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.