Overcomer

Ten days seizure free!!! Yaay!
Just wanted to share!
We started on a new drug a few months ago, and it seems like there has finally been a change.  Seizure numbers dropped dramatically and then, he last one was 10 days ago.  Fantastic news? It sure is.  With it however come other changes.  Imogen is a unique mix (as we all are I guess) but when something changes there is always a knock on effect. This time her behaviour has been affected and she swings widely from moodiness to crazy bouncing off the walls hyperactivity with the swiftness of a mouse trying to dodge the capture of an owl meaning she is still awke well into the night and then awake again bright as a button at 7am! We also discovered years ago that when she had more seizures her dystonic, tight arm would loosen off.  So, it is no surprise that her arm has tightened up again.  She is amazing at coping with this though; she never ceases to amaze me when I find her folding, cutting, sticking etc using her chin, elbow, foot or anything else available.  Things that I know I would get unbelievably frustrated with and probably throw across the room she takes in her stride and beavers away at. Yes it takes an inordinate amount of time and she doesn't run on any time that relates to GMT but do you know what?
I've decided I DONT CARE!! I have made a decision that I should have made along time ago, to harness and encourage her in her creativity.  When I find her making a fairy house at 11pm in her bedroom with paper, scissors, Sellotape and cardboard everywhere.  When I find her feet covered in red paint in the morning because she has woken in the night and painted the aforesaid fairy house. I will celebrate.  I will be glad that she is an overcomer.
Sir Ken Robinson http://www.ted.com/talks/ken_robinson_says_schools_kill_creativity?language=en  talks about our (school) curriculum killing creativity.  That we have created an academic inflation where the core subjects are the only currency. He is a true advocate for the importance of creativity and the arts.  And I've decided I think he is right.  Don't get me wrong, I have no problem with academics (I'm finishing my masters at the moment), but when that is the only 'valued' box we give children to fit into, and they don't fit, this is a problem.
When I look at Immi with her weak side, her lack of organisational skills, her poor reading ability, her lack of attention to certain things, her sensory needs, her non existent awareness of time, I know she will never fit into that box.  And if I try to fit her in, and if I don't protect her from a society that would say 'if you don't fit you are no good', I am not being a good parent.  So, I will take notice of the things she enjoys, the things she feels she is good at and I will celebrate them, I will allow her space and time for them, i will encourage her I them.  I will hold back the urge to hurry her, to contain her mess, to mold her into something that fits the box and destroys her in the mean time.  If she can overcome lack of mobility, lack of academic prowess, lack of organisational ability and be something amazing, something beautiful, creative and inspiring, then I can overcome what the world has moulded me into.  I can overcome my lack of being able to step out of the schedule, my lack of being able to see past the academic value of education, and my fear of finding a different path.
Most of us walk that well trodden path, the one that we can all see. It has sign posts, guides, handrails for the rocky parts.  But, you know what, the world needs Imogen and those like her, because they walk another path, they have to find their own path, hack their way through forests, clamber over rocks, wade through rivers.  They are hard paths to find, but they are adventures, they are colourful, they are unforgettable.  And they are the journeys we all learn from.

Sad

Felt I needed to update everyone.....it's 11.45pm on the same day as I wrote my earlier post.  Immi just had a big seizure in bed. Have cleaned and changed her and now she is hyper and giggling like she is drunk, but needs to go to sleep. Epilepsy is a sinister, foreboding enemy that I hate with a vengeance. 

What a change in just a few days!

Blogging today about something I don't really understand, but seems to be amazing. 
 We recieved Skylar 10 days ago now and he has settld in so well.  We have taken him all over the place; to church, to parties, to the train station, shops, parks etc. and he has coped so well every where.  He really is an amazing little puppy.  But even more amazing than that is the effect he has had on Imogen.  

All of us love him and enjoy being with him, but for Immi there has been a profound effect.  The day he arrived she had two seizures and they were the last she has had!  No seizures for 10 days now!!! This is unheard of, and totally amazing.  There have been a couple of other changes happening at the same time; we are slowly putting carbs back in her diet, and we upped one of her meds back up a little. But both of these changes have been in place before and have had no effect at all. In fact we have a new set of meds sitting on the shelf ready to try but I am holding off as we may not need them! I am apprehensive as I write this.  Can a dog really bring this big a change? Is this just coincidence? What on earth is going on? My science side is trying to work out, can the sensory side of stroking and being with the dog really have such an effect on her brain activity that is is not triggering the synapses and activity that caused the seizures before?  I don't understand this at all, all I know is that we have been praying for a miracle and I am tentatively wondering if that miracle has arrived.  I am kind of emotional and kind of numb and not quite believing yet, but I wanted to share with so many of you that have been sharing (and praying) our journey with us.

 Another change in Immi is that she NEVER sleeps in the car, she just can't. The other day we came home from the park, only a 10 minute drive.  The dog fell asleep with his head on her lap and by the time we were home she too was asleep in the back of the car! Murray and I just stated dumbfounded at each other!

Skylar is also earning his keep already in helping Immi with her behaviour.  Yesterday, we went for a walk and Jed carried Immis scooter up the hill for her.  He asked if he could have a go but she snapped 'no!' I left and I pointed put that he had helped her and she wasn't being fair, so she shouted after Jed, who by this time was at the car and no longer wanted a go.  This instigated a total meltdown.  She stopped, sat down, cried, wailed, lamented, full on, no negotiating, Immi tantrum. Normally I went through my arsenal of negotiating weaponry; bribery, threats, pleading, shouting, etc etc. and at this point would normally give up.  But this time I was suddenly struck that this was why we had Skylar.  I went and got Skylar from the car and walked him back with me.  He asked straight up to Immi and buried his head under her arm.  She immediately, stroked and hugged him.  I gave her  the lead and they walked together, Skylar walking perfectly to heel, back to the car.

Another area he helps at already is at wake up time.  Immi struggles to wake and if I wake her she is awful, grumpy, snappy and totally reasonable, often refusing to go to school, take meds etc. (I know some of you maybe saying, well my son/daughter is just like that, but for hose of you that know Immi will know that this is on a different scale!)  Now however, Skylar wakes her and she wakes up happy every time, without fail! Amazing!

There is a part of me that is worried that with these declarations everything will go wrong today, and  her seizures will start up again, but I just feel this news is too big not to share!

Skylar

I was woken today by a phone call from the puppy courier.  He had had a breakdown in the M6 and so needed to change his plans, could we take our puppy today instead of tomorrow?!
Yes!
I ran back into the bedroom and woke Murray excitedly.  "We need to get that rhododendron out of the garden, sort out the living room and get a new bin!" I cried.
He groaned something in reply and rolled over!
Undeterred I got up, went to the gym (go me!) and took Jed to get a new bin as I really couldn't face a new puppy with a broken bin!
Just after eleven the van rolled up and out came Skylar.  He is gorgeous. Keith, the courier, brought him into the kitchen and he stood there looking at us for a short while, but then started to warm up and enjoyed the attention although he was still quite quiet. Just as I was asking Keith when Skylar had last been to the loo and he was telling me he had recently been in the van, Skylar decided to make the hallway his own!  This made it harder through the day to get him to pee and poop outside as he wanted to go back to the same place, but by the same evening, yes, really, the same evening, he had caught on and was doing it outside.
Throughout the rest of the day, he found his feet, and spent some time individually with each member of the family.  Imogen had a seizure and he was calm with her and stayed with her, not bolting or running away.  He followed her around the garden and she enjoyed hugging him, although she was full on or full off with him.  It was lovely to see each one start to develop their relationship with him.
Jed, as a sibling of a child with special needs sometimes struggles.  Imogen gets more attention than him, (partly because her disabilities demand it, and partly due to her personality) and he struggles with this sometimes. He needs extra patience with her and he has a deep sense of responsibility for her.  He always stays near if we are out and when we are on holiday and the like he will watch her like a hawk, telling us if he feels that she is too far away or we aren't watching her well enough.  He has rescued her a couple of times when she has had seizures in the pool, so he is a great older brother. But I wasn't sure if Skylar would add wood to the fire, in the fact that on top of everything else, even though (in his eyes) she can be a right pain, she is now getting a dog too.
My heart melted when this evening, he turned to me and said "I think Skylar is really going to pull our family together." I could have cried.

A typical day?...

So, I thought I'd write about a 'normal' day. Well a normalish day, as no day is ever the same as the next, but it gives you an idea.

So this morning was transition day across most of the UK for year 6 children transitioning to secondary school, so while Murray got Imogen ready and took her to school I went with Jed to his new school to drop him off. As with a number of year 6 boys Jed was full of bravado about not being nervous at all and that everything was fine, although this totally belied the fact that everything else was wrong and the smallest thing got him wound up! But I am sure this was happening in many homes with a year six pupil this sunny morning!

This all went smoothly and I walked back up the road thinking that I would have a few minutes before a meeting I had in town, when I realised that both of our cars were still parked outside the house. Now this was 8.50, school starts at 8.45 and is a 15 minute car journey, so I knew that some thing had happened that caused Murray and Immi to still be at home.

Going in back about an hour, Imogen had had a seizure at about 8am. She had woken up in a good mood, willingly started to get herself  dressed, and we had gone down for breakfast. While in the kitchen getting her breakfast ready she had gone into a seizure and fallen, losing bladder control.  She recovered, and I had left with her sat at the table ready for breakfast.  Unfortunately, there are post seizure symptoms that we often don't see or hear about. Sufferers will often get tired or get a headache, or as Imogen often does, display hyperactive behaviour, which is the body's way of compensating tiredness and trying to stay stimulated. It can also cause a change in behaviour and a previously calm, friendly person can suddenly become sullen, angry and frustrated.  
Today, was typical of this and sadly, the friendly, compliant Imogen disappeared and in her place we were left with a tired distracted, angry child who did not want her breakfast.  Murray tried to cajole her to eat, knowing that she would need the energy, and she made a deal that she would eat if he wasn't watching, however after two failed attempts of leaving her to see if she would eat, he started to worry about how to get her to school. She would not eat, take her tablets, clean her teeth or do anything. By the time I walked in she was screaming at her Dad, 'I am NOT going anywhere. I am NOT eating. I hate you!' And Murray was at a loss of any more strategies and getting more and more frustrated himself.
I tried reasoning with her, to no avail, I tried calling her school teaching assistant to see if she could talk her round. All that did was to cause her to scream down the phone 'go away! I am not going to school!'  In the end I managed to give her a hug, get her to eat a fat bomb (a high fat, low carb snack from the ketogenic diet) and get her into the car by telling her she didn't need to talk to her Dad!

I closed the door and ran to the phone as I had to phone the hospital and get her an emergency appointment in the fracture clinic as she broke her wrist a few weeks ago and it was giving her so much pain again that the school had called. (She has a really high pain threshold too, so it must have been bad!). They made me an appointment for 2pm, I was supposed to pick up Jed at 2.30 so I called Murray and had another logistical conversation then ran into town for my meeting with the council about an arts festival I am helping to organise.
The meeting over ran and so I made my apologies just after the published finishing time and crept out, yomped back home, jumped in my car to meet a friend for an hour whose daughter also has additional needs. After, empathising with each other for an hour, I picked up Immi from school and drove to the hospital.  

The hospital was very efficient and the doctor decided we should have another X-ray to check the break, all went well; I only had to hold her arm in the correct position for one shot and we only had to retake once! We went back round to the waiting room to see the doctor again and Imogen was playing with a dolls house next to a young boy. Suddenly she went into a seizure, obviously shocking the lad and his carer. I would normally stop and explain to any onlookers to try to dissipate  any fear, but this time I didn't have a chance.  We went to the toilet where I discovered she had wet again and unfortunately the pad had not been enough. Normally this would be ok as we would have spare with us, but because there is a bag that stays at school I didn't have any spare.  I faced a dilemma, do I leave her in the toilet alone and run to the car or what? Eventually I asked a fellow parent to let the nurse know if they called for her, and ran to the car.  As I ran, I saw a nurse and she offered to stay with Immi. I reached the car and went through her school bag, realising we had no spare clothes, knickers or pads with us! Arrgggh! What now?
 I ran back to the toilet and asked the nurse if she could help. She said she would go and ask. A couple of minutes later she returned empty handed but saying that someone had gone to the ward to find something. Another 10 mins and a nurse arrived with knickers and a huge pad plus a special needs nappy. The knickers and pad seemed the lesser of two evils so I put those on Immi who did not cope well. With cries of 'this is so rubbish! This pad is too big and I can't wear this!'  And me whispering through tight lips 'it's only for 20 minutes Imogen, as soon as we get home you can change' and secretly praying that they wouldn't say that she needed a cast, we went back into the waiting room and thankfully quickly back into the doctor's office.
He informed us that the break was definitely healed and that the pain was from the dystonia and that we could go - phew!
So finally we are sat on my bed (Immi sat on a protective mat!) watching a DVD, recovering from a 'normal' day.  We still haven't had dinner, I wonder what spills and thrills that will entail?!...

Update....5.50pm just finished changing Immi again and cleaning up the kitchen floor from another seizure. Hey ho! 
But please don't feel sorry, just give thanks for good health, good relationships and good provision in the UK. We are so blessed.

Overwhelmed with love

This week has been an interesting one, full of ups and downs. Points when I have struggled to keep going, stories of things happening in people's lives nearby that are just awful. Worries of letting down    the 'older sibling' , and have we done the right thing in school transition, some frustrating news and general busyness.  But then love broke in.

Two major things have impacted me positively this week. The first is the love we have been shown.  Many of you know we have been raising money for a service dog for Imogen from Service dogs Europe and money has been steadily coming in from many generous people. (If that was you, thank you soooo much!). However, my sister decided to step in. She's the sort who wouldn't necessarily stick up for herself, but would fight with all her might for family and friends.  She found a new organisation called crowdwish and placed her wish, for the money to get Imogen the dog!


Crowdwish are amazing; every 24hours, the wish that is at the top of the poll they try to action in some imaginative way.  Have a look at their site www.crowdwish.com to see all sorts of different wishes they have actioned.  They came out of a conversation of some friends at a pub and I reckon they could start a revolution!

Over a few days the votes built up and then last week, on the 8th May, the wish won!  We wondered what they would do, not expecting a huge lot, as they tend to try to grant wishes through lobbying, raising awareness etc rather than giving money, but they totally excelled themselves collecting the €700 needed to take us up to the €5000!  Now we are able to start the ball rolling with the service dog!  The biggest lesson for me though, wasn't the raising of the funds, but it was the overwhelming love of  so many. Firstly, my sister, for making the wish, then all the people voting and finally the care and generosity of people that we have never even met raising those needed funds.  We live in community for a reason.  So often I find myself drawing back and being independent.  I don't know where that comes from but I find it easy to withdraw and hard to accept love and help.  It hit me hard this week that there is a reason we are set in families and communities. I also lead a church, this should be the best model of love in community available, but sadly so often it isn't. And it won't be until we learn both how to give love and also how to accept love, then this may happen.

I said that there were two things that hit me this week.  The other also involves my sister.  She has worn glasses since she was 5 and had glandular fever in her teens which meant that she has gone through bouts of ME since.
  As a Christian, and as a church leader I am supposed to believe in Gods healing.  I have found myself struggling though.  In principle I believe, but with a husband who lost a sister to cancer in his teens, and a daughter who battles daily, I struggle.  I have never witnessed a physical, no arguments healing.
Anyway, about 3 months ago, after church one day someone prayed for my sister and she woke up the next morning changed.  The ME had disappeared, she had energy and was able to do things she hadn't done for years.  This, to me, was great news, but still it was a very subjective healing, how could the effects of ME be measured. Maybe it is my background in science, but I do struggle with the need for the empirical.  This week though had blown me away.
Since the prayer, my sister's ME seemed better, but she starting having headaches. Finally this week she went to the opticians and the news was very unexpected.  It seems that her headaches are due to the fact that her eyes have returned to 20/20 vision and wearing her glasses which are no longer suitable was causing the headaches!! This piece of news has also stuck me this week.

Love and power mixed together.  I want to follow that God.

Keto craziness

It's been a while since I have written, and there are so many things that have happened over the last few months that I will write about in the next few blogs, but this one is about the craziness that is our lives at the moment as we enter the world of the ketogenic diet.

Imogen has had epilepsy now for over 6years and we have tried every drug available (as far as I am aware) and many combinations of drugs to no avail. I can't remember where we first heard of the ketogenic diet, but somewhere along the line it entered our thinking. We are very blessed in this area that we have had a dietician, Marian who was funded to enable children like Imogen to go on this diet. Sadly this funding has just ended so we were the last ones to sneak in at the end.  

Broccoli and hotdog quiche, spinach fried in butter and cream, lemon cheese ball and coconut mik.

So what is the diet? I hear you cry! Well, the theory as far as I can tell is that most people metabolise carbohydrate to give energy! but it has been found that if we cause the body to metabolise fats instead a by-product of this is something called ketones (don't ask me what they are!) but it has been found that raised ketones prevent can prevent seizures, so this is the what we are doing at the moment with Imogen.

I have to say I hadn't quite grasped how time consuming it would be. Every meal I have to work out the fat, protein and carbohydrate content of each item for the amount being used and make sure they balance properly. Last week Imogen's ketones weren't raising very well so now she is on 25g of carbohydrate a day. (Next time you eat your packet of crisps, chocolate biscuit or McDonalds just have a look at the carb content! She won't be eating any of those any time soon!) 
Thankfully there are a few items to help; a useful computer programme that will work out the levels for you once you have input the information, something called ketocal which is a powder that is very high fat that can be used in pizza base, muffins and things like that, and a ketocal drink that we can make smoothies out of.  Thankfully Imogen likes all these items which is making life easier.
Today her ketones where up a bit and this was the first seizure free day for a loooong time. I'm really hoping there are many more to come!