursery.
He is due to start school in September, so the statementing process has begun for that. A statement is a government approved "contract" for children like Oliver for when they enter school. It basically draws up a huge list of his needs and concerns and the school then has a legal obligation to make sure that his curriculum covers both his educational needs as well as his physical, mental and medical needs. The school is also given extra funding to help them to meet the requirements of this "contract". All of Oliver's doctors and care providers have to input their perspective on him to make sure that each and every detail of his needs are listed in the statement.
So as well as providing an education, if the statement says he needs X amount of physiotherapy, or speech and language therapy, or specialised seating equipment for example...then that is what the school are "contracted" to do. Everything must be taken into consideration, from what textures of food a child can manage, to their drug regime, to whether they need constant one-to-one support.... everything you can imagine is thought about and the contract is set. It is a very long process to consider every aspect of a child's needs and as his parents we have to add the seal of approval.
I have almost finished painting Oliver's sensory/play room. His specialist padded walls and floor have been delivered so once I have finished decorating that can all go in with a big selection of toys and things of interest on the ceiling etc. He will finally have a safe enclosure to play in and do his physiotherapy exercises. To be honest the painting is helping me stay focused as I have been in an awful mood for a few days. A friend who I met at the hospital in London rang me a few days ago to say her son had died. He also had a similar epilepsy that was difficult to control and he was a couple of years older than Oliver.
My mind just doesn't know how to deal with the news. Half of me is absolutely devastated for their loss, and the other half is sick with worry as to what that means for us. I know it's depressing, I know it's being negative, I know that I should focus on the fact that Oliver IS here, but I just can't shake myself free of the worry. Oh who am I kidding, "worry" is nowhere near the strength of word needed for how i feel. My heart has sunk so low I feel like it's thumping in my stomach and not my chest anymore.
Sweet Arthur, I am honoured to have known you. Such a handsome face! Such a huge loss to your family. R.I.P little angel and watch over your Mummy and Daddy as they watched over you. Always let them feel your closeness as they are going to need some of your bravery now. Sweet dreams little man. x x x x x :-(
March 9th 2011
I knew I needed to update things but has it really been almost a year since I last wrote on here??? So much has happened and I kept saying to myself "I must add that..." Really, I'm quite shocked at how much time has gone by.
As I wrote last time, my friends had sadly lost their son Arthur. Literally a few days after his funeral Oliver was back up in London to be monitored and to try changing doses, adding in new drugs and taking others away. We spent almost the whole of June and July with him in hospital.
In some respects it gave us a break to "pass all responsibility" to the nurses, but that novelty soon wore off and the whole trip became quite surreal. Spending a longer amount of time surrounded by other children, gave us the opportunity to really get to know a lot of the parents. Initially I found it comforting to make so many new "friends" but as time wore on, the more I absorbed the more I felt overwhelmed.
When you only spend short amounts of time up there, your focus is on your own child, but the longer it drags on the more aware you become of other families and their struggles. You become close to the other children and babies and suddenly your heart is stretched to breaking point. To see such sweet faces all around you, smiling and playing in their beds, tubes and wires coming out of every place imaginable. Yet they play on, oblivious to the strain behind the weak smiles of their grey-faced parents. There is so much sadness, hope, courage, devastation, bravery, relief... I soaked it all up like a sponge and by the time we went home my emotions became numb.
Soon after I started having nightmares and waking up crying and dripping with sweat. The strain and panic and constant worry was spilling out into every single thought I had. I cried buckets over Arthur...in fact just typing his name brings tears to my eyes. All those sweet beautiful brave children...so courageous, enduring test after test whilst their shell-shocked parents watch on unable to help. Not knowing what the outcome will be for their child. You step right into an alternate world, and once you do there is no stepping back into the world you thought you knew before.
Within a couple of months I suffered a breakdown. The evening that things reached breaking point for me, still remains a bit of a blur in my mind. Maybe that's my brain's way of blocking it out. I know it scared the hell out of Danny and my Parents. I left them chatting in the front room and silently left the house and just walked and walked with tears streaming down my face. I ended up sitting on the ground in a car park and I can clearly remember the gravel digging into my legs as I sat there. I don't know how long I was there...maybe an hour or 2, crying the whole time, my head spinning with emotional overload. I found a broken tile next to where i sat. It had a sharp jagged end and i dragged it over and over the skin of my arm. There was something strangely satisfying about it. It felt real. I felt real. Slowly I started to become aware of where I was and I didn't like it. I wanted to be home.
I felt drunk as I walked into our back garden, really dizzy and drowsy. I remember Danny talking to me and my Mum asking me questions. There was also a policewoman but I don't really remember her being there. I know I cried out over and over again "I don't want to lose him".... and still to this day my heart is constantly heavy with fear.
Soon after I began counselling and they upped my anti-depressants to super industrial strength. I began talking a lot more about my fears and being open about it instead of trying to be capable all the time. Danny has been amazingly supportive and taken some quite loud rants from me without flinching! That has helped me so much, to be able to express my feelings and not worry about being judged. I love my son. I worry about his illness. I hate that he is considered "life-limited".... I am normal and supported and loved for being me.
Once things started to improve in my head I could start to appreciate the happiness around me once again. Besides... my daughter and son-in-law needed my Mothering too! We were about to become Grandparents! My daughter was heavily pregnant with twins and this was something positive to help me get my focus back to reality! My Oliver Leslie is now an Uncle to 2 beautiful baby nephews! I am the very proud Nanny of 2 very scrumptious Grandsons; Leslie-james and Joseph-Lee. Now I have 3 gorgeous baby boys to cuddle and fuss over!
Christmas Day was lovely. Amy and Reuben got a new house close to us and we went there for the day. They are both a very capable young couple and made us a lovely 3-course dinner. It was very poshly presented! I highly recommend a meal at their house! lol. I didn't have to lift a finger and it was so nice to take turns holding the bubbas and relaxing with Oliver, sitting and playing with his new toys with him.
It was a real turning point for me emotionally. Surrounded by my lovely family and thinking to myself, "I am so lucky to have 2 beautiful children". The future will bring what it brings regardless of worrying about it. Oliver is here right now and there's no time to waste enjoying the here and now.
In February Oliver finally had his operation to be implanted with his vagal nerve stimulator. I felt so positive about the whole thing and didn't panic at all when he was in theatre. I shed a few tears of relief when he came out and was a bit shocked at the size of the big angry red scar on his little neck. But it has healed very neatly and cleanly and he's had no complications from it. It's still quite pink looking, but the skin looks healthy and I can't fault the neatness of the surgeon.
I imagined the week or 2 following his operation were going to be a nightmare with him poking and pulling at the dressings on his neck, but he didn't touch them once! He was a bit defensive if we touched his neck to clean round it, and tried to wriggle away but apart from that you would never know he'd had it done! What a brave soldier I have! :-)
We were only up in London for the night before and one night after, so we were home before we knew it. 2 weeks later we went back up to have the vagal nerve stimulator switched on. Amazingly we noticed a difference immediately! Literally within minutes! Oliver was sitting on Danny's lap and having a bit of an absence seizure at the time. (Eyes rolling, drifting off into his other world). The specialist nurse switched on the stimulator with a hand-held device held close to the top of Oliver's chest. As soon as the current started to be delivered to Oliver's brain his eyes stopped rolling and he came back to our world.
He sat upright and became aware of his surroundings and then started babbling happily away! (As his developmental age is approximately 1 year old, Oliver's "chatter" is like listening to baby babbling and yelling). He beamed a massive smile at the nurse and then started to try and eat the device she was holding! She narrowly avoided her fingers being chomped on in the process! Trust me, Oliver has a strong bite and a penchant for fingers!
Now the stimulator is switched on, it has a regular pattern of being off for 5 minutes, and then on for 30 seconds. It continually delivers this pattern 24 hours a day and the battery has a life of approximately 10 years. Isn't science strange yet amazing? He seems totally unaware that anything is different. We also have a special "magnet" to keep nearby, so if we see Oliver going into a seizure we can "swipe" over his collarbone and trigger an extra 60 seconds of electrical current to his brain.
It doesn't hurt at all and he doesn't really feel it happening. Maybe a tingle now and then running up the side of his neck and behind his ear, which occasionally makes him have a mild tickling cough for a couple of seconds. This electrical current hopefully "interrupts" the brain's electrical current when it starts to form a seizure. If we "swipe" immediately we can almost stop the seizure in it's tracks!
He will now have 4-6 weekly appointments to increase the strength of the charge until we hopefully (finger and toes crossed!) find the right level to block out all the seizures without the need for extra "swipes". It can take up to 2 years to achieve maximum results. It's a case of finding the right "dose" for each patient. All seizure types vary greatly from person to person, and it may well be that the stimulator only works for some of those patients. It also only works on certain types of seizures, and a patient such as Oliver, who has many different types of seizures, may find it stops some of them but not all.
It also may not work at all....
But it has definitely done "something" to him, and bearing in mind it's only set to the minimum level at the moment, it bodes well that an increased charge should see an increase in the relief it delivers him. Certainly it has already reduced the amount of "extra" drugs we have had to give him, and even more wonderful is that it has allowed more of "Oliver" to emerge. Spending less time in "his other world" and more time alert in ours, his personality is definitely more on show!
Despite his setbacks he is amazingly loving and although physically he is limited, he still reaches up his chubby little arms and pulls a "puppy dog" face when he wants a big snuggle... which is fine by me! He is also a lot louder and more verbal and reaches out for toys a lot more. He loves company and gets very upset if you leave him on his own for a few minutes.
We must get his hearing sorted out as he really comes alive when he wears one of his hearing aids. I say he wears one... he has badly gnawed the other one and it whistles relentlessly when we put it in! I told you he likes to chew! You cannot leave him alone with his hearing aids for a split second because he can whip them out and into his mouth quicker than you can jump up and rescue it. Plus then it's a battle to get it out of his teeth without losing a fingertip! All the while he thinks this is a completely entertaining game! Laughing all the while! I would say he's a monkey, but I swear in a former life he was a pitbull......!
His hearing is now a big priority for me as it will help his social development enormously. His deafness has taken a back seat in light of his epilepsy but I now want that rectified as his happiness and interaction are as important as his health. Well, it is now we have the seizures well monitored and catered for.....
It's important to allow and push for extra medical input and support from those who are trained to do that. It then gives you a bit less medical responsibility and allows you to enjoy more time being just Mummy or Daddy. I have far more time playing with Oliver now and when things get out of hand at home with his seizures I am straight away emailing or texting his consultant in London or our local nurses. It's my "job" to be his Mummy, and yes being Mummy to Oliver is different, in that he is fed through a tube and still in nappies despite being almost 5 years old. I do have to give drugs to him and handle him like you would a baby.
My "job" is not to be Superwoman when I don't know what to do when things get too much for our understanding. Obviously Me and Danny have learned a huge amount on this journey, and we are also trained to give drugs that not even paramedics are allowed to give! Honestly! So we are "nurses" in that sense and that's part of being a parent to Oliver. But we are also allowed to enjoy him and play with him too, so I'm much more open about my feelings and quite readily demand more medical help from those whose job it is to give that.
I'm actually grateful for my craziness last year because at least it allowed me to spill out my concerns and share out the responsibility. I'm a woman who gave birth to a baby, and I never really had the chance to be a Mummy before that image was whipped away and replaced with huge amounts of knowledge and medical jargon swimming around in my head.
Oliver went from my breast, to a bottle, even briefly learnt how to use a "big boy's" cup, to a coma, to being fed through a tube.... It all flowed so quickly, one thing after another, after another and my feet barely touched the ground as my head focused on learning and getting things right. But at the moment we are Mummy and Daddy, and loving the time we spend with our little boy. He is so beautiful and rewarding. He captivates everyone who meets him. He makes us feel special just being near him.
It helps enormously that we have the support of Demelza hospice, in Sittingbourne, Kent. (You can find the link to it, if you click on "SOCIAL" at the top-left hand corner of this site... DONATE! lol). It is an amzing charity and the hospice itself is a Godsend when we need a break. We have been there a few times now and the minute we walk in the door there are "Motherly" women with their arms outstretched "oohing and ahhing" over Oliver, ready to take him off to the sensory or music room whilst we are taken off to our en-suite bedroom. We get to relax, have the chef cook all our meals, have a walk in the gorgeous garden, soak for hours in the jacuzzi with Oliver. I can then ask one of the nurses to take Oliver off for his bath and get him in his pyjamas.
They give all his medicines too so we really can be just "Mummy and Daddy" for a few days. Except it's like being a rich Mummy. I feel quite posh asking his nurse to take him for his bath, whilst I soak some more or go for walk or disappear upstairs for a sleep. Oh how the other half live! lol :-)
We are also lucky in that we live right near where the Demelza community team is based in East Sussex. Oliver has the most amazing nurse Donna, and although at first I had reservations about a stranger looking after my son, meeting her soon put our minds at rest. If I've been up during the night with Oliver, and wake up late the next morning, I'll ask Danny; "Where's Oliver?" and if he says that Donna has taken him out I now just shrug my shoulders and not turn a hair. I don't watch the clock or worry at all. We love her so much and trust her. She has taken him to his appointments, or to the zoo etc. She is wonderful and warm and the best support at the end of the phone for us at any time.
We also have 2 days a week where support workers from Demelza community team come and give us respite at home. They play with Oliver in his sensory room, or bath him, or take him to feed the ducks at the park etc. It gives us a few valuable hours to catch up with housework or washing. Hmmm about washing.... does the laundry basket mate overnight and have babies I wonder...? I swear the pile never reaches the bottom before more towels, clothes and bedding get heaped back on! But they say a woman's work is never done! They weren't lying!
So that at least brings me up to the present. I am feeling a lot stronger emotionally and have a lot more support. It helps so much to let others know how you are feeling. You can't always be "business-like" when caring for a special-needs child. Your instincts also want to be a "normal parent", to wash and feed and dress and play with with your child like any other Mum and Dad. That can be pushed to one side when you constantly have your "nurses head" on. So take a tip from me STOP TRYING TO BE STRONG AND SEEK SUPPORT FROM THOSE WHOSE JOB IT IS TO GIVE IT!!!
Oh one last piece of happy news before I go, my friend's who lost their son Arthur; are expecting a new baby! She is currently 13 weeks pregnant and I'm so happy! What a wonderful new chapter of their lives is about to begin for them! Oh now I have happy tears in my eyes!
R&R, I'm sending you all my love and truly couldn't wish you anymore happiness if I tried! x x x
Today we went up to London to the Evelina children's hospital. It was a 2-day trip so we could take Oliver to 5 appointments. The first thing we attended was an EEG brain scan. Then we went to his pre-assessment clinic for tomorrow's anaesthetic. Then followed a specialist feeding clinic. Then we had some time to book into the parents accomodation Gassiot House and have a stroll around Westminster and have some dinner. Back at our room we were all asleep by 10pm, exhausted from the appointments and travelling.
January 29th 2009
We had to be up very early to give Oliver his usual anti-epileptic drugs as he wasn't allowed any fluids after 6am. We checked out of our accomodation and were in the hospital by 7.45am. Oliver had his general anaesthetic and whilst asleep had a lumbar puncture, blood tests and an MRI scan on his brain. He took a long while to fully recover from the anaesthetic so we left the hospital late afternoon and got home at 8pm. We were all shattered.
February 2nd 2009
Oliver had an appointment today at our hospital for speech and language therapy, occupational therapy and physiotherapy. Daddy took him and I had a couple of hours at home to myself. Nice long read of my book in the bath. Bliss!
February 9th 2009
Our teacher of the deaf came for a home visit today accompanied by our early years support worker. They are hoping to get Oliver into nursery after Easter with his own special one-to-one teacher!
February 10th 2009
Today Oliver had an appointment to see his geneticist. She told us she had attempted every known test she could think of on his blood and DNA and could find no underlying condition to explain his problems. Of course we are still awaiting the results of his recent lumbar puncture and MRI scan...
February 11th 2009
I had an appointment today to see my osteopath as I suffer with Fibromyalgia, similar to rheumatoid-arthritis. It started whilst I was pregnant with Oliver and has become worse as obviously we have to carry him around. I hope I'm not left too sore as I have college tonight. I am learning British Sign Language as I want Oliver to be able to mix comfortably with the both the hearing and deaf communities.
February 24th 2009
Oliver saw his paediatric consultant today. He has found out from Oliver's neurologist that the results are back from the lumbar puncture and the MRI scan. Everything almost certainly points to an underlying condition called Mitochondrial Disorder. We feel quite relieved as finally we appear to be getting some answers as to why Oliver is the way he is and may now be able to really give him some fully appropriate treatment.
February 26th 2009
Our teacher of the deaf came for a home visit today. She is also our keyworker which means she helps co-ordinate appointments and makes sure every one of the people who work with Oliver all receive copies of each other's reports. That way they can each tailor-fit his care from their department to allow for input and results from other departments.
My parents, daughter and son-in-law also arrived at lunchtime to spend the afternoon with us. They all looked after Oliver in the evening so me and Danny could go to the cinema. It was so nice to have a couple of hours to be a "couple". We held hands as we walked there and back and shared sweets and drinks as we lost ourselves into the film. It was a really special night. We "found" each other again, which is something we must keep going. Sometimes it's so easy to get lost amongst all the appointments, worry, sleepless nights and medical results.
March 1st 2009
The room is spinning and I can't breathe properly. My heart is racing so hard you can visibly see the pulse in my neck. I have just found out what Mitochondrial Disorder actually is. Our bodies have loads of cells called Mitochondria. These cells carry the energy from our food around the body ensuring our vital organs are being fed. In Oliver's case his brain is not being fed properly, causing his deafness and epilepsy etc. It is why he is so developmentally behind his biological age. Mitochondrial Disorder has no cure, no treatment and is a life-limiting disease.
March 2nd 2009
Today was Oliver's family service plan meeting. A chance for us to meet up with Oliver's medical providers and come up with a plan for the next few months as to what aims we have and want to achieve. It is all part of the keyworker scheme. These meetings are so helpful to us as a family but today was a sad meeting when I told them all that Oliver almost certainly has Mitochondrial Disorder.
March 7th 2009
We held a party at our house today for my parent's 50th wedding anniversary. My Aunts and Uncles and some cousins came and we had a full house! It went really well and made us happy to give something special back to my Mum and Dad after all the support they give us. I think the planning of it and organising the day gave me something to focus on.
I still feel like a part of my heart is numb and I'm finding it hard to deal with Oliver. I can feel myself withdrawing from him slightly as if I'm afraid to feel my emotions about him too deeply. It was sad to explain these latest findings to my family. He is such a gorgeous little boy and he just doesn't deserve this.
March 9th 2009
Oliver had another appointment today with physio, speech and language and occupational therapy.
March 12th 2009
A double whammy of a day today. Firstly I had a hospital appointment in the morning. I had a colposcopy and 2 biopsies taken to test me for cervical cancer after my recent smear showed abnormalities. I feel like each day is passing in a blur at the moment. It's just one worry after another and I have to wait 6-8 weeks for my results. I couldn't stop crying after my appointment.
In the afternoon Oliver saw his paediatric consultant to review his medicines and treatment. On a good note his recent course of ACTH injections and the steroids he is also on (along with his other medicines) have increased his weight. He seems a little bit more robust and his epilepsy appears to be under better control.
March 19th 2009
Another hospital trip today. This time for yet another EEG scan. Danny laid down on the bed while Oliver had the wires attached to his head and had the scan. Oliver was hopefully expected to doze off... which he didn't although he did lay still and quiet. However Daddy had a nice nap while laying there! Men!
March 23rd 2009
Back to the hospital today, this time to see Oliver's neurologist. We went armed with a list of questions about Micochondrial Disorder and to find out specifically how it affects Oliver in this case. We wanted straight answers. His neurologist said they don't have a 100% diagnosis yet, although he is almost certain that it is Oliver's underlying condition.
This is based on Oliver's problems collectively and the fact they have pretty much exhausted every other possibility. Oliver will need to have an echo-cardiogram and 2 biopsies taken under general anaesthetic, one of skin and one of muscle. His neurologist confirmed that Mitochondrial Disorder is life-limiting and told us we will almost certainly outlive Oliver.
I left the appointment and collapsed in the corridor. I was sobbing uncontrollably and could not stop crying for 3 hours. My head is screaming in agony.
March 24th 2009
Another home visit today from our teacher of the deaf/keyworker. Today she focused on us rather than on Oliver. It was nice to just sit and cuddle Oliver as he dozed off in my arms and pour out how I feel to someone outside of the situation. I find lately as I'm talking that i go blank and vague and seem to drift off. I think it must be all the stress I'm feeling.
March 25th 2009
Danny had another appointment today with his psychiatrist. Danny has Bipolar and with everything that is happening lately, understandably his medication is not quite cutting it! His doctor wants him to increase one of his anti-depressants.
NO, NO, NO! Danny came back from his appointment and we set about getting Oliver into the bath. As we laid Oliver on the floor to undress him he suddenly went into full-blown Grand Mal seizures. He has never had these type of seizures before and I can't understand why it happened. His recent EEG showed a much better control of his epilepsy.
I immediately phoned straight through to Oliver's paediatric consultant who told us to ring an ambulance and get Oliver straight into the hospital where he would meet us at the children's emergency assessment unit.
The ambulance rushed us in with full sirens and blue lights flashing. By the time we arrived at the hospital Oliver had had 15 of these seizures in a row. The hospital gave Oliver 3 types of anti-epileptic drugs before the seizures calmed down. He was also on oxygen and a drip as he couldn't swallow properly so his fluids were low. Danny stayed the night in the hospital with him and I came home to collect some more nappies etc.
March 26th 2009
I went back up the hospital today and Oliver was allowed to come home. He is not 100% back to himself and his arms have been left with some involuntary twitching. I can't look at him without tears welling up in my eyes. We have now got a full supply of his medicines at home and also an emergency anti-epileptic drug to give him if he ever has those huge fits again. I keep having palpitations and night-sweats and feel like I want to sleep for days at a time. I can't stop holding Oliver and snuggling into him and kissing the sweet soft skin on the back of his neck. I don't know another child who is worshipped more than we do him.
November 29th 2009
So much has happened since I last wrote on here, that I just don't know where to start. Phew! Let me try and put it into some sort of order.
Things have been happening one after another, after another. I just haven't had the time, nor the inclination (or energy to be honest) to sit down and update the events that have occurred in the last 6 months.
Firstly in late March Oliver had a full body seizure, Grand Mal (Tonic-Clonic). We had just given him a bath and laid him on our bedroom floor to get him dried and dressed and his whole body began to spasm. His eyes were rolling backwards and I was panic stricken. He had never had one of those types of seizure before.
I immediately grabbed the phone and rang our hospital to speak to our paediatric consultant. Luckily he was there and took the call. He told us to get an ambulance straight to the hospital and that he would let them know we were on our way.
At the hospital Oliver was given about 3 different emergency drugs, each one 20 minutes after the previous, until eventually his body stopped seizing and he relaxed and went calmly to sleep. He had to stay in hospital overnight so they could keep an eye on him but he came through it fine and we took him home the next day.
Me and Danny were so frightened by the whole thing.
We were given a drug called MIDAZOLAM to keep at home in case it happened again. Two weeks later Oliver did the exact same thing again. We followed our instructions and waited 20 minutes to see if it continued. After that we gave him the drug. We then sat by him and waited for a further 20 minutes and the seizure continued. We gave a second dose and waited again. Then after 20 minutes we phoned for an ambulance.
Oliver went back to hospital and was given more drugs. Still he continued to seize. He was then taken to intensive care where the doctors decided they had no choice but to induce a coma and shut his struggling little body down. He was covered in wires and tubes and canulas with different drugs being pumped into him. He was also being ventilated as his lungs couldn't work on their own.
I can't even put into words how I was feeling. The whole world felt like it stopped still. So did my heart.
At 5am the 3 of us were rushed in a retrieval ambulance up to the Evelina children's hospital, in Westminster, London. Oliver was in their intensive care ward for 2 weeks in a coma. Doctors were telling us "IF" he survived he would most likely be severely brain damaged.
On Good Friday Oliver was baptised in his hospital bed. When the Holy water was placed on his tiny forehead his eyes flickered and slightly opened! Although he was puffy, covered in bruises from so many needles and blood tests, face bloated and body limp, our little boy was fighting back!
After a further week in hospital we brought him home. He was not the same boy he had been before. He was not very responsive to us. He didn't giggle or smile or make much eye contact. We began to fear that the doctors were right, that he had been left with brain damage. It was difficult for him to eat or drink safely as his mouth seemed more slack and he couldn't seem to coordinate his swallow properly. However gradually over the following weeks he became more animated and started to respond to us and play again!
Oliver was back!
Apart from the difficulty with feeding he was pretty much the same boy as before! During this whole recovery period we were also busy with something else...packing up our house as we were moving. The council had awarded us a bungalow to make it easier to cope with Oliver. No more stairs to deal with! Talk about a stressful time!
Anyway we moved to our new place on 29th May, 2 days before Oliver's 3rd birthday! We spent most of June unpacking boxes and trying to organise the bungalow, in between Oliver having his usual appointments with physiotherapy and audiology etc. Oliver's feeding was going from bad to pretty much non-existent and he lost so much weight.
Then in July Oliver went back up to the Evelina hospital to have an operation. He had a feeding tube called a gastrostomy fitted. It is a plastic bendy tube that goes directly through the skin of his belly straight into his stomach. So about 4 inches above his belly button he has this tube dangling out of his belly!
It has made all of our lives so much easier! We don't panic that he hasn't had enough calories, we don't have to try and force him to eat, he doesn't have to sit there crying clearly not enjoying mealtimes, and no more trying to pin him and make him swallow foul tasting drugs!
It's such a shame that this little boy who used to love his food and drink now has no appetite and isn't safe to swallow properly, however this gastrostomy has been wonderful for us all. We now just measure out all of Oliver's drugs into syringes, and a special fortified milk-feed, screw the syringes onto the end of the tube and in it all goes! No tears, no awful taste for him, no choking or gagging and me and Danny don't sit there for an hour after every mealtime shell shocked and feeling cruel.
Oliver has put on weight and is now quite a chunky little monkey!
So that brings us up to July. Another busy, busy, busy month. This time attempting to get on with some decorating and of course the usual backwards and forwards to appointments. Plus at around this time Oliver's anti-epileptic drugs just didn't quite seem to be doing their job 100%. He didn't have any of those Grand Mal seizures, but he started to get a lot of absences (staring into space) and also drop attacks (one minute sitting happily playing, the next his whole body would crash forwards).
I contacted our consultant again and various drug doses were tweaked here and there. It would improve a bit here, a bit there, then it would start again after a day or two. I could feel my brain really struggling to cope with the constant worry. Some days me and Danny were best friends, the next we would barely speak to each other, other days we were snappy and defensive and other days we just wanted to sleep all day.
The other thing terrifying me was the worry about the cells they had found on my cervix. In August I had a little operation to remove one-third of the surface of my cervix. The cells turned out to be C.I.N stage 3 which basically means my entire cervix was covered with potential cancer. For ages afterwards I kept having bad dreams and disturbed sleep and I had all these visions of Danny being alone to cope with Oliver. I guess it was the pent-up fear just pouring out of me afterwards.
A couple of weeks afterwards, in September, we headed back up to the Evelina hospital so that Oliver could be "observed" and to also try and get his drug levels sorted as his seizures were becoming worse and more frequent. It was decided that as Oliver seemed to be so resistant to drugs it would be best to try him on the Ketogenic diet. Obviously it would be easy for us to give this diet to him as they would simply provide us with a new liquid to replace his milk-feed, but I sympathise with any parent who has to give the ketogenic diet to their child who eats normal food orally...a) as their child would well want to eat the things their friends do (crisps, fruit, chocolate, vegetables etc) and b) because what you do have to feed them is utterly disgusting and goes against all the things we try NOT to feed our children, huge amounts of fat etc!
It was discovered in the 1920's that if a person with epilepsy didn't eat for a few days, (perhaps due to being in bed with a cold) then their seizures seemed to improve, if not disappear, but when they started eating again the seizures would return.
When we eat our body stores any fat for "emergency use only" and instead it uses carbohydrates to burn for energy. When we are starved of food then the body has no carbohydrates to use for energy. So the body goes into emergency mode and starts to burn off the fat that is in storage. This "emergency mode" then causes the body to produce a chemical called ketones, and it's this chemical that can somehow help to fight against epilepsy!
So basically the diet is pretty much made up of fat, fat and more fat, with a tiny amount of protein and carbohydrate. The body (now in its emergency mode) will continue to thrive from the energy from the fat instead, and all the time the body keeps making ketones and those ketones fight the seizures! So we spent another 2 weeks in hospital with Oliver while the new ketogenic formula replaced his old milk-feed, and it was all strictly monitored to make sure he was safe.
We also had to test his urine morning and evening to see if there were good strong ketones present in his system. Every single time; his ketones were present and were also a good high amount of them. However, despite a tiny improvement within the first couple of days, within no time we realised that his seizures were creeping back in. So we got home on the 22nd of October, with Oliver now established on this new diet, and plenty of ketones in his system.
Just like every other drug that Oliver has tried, the Ketogenic diet failed to help him. Each day more and more seizures were creeping back in causing more of his personality to withdraw. We were now giving lots of emergency drugs at home and even they seemed to stop having any great effect.
On 5th November Oliver was again rushed to hospital in an ambulance. He was what they call "Status Epilepticus", basically in a complete hold of the seizures. He was given yet more drugs at the hospital but just like back in April they just couldn't snap him out of it.
So he was taken back into intensive care and a second coma was drug-induced.
At 3am I went with him in the retrieval ambulance, back up to the Evelina hospital. Danny went home to pack a suitcase and got the train up the following day. I just sat in the back of the ambulance completely numb. Wondering what could possibly be tried on him that hasn't already been tried.... and failed.
Oliver spent 4 days in intensive care and a further 6 days on the neurological ward. It was decided to stop the ketogenic diet as it wasn't working for him so they gradually re-introduced his normal fortified milk-feed.
They also started him on a new drug. On top of his other 5 drugs he now has a new one called CLOMETHIOZOLE, or HEMINEVRIN as it is known. This one must be given every 4 hours, the others are 3 times a day. His milk feeds are 5 times a day and he has water 4 times a day too. Pretty much every hour on the hour me and Danny are putting something in his gastrostomy tube.
So far this new drug has been a great success, but sadly the drug is to be discontinued early next year. Oliver's neurologist has had spare amounts of it flown in from all over Europe, and luckily it has a long shelf-life, however only a few months-worth of the drug could be obtained.
If Oliver has any seizures in the meantime we are allowed to give extra doses of this drug to treat it immediately, followed by rectal diazepam if that fails. The drug worked brilliantly for a few weeks, however the absences and drop attacks have slowly started to creep back in. Not anywhere near as frequently or as strongly as before, but they are there in the background threatening to make themselves known. So we have had to give those extra doses a few times in the last couple of weeks. It will probably mean his current dose has to increased, which will almost certainly help in the short term. However he is so drug-resistant no doubt the dose will continue to be increased, which in turn means the supply will run out sooner.
I asked his epilepsy specialist if he could be a candidate for neuro-surgery? She explained that sometimes certain areas of the brain can be removed or disconnected to prevent the epilepsy from "connecting". However she said as Oliver has varying types of seizures it would indicate that many areas of the brain have the activity, so it is unlikely that neuro-surgery would be an option.
There is a possibility of him having a vagal nerve stimulator fitted. It is sort of like a pacemaker and it is inserted into your collarbone. It transmits a signal into the vagal nerve at the base of the brain and can "override" the epilepsy activity. However before that can be considered they would first need to be sure that he is a good candidate for the operation.
It would mean further tests in hospital, especially a prolonged EEG scan, (called telemetry) where he would also be video recorded whilst the EEG is carried out. All of his test results would then be thoroughly reviewed at King's College Hospital and a decision would be made. But it is a big consideration and quite a long process of tests and results before it could happen.
At the moment he is very lively and happy and not having too many "extra" drugs for seizures. Maybe a couple of times a week which is a big improvement to a couple of times a day...if not more!
He is inquisitive and playful and really connecting with us at the moment. Despite his lack of motor skills and mobility he is a delightful and happy little boy!
And of course he continues to be the brightest shining light in our lives!
December 9th 2009
After a few decent days with Oliver's new drug, he has gradually had an increase in the amount of seizure activity he is having. It's not as bad as it has been in the past but any downward slide and we just cannot help ourselves from feeling depressed about it. The Christmas cards are arriving daily and our lovely lit decorated tree has pride of place in our front room, but I can't help myself from looking at it and wondering why on earth there are Christmas things around us. Where did the year go? Is it really December already? I am usually one of the first to put up our tree and be organised and although I am going through the motions I just feel kind of disconnected to the world around us.
Today Oliver is not well at all. After our recent trip to London the 3 of us came home with colds, yet we all still have hacking coughs that just won't shift! Oliver's cough is so forceful that it has made him sick twice today already, and those telltale seizure signs are making themselves increasingly present. I have had a bad time trying to sleep lately and even when I do manage a few hours I always seem to have amazingly realistic detailed dreams and wake up in a sweating panic! I think I need to see my doctor about this. When I have time...or the energy to get out of pyjamas and actually leave the house.
December 10th 2009
Oliver's seizures are becoming more frequent again today and we have given him quite a few doses of extra medicines. Still nothing seems to be working for any great length of time. He seems so distressed and distant and is having trouble sitting up without continually flopping over. I don't know how many more doses we can give without having to call for back-up. Also Danny took him to our doctor and he was given antibiotics and an inhaler for his continuing cough. At least that has eased his discomfort and he hasn't been sick again.
December 11th-12th 2009
Finally at 2.30am we had no choice but to give Oliver paraldehyde and ring for an ambulance at the same time. The paramedics arrived and the 3 of us were once again taken to our local hospital.
Oliver was kept in resussitation for a few hours while they did a thorough check-up and once his oxygen levels increased he was transferred to the children's ward. Luckily for us the ward was fairly empty so Danny slept on the parent's bed next to Oliver and I was allowed to sleep in a bed in the empty ward next door. Well, I slept at 6.30am for 3 hours at least!
Our wonderful general paediatric consultant was on call today and he made lots of phone calls to the Evelina hospital in London and discussed Oliver with his neurologist based up there. The new drug that he is on has now been doubled each dose and after tea-time we were allowed to come home.
Luckily for me, Danny had slept a lot longer than me in the hospital and so he wasn't tired when we got in. He dealt with Oliver while I had a shower and I then slept from 8pm until 2am! 6 whole hours in one go! Typically, I still woke up sweating and having some weird nightmare about an airfield... (I have no idea what that was about!) but at least the sleep was much needed!
When I woke up Danny and Oliver were still awake although not very long after they both went to sleep. I guess on the plus-side I had some very-much needed sleep... the downside is that I'm now wide awake and typing this at 6.33am.....hmmm, might be time to make a coffee and finally write out my Christmas cards! I'm actually feeling like the Christmas spirit is rubbing off on me...and the thought of Oliver opening his presents on Christmas morning is even enough to melt Ebenezer Scrooge's heart! Who could resist that angelic face lit up with joy and happiness!
February 12th 2010
I can't believe how much time has passed since I last wrote on here. I did manage to write out my Christmas cards eventually, but Christmas arrived so quickly and I was nowhere near as prepared as I normally am.
On Christmas eve my family came round, (it is my Dad's and my daughter's birthday!) We had a nice buffet lunch whilst chatting and listening to cheesy Christmas cd's. When everyone left on the evening I had a meltdown and couldn't stop crying. No matter how hard I tried to "connect" with the festive spirit I felt like I was in some alternate world looking through the window into my life.
On Christmas day me and Danny started to open presents but it was clear that Oliver was not very good. He wasn't really connecting with us and kept flopping forwards or to one side. He was just very "out of it". We took a break from presents as it was clear Oliver had no idea what was going on. I used my mobile phone to video Oliver's behaviour as I felt sure we would be taking him to hospital and I wanted to show the doctors exactly what it is that Oliver does.
We eventually made the decision to give him extra emergency drugs whilst keeping a watchful eye on his condition, checking his pulse and breathing etc. He eventually fell asleep and me and Danny made the best of the rest of the day but to be honest for the first time in my life I actually hated the whole "Christmas day" thing. You plan it for ages and create such expectations in your mind only to leave yourself wide open to potential disappointment. I started thinking maybe life would be better taking each day as it comes and stop forward-planning. I also thought about other people maybe sitting alone, missing loved ones, not with their families or children, not in the place in their lives they imagined they would be. How disappointing the whole Christmas day thing must be for them too.
I'm not going to start muttering "humbug" at Christmas, but I just feel in future we may be happier not putting so much stock into it. And no matter how hard I tried I couldn't stop imagining children the world over ripping open presents and shrieking with excitment, zooming over relatives feet and ankles on their new bikes...
And there were we sitting looking at our beautiful boy, totally unaware of his new toys, falling and flopping uncontrollably in his wheelchair and trying to look at us with his eyes rolling backwards into his head.
As you can probably tell I am suffering from depression. It has gone from mild to moderate to now severe. All I want to do is either snuggle up to Oliver and hold his beautiful face or escape for a while being on the computer. I avoid going out or mixing with people. They would only ask "how are you?" to which I have 2 choices of answer to give; lie and say "yeah I'm great" and keep my feelings hidden, or tell the truth and watch their facial expression say "I wish I'd never asked her now!"
On the plus side we have another fabulous (NOT!) trip to London planned. Oliver has to go into hospital for 4-5 days for some more tests in March. It's called telemetry, what he is having done. Basically it will be an EEG (brain wave) test, except that the wires are attached to his head continuously for a few days and he will be videoed at the same time. It is not painful but I'm not sure he will be too happy about about wearing a helmet day and night.
The results will then compare what Oliver may be doing on the video, to what was happening in his brain at that exact second. For example when he goes floppy, does the brain show a seizure at that time...??? Or could it be an after-effect of a previous seizure, or a build up to an oncoming seizure... it hopefully will give us a better understanding of what Oliver's brain is doing at the times he is displaying certain behaviours. All with the hope of knowing when to give extra drugs or not, when to worry or not.
One of us has to stay by Oliver for the entire stay, so Danny has said he will sleep on the window seat in the hospital side-room. Other parents have told us how hard and uncomfortable they are so it's a good job Danny could sleep pegged up by his ears on a washing line! I will stay at the Ronald McDonald house again and this time my daughter Amy should be coming with us, so she can stay with me. Which is good as I think I would go mad on my own each night!
Last month we decorated Oliver's bedroom and it looks lovely. Soft blues with a subtle car-theme. Nothing too overpowering as he is developmentally behind his biological age, so I still wanted a kind of nursery/toddler feel, not a boisterous pre-school boys room. Oliver can't be left alone as he wouldn't be safe so his bedroom is purely for sleeping in. At night he has various projectors and lights reflecting on the ceiling, which is nice and visual because of course he doesn't have his hearing aids on in bed! (another reason he can't be left alone... hearing aids often end up being chewed!)
The next room to be decorated will be Oliver's sensory/play room. We have been awarded a grant which is paying for some padding for the walls and floor of our spare bedroom to give oliver a safe space to roll around and play and if he does drop suddenly he can't bang his head! That room is going to be my project and i have a castle kind of theme in mind...he is our little prince after all!
April 23rd 2010
Where is the time going? Well we have had Oliver's telemetry tests done in London, and although we are waiting for the full reports, the initial view is that Oliver is having far more epileptic activity than they first thought. As is usual with Oliver, despite increasing drug doses or tweaking things here and there, he is better for a few days and then the seizures take over his life again.
He started nursery last week...finally! (only a year too late!) We managed to arrange the meetings needed for him to be ready for nursery...or should I say for the nursery to be ready for him. Obviously there is a lot of red-tape to get through so that the nursery staff are confident about looking after a child like him. Nurses had to go in and train the staff on how to give Oliver his medication. It's a mainstream nursery but he is in the pre-school room with children aged 6 months-3 years. Even though he will be 4 in June it is a better environment for his developmental age. The staff are lovely, especially Oliver's one-to-one keyworker! :-)
He could have gone to a special nursery, but the nearest one to our home is quite a distance and not something we can consider as we don't own a car. This nursery is literally a 3-minute dash away from our home, so if anything too "medical" happens we can get there quickly. Just as well, as he has only been for 2 sessions so far and both times I have had to run over and pick him up half an hour early as he has needed emergency drugs. These drugs are given rectally and he then needs to be carefully monitored after having them. This is something only we or trained nurses are allowed to be responsible for.
Still, this was the best solution all-round. We have an agreement that for Oliver to be allowed to go there, me and Danny are on "standby" at all times. So we have a few hours break, Oliver has a few hours playing and seeing other children and if he needs urgent medical care we are just over the road to run back to him! Far better to do things this way, then at least he has some experience of nursery.
He is due to start school in September, so the statementing process has begun for that. A statement is a government approved "contract" for children like Oliver for when they enter school. It basically draws up a huge list of his needs and concerns and the school then has a legal obligation to make sure that his curriculum covers both his educational needs as well as his physical, mental and medical needs. The school is also given extra funding to help them to meet the requirements of this "contract". All of Oliver's doctors and care providers have to input their perspective on him to make sure that each and every detail of his needs are listed in the statement.
So as well as providing an education, if the statement says he needs X amount of physiotherapy, or speech and language therapy, or specialised seating equipment for example...then that is what the school are "contracted" to do. Everything must be taken into consideration, from what textures of food a child can manage, to their drug regime, to whether they need constant one-to-one support.... everything you can imagine is thought about and the contract is set. It is a very long process to consider every aspect of a child's needs and as his parents we have to add the seal of approval.
I have almost finished painting Oliver's sensory/play room. His specialist padded walls and floor have been delivered so once I have finished decorating that can all go in with a big selection of toys and things of interest on the ceiling etc. He will finally have a safe enclosure to play in and do his physiotherapy exercises. To be honest the painting is helping me stay focused as I have been in an awful mood for a few days. A friend who I met at the hospital in London rang me a few days ago to say her son had died. He also had a similar epilepsy that was difficult to control and he was a couple of years older than Oliver.
My mind just doesn't know how to deal with the news. Half of me is absolutely devastated for their loss, and the other half is sick with worry as to what that means for us. I know it's depressing, I know it's being negative, I know that I should focus on the fact that Oliver IS here, but I just can't shake myself free of the worry. Oh who am I kidding, "worry" is nowhere near the strength of word needed for how i feel. My heart has sunk so low I feel like it's thumping in my stomach and not my chest anymore.
Sweet Arthur, I am honoured to have known you. Such a handsome face! Such a huge loss to your family. R.I.P little angel and watch over your Mummy and Daddy as they watched over you. Always let them feel your closeness as they are going to need some of your bravery now. Sweet dreams little man. x x x x x :-(
March 9th 2011
I knew I needed to update things but has it really been almost a year since I last wrote on here??? So much has happened and I kept saying to myself "I must add that..." Really, I'm quite shocked at how much time has gone by.
As I wrote last time, my friends had sadly lost their son Arthur. Literally a few days after his funeral Oliver was back up in London to be monitored and to try changing doses, adding in new drugs and taking others away. We spent almost the whole of June and July with him in hospital.
In some respects it gave us a break to "pass all responsibility" to the nurses, but that novelty soon wore off and the whole trip became quite surreal. Spending a longer amount of time surrounded by other children, gave us the opportunity to really get to know a lot of the parents. Initially I found it comforting to make so many new "friends" but as time wore on, the more I absorbed the more I felt overwhelmed.
When you only spend short amounts of time up there, your focus is on your own child, but the longer it drags on the more aware you become of other families and their struggles. You become close to the other children and babies and suddenly your heart is stretched to breaking point. To see such sweet faces all around you, smiling and playing in their beds, tubes and wires coming out of every place imaginable. Yet they play on, oblivious to the strain behind the weak smiles of their grey-faced parents. There is so much sadness, hope, courage, devastation, bravery, relief... I soaked it all up like a sponge and by the time we went home my emotions became numb.
Soon after I started having nightmares and waking up crying and dripping with sweat. The strain and panic and constant worry was spilling out into every single thought I had. I cried buckets over Arthur...in fact just typing his name brings tears to my eyes. All those sweet beautiful brave children...so courageous, enduring test after test whilst their shell-shocked parents watch on unable to help. Not knowing what the outcome will be for their child. You step right into an alternate world, and once you do there is no stepping back into the world you thought you knew before.
Within a couple of months I suffered a breakdown. The evening that things reached breaking point for me, still remains a bit of a blur in my mind. Maybe that's my brain's way of blocking it out. I know it scared the hell out of Danny and my Parents. I left them chatting in the front room and silently left the house and just walked and walked with tears streaming down my face. I ended up sitting on the ground in a car park and I can clearly remember the gravel digging into my legs as I sat there. I don't know how long I was there...maybe an hour or 2, crying the whole time, my head spinning with emotional overload. I found a broken tile next to where i sat. It had a sharp jagged end and i dragged it over and over the skin of my arm. There was something strangely satisfying about it. It felt real. I felt real. Slowly I started to become aware of where I was and I didn't like it. I wanted to be home.
I felt drunk as I walked into our back garden, really dizzy and drowsy. I remember Danny talking to me and my Mum asking me questions. There was also a policewoman but I don't really remember her being there. I know I cried out over and over again "I don't want to lose him".... and still to this day my heart is constantly heavy with fear.
Soon after I began counselling and they upped my anti-depressants to super industrial strength. I began talking a lot more about my fears and being open about it instead of trying to be capable all the time. Danny has been amazingly supportive and taken some quite loud rants from me without flinching! That has helped me so much, to be able to express my feelings and not worry about being judged. I love my son. I worry about his illness. I hate that he is considered "life-limited".... I am normal and supported and loved for being me.
Once things started to improve in my head I could start to appreciate the happiness around me once again. Besides... my daughter and son-in-law needed my Mothering too! We were about to become Grandparents! My daughter was heavily pregnant with twins and this was something positive to help me get my focus back to reality! My Oliver Leslie is now an Uncle to 2 beautiful baby nephews! I am the very proud Nanny of 2 very scrumptious Grandsons; Leslie-james and Joseph-Lee. Now I have 3 gorgeous baby boys to cuddle and fuss over!
Christmas Day was lovely. Amy and Reuben got a new house close to us and we went there for the day. They are both a very capable young couple and made us a lovely 3-course dinner. It was very poshly presented! I highly recommend a meal at their house! lol. I didn't have to lift a finger and it was so nice to take turns holding the bubbas and relaxing with Oliver, sitting and playing with his new toys with him.
It was a real turning point for me emotionally. Surrounded by my lovely family and thinking to myself, "I am so lucky to have 2 beautiful children". The future will bring what it brings regardless of worrying about it. Oliver is here right now and there's no time to waste enjoying the here and now.
In February Oliver finally had his operation to be implanted with his vagal nerve stimulator. I felt so positive about the whole thing and didn't panic at all when he was in theatre. I shed a few tears of relief when he came out and was a bit shocked at the size of the big angry red scar on his little neck. But it has healed very neatly and cleanly and he's had no complications from it. It's still quite pink looking, but the skin looks healthy and I can't fault the neatness of the surgeon.
I imagined the week or 2 following his operation were going to be a nightmare with him poking and pulling at the dressings on his neck, but he didn't touch them once! He was a bit defensive if we touched his neck to clean round it, and tried to wriggle away but apart from that you would never know he'd had it done! What a brave soldier I have! :-)
We were only up in London for the night before and one night after, so we were home before we knew it. 2 weeks later we went back up to have the vagal nerve stimulator switched on. Amazingly we noticed a difference immediately! Literally within minutes! Oliver was sitting on Danny's lap and having a bit of an absence seizure at the time. (Eyes rolling, drifting off into his other world). The specialist nurse switched on the stimulator with a hand-held device held close to the top of Oliver's chest. As soon as the current started to be delivered to Oliver's brain his eyes stopped rolling and he came back to our world.
He sat upright and became aware of his surroundings and then started babbling happily away! (As his developmental age is approximately 1 year old, Oliver's "chatter" is like listening to baby babbling and yelling). He beamed a massive smile at the nurse and then started to try and eat the device she was holding! She narrowly avoided her fingers being chomped on in the process! Trust me, Oliver has a strong bite and a penchant for fingers!
Now the stimulator is switched on, it has a regular pattern of being off for 5 minutes, and then on for 30 seconds. It continually delivers this pattern 24 hours a day and the battery has a life of approximately 10 years. Isn't science strange yet amazing? He seems totally unaware that anything is different. We also have a special "magnet" to keep nearby, so if we see Oliver going into a seizure we can "swipe" over his collarbone and trigger an extra 60 seconds of electrical current to his brain.
It doesn't hurt at all and he doesn't really feel it happening. Maybe a tingle now and then running up the side of his neck and behind his ear, which occasionally makes him have a mild tickling cough for a couple of seconds. This electrical current hopefully "interrupts" the brain's electrical current when it starts to form a seizure. If we "swipe" immediately we can almost stop the seizure in it's tracks!
He will now have 4-6 weekly appointments to increase the strength of the charge until we hopefully (finger and toes crossed!) find the right level to block out all the seizures without the need for extra "swipes". It can take up to 2 years to achieve maximum results. It's a case of finding the right "dose" for each patient. All seizure types vary greatly from person to person, and it may well be that the stimulator only works for some of those patients. It also only works on certain types of seizures, and a patient such as Oliver, who has many different types of seizures, may find it stops some of them but not all.
It also may not work at all....
But it has definitely done "something" to him, and bearing in mind it's only set to the minimum level at the moment, it bodes well that an increased charge should see an increase in the relief it delivers him. Certainly it has already reduced the amount of "extra" drugs we have had to give him, and even more wonderful is that it has allowed more of "Oliver" to emerge. Spending less time in "his other world" and more time alert in ours, his personality is definitely more on show!
Despite his setbacks he is amazingly loving and although physically he is limited, he still reaches up his chubby little arms and pulls a "puppy dog" face when he wants a big snuggle... which is fine by me! He is also a lot louder and more verbal and reaches out for toys a lot more. He loves company and gets very upset if you leave him on his own for a few minutes.
We must get his hearing sorted out as he really comes alive when he wears one of his hearing aids. I say he wears one... he has badly gnawed the other one and it whistles relentlessly when we put it in! I told you he likes to chew! You cannot leave him alone with his hearing aids for a split second because he can whip them out and into his mouth quicker than you can jump up and rescue it. Plus then it's a battle to get it out of his teeth without losing a fingertip! All the while he thinks this is a completely entertaining game! Laughing all the while! I would say he's a monkey, but I swear in a former life he was a pitbull......!
His hearing is now a big priority for me as it will help his social development enormously. His deafness has taken a back seat in light of his epilepsy but I now want that rectified as his happiness and interaction are as important as his health. Well, it is now we have the seizures well monitored and catered for.....
It's important to allow and push for extra medical input and support from those who are trained to do that. It then gives you a bit less medical responsibility and allows you to enjoy more time being just Mummy or Daddy. I have far more time playing with Oliver now and when things get out of hand at home with his seizures I am straight away emailing or texting his consultant in London or our local nurses. It's my "job" to be his Mummy, and yes being Mummy to Oliver is different, in that he is fed through a tube and still in nappies despite being almost 5 years old. I do have to give drugs to him and handle him like you would a baby.
My "job" is not to be Superwoman when I don't know what to do when things get too much for our understanding. Obviously Me and Danny have learned a huge amount on this journey, and we are also trained to give drugs that not even paramedics are allowed to give! Honestly! So we are "nurses" in that sense and that's part of being a parent to Oliver. But we are also allowed to enjoy him and play with him too, so I'm much more open about my feelings and quite readily demand more medical help from those whose job it is to give that.
I'm actually grateful for my craziness last year because at least it allowed me to spill out my concerns and share out the responsibility. I'm a woman who gave birth to a baby, and I never really had the chance to be a Mummy before that image was whipped away and replaced with huge amounts of knowledge and medical jargon swimming around in my head.
Oliver went from my breast, to a bottle, even briefly learnt how to use a "big boy's" cup, to a coma, to being fed through a tube.... It all flowed so quickly, one thing after another, after another and my feet barely touched the ground as my head focused on learning and getting things right. But at the moment we are Mummy and Daddy, and loving the time we spend with our little boy. He is so beautiful and rewarding. He captivates everyone who meets him. He makes us feel special just being near him.
It helps enormously that we have the support of Demelza hospice, in Sittingbourne, Kent. (You can find the link to it, if you click on "SOCIAL" at the top-left hand corner of this site... DONATE! lol). It is an amzing charity and the hospice itself is a Godsend when we need a break. We have been there a few times now and the minute we walk in the door there are "Motherly" women with their arms outstretched "oohing and ahhing" over Oliver, ready to take him off to the sensory or music room whilst we are taken off to our en-suite bedroom. We get to relax, have the chef cook all our meals, have a walk in the gorgeous garden, soak for hours in the jacuzzi with Oliver. I can then ask one of the nurses to take Oliver off for his bath and get him in his pyjamas.
They give all his medicines too so we really can be just "Mummy and Daddy" for a few days. Except it's like being a rich Mummy. I feel quite posh asking his nurse to take him for his bath, whilst I soak some more or go for walk or disappear upstairs for a sleep. Oh how the other half live! lol :-)
We are also lucky in that we live right near where the Demelza community team is based in East Sussex. Oliver has the most amazing nurse Donna, and although at first I had reservations about a stranger looking after my son, meeting her soon put our minds at rest. If I've been up during the night with Oliver, and wake up late the next morning, I'll ask Danny; "Where's Oliver?" and if he says that Donna has taken him out I now just shrug my shoulders and not turn a hair. I don't watch the clock or worry at all. We love her so much and trust her. She has taken him to his appointments, or to the zoo etc. She is wonderful and warm and the best support at the end of the phone for us at any time.
We also have 2 days a week where support workers from Demelza community team come and give us respite at home. They play with Oliver in his sensory room, or bath him, or take him to feed the ducks at the park etc. It gives us a few valuable hours to catch up with housework or washing. Hmmm about washing.... does the laundry basket mate overnight and have babies I wonder...? I swear the pile never reaches the bottom before more towels, clothes and bedding get heaped back on! But they say a woman's work is never done! They weren't lying!
So that at least brings me up to the present. I am feeling a lot stronger emotionally and have a lot more support. It helps so much to let others know how you are feeling. You can't always be "business-like" when caring for a special-needs child. Your instincts also want to be a "normal parent", to wash and feed and dress and play with with your child like any other Mum and Dad. That can be pushed to one side when you constantly have your "nurses head" on. So take a tip from me STOP TRYING TO BE STRONG AND SEEK SUPPORT FROM THOSE WHOSE JOB IT IS TO GIVE IT!!!
Oh one last piece of happy news before I go, my friend's who lost their son Arthur; are expecting a new baby! She is currently 13 weeks pregnant and I'm so happy! What a wonderful new chapter of their lives is about to begin for them! Oh now I have happy tears in my eyes!
R&R, I'm sending you all my love and truly couldn't wish you anymore happiness if I tried! x x x
