Where else would you want to go?

Having completed two half days and a very good full day, Zack went to school for two hours last Tuesday morning before I get a call to collect him as he wasn't very happy. 

Yet again, we are met with a suspected chest infection, another course of antibiotics and a Pants that is coughing up a load of nast and updating his seizure numbers to a higher frequency.

Talking of seizures we have now increased medicine two and so far it has made not one dot of difference. This could be because he is ill which means we do the waiting game and see if things improve. 

However we just cannot get him right at the moment. Fingers crossed he improves in the coming days. Don't get me wrong he is still very happy and laughing a lot but I am sure he is thinking that he is now much too cool for school and is attempting the world record of a home staycation. 


Talking of staycations, I must share our photos of our brilliant holiday in the UK. We stopped at Cornwall for a few days before travelling to North Devon for the Great British seaside extravaganza.

The first spot we stayed in was, how can I put this politely, well, imagine what an old granny's cottage might look like in the 1970's, you know the one that has a few dogs, is a bit lapse with here personal hygiene. You get the picture? We stayed one night before I complained to the owner who moved us into a much nicer cottage. By the way prior to this move, he offered me a £25 voucher to use at the local pub. Nice try.

Cornwall was good, we visited Padstow, had some fish and chips from Rick Steins posh chip shop, (rip off price) but it was delicious. 

Oh, Padstow, that reminds me. A short tale of disability discrimination. Too long for this post I shall tell you in the next one.

We also visited Port Isaac, bit boring I thought. Very pretty, lots of expensive shops to tear the money out of hands of middle class tourists but pretty. Meh. That would be my final comment.

Before we drove up to North Devon we stopped at the Eden Project. We've been before and it is good, but the thing that impresses me most every time is the Changing Places bathroom. A proper disabled toilet with a changing bed that goes up and down, even showering facilities. Amazing, it makes all the difference.

North Devon. We booked an apartment in Westward Ho and oh yes, it was fabulous daaarlings. Loads of space and a hot tub on the roof garden. We had floor to ceiling windows that overlooked the atlantic ocean. My motto for the week we stayed was "Where else would you want to go when you have Westward Ho." (You can have that for free Westward Ho tourism marketing people, actually forget that if you use it I'm suing, but feel free to offer me some monetary value).

Ok, it's only a little seaside village and some of it is a bit chavy, but there are some good restaurants and Zack loved his hot tub plus in our en-suite there was a whirlpool bath with lights which he was even more impressed with. I swear we have both never been so clean, by skin was beginning to shine by the end of the week. 

Scarlett was addicted to the beach and I'm sure as the day's wore on she was morphing into a diddy surfing chick. The whole atmosphere was relaxed and easy going, what also got me was that nobody batted an eyelid about Zack. Usually you get the staring, the really rude staring but here people just looked smiled (not the pity smile), some people would come and say hello and chat to Zacky like he was just an ordinary little boy (which is exactly how we see him). It was a refreshing change. I was hoping I would get left behind in the Penthouse with the 55 inch 3D tv and full sky package. Alas it was not to be.

Here are some pictures. Aaaaaah good times.

I'm telling you mum Rick Stein better bring me my Scampi and Chips soon or else I'll go in there and cook it myself. Understood.

Aaaaaaah beer, it makes me so funny.

Swift drink of the rough stuff before I start. Actually he was very good.

Told you we loved the toilet at Eden Project, though it does like Scarlett and I are in desperate need of the loo.

I love my hot tub.

Yes I do.

You know,  just chillaxing,

The view from our window.

Again, where else would you want to go?

There was a sweet shop underneath the apartment, never give three year olds free choice.

He will start school

The good news is we finally managed to speak to someone at the hospital about Zack's EEG results and it shows that he is not in non-convulsive status. For now we carry on with the regime of introducing his new medicine. The dose he is currently on is below the therapeutic window, we still have room to increase before he will be getting benefit from this new drug. Without tempting fate, he is doing well, and all looks promising.

In other good news I finally managed to get to the hairdressers and rid myself of an awful root affliction.  Well, good news is good news.

Next year is a big year for Zack. He will start school. School. The very thought is terrifying and we still haven't made a firm decision about where to send him.
 
Whilst the decision making process is going on there is also lots of background activity happening with his statement of special educational needs. Reports have been requested from all manner of people involved with Zack including ourselves.

I have begun to write all about Zack and his educational needs but find myself saying lots of positive things that would lead you to believe he doesn't need help when in actual fact he needs lots of help. Help to access the world, help to understand his environment and a place that will see past his disabilities and understand his potential.

However for the purpose of the statement and in order to get the correct help I need to be blunt and very basic about his needs. I've put what I have written to one side for the moment in the vain hope that either a) some magic fairy will finish it or b)when I re-read it will actually be better than I first thought and not require too many amendments.

On top of school there is also plans a-foot at Casa Gould-Price. Planning permission has been granted for us to extend the house, providing a new kitchen area, oooooooohhhhh finally a new kitchen. Leaving the old kitchen as the new space for Zack's super crib and bathroom. Again. Thought of it fills me with dread. And again the thought of that is being pushed to the back of my mind until we are at the stage whereby we have past building regulations, chosen a builder and  are about to start work.

No wonder I need my hair done I am sure I will start to see grey hair soon. Failing that my four inch root problem won't look out of place when I check  in to a rehab centre having suffered a mini breakdown. Every cloud and all that.

He has suffered

October 29. That was the date I last blogged. A lot has happened since then, hence no time to blog and to be honest I didn't want to blog. I spent so much time thinking about things, talking about things that I didn't even want to write about all that was going on.

But first. Ho. Ho. Ho. Merry Christmas. We, presently are having a lovely time. Which makes a change from the rather awful few weeks we have dragged ourselves through.

For the past couple of months we have been suffering awful bouts of illness, ranging from coughs, colds, viruses that cause you to vomit and blinding headaches. I have been so ill that twice I couldn't muster the energy to look after anyone except myself and usually I just find some extra energy to carry on.

Scarlett has had colds and the croup but managed to fight them all off. But Zack, poor Zack, he has suffered. He managed to catch several viruses one of which had him coughing none stop for 24 hours. Illness on it's own we can cope with but on top of all this his epilepsy decided to rear it's ugly head. Zack began to have small little twitches down his left arm, raising his eyebrows and pushing his head back at the same time. It got so bad that they relentlessly continued and would not stop. We took him to the local hospital where he had a two day stay. Pushing drugs into his veins, raising his current epilepsy drug to it's highest dose and eventually sending him home slightly better. In fact we had a week of going back to normal and then he got a bug again, high temp, vomiting, usual story. And again the same seizures appeared.

Fortunately we had an appointment with his neurologist and where sent to Alder Hey for an EEG to see if he was in non-convulsive status. So far we haven't heard back from the hospital and are hoping for some answers tomorrow.
Zack has started a new drug. Sodium Valporate, he's had it before when he was a baby. We are hoping that when he gets to the right dose that it will work. At the moment he is better but not how he used to be, he isn't having seizures all the time but he is having little batches throughout the day lasting about five minutes in length.

Despite all the rubbish that has happened to him, he still smiles and laughs every day. And he is having a most excellent Christmas. Got his own dark room, not for his photography hobby but for all his new light toys that Santa brought him.

I am hoping that 2013 will be much quieter for us and healthier. Either that or I am wrapping the house in cling film and never leaving. Ever.

New Plan

Happy New Year. Bit late I know but we've been very busy.




Despite Zack's sedate nature we had a lovely Christmas. Even managed to have a Christmas lunch, just Dan and I whilst both children slept. That never happens.


Zack had started responding well to the medicine but the side effects were awful, floppiness, sedation etc. This all lasted for about eight days then whack the seizures crept up to the 80s and 100s again. We nearly took him in to the hospital but to be honest I thought there was no point. It was a Bank Holiday and probably skeleton staff on, all they would do is give him rescue medicine. 


I waited until the next day and spoke to the epilepsy nurse who in turn got hold of his neurologist, who in turn came up with a new plan.


The thinking was that the Clonazepam had done it's job for a bit but then his body got used to it very quickly. His new drug, Keppra wasn't up to the required limits so that needed to be upped a bit quicker. 


Thus far we've kept the Clonazepam the same and upped his Keppra. We were meant to up it again on Saturday but we hung back because his seizures have slowed down. Today he's only had about 15 which is brilliant compared to what he was having. I am going to ask about doing a slower increase again just to see if we can knock off a few more.  I am hoping that it stays this way for a while but you never know with epilepsy it can all go to a bit rubbish at the drop of a hat. 


On a good note Zack continues to sleep well and is in a lovely mood. Here's some pictures of our Christmas time. Enjoy.

Oh Happy Days

They're all mine

Loving the bike

Mmmmmpfffff......that's what the horse is called.

Loving the truck

Christmas.....it's hard work

He actually made him self sick with laughter

Well, it's beginning to look a lot like Christmas.....and somebody has some extra special presents coming his way and (her way).


Seizures are a bit better around 20 -25 a day rather than 80 odd. Still quite fuggy. Nurse suggested we drop one of the Clonazepam doses see if he doesn't need it. We did that. He needs it. 


Noticed he isn't as groggy as before but still quite floppy. However he is finding everything hilarious still. 


For example. Something was so funny this afternoon that he actually made him self sick with laughter. Yep, vomit all over me and all over him. Mind you Christmas cannot officially begin until you've been vomited on by a child. 


Glad he's in a good mood and can't wait for us all to have our Christmas dinner together. Scarlett's first one and Zack's third, he's beginning to be an old hand at it now. Will post Christmas photos after I have recovered from Turkey dinner, chocolates, trifle, mine pies, drink, chocolates, cheese and crackers. 


Happy Christmas everybody have a lovely time.
XXXX

It all goes pear shaped

Seizures have remained excessive. To the point where I just couldn't count them any more as it was depressing, let alone a pain in the arse for Zack.


Fortunately Zack's increase in seizure activity coincided with an appointment to see the neurologist. The outcome was that the Lamotragine no longer works for Zack. They don't know why this happens, it sometimes just stops. With some people they can have a long while of everything being great, pretty much like ourselves, then bang, it all goes pear shaped. 


We have a new plan. Zack is being started on a new drug called Keppra. In the meantime he is also on Clobazam to effectively try and stop the seizures quickly. I think the plan is to keep him on the Clobazam until we get the Keppra up to the required dose. We will also begin to slowly wean him off the Lamotragine.


What we now have is one stoned little boy. The doctors told me that it would sedate him and according to the side effects this lasts for about a week. It's starting to have an affect on his seizures but he isn't as awake as he usually is, kind of in a foggy haze I think. 


Don't get me wrong, the world to Zack is still happy and funny. It's just he's a bit floppy and sleepy looking. When we give him the two at night, he goes out quite quickly and remains asleep through the whole night.....still, every cloud and all that!!!!


I hate seeing him like this, Dan doesn't think he's too bad but he's not like he was before really aware and switched on. Dan keeps reminding me that it's only for a short while to get things  under control and if it carries on we just go back and see what else we can do. He's also read that you can split the dose up, meaning we could give more at night than in the day time. As usual he remains positive and I remain protective. Pleased it's working with the seizures though because I think he was having around 100 a day.


The doctor also asked if we would like to try the Ketogenic Diet as part of Zack's treatment for epilepsy. I'll go into this in more detail when we begin. But we are up for trying anything and I am happy he suggested it as I really would like to give something a go that isn't medication.


Glad things are now a little more steady if not a little more sedate. Actually I think I'd rather like to be in Zack's frame of mind, a hazy Christmas sounds about right.

Downward cycle

Bah. Humbug. 


Not you Christmas. You, you pesky seizures. 


Zack's seizures have gone into over-drive so much so that on Friday we were on the phone to the hospital to see if we should bring him in. He should have open access to the children's ward so that we don't have to hang around A and E explaining all the ins and outs of Zack.


Oh hang on a minute we aren't in the books any more. Nope according to the nurse because he hasn't been in for a good while his name's not down and he ain't coming in. Her advice, you'll have to go to A and E.


Great. At this point I leave a message for the epilepsy nurse who kindly gets back to me and we get an appointment to see the consultant that day (you can't knock em for sorting us out). By the time we get to the appointment Zack has had well over 70 tonic spasms. He goes very straight and stiff, arms out stretched head back and pursed lips. They last at the most 10 seconds. They don't bother him and cause (according to the doctor) no lasting damage. It's just  if he continues to do these constantly then it's going to affect his development. 


The outcome of the meeting with the consultant is to up his meds, wait and see how this goes, wait and see if he has any underlying infection brewing and see the neurologist on Thursday.


Well, it's now Monday and I've lost count of how many seizures Zack's had. We've given him a small dose of chloral hydrate to break the cycle and get him off to sleep in the hope that tomorrow will be a better day. 


Every so often we get stuck in this downward cycle. It's a bit like his medicine has been holding the door  tight shut and his seizures have been banging on it trying to get back in. Now they've finally broken down the barrier. 


I am confident we can try something else that may help for a while. Whilst I am worried I am not overly anxious, I think we can win again. Besides we've had harder battles than this. 


As a footnote Zack is still very smiley and still finds me hilarious. When I do something it's a laugh like this ahahaaaaaaa haaaaaaaaaaaaaaaa haaaaaaaaaaaaaa huuuuuuuuuuh. 
When his dad tried to entertain him in the same way I swear he just made this sound.....Huh. 


Enough said, I am obviously the funny one.

Zack has remained happy

Tis the start of the party season and Zack has already enjoyed the festive spirit with the F.UN Christmas party. His sister was allowed to tag along, she wasn't impressed with the whole party scene at first until after supping her milk. Then there was no stopping her. She also tried to unwrap Zack's Crimbo present from Father Christmas. My goodness little girl, there's a limit to how much the Pants will take.


Here's a pic of Zack with his daddy and his huuuuuge present.

Alongside the festive goings on we have noticed an increase in Zack's seizures. Started at the weekend with lots more of his extended body seizures. They have been steadily increasing but not bothering him so a few calls in to the local epilepsy nurse and an appointment next week should see us with a new plan. I am thinking he has got a bit bigger and heavier and therefore needs to increase his Lamotragine. 

On a good note Zack has remained happy. In fact he is changing a fair bit, he is starting to find lots of things funny. Such as saying hello to him, tapping a plate with a fork, brushing the side of his face, all hilarious. Long may it continue.

Oh and before I go I would like to give a little hello to a lovely lady who reads this blog who has announced some exciting news. 

Congratulations Ms Harvey the Pants approves. XX

Class sizes were good

We checked out another school for Zack. This one we had heard mixed reports about so I wasn't holding out much hope, neither was Dan.


Well, well, well very pleasantly surprised. It was really nice, not too big, not too small. They answered all my questions and gave an answer to everything that I asked. Alleviating my fears and worries. Class sizes were good, they viewed communication as really important to all children. And they are updating parts of the school to help accommodate children with visual impairments. 


Even Zack liked it. It felt right. So now we have two schools to choose from and just one more to look at. The decision on where he goes is still tough and I have to consider mainstream school. But come September, he's off to nursery, I'll get through that first. I am sure there will be tears. Mine probably, not his.


Small Update


Zack continues with his conductive education. Continues to dislike it but did do some pushing through his legs when standing and when in a crawl position moved his hand forward and then his knee. Small steps but progress none-the-less.


His seizures are coming down a little with the increase in medication. As we were increasing the dosage I did notice a slight change in Zack. He just didn't seem himself I couldn't quite put my finger on it but he wasn't right. Mind you he had also been ill on and off with a cold or cough or vomity virus thing. He seems back on track now so perhaps the sudden increase just threw him out of kilter a bit. 


Sleeping. Well, sleeping is errrrm here and there. We sometimes have a good week of reasonable bed times and then we have a series of bad nights. The doctor said that if we have three bad nights in a row to give him some chloral hydrate which is a sedative. So this is what we have done tonight and bingo fast asleep. We are hoping that this will give him a good nights sleep, he will feel better in the morning and we can get him back into his rhythm again. That's the plan. 


Having Scarlett has lead me to approach feeding Zack again. I am weaning Scazzzah we are currently trying apple, bananna and baby rice. Whilst she is sat in her high chair I pop Zack in his sunbeam chair. Whatever she tries he tries. And do you know what? He is having a good go. The other day he had pureed apple and ate about four spoonfuls. I just think if he has a go he has a go if he doesn't want to or it causes him distress then no bother we stop. No stress.


And that's were we are all up to. Think I need another holiday.

Yes 5am!

Dan came back from his sleep seminar with a host of ideas and enough reasoning to make me try the sleep technique of leaving Zack to cry it out. 


Oh God this is the hardest thing I have had to do for Zack and we are now on the third night of basically following a bedtime routine whereby we put him in bed whilst he is still awake and leave him to fall asleep and settle himself on his own.


First night, we put him down at 7.30pm the crying and moaning went on until 5am, yes 5am! We went in every so often to pat him on his back, to reassure him we were still there but it was so hard not to pick him up and go back to the old thing of holding him and rocking him whilst he cries and then finally drops off. Dan kept reminding me that the only reason he is crying is he wants to get up, he doesn't want to go to sleep and he has learnt that us holding him means sleeping and going to sleep. 


Night two was slightly easier. We did the same thing again. Remember routine and consistency is the key. (According to Dan, who now seems to be an expert on sleep). By about 9pm it had gone quieter. I went to the supermarket. I came back to Scarlett wanting food (nothing new there) which meant that her crying had woken Zack up. So back to square one with him moaning and crying. Eventually he went to sleep at about 11.30pm. Okay, a bit better than night one.


We are now on night three and he is moaning in bed. He is so tired he couldn't keep his eyes open downstairs. All I want to do is go in and pick him up but it would make no difference to his moaning he would still cry, in or out of bed. I feel awful but we have to carry on and break this dependancy on us for him to fall asleep.


Seizures


We had the results back from Zack's latest EEG. Apparently the Hypsarrythmia has gone. He no longer has infantile spasms. What he now has is partial seizures that is they are in one part of the brain on the left side. I asked the epilepsy nurse if this was a good or bad thing, she said well we aren't going backwards and the medicine he is taking treats partial seizures. So for now I'll take this as a good thing. We see the neurologist in June so will hopefully get a better explanation then as I don't fully understand it myself.

We are getting quite desperate.

Oh there have been many sleepless nights in this house. And it is not because of the youngest member of our family, nope, it's all down to the fact that Zack now keeps the hours of a student.


We are having real big problems getting him to sleep. Once he is asleep then all is well and he will sleep through the night, but of late he will not go to sleep at all.  We really don't know what to do with this one. He is closing his eyes and looks like he is drifting off but then starts getting upset, howling, crying, sobbing and being extra tense and grabby. Eventually when he does go to sleep, he will just drop into a deep sleep and you can get him in bed. But the times of night have varied from 11.30pm to four in the flipping morning. 


We have tried drugs, (Melatonin), to help him drift off. Does not work one dot with him. We have tried leaving him crying, does not work. Makes him more stressed and eventually he is still awake, in bed, at 3am. 


Dan is off to a sleep seminar tomorrow evening to try and get some advice. I just keep thinking it will be filled with other parents who look like they have been dragged through a hedge backwards. Maybe they will use the time to catch up on the sleep they have lost. 


We are also contacting the neurologist to see if he can offer some advice. I know a lot of parents with children with special needs are affected by lack of sleep but if anyone has a magic cure please feel free to leave a comment. We are getting quite desperate.


On top of a new baby to look after (who is being as good as gold, although I think she is saving all the naughtiness up for another time) Zack hasn't been too good. He has a small case of a tummy bug, which means he has been a bit off colour and not really himself. He was better today, we managed to do his therapy, go for a walk and have a bit of play time. Plus he was smiling lots which means he is getting back to normal.


Other news is the seizures have been creeping up again. We are upping his medication as he is still on a low dose but all this takes time. His new crunchy up seizure, where he looks like he is trying to sit up and then gently relaxes backwards with a few seconds of unconsciousness are perhaps, according to the neurologist, spasms. He did used to suffer with stomach spasms a lot so it makes sense to me. He was having quite a few of these but they seem to have lessened slightly. 


Oh yes, it is all fun and games at the moment. A passing phase I hope, it usually is, well that's what I keep telling myself.

Nanny P thought he sounded like a little pigeon

Zack went for his fourth EEG. It didn't help that he got stressed on the journey there. He decided to take a dislike to his new car seat. By the time we arrived, he was clinging on to the harness for dear life, panting away with a red face. The poor little guy then had to be put in his pram which includes yet more harness, so again not happy. By the time we eventually got to the EEG department he was extremely annoyed. 


The receptionist came out for a cuddle with him, I just worried that he may actually spit all over her. She was more bothered about telling me how much she loves babies and has a new 9 week old grand-daughter. I was still bothered he might spit all over her.


Just before we were about to go in Zack managed to be sick so I told the nurse to give us five minutes. This was taken to mean come over and stand next to us whilst I try and calm Zack down. So no pressure to get a move on then.


Once we were in I said that he was a bit distressed, but they continued to wind him up even more by sticking the electrodes all over his head. And to top that off popped on a nice net bonnet. Great. Zack continued to be upset. By upset I mean this. When Zack is anxious he bends his arms at the elbow and opens and shuts his hands as though he is trying to grab something in mid-air. His breathing also goes a bit quicker. This usually happens when he isn't comfortable, is getting stressed or is going to be sick. Sure enough he was sick. But the EEG continued and the filming of the EEG continued too. Nothing was stopping this session from taking place. 


Whilst we were there Zack managed to do two of his subtle spasms. I pointed them out to the nurse and she said that there was a slight change in his brainwave pattern when he did it. She then came over and said ooooh lets shut your eyes now and proceeded to place her finger tips over Zack's eyelids to close them. This only added to Zack's increasing annoyance. I asked why she did this as I hadn't seen this performed during any of our other tests. She said that it was to see if it causes any changes in his brainwaves. 


Test over we were free to go. Zack wasn't for going in his pram so I carried him a bit of the way but he's a weighty bloater so I popped him in his pram and told him that I can't carry him forever and he would just have to lump it. He responded by trying to hold his breath and making his face red. When back at the car I got him back in the car-seat and accidently caught his hair as I was lifting him up. This resulted in a how could you cry and then he didn't speak to me for the rest of the journey. It was a very stressful morning. Not helped that he was starving hungry too.


We stopped over at the house of Nanny/Grandad Price were he got fed and fell asleep and I got a sausage sandwich. 


When he woke later on we managed to get him smiling and even some I am really enjoying myself vocal noises. To which Nanny P went "he's just made a noise, he's just made a noise". "Yeah I said that's what he does when we chat", you know like it was no big deal but really it's the most cutest little sound ever.  The best was when I laid him over my knee and pretended he was superman that resulted in super laughs. Nanny P thought he sounded like a little pigeon. A cute one though.


We go to see the neurologist in about a weeks time so we should have the results of the EEG then. However I have noticed that his spasms have gone down to about 2 or 3 again. So I think that they may have increased before because he has been poorly. He has been a bit rough with a cold (which I think he caught from school) and it is common for seizures to increase when ill. That's my thinking but I suppose all will be revealed.