Lessons from Newton

So Immi got a newton's cradle for Christmas. On Boxing Day a friend put up a post on FB about her son's tangled Newtons cradle and I sat there with a mix of relief and smug that we hadn't faced that problem. Two days later that smug was wiped away as I found the Newton's cradle completely tangled up in her room. 

I angrily took it downstairs and started work on it - if my friend could fix theirs then I could fix ours - I worked on it for a long time, a bit obsessional really, I ate my dinner as intermittent mouthfuls between untangling. My husband came in periodically, initially to sympathise, eventually to try to rationalise but the untangling had taken on a deeper meaning for me by then. For I began to realise that it felt a bit like our life. 

 Everything had been going swimmingly, according to plan, just like the Newton's cradle, rocking gently sending its kinetic energy thought to the next thing, totally predictable, but along the line catastrophe struck. For the cradle, it was dropped and turned and got into a terrible tangle, for us it was Immi's health and the impact it had on our whole lives causing a change in country, work, home, schooling, etc. For many of you there will be some other turning in life that caused a wipeout that you have struggled to recover from.

https://upload.wikimedia.org/wikipedia/commons/1/1d/Newtons_cradle.gif

I thought the Newtons cradle could be fixed but 5+ hours in, at midnight, with my eyes shot, I admitted defeat and went to bed (in tears if truth be known!) Murray had a look at it and took the strings off the frame where I found them in the morning when I went down. 

The truth is, in the natural, some things can't be fixed, some things have to be thought of and changed laterally. To find a different way, a new way, not the normal way. I wanted to go back, to retrace the tangled steps and untangle the wires, but it couldn't be done (and even if it had, where they were untangled they were all bent and crumpled). What needed to happen was a restoration, a renewing and recreating. 

It's like that when catastrophe strikes, when you get wiped out by life and its consequences continue on into the future. You can't retrace your steps, go back and unwind it. Instead, something new has to be created. I am stubborn - 5 hours of non stop pointless untangling kind of proves that point!  I would have probably continued today if he hadn't taken the wires off the frame, because it's just string, of course it can be untangled!! But thankfully someone else stepped in to stop my crazy! 

I spent a long time fighting the inevitable - that the cradle needed new wires, but I have also spent a long time trying to untangle and fix life when actually it needs a rethink, it needs a new way.  We need to find the new normal, the new way of working, ministering and being even though it's all a bit broken and tangled, and in that process maybe God will come along, rewire life, show a new way and create a new and beautiful thing.

The elusive ice cream...and an update.

We finally made it! We finally got to the beach for an ice cream!
My head shouts "Dont be ridiculous, of course you can get to the beach for an ice cream!" But here's the back story.
On Thursday the weather was glorious. We decided to drive to Poldhu as it is a really accessivle beach and thwy have the best coffee. We drive over, only to find that even with a blue badge there was absolutely NO WHERE to park. Couldnt even park on the double yellows as they all had no stopping signs on them.
So we drove back towards home (I have to admit to having a really bad attitiude at this point!) and decided to stop at Praa sands for an ice cream. We parked up, walked down the steps to the Beachcomber cafe and got in the queue. We saw a friend and started chatting and suddenly...chaos. In the middle of a long queue Immi went into full blown Tonic Clonic seizure, out on the floor, wet, the works. It was a long one...5 minutes. The sort that seems to go on forever and then she finally starts to come.out and trues to stand and then drops back in again. Loads of people offered to help and the owners kindly let us use their bathroom when she was finally able to move. We sorted her out, climbed the steps (Murray had gone to get the car) and drive home. Immi spent the rest of the day on the sofa.
Fast forward to today, the first day since with no rain. Murray is at work and we were in the house. Anyone who knows me knows that I dont do well being stuck in the house. But I realised I have also begun to be really nervous taking Immi out on my own. She wanted to go to the park with the dog, but coping with the dog and her during a seizure is just too much. She had quite a large seizure at about 10am so I bathed her and washed her hair afterwards and then we finally thought about the day. Most people in Britain go out between the showers. I feel like we aim to go out between the seizures! Having had one already I wrote to Murray and told him how I felt; trapped but nervous. He suggested we try Praa sands for an ice cream again. So I gathered my couragr (and the emergency bag!) and we set off. There is a shop in Praa Sands called R and J Supplies. It is a fun place with lots to look at. They have lots of flamingo things at the moment so Immi wanted to have a look. We decided to buy a couple of things, but theit card machine wasn't working so we popped next door into the Post Offic3 to get out some cash. I was just in the process of getting my cash when she went into another seizure. Again like the firat one today 5 minutes with dropping in and out...and wet. They didnt have a loo so when she was finally able to walk I put her into the car -wet and decided on our next move. I wasnt going to give up again so... There is a caravan site nearby that we use off season as rhey have a pool open to locals, so I drove up there and they kindly let us use their disabled toilet.
Finally we were able to drive down the hill again, pay for parking and get the elusive ice cream! The beach is lovely today, and its warm. It was worth it!

Finally, many of you have asked how Immi is now, post surgery. She is ok, the hair left in the middle falls both sides and hides the wounds and shaved parts so that is good and the wounds are all healing well. Just lots of seizure activity continuing.

A Big Week - day 12

This will probably be the last post for a while as we are finally in our way home! Yay!
We popped back to the ward this morning after staying at Ronald McDonald house, to have Immi's wounds checked and redressed.

 It sounds silly but I felt quite emotional saying goodbye to the ward staff. I know its their job and over the course of a year they see hundreds of children come through the ward but their knowledge, care and strength makes us as parents feel safe and that is huge.

 To us in the UK hospitals feel like safe places; in the main, places to go and get help and healing. It took my mind to the footage I have seen recently of hospitals in Syria where neither patient or staff feel safe. I am thankful. We dropped off sweets and a card and Immi gave lots of hugs and we left to pack up our temporary Ronald McDonald home.

This charity too, is amazing. No doubt most of you have seen on the counters at McDonalds the little change collections or the little child height collection buckets where you can put in a coin and it spirals down getting faster and faster until it plops into the bucket. I had seen these in McDonalds and I hadn't taken much - if any, to be honest - notice.

Well, that has changed! Ronald McDonald homes are located close to many major hospitals in the UK and are an amazing resource to thousands of parents. The rooms are Premier Inn-esque and each floor also has a TV lounge and fully equipped kitchen. There is an area in the fridge allocated for each room and a cupboard for each. There is a laundry room downstairs which we utilised a number of times and the phone in each room links directly to the ward your child is in so you can sleep and know that staff can contact you easily.

 Each family accommodated leave a deposit (which we donated at the end) but however long is needed the rest is provided by the charity. Our stay was relatively short, we met a number of families that have been in the hospital for months or even years.

Without this resource these people would either not be able to stay near their child or would have to pay for hotels which as you can imagine would build up cost wise very quickly. We are so thankful for this place. Our friend Sarah had offered her spare room about 20 minutes away but this has made it so much easier and has meant that we have been able to take breaks and tag team so much easier with each other.
So next time you are in McDonalds please do drop a bit of change in the box, we and many others we have met this week thank you!

Thank you too if you have followed our journey this past few days. I will take a little break from blogging now but will write with any significant updates or changes. So many of you have commented either on the blog or in Facebook, sent love and best wishes or given to help us with expenses. Thank you, thank you, thank you, your live has held us and strengthened us. Be blessed xxx

A Big Week - Day 11

We were hoping to stay at Ronald McDonald house together yesterday and then drive home today but things didn't quite work out like that.
Immi wasnt quite herself all day, staring into space and not responding to her name, sonwe decided to spend another night on the ward.
We went over to visit a friend on another ward and when we came back she went very quiet and fell asleep very early.

However, she kept half sitting up, opening her eyes, her pupils huge and staring into space and wouldn't respond to her name. Or stretching, hahlf opening her eyes with her eyes rolled back. It was happening really frequently so I called the nurse over and neither of us were sure if it was seizure related or sleep related. Eventually she fell asleep properly and we woke her at 9.30 this morning. Its quite a feat to stay aleep on a ward this busy!

Anyway, she seems a lot like her normal self today. A minute seizure in the middle of the day so far, but that is quite normal for her. We are being discharged to Ronald McDonald house and the bed will stay open over night while we are there, just in case. We will pop back in the morning to have her wounds checked and then hopefully we can start the journey home!

Immi and Emma the play worker (and very patient!!)

We also heard today that Immi has been awarded a place in the local Special Needs school too, so she will have a couple of transition sessions next week!

A Big Week - day 10

Well after playing hokey Cokey with the theatre last night we finally got down in the evening and after an hour Immi came back electrode free.
She came round quickly and ate a double cheeseburger and milkshake (as you do after being starved for over 24hours!)
And shortly after that unfortunately had a seizure. A long seizure. The staff were all ready to give emergency meds but we discouraged them and she started coming out at 5 minutes.
Her head was still weeping a little so neither of us slept well, on and off all night. At 6.30 she had another 5 minute seizure and then about an hour later another minute.
They have said she can stay on ward another day so we can all keep an eye on her.
We always knew this surgery was only for investigation but it is a bit of a shock that the seizures are back with such vengeance. To be totally honest I am tired of it all. I just wish she didnt have to face this every day.

On another note however I just want to highlight the amazing team that we have had around Imogen this week. From Mr Walsh the consultant to all the neuro surgical team, to anaesthetists, to Darren and the neurophysiology team, to Alia the ward sister in ward 10 and all her amazing  nursing team, to Emma the play worker, to Karen and Lou the amazing housekeepers on the ward that put everyone at ease. Everyone has been amazing, caring, helpful and kind. Yes, yesterday was a bit tough on Immi with the wait around for theatre but to get it in perspective, she was bumped because they needed to do potentially life having surgery on a baby.  Can't complain about that!

Immi and Darren (neurophysiologist).

A Big Week - day 81/2 & 9!

As I write it is still actually day 8, but the adrenalin has again kicked in and I can't get to sleep.
So after two seizures today, a third cannula blown and one electrode pulled out, we have been told that they will probably operate again to remove the electrodes tomorrow.

She is on the reserve list, rather like being on standby at an airport waiting for a flight, so it depends what emergency ops need to be done or if anything planned fails to happen for any reasons then Immi will go in. Thankfully it is a shorter op than the first, but it is still an op all the same and removing the electrodes leaves her open for infection. I thought I would be calm, a kind of packing up to go home, but as I sit here in Ronald McDonald I find myself unable to sleep and wishing that I was with them on the ward.
Finally fell asleep after realising that I think the cafe must have given me a full caf not decaf coffee as I had asked for!

Sat waiting now to go to theatre. She had her meds before 7 and so now we wait....

Update....they have decided to do some electrode stimulation this morning and then the op later today (if it happens). What does electrode stimulation mean?
She has 16 electrodes in her brain that literally been recording her every move and thought! When looked at on the trace it can be seen that the activity is quite spread out and general but there does appear to be one electrode that leads the others my a millisecond or so. So this is the one they will send a small current through and see if they can stimulate a seizure. By doing this it may show that this is an area they could operate on. To be honest I think its a bit of a long shot as there is so much activity in the electrodes but who am I???!!

Update 2 (can't get it to shift from central justification!)

So they did a good long session of stimulation as Immi has been shiftwd to the afternoon op slot. However, despite stimulating every electrode and then the one that was most promising given a higher current we failed to stimulate a seizure. The initial deduction from this is that her seizures are really quite generalised and it may be unlikely that they could operate with any measure of success. Having said that, it is very initial broad brush srokes and all of the readings of the week will be read and taken into account. From this they will make a decision about anything thwy may be able to do. 

So now we are sat waiting for the operating theatre. Immi is hungry now as she hasnt eaten since last night and all the other patients are eating. 

Feeling a bit dispondent if I'm honest. Really dont want her to have to live with this horrid disease for the rest of her life. 

Update 3

So its 1830 now. Immi is off monitor now but hasnt eaten for 24 hours and hasnt drunk since 10am. She just had the mother of all seizures and has a stinking headache now. We really want to give her some food and drink but they are saying she is still going to go down next. 20 mins in and she still isnt speaking yet. Please pray they either take her down soon or phone and say it will be tomorrow. 

Update 4 

1850 went to theatre. 1910 back on ward...had to postpone as a baby needed looking at again. I have asked if it looks like it will be a while can they please bump her and let her have some food. Will keep you updated. 

Update 5 (hopefully the last one today!)

They took her to theatre again at 8pm. At that point there was a question as to whether they could do it as we had been told to give her her evening meds so she of course had liquids (about 80ml). But the consultant was happy for her to go.

Hopefully there will be no more big news to update you til tomorrow!

A Big Week - Day 8

Day 8??!! A week is only supposed to have seven days isn't it?...this week is too long!

Well on the plus side Immi had a 4 min seizure at about 8pm last night. So that is helpful.
I'm not sure I should write first thing in the morning really. Yesterday evening Immi's canula (the tube in her hand) got stuck so they had to change it. It has to be flushed out with water to keep it clear and the gap between flushes had been a long one. So they put on cream to numb the area on her good arm elbow and also her dystonic arm. After a couple of hours (things are slow on Sundays) the nurse practitioner came and out the canula in. Immi was NOT impressed and the whole ward heard about it. We were all numbskulls!! Kudos to the NP who was patient and got a good line in eventually!
At change over I asked the nurse taking over if it could be flushed a bit more often as it was the third one and very stressful. I got told the standard flush time is 8-12 hours and they already did it at 8hour intervals. I held my ground and said that I understood that but that she needed it sooner as I didn't want her to have to go through it again. They agreed to do it at 6hrs.
We went to bed and had slept in and off. It was a busy shift with 2 going to surgery in the middle of the night, but I was disappointed and stressed when I became compus mentus enough to realise that the last flush had been 9.30pm and it was now 5.30am. I realised that the hand over nurse who I had discussed with, was a student who wasn't even the one doing the canulas. Finally a nurse came (at 6.25am...you are all witnesses!) and flushed the line and thankfully it was fine. I looked over at Immi and her dressing has ridden up. So much so that bolts are now exposed and I can see them drilled straight into her skull.

 All that, mixed with a stinking headache has left me feeling very vulnerable this morning.
Nothing has really changed. Everything is the same as yesterday actually slightly better in the fact that we have had a readable seizure. But it is amazing how tiredness and stress can change your perspective.
I have to admit to, this morning pulling my sheet up over my head (the cameras are on all the time!) and having a cry. A mix of fear and tiredness and being hit with the enormity of what is actually happening right now welled up inside me and threatened to overwhelm.
BUT GOD.
Many would say they found the strength inside them to stand strong. I don't think I can testify to that. But I do feel there is something/someone....God, who is walking beside and lifting me when I need it.
I met a mum and Ronald McDonald the night before last and she is overwhelmed. She is tired and scared and it is coming out as anger mainly directed at staff but it is in her whole demeanor. I understand. I can see easily how this happens. The overwhelming feelings either tear you apart or you have to project them onto somewhere or someone else. I am so thankful that I have someone to pass all my fear and frustration and overwhelming feelings onto and He is big enough to handle all the crap I pass onto him. I dont have to project onto the staff or onto Murray or anywhere else as I give him my rubbish. Its probably a good job none of you hear those prayers- they need some sensoring! But I reckon I'm in good company...there are plenty of psalms when King David lets rip at God about his rubbish and he was described as a "man after God's own heart". So I will give him my crap and have a cry, pick myself up and stand strong again because "He lifts me out of the slimy pit, out of the mud and mire. He sets my feet on a rock and gives me a firm place to stand." Psalm 40

Ain't nothin glamourous about this....lol!

Update: Dr came round and one of the wires has come undone and needs fixing. So a new bolt will be put on this morning and then redressed....they are talking about op to take out electrodes tomorrow....

A Big Week - Day 7

Guest post today from Murray but before that...today's headline....no seizures. Bormally this would be something to celebrate but this week this is really really not good. We need more seizures!

So...as I take a break, here are Murray's musings!...

It's taken me some time to gather my feelings and reflect on the BIG WEEK that's been happening to us and especially Immi. That wall of emotions we faced heading up to  Wednesday and the 5 hour long brain  operation I am now realising led to a huge shut down  both physically and mentally, is that  a 'MAN' response??, huge amounts of stress where I felt I had to stay steady and even to help Karen and Immi face it without us all losing it... I realise I have held back, but I'm  not  sure I had any  other  way of dealing  with  it... No other emotional tools to take me through to the other side of that operation... What relief when she was out of theatre and in our arms, while still unconscious and nonverbal there remained the anxious pain, the 'what if's' the uncertainty and loss just hanging on the air... holding your breath for 6 hours is a long time and hugely debilitating... numbness, disorientation, loss of purpose and pleasure... That beautiful moment when Immi opened her eyes, that stifled tear when she finally spoke again (after an hour) what a day that was, what a rollercoaster of emotion and non emotion, heartache and relief. We put so much trust into the hands of others in our medical system, and they have proved themselves to be trustworthy, yet again...

I have been balancing the turmoil of the unknown alongside reading "Red Moon Rising", Pete Greig's fascinating book  that sets out how God started the 24/7 prayer movement in the UK. Its dangerous and challenging beginnings and  viral spreading across the  world. It's a MUST READ for anyone interested in living faithfully for Jesus and  meeting the increasing challenges of our time through prayer... This book has been a real Godsend  for me and has  helped me to see God at work and present in the midst of everything we have walked  through. In my times of deepest turmoil I have felt comforted and supported, almost as if Pete Greig were walking the same journey, an example of this was a bit of the bible he quotes as he tries to reconcile the positive and negative, the joy and the pain in his own experience. https://g.co/kgs/hDQvA5 

From 2 Corinthians 6, this is what it says "Well, now is the right time to listen, the day to be helped. Don't put it off; don't frustrate God's work by showing up late, throwing a question mark over everything we're doing. Our work as God’s servants gets validated—or not—in the details. People are watching us as we stay at our post, alertly, unswervingly… in hard times, tough times, bad times; when we’re beaten up, jailed, and mobbed; working hard, working late, working without eating; with pure heart, clear head, steady hand; in gentleness, holiness, and honest love; when we’re telling the truth, and when God’s showing his power; when we’re doing our best setting things right; when we’re praised, and when we’re blamed; slandered, and honored; true to our word, though distrusted; ignored by the world, but recognized by God; terrifically alive, though rumored to be dead; beaten within an inch of our lives, but refusing to die; immersed in tears, yet always filled with deep joy; living on handouts, yet enriching many; having nothing, having it all." This really sums it up for me, the  everything and  nothing, the tears and the joy, the highs and the lows... really resonated deeply with me! (this is the Message paraphrase of the Bible,  but other great translations are available!!) I think though, in reading this that we may need to rethink what we  classify  as  highs and lows.. It's hopefully a  powerful  reminder that God  promises  to  never leave us at  ANY TIME!!

Having the opportunity to STOP and STAY with no way of doing anything else is also challenging.. I have spent this week in  the hospital  with Immi, where she is connected to the wall through a wiring loom of multicoloured cables attached to 16 electrodes buried deep  into her  brain... there is no disconnecting it, no walking  around, no fresh air... While on duty one has to be engaged and alert, vigilant and ready to act. When the seizure comes, there  are people to call, buttons to press, clothes and bedding to change, loved ones  to comfort...

On the eve of my first night shift I was reminded of Jesus in  the garden of Gethsemane. The disciples sleeping nearby, the challenges and the alertness and known outcome that weighed heavily  on Jesus' mind. As I sat there, lay there, held there by  the negative desire for a powerful seizure to rack my loved ones body, it felt not dissimilar to Jesus preparing  himself for a negative physical outcome himself. Knowing that the pain and torture he would face was a necessity if the world had ANY chance of being restored, freed from the pain  and torment of sin and death. This spoke to my parallel situation where Immi's pain and torment was an essential part of the medical pathway to potential freedom of epileptic seizures.

I lay there watching her rest and eventually sleep, mindful of the possibilities that could be won by this  painful  process but completely  and  utterly thankful to God for being with us all  throughout this process, for hundreds of praying friends across the world supporting us,the invisible army of God's people reaching out with love and hope in their words, thoughts and comments...

Huge thanks to everyone who has been part of this journey, we really appreciate every one of you, and no matter what kind of reception you might receive from Immi (the good  the  bad  and the ugly sides of Autism!!) you are loved and you are valued by us!! God bless you. Murray xx        

A Big Week - day 6

Main headline: Immi had a short seizure at 1.10am and then a 2 min one at 10am. Electrical activity is picking up in her brain as the anaesthetic is wearing off (as shoen on the monitoring). So more seizures will probably appear.

Apart from that, life is slow in hospital on a Saturday. The highlights of my day have been doing a load of washing, buying a "Pinkie Pie" helium balloon and (more importantly)...visitors. 

Visitors are sooo important. Please never underestimate the value of visiting someone in hospital even if it is just for 5 minutes, even if you feel it wasnt really worth it, even if the patient gives you the cold shoulder (sorry for those who received a frosty reception from Immi this week!) Even if the people staying in hospital can barely string two words together because their sleep deprived minds have gone to mush!  I can tell you it is worth it. For the patient it is worth it. For their family it is worth it. It speaks so much. You don't even have to say anything. Presence speaks volumes it says "I value you. I think you are worth my time. I think you are worth my car park charge!" 

This week we have had a number of visitors. Some from nearby, some even also staying in hospital in other wards, some battling train cancellations to get here, some are family, some are friends who I haven't seen for ages, some are even friends I have never actually met in the flesh before but "met" through a face book group. Each person has sacrificed time for us, each person has communicated love and shown with their actions that they care. Each person has made themself available. And for each person...I am thankful. Xxx

Tomorrow Murray is going to be guest blogger and I'm going to keep quiet for a day! ;-) 

A Big Week - Day five

Its all about attitiude. I can either sit here and feel sorry for myself, for Immi, for how life is, or I can allow myself to be positioned in a place where I am available to others and despite being in a ward most of the time, to be there for the one.
Last night was one of those times. I went off to Ronald McDonald house, watched last Sunday's Poldark(!), listened to some music and then settled down for an early night in a peaceful bedroom. I fell asleep quickly and had been asleep for about 4 hours when a tremendous hammering on the door broke through. In my half asleep/half awake state I wondered if I had missed an alarm and needed to get out but it was a lady knocking the door down shouting help very loudly. I stumbled to the door and she desparately cried "please help, he's having a seizure!" It turned out that not only did she have a son in ICU but her partner (a big chap) had epilepsy and was seizing badly and making noise that he normally didn't.  I went next door with her (even having the presence of mind to remember my card key...quite impressed myself at 1.30am!!) and just kept him safe, asked the normal epilepsy questions about length of seizure, care plan, had he taken meds etc. Due to being with their son the dad had missed some meds so it wasnt a surprise he was fitting, so we stayed calm, waited, refused the offer from another lady to call an ambulance (last thing the poor young mum needed was one in the children's and one in the general hospital miles away from each other!) and within the 5 minute window he started to come round.

we can be available for others whatever our circumstances

I sat with the young mum and told her a little of why I was here. Her response was "I knew I knocked on the right door!" It humbles me that we are placed to have purpose beyond our own understanding and we can be available whatever our circumstances. Let's be available.
The irony though is not lost on me...Immi still has had no more seizures. Normally this is our greatest wish. This week however, we need some seizure activity....starting to drop some meds out to try and cause this to happen...watch this space. Xxx

A Big Week - day four

Oh my word....so beyond tired. You know that way when you are so tired you feel sick...thats me right now. Big shout out to the friends around the world that kept me going last night!

Immi did well last night. She drank enough and kept falling in and put of sleep, not helped by hourly obs of course! Her blood pressure and temp were a bit low so it stayed hourly all night. She only had one, short seizure during the night but I had completely forgotten how loud wards are. I am sure it wasn't this bad last time. The chap in the camp bed in the next bay with his daughter was making all sorts of noise - wont go into details, you can imagine! It wasnt pleasant!
She has eaten breakfast this morning (not even 7.30 yet!) And we are waiting for Murray to turn up - then Immi has to have a CT scan again this morning! Im so proud of how Immi is coping with everything, she has been so brave.

A few hours on and the CT scan went well - although as the scanner was in demand we had to bribe swift cooperation with the promise of a McDonalds!

 The scan checked that all electrodes are placed well and are working as expected, which they are.  Ironically Immi has still only had one seizure so far, ironic as she had 4 the day before the op, but the drs say that the anaesthetic prevents seizures so it will probably pick up again. If we dont get some tonight then they will drop out one of her 3 meds tomorrow to try and induce some.
She is doing well, talking, eating, drinking and just a bit uncomfortable which isn't surprising. All in all doing as well as can be expected. Just need a few more seizures to measure now (the only time we will ever be wishing for more seizures!!)

A Big Week - day 3

Woke after a short sleep at 6.10. Immi was sleeping but moving around, so I know she wasn't sleeping well. I woke her at 6.50am to take her meds as she is not allowed liquids after 7am.

We needed to be back on the ward by 8am so showers and dressing next and then off to the ward. On the way we briefly saw a Mum that we met last time we were in and have kept in touch with. As she flew by she gave me a hug and asked if we were ok. I was till then!!! To be honest though it was lovely to see her, they too have been through such a lot as a family that I knew it was a hug of empathy and later she messaged to say that she is never normally out of the hospital at that time and she felt that our meeting was no coincidence.

By this time Immi was a little punch drunk and giggly, so she kept us all entertained on the ward.  I think my favourite moment was when Murray pointed out a giant helium unicorn balloon.  Immi simply said "that's Mavis." Cracked us all up!

The air conditioning in theatre had stopped working and had to be rebooted so there was a delay on the surgery but the hour's delay went very quickly with changing into her gown and putting on DVT stockings (apparently you use the plastic bag they come in by slipping it over the foot so they slip on easier - quick tip!) meeting the anaesthetist, then Mr Walsh again (neurosurgeon) and finally the neuro team that put 5 extra electrodes onto the outside of her head for monitoring.

Finally it was time to head down. We started in the CT scanning room where they put her to sleep with gas and air (she was given the choice of gas and air or injection). She was so good; smiled, told us she loved us and close her eyes.

And now we are waiting and writing. Five hours of wanting to distract yourself but also wanting to stay with her in the moment. A surreal feeling of walking around with some weird hidden secret where all the strangers around know nothing. Feeling slightly nauseous and unable to settle on anything. Looking at stuff but my brain far away not taking it in. Thankful that in a sea of unknown people we are known.

So at 3.45pm after 5 hours we were called to recovery. I have to admit seeing her was a shock. It shouldnt have been. But it was. They said that the op had gone well and there had just been a bit of weeping. She has briefly woken but was asleep again and so we wheeled her back to the ward where they have done regular obs.

After about 45mins the neurophysiology team were back to connect her and her "troll-like" get up (as in the film Trolls) came into its own. They spend over an hour connecting her and have just gone to do the final set up in the collating room. Test readings look like they are reafing clearly and taking good recordings which is what we need. Immi has pretty much slept and grumpily watched the odd bit of TV since returning to ward. She pulled off the heart rate monitor from her finger and isnt happy about the canula in her hand. She hasnt drunk anything yet and hasn't yet spoken - which is our main concern othwr than the epilepsy of course.  But its early days.

A Big Week - night 2

Well if yesterday was a long day, last night was the longest night.
We have been given a room in Ronald McDonald house (I'll write about that later in the week) and Immi was allowed to stay with us as long as she was back on the ward this morning for 8am.
Well, sleep evaded us. Especially Immi. And keeping the fear and the "what ifs" at bay was hard. We find ourselves watching Zootopia at 2.30am in a bundle. Immi struggles to get to sleep at the best of times and often needs a weighted blanket, this night was even more of a struggle. She wanted to be held really tight, which would have been fine if she hasn't been breathing right in my face! I'm not a night hugger! I need my space, but tonight I didn't care. I was in a really uncomfortable position, but I was holding my baby. Tomorrow held horrible hours in its hands and I would hold her all night if needed.
 In the dark the tears rolled and for the first time in my life I guess I felt a bit of the impending doom that Jesus felt in Gethsemene. Knowing what was to come and asking if there was any way of avoiding it. No wonder he couldn't sleep! It was a scary place. But with it came a recognition....after three days there was new life. It was horrible, the worst thing imaginable but the best came out of it. Renewal. Restoration. New beginnings. There is a verse in psalm 30 that says "tears flow in the night, but joy comes in the morning."  This is my prayer over the next week or so. That thought this crap that Immi is going to go through that joy would break through, that a new freedom and new life would come.

A Big Week - day 2

It has felt like a loooonnnnggg day!

We got up, packed up and came into Birmingham. We had a couple of hours to kill and Immi still had some Christmas (yes, Christmas!) vouchers to spend so we had a trip to The Bull Ring and to Claire's accessories. Immi gets overwhelmed in big shopping centres at the best of times, I think it is something to do with the noise and lights and today was no exception.  It took us 45 mins to get past the first shop, firstly because as she entered it (The Entertainer) she went into a seizure and we had to go and change. When we finally got back in there she spent another half an hour wandering aimlessly around the entertainer, not really looking at anything, but not willing to move on either.
Eventually we were able to move on and in Claire's she bought some headbands as she will want something to cover her head.

Then we moved onto the hospital.  When we arrived at the ward at 2pm as requested we were asked to sit near the ward door as they were discharging some other patients.  Immi was called for a blood test to show she has no infection before op. We went down to outpatients for this, only to find the things had already been sent to the ward, so we went back up! Immi eventually allowed her blood to be drawn although she wasn't keen until I explained we weren't doing the op today.  I think she thought it was the start of the procedure. All done we continued to wait. Then Immi was called for another blood test - to determine blood type this time. Not sure why they had to do two different tests - GMC policy apparently. (Any medics out there feel free to enlighten me as to why patients have to go through two separate procedures! Seems unnecessary!) Then the wait again!

Then the big cheese walked in.  The man whose hands will be responsible for our daughter's fate in a way none other will ever do - I do hope he carries that responsibility heavily!  It was a bit of a stunning meeting.  They have decided to place 16 electrodes into Immis brain.  13 on the left into the central and frontal lobes and 3 in the right frontal lobe. She will spend about 5 hours under general anaesthetic. Firstly they will do another MRI, then place the frame, then a CT scan and match the two up.  Then they place the electrodes and then another scan to check placement, and finally she will be woken.  They will then monitor her seizures at full meds and drop them out as and when they need to.  If they find a specific place they feel they are eminating from then they can heat up the electrode and temporarily kill of some cells around that area and see if it slows seizure activity.  This will give them an idea of what they can do as a permanent fix.
Finally after 7 days they will do another short op to remove the electrodes, then she will stay for another day or do before returning home.  He said he will keep us an extra day as we live so far away.
Then of course we had to sign off. We were told that there is a risk of clots, small or big, a small risk of meningitis as they are going into the brain and a small risk of life......blooming heck. I really hope this is worth it. Immi is about to go through a seriously horrible week that has the potential to bring about an amazingly good change but also has a small chance of bringing about no change or making things worse.  If you are a praying person please pray this brings about an amazingly good change!

A Big Week - Day 1

A big week Day 1

We arrived in Birmingham late last night. Second seizure of the day was a Taunton Deane services....pleased to report that their disabled loos were clean, and they have showers!  We got 10 minutes away from Birmingham in reasonable time and then the motor way was closed both ways due to a car fire and so we got stuck for over an hour! But hey ho, we got here eventually! We stayed last night and tonight in a lovely little Airbnb place, a little annex to the house (with wifi and Sky TV so Immi is happy!). It is lovely and the host is the head of patient experience at Birmingham Children's hospital where we will be, so she has asked if we can give her feedback! Mystery hospital stays...a whole new concept!! Lol!

This morning we went to a local French coffee shop - it really did feel like France inside complete with the music (which Immi loved) and fruit tarts. It was a lovely start.

And then off to Cadbury world.  As we arrived all the characters were outside with a couple of smart looking people, having a photo shoot. The parrot looked pretty perturbed when Immi bounce up and asked for a photo! They definitely weren't there for the kids! We found out later that one of them (the smart ones, not the dressed up ones!) is the present president of Cadbury, so it must have been a photo shoot for something important!

We had a fun time going around Cadbury world and Immi did well, until about lunchtime when she had a seizure and fall and had to be changed.  After that she was complaining of a pain in her hip so things got a lot slower, she nearly fell asleep when we sat on a bench and as we had done the tour and 3D experience we thought we should call it a day there. 
Yesterday I had made the realisation that all of her nightwear is the sort that goes over the head and so I had scoured the Internet for button up pjs.  Immis is of that age where she is too big for many shops kidswear but not big enough for ladies wear (and her tastes in clothes aren't in that place at all!)    I managed to find a couple of button up short pyjamas in M&S and had ordered them so we swung by to pick them up and then came back to our Airbnb pad. 

It has been a lovely day....not trying to ignore the events of the next few days at all!!!

Well, that didn't go according to plan! ***Warning...this post contains spiritual content (and a bit of science)!***

It's windy today here in Cornwall - very windy.  Murray went off to St Austell to preach and I sat listening to the wind, debating whether I should wake take Imogen to church this morning despite a late night seizure.  Why go to church at all? 
I had already watched some great teaching from LIFE church  http://www.lifechurchhome.com/ on my ipad as I drank my coffee in bed, so why bother? I decided to 'bother' as it is in relationship we grow.  
Anyone who knows a bit of brain science (sorry - science is my other great passion!) knows that our limbic system is the part that deals with our emotions and we can only experience joy when we get those oxytocins going, and that happens when we are in relationship with others.  So, spiritual aspects aside,  meeting with a group of people who share the same worldview is great for mental health! 
Apart from that, when God's people worship something amazing happens; perspective on life changes and God breaks in.  There is a part in the Bible that talks about us being raised up on wings like eagles.  It is talking about strengthening, but I believe it is also talking about perspective...being able to see the big picture.  Something changes in our thinking when this happens. 

Anyway, I start getting Immi out of bed (always a challenge in itself), she had a seizure late last night, so I decide she needs to shower this morning.  All goes well despite being at her stop/start pace.  We get in the car (a little late by now) and start to drive to church 5 minutes away.  Half way there she goes into a dramatic seizure, so I put my hazards on, pull over and hold her.  She is wet now, so we drive home - feeling a little dispondent as I had made the effort to battle with the shower speed, get meds in her, get her splint on etc etc.  We get back and thankful the same parking space was still available.  She was still fitting a little so I ran to unlock the door and went back to the car to support her to the door.  As I open the door and lean over to undo her seat belt and almighty gust came along and knocked the car door straight into my fore head....OUCH!  It was that kind of pain that draws tears despite yourself.  I held my head for a moment with Immi saying "Mummy, are..." FIT "you..." FIT "ok?" FIT.  What a pair.  I gathered myself and got her to the house and the bathroom, where the tears flowed for both of us.

And if I wasn't a believer, that is where this post would stop.  But I am thankful that I have a place to go with the crap, so in that moment Immi and I did church.  I messaged a couple of friends to ask them to pray and then we did life with God in the way King David did life with God.  It wasn't pretty, it wasn't quiet.  We ranted and raved.  We told him how  it really is and how we don't want it.  King David was described as a 'man after God's own heart'.  He did things wrong, and wrong was done to him.  His life was full of ups and downs, But he was real with God.  If you read the Psalms, they are full of David being real with God. And believe me - we both got real!  When you are standing, letting it all out to God with your 13 year old telling him how she feels in no uncertain terms - that's real.

So often we have an image of Christianity of being prim and proper and looking neat.  NO, NO, NO!  That is not life with God. That is not relationship with a heavenly father.  That is NOT being a Christian - that is going to church.  There is a huge difference.  

He doesn't want us all sorted and perfect....we never get there anyway!  He just wants our hearts; the pained parts and the joyful parts, he wants to comfort and to celebrate.  And above all - which I needed today - He gives a hope and a security that it won't always be this way.

So... my head still hurts. I didn't make it to church to be with others. But I could be sitting in a mess of tears and hopelessness right now.  Instead, I choose Jesus, I choose hope, I choose joy.

Pulling back the curtain...

Today was not typical, but not totally abnormal for us either. We went to see a potential SN school for Immi this morning. When we reached the class she would be part of she stuck a painting shirt on and got stuck in there. It was beautiful to see. 
Following the visit Immi and I headed half an hour North to the hospital for an EEG. Her last experience of an EEG was the video telemetry at Birmingham which she doesnt remember with particularly fond memories. However I prepared her well, or so I thought! I wasnt quite ready for her reaction. 
When we reached the room she sat down in the chair but suddenly a penny must have dropped because she leapt out of the chair with het hands o er her head screaming "never! You are never doing that again" and dropped to the floor crying. What followed was a mixture of tears and good cop/bad cop parenting from me while the technician and doctor looked on. The tears flowed, with us sat on the floor and Immi lamenting that no one understood what it was like to be her, and that there was no way anyone would ever be able to fix her "nightmares" (what she calls her seizures). No negotiation would convince her otherwise, so I switched to bad cop mode and told her that if she wasn't back in the chair by the time I counted to 3 then there would be no pancakes this evening, no ipad all week and no pizza and film night ritual on Saturday (woe betide anyone who messes with Sat night video and pizza!). I was apparently "evil" and "the worst parent in the world" at this point. To which I told her "I know darling." All the while actually feeling such a mix of emotions; humiliated that I had to deal with it so publically, frustrated with Immi, compassion - I wouldnt want to go through the crap she has to go through either, deep sadness at the despair she feels about her lack of healing and feeling that too and cracks under the determined "tough love" exterior that I was showing. 
At "2" she said "if you put the fingers down Ill get up". We follow a scheme called 1,2,3 magic from the States where I count on my fingers without saying anything so she knows consitently how long she has and what will happen next. 
I stopped, she got up, I breathed a sigh of relief, she put her hood up! It was her last ditch attempt at defiance, but she gave up quickly when I started to count again. She did however scowl the whole hour...quite a feat!
The rest of the session was readonably uneventful apart from them being able to see constant jolts on the screen that were either undetectable or just very slight when watching Immi.
When we got home Immi went straight up for a shower. I obviously have to stay close at this time. And today I was very glad I did. No sooner had we put the shampoo on than there was an almightly crash and immi lay in the bottom of the shower tray, seizing. I am very thankful the glass didnt break and that it wasnt a hugely long seizure.  To be honest I wasnt sure what to do and in the end decided it was the best place to stay. I turned the water off and covered her with a towel and eventually she came round and we finished the shower. As she finished up she said "You dont deserve a girl like me" I replied "I know, I.am so lucky!" "No, I didnt mean it like that."  she said. "I know". I reply.
She is clean and cozy and looking forward to pancakes now.
Are there lessons to learn from today? Well one is that consistency pays off. If we hadnt been consistent over the years, following through with doing whag we say then there is no way we would have got that EEG done this afternoon. 
A friend wrote and said that is sounded like I need a good nigts sleep. Yes, that is probably true, but days like this are pretty commonplace for us now, so no more than normal. I dont normally post a lot of what goes on on social media etc. But sometimes I think it is good to part the curtains and let people see a glimpse of "normal" life.  
So if you know someone who is parenting a child with a special need of any kind, please remember; the snap shot you see is the day in, day out, suck it up buttercup, batton down the hatches, set sail and don't give up life, they have to lead every day. Somedays are tough but good, somedays are tough and bad but every special needs parent knows that their child is worth it.