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.

Keep a watch on it

You know that botox stuff? Turns out it's quite good. Normal service has resumed for Zack. Back to full on lying across me cuddles, back to standing frame, back to straighter leg (not entirely straight but much better) and back to school.

School. A new class and what's more, a new school. Kind of. The old school that he was in has moved to a new site which is lovely except for the parking facilities and the fact that it is absolutely crazy in morning.

I went in with my usual million and one concerns, Zack went in and proceeded to sulk nor speak to anyone. He has started back with two half days. Today's half day he came out looking shattered but apparently had a great morning. I am hoping this continues.

His epilepsy remains difficult. He is still having bouts of seizures, one day they are not lasting as long the next he is having longer sessions but less of the amount of clusters. We continue to keep a watch on it and I have found a great app on the Epilepsy Society website that you can use to keep a diary of seizure activity.

I hope his leg remains well but who knows. When the botox wears off it could go back to how it was or remain normal again. I am hoping for the latter.

Sulky chops

Oh did I say they weren't seizures, oh, hang on, no, they are most likely to be seizure related.

Huh?

Yeah, huh?

We went to see Zack's neurologist who explained that what Zack is doing is more likely to be related to his seizures and should be treated as though it his epilepsy rather than a movement disorder. Oh for goodness sake......

Whilst we were given the correct information that the episodes Zack was having during the EEG did not show a spike in electrical activity it doesn't account for what could be happening deeper down within the brain.

What I read is this. We haven't got a clue what he is doing or why, so we will just try the usual path of drugs and if that doesn't work...well, thank God we haven't got there yet.

On a positive note, he isn't having as many episodes, they are getting lighter. The plan is now to wait 7 to 10 days and see if everything goes back to normal. If it doesn't then I think we may be introducing a new drug. Great.

And with that news, Zack went back to school on Monday. I was my usual concerned self as I left him in the very capable hands of team school, but I was worried about him all day. I needn't have been concerned, as sulky chops (yes, he wouldn't even look at me when I dropped him off) was very happy and had a great day. Oh, and only one of his seizure (non seizure, what the hell is it) episode.

Brilliant. He decided on the way home, to provide both Scarlett and I with an example of all the little seizures he had saved up whilst being at school. Little git.

It's good to have him back to almost normal. Lots of laughing, smiles and chats. He is now getting particularly good at saying hello. I must record that to play on here at some point. 

Started a new bedtime routine tonight. It goes like this. He gets put in his bed, I get in with him. We have two stories, then night, night, I leave. He had about 20 minutes of tantrum. It's gone quiet now. I must go and check, hopefully he is okay and fast asleep. And I hope the cat hasn't sneaked in.

Zackisms

The good news is we had the results back from Zack's latest EEG. His new stiff jerk movements are not seizures. Phew. We didn't think they were and thank goodness the hindsight was there to see what we were treating rather than dose him up with a cocktail of anti-epileptic drugs. 

His brainwave patterns show background abnormality (well, yes, he has considerable brain damage) but the episodes he is currently having show no electrical spike abnormality that would suggest seizures, it is more likely a muscle abnormality given his condition.

The bad news. We remain in poo/vom city. Slightly better today, he's only been sick a little, kept all his water and meds down and no code browns. Thank the Lord. 

Agreed plan is to allow this virus to pass and see if his new Zackisms settle down, if not, then possibly an increase in the Baclofen. The Zackisms haven't settled and were quite bad today. We are thinking of requesting an appointment with a neurologist to discuss this new development, I would like to understand a little bit more of what they think it is. I am also hoping that it goes away and stays away for a good while.

Oh Zack's big boy bed arrived. And it is fantastic. He is so tiny in his single bed, so little covered up with his big boy Marvel Avengers duvet. And sleeps so well in it. Yes, sleeps. In bed. So much so, he actually had an afternoon nap in his bed, unheard of in this household. 

He woke up in the early hours last night. I went down to comfort him, but really I just wanted to have a go of his tilting bed. It was very comfortable. Dan changed shifts with me about 4am and I heard Zack laughing and then Dan state, "well, move over then." 

Talking of laughing, I've missed by boy. He's been very miserable but today we had more smiles and a few chatty noises. He's starting to come back. If he can come back and the twitches disappear, life will be good.

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.

Run with your gout

Where have the weeks gone? They've disappeared into a black hole known as my life.


We've had a very stressful few weeks. It hasn't helped that Scarlett got the cold beyond all colds. Well, what do we expect when you take her to a soft play area within which she finds the dirtiest looking ball to eat. Oh and follow this by letting some little girl kiss her on the lips a few times. 


This then led to Zack getting sick, vomiting and having a general snotty cold. Which he is still getting over. This then leads on to more seizures and us holding off on increasing his medication just in case him being ill is the cause of the influx in tonic spasms.


And then, I get sick which is even worse because dealing with two crying children whilst your head is banging, your throat is sore and your nose is snotty is bad, bad news.


Okay. Everyone breathe out because things are now a little calmer.


Scarlett's cold is gone. Zack is on the mend and off the Clonazepam. He is actually off it a bit quicker than I would have liked simply because the chemist gave us a different strength of his medicine for his repeat prescription. This small matter, I only picked up on when I looked at the label. We've been giving him half his dose for a few days so now we just dropped it off completely. 


His seizures are becoming longer in length but not as many. Still too many to be having so I think we may have to increase the medicine. I have a gut feeling though that this one doesn't work for him. Another one we can chalk up on the board. 

It's nice to see him getting back to himself though and showing his rather wicked sense of humour. His poor daddy you see, he has gout. Quite painful I believe. One evening, Scarlett was going to practice her usual act of pulling herself to standing by grabbing on to the T.V stand. Not good when you have a flat screen tv wobbling and threatening to smash on top of her head at a moments notice. 

I shouted for Dan as I had Zack sat on my knee. 

"Come on, quick, run with your gout, run with your gout." To which Dan hobbled as fast as he could and at the same time Zack went into a fit of hysterical laughter. Proper hahahahaha laughter. Obviously seeing his father in pain is extremely funny especially when his mummy tells his daddy to speed up using his gamy foot. What a strange child. It was funny though.

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

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.

He slept through until the morning. Bliss.

Zack's ability to switch on and interact has a lot to do with the amount of sleep he has during the night. 


As you avid readers will know we have huge problems with Zack sleeping and now, well we got to a stage were we said enough was enough. No more picking him up, no matter what time he stays awake until.


And we decided to go hardcore on him, we put him to bed and said whatever he does we do not pick him up and cuddle him to sleep. He stayed awake until 4am the first morning but I didn't given in, nope I stayed strong and he eventually gave in to sleep. We got him up at the usual time of 7am so the poor little man had only three hours of sleep. That night he went to bed at the same time, followed the same routine and was asleep by 8pm. He slept through until the morning. Bliss.


We have been following this regime now for about two weeks. He doesn't always fall asleep at 8pm each night, sometimes we have 1ams or 2.30ams but we still do not give in. He isn't screaming the place down, just moaning, we go in and pat him on the back every twenty minutes or so until we don't hear much from him. Then we know he's gone to sleep. 


The big difference is if he has had a good nights sleep he is brilliant the next day. He's so alert, smiley, happy, and very interactive. The other day he had a great nights sleep and was in a wonderful mood. So much so he didn't stop laughing all day. He was even making different noises and playing games. Simple games. Where I would go out of our bedroom, he would pretend to cry then I would go in saying "Did you shout me?" to which he would laugh hysterically and even try and make a mmmmaaa noise. It was the best day ever. I love it when he's like this as that is the Zack I know. The cheeky one, the funny one, the sociable Zack. 


I think the other thing that's made a big difference is his epilepsy medicine is making an effect.  He isn't having as many seizures, probably about 3 to 5 a day, which is a difference to what he was doing before which was around 15 - 20 a day. 


At the moment things are pretty good. Stable and progressing. This is where we like to be and what I hope will continue. 

Then came what shall be known as car doorgate.

So Zack went to hospital for his appointment with the neurologist about his epilepsy. We hadn't seen a few of the familiar doctors and nurses for a while (which is a good thing as it means Zack is behaving himself) but this meant we had a good half hour of, oh my he's shot up, look at the hair, look at the hair, it's crazy.


Even his neurologist commented on his hair, oh and most importantly how good Zack's posture was. Yet another professional stating that his posture had improved. More proud mummy moments. 


We discussed that he is now only on his Vigabatrin and that he has been on it for six months and we were concerned that it might start affecting or damaging his peripheral vision. Since Zack's eyesight has much improved we don't want to take the chance of making things worse. So a new plan was agreed that we would wean him off the Vigabtrin. If his seizures go up, that is, he starts having more than his usually, barely there 3 - 5 a day, then we introduce a drug called Lamotrigine, which has less side-effects.


We are now in the process of weaning him off his Vigabtrin over a course of two months. I can't see him being medication free but you never know, stranger things have happened. It was also suggested to us that we could cross over the medications, take him off his old one and introduce the new one at the same time. But how will we know if he really needs it if we don't give him a chance to be medication free?


I guess here we are again in unknown territory and only time will tell. At least we got lots of very happy with Zack and things are good for him and very pleased, so that's nice. Oh his paediatric consultant came and said hello and gave us a thumbs up (I think this means good and well done from him). 


All in all a very good day. Then came what shall be known as car doorgate.


Oh my god. I have injured my child. Yes I am mortified. 


Thought I would pop out to Tesco with the Pants to get a few bits. Surprise, surprise no parent and child places left, (well there's only eight and for God's sake most of the people that shop there have kids so come on, by the way I would never have said that, six years ago, I would be cursing those parent and child spaces).


So we park in a normal spot and it's a tight squeeze, and it starts lashing down with rain, I go to get Zack out of his car seat and out of the tiny gap between the car and the door, when he drops his head forward and, whack, he bangs it on the car door. 


Ten second delay then desperate screaming from Zack. You know you get that feeling in the pit of your stomach and you feel sick, magnify that by at least a 100. I get back in the drivers side with Zack who now has tears running down his face and take a look. Oh God, there is blood, he has gashed his eye. Oh God, his eye is swelling up. I am no longer a good mummy. Five minutes later Zack has stopped crying is back in his car seat and we are going home.


A call to Dan equals me in blind panic. Do you think he needs to go to A and E? Will his eye ever go down? What do I do? 


Two hours later Zack is laughing in his little room. His eye has gone down. He just has a scratch. It only bled a couple of dots mopped up with a tissue paper. Today it's almost healed. Okay, slight over-reaction. I still feel like I let him down. He still loves me. Dan still reminds me he fell down the stairs with him. Oh yeah I recall, may be I'm not so bad after all. 


Lesson learnt, when getting a child with special needs out of a car seat be super, super careful with their head. Just because they have good posture and head control doesn't mean you can get cocky.

He is currently at 120% ratio of weight to height

Zack is enjoying  a few days with both mummy and daddy this week. Dan has got some time off work so we are getting to do lots of fun family things, like mowing the lawn and cleaning the house. 


Only joking, we just did a bit of that in between Dan experiencing a day in the life of Linzi and Zack. 


We went to our dietician appointment today. This includes measuring and weighing the Pants. Zack continues to put weight on and has grown in height. All good stuff so we carry on as we are. Any more fast weight increasing and someone will be a right old porky pig. He is currently at 120% ratio of weight to height which means tubby. He needs more stretching and less widening but who cares, he'll catch up soon enough.


We went swimming this afternoon. Zack enjoyed his swim support ring thing. He was more bothered about looking at everything than us pulling him round the pool. Dan enjoyed taking him swimming but not as much as last time as whilst we were there Zack had a few of his infantile spasms, which also caused Dan to go into worry mode.


He has had quite a few today (Zack's spasms not Dan's worries). I think we may be giving the consultant a call just to see what he thinks. We aren't sure if the 2mls of Sodium Valproate Zack was on was just keeping an edge on them or if he needs a new drug. It's so hard to tell.


I have been having a look at a few sites about tube feeding children and in particular weaning kids off being tube fed. There is a place in Austria that specialise in weaning children, known as Graz


They do it by reducing the amount of tube feeds that a child gets so that they start to experience hunger and thirst. They also allow kids to play with food rather than forcing them to eat. 


They let the child naturally request the food. They have a very high success rate but I think a lot of these children are not necessarily kids who have disabilities such as the brain injury Zack has, they seem to have a bit more motivation to reach for food and toys. 


Zack doesn't do any of that (yet) so I am not sure how it would work for him. However there is no doubt that Zack can be motivated by thirst and hunger. When he had his PEG fitted and he came back from the operation, he was so thirsty that Dan gave him a gauze with water and he sucked it dry. 


I just think that our NHS don't have the encouragement or the time to focus on getting children weaned off feeding tubes. They seem to see them as solving a problem for a child that can't eat. I think we need to take a new approach to trying to encourage Zack to feed as I am pretty sure the problem now is not because he struggles with his swallowing. 

The teeth growing is taking ages

Zack has been a bit under the weather this week. His infantile spasms have increased slightly. I had got used to seeing hardly any at all so a sudden jump to about ten a day makes you question the reason for the increase. It could be because he has been a bit poorly, it could be because he seems to have five top teeth coming through, or it could be because he is now off the Sodium Valproate.


We have decided to wait a couple of weeks to see if they decrease. That way if they do we can assume the increase has been due to him being not quite right health wise. If they continue to increase then we are back to the drawing board and I am afraid a new drug may be introduced.


Yes, these teeth things are causing a lot of bother. For ages and ages I thought Zack was never going to get any teeth. I thought he would permanently have his gummy smile, that he might be the first baby in the world to never grow teeth. Now, his top gums look all swollen and you can see the tips of quite a few teeth. Nothing on the bottom though which is weird. But then Zack doesn't do things in any normal fashion. The teeth growing is taking ages, he has been extra drooly and the whole thing is compounded because he can't put anything in his mouth to chew and break the gums. 


To help we have taken to giving him our finger to chew. He really does give it a good old chew when you pop it in his mouth. But what he loves more than anything is a bit of Marks and Spencer chocolate mousse. Oh yes, not your plain old Tesco mousse just the good stuff. 


Come to think of it I think it was the chocolate mousse that made him a bit sick the other day. Maybe I should re-think that one.


Anyhow, here are some pictures of the mess. Along with a video clip of an amuse chocolate covered pants. Enjoy.

Can I just point out here that at the end of this giggle fest is what I think some video footage of Dan and Brett shaking their booty to Womaniser, their favourite tune. It was a complete accident how that got on there and now do you know what? I just can't get it off.....oooopsey.

Make an on-line slideshow at www.OneTrueMedia.com

New toys and new positions are just the funniest things in the whole world.

Zack had a visit from our favourite ladies from the visions specialist department. The Pants had just finished off a rather large breakfast so decided he would take a little nap. His new teacher had brought him a little apron to try on, not that they were going to get him baking or anything, oh no, the apron had velcro strips on the front to which were fixed lots of different fabrics and toys to feel.  


When the Pants woke up he tried on the apron. He reminded me of a butcher but seemed to quite like the feely things that were stuck to him. His new favourite teacher is going to make him his own apron and a special feely floor mat to go underneath his Little Room. She has provided me with some information on Canaan Barrie signing, a form of on body signing for deafblind children. 


Of all the people we see this gang is the most useful, helpful, positive and encouraging bunch. They are just brimming with ideas and handy suggestions.


Zack also did a little showcase of his head raising whilst on the floor. To which he received much praise and ooooh clever boy comments. I gave him a round of applause he quite likes a few claps when he's doing something well, I mean I can hardly give him a little treaty snack can I, so a clapping is what he gets and a cuddle too.


We discussed the fact that Zack has a tendency to hold his head to the left as that is his best field of vision. We are now trying to encourage him to look from the centre (mid-line) and to the right. We decided that it would be a good idea to do a change round of all his toys in his little room. After they left I did a complete overhaul of his crib. I moved his favourite bells to the right and put loads of new things all to the middle and right hand side. No more fun stuff to the left. I popped Zack in his little room. He knew things had changed. He spread out his arms to the side and just lay there quietly. Then up comes the right hand, bingo, he hits the bells. Well that was it. New toys and new positions are just the funniest things in the whole world. I heard him aughing away to himself. When I came to see what the commotion was and shouted to him this warranted more laughing to the point where he started having a coughing fit. He got pulled out after that to calm down. I honestly can't see how it's funny but he just loves it.


We went for our meeting with the neurologist today. It was short and sweet. Not much to report to him only that Zack was continuing to do well on the reduction in his sodium valproate. He thought that Zack is doing brilliantly and that even compared to when he last saw him he thought he was holding his head much better. I looked at Zack who was peering over his left side. Oh, that isn't his best I said, he can do much better than that, but I was pleased that he thought Zack's minimal effort at head control was better.


Zack has been very good this week. Less sicky, bit better in his car seat but still elements of him hating it. I am now convinced that it may be his expression of a kids paddy when he gets all frustrated in the seat. 


On two occasions now Zack has decided to shout for us when in bed. When I say shout I don't mean he goes "Hey mum can you get your arse up here please". No it's a baby gurgle that kind of sounds like a laugh but is a bit of a whinge. When I go in to see what's up with him, I am met with a grin and more chat. He just wants some company and then he goes to sleep. I suppose this is a really good thing. Me thinks he is becoming more aware of wanting company and shouts in order to get it, either that or he's doing further training in how to wrap us round his little finger.

I don't want him to have more drugs

So the Vigabatrin hasn't stopped the hypsarrythmia. I knew this, like I knew it hadn't when Zack was on the steroids. 


We met with the neurologist and he explained that there a few different options we can try. 


We can either carry on trying to aggressively stop the hypsarrythmia and go down the route of giving Zack two weeks of steroid injections. This only has a 30% chance of working and given that the last lot of steroids didn't work it's unlikely that this would be successful. 


Second option is to carry on with the Vigabatrin and take him off the sodium valproate which he doesn't think is doing anything for Zack. As the clinical seizures we are seeing are greatly reduced and Zack has become more alert and responsive it may be that we should forget trying to stop the hypsarrythmia but just keep the clinical side under control. 


Both Dan and I agreed to this plan. I don't want him to have more drugs, with horrid side-effects, just in the hope that it has a slight chance of stopping his hypsarrythmia. If he continues to progress as he is doing with the drug he is on then I'm  happy with that. 


We were also told about another drug that will be kept in the background in case Zack's seizures increase when we decrease the sodium valproate, I can't remember the name of it, but we can use it now Zack is a little older.


We also understand that it is highly likely that his infantile spasms will develop into epilepsy that he will have for the rest of his life. But we will just deal with things as and when they happen. The consultant thought there was a definite change in Zack and he reassured us that he will keep trying to get the seizures under control. I think this is just one of the areas that I have accepted is a war we might not be able to win but I still pray that one day it might all go away.


On a happier note I took Zack swimming again this week. The pool was blimmin' freezing plus it was only us in there so the lifeguard that was on just paced around the teaching pool continuously. I felt like we were being stalked by a tiger, very off-putting. I decided enough was enough, got us out, dressed and back to reception. The manager was there so I mentioned about the water being cold. Result. We get a free swim next time, wooohooo, if you don't ask you don't get.


After we had been to Alder Hey on Friday we went to Nanny/Grandad Price were Zack had his food and got fussed over. Then we went to the playgroup that the vision team had organised. It was busy this week and Zack nearly got kicked in the head by some little girl wearing Piedro boots. She also dropped a rubber disk on his head but he wasn't that bothered. His vision teacher popped him in the little room for safety and she remarked how he knew it wasn't his own room at home. He was feeling the sides for his usual artwork that wasn't there and waving his arm for his noisy bell. He also went into the sensory room for some light work, he got another well done and I was told that his vision is really improving, hurrah!!!

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.

Zack's seizures have been increasing again

Zack is getting a new chair. The O.T (occupational therapist) came to see us to discuss what extra fixtures and fittings the Pants may need around the house. We talked about seating and she showed me some pictures of what is called the Sunbeam chair but shall be known to me as the ugly fabric chair. It has all the right padding and support to make sure that Zack is sitting correctly and not having to work to hard to keep his balance. The chair can also be put on a little stand so that he can sit at the table with us when we have our dinner. It looks very good but all I was thinking was who chose the colours, they are all so garish and will not go with my home colour scheme. Still, it's good that he is getting this seating so I'll just get past the bad colour choice.


I also asked her advice about car seats. Lately Zack has been getting very upset whilst in his maxi cosi seat. He has had it since birth and is usually okay in it, not moaning too much, but the last few times we have been out he has crunched up, started breathing really fast and then made a loud crying noise. He got so worked up that by the time you get him out he is sick. I imagined that it was because he was too big for it and probably uncomfortable in it. So I asked her to take a look. We popped Zack in his car seat, she took one look and said, yep, I think he is too big for this now. I think the give away was the fact that Zack looked like a squashed up fat child in the seat, even his cheeks were squished together.


Zack now has a new car seat. It's bloody huge and a pain in the arse to put him in as it is still rear facing. However, he seems happier in it and has not done any screaming. Yet. I tested it out when I took him to school on Wednesday. 


At school he learnt how to take his socks off his feet, well we helped him pull his socks off his feet. He also did his stretches and thought it was very funny when they did the riding the bike song. After all the stretching, singing and stirring of a bowl of soup (don't ask), Zack flaked out so we came home a bit earlier. We also brought back his first painting for his daddy to take to work.


Zack's seizures have been increasing again. We have asked to see the neurologist a bit earlier than our planned appointment. Dan spoke to him and he  said that there are definitely other things we can try for Zack. He was also pleased to hear that Zack is smiling and laughing. He suggested that this may be because his brain is beginning to compensate for the parts that are damaged or that the hypsarrythmia is getting a bit better, or it could be both. Either way it shows signs of development in Zack which is a good thing. I just don't like seeing him have the spasms again. I was getting to used to hardly seeing them at all. I have learnt that it can take a while for things to get right. With some children you have to add medications, up some doses, lower others before you can get some form of acceptable levels. Somebody did tell me that it is a rollercoaster of emotions and this is quite true. Just when you think you are getting somewhere you suddenly shoot back down again. But we are trying to remain positive and take encouragement from Zack.


Just too add coldsville has entered the house again!! I blame the infected children at school.

just because he was wearing his Daniel Craig shorts doesn't mean that he's James Bond

Aqua Zack is back. I took the Pants swimming today and we had a lovely time. The original baby wetsuit we had bought now seemed somewhat tight on Zack but I managed to velcro him in, eventually.  Under this he wore his new swim shorts, Daniel Craig style. I looked less attractive in my swimsuit and tried to forget the image that looked back at me as I checked out my swim-wear in the mirror. I really must stop eating those mini chocolate brownies.


Zack enjoyed his swim. Well enjoyed it as much as he can. He was more bemused, bewildered and yet very, very into it all. I pulled him round on his front through the water and he kept his head up taking in the scenery. I also caught him checking out a little girl that was with her mum. He was looking behind me when I turned round to see a cute little baby in a pink costume. I told him just because he was wearing his Daniel Craig shorts doesn't mean that he's James Bond. We stayed in the pool for a good half hour, I reckon we could have stayed longer but I was getting a bit cold and wrinkly. I think it was fair to say that we both enjoyed our water adventure and shall be returning very soon.


I got a check up call today from the epilepsy nurse. She asked how Zack was getting on with his Vigabatrin. I explained that whilst he seemed more alert he was probably still having a couple of seizures a day so maybe it isn't work. She said that we won't know for sure until he goes for his EEG in a few weeks time, but it could be that this may be the best that we can get to with Zack. 


I said that if it hasn't worked we wanted to speak with the neurologist. I also asked why we were going through all this when the original plan was to stop the hypsarrythmia, why are we now accepting that this may be it. I can't really remember the outcome of the conversation but I think I made the point that we want to talk to the person making the decisions rather than the ones just administering the medication. I felt like I had been a bit tough on her as it isn't her fault she is just doing her job but I am not prepared to give in so easily, there has to be more options. If we look at the positives Zack is a lot more alert, he is responding more and tonight I even managed a little conversation with him. Nothing exciting, we didn't chat about Eastenders or the state of the world today, it was more like, helllooooo little man, gggggggghhhhh, ggggghhh, oh did you, gggghhhhh, that's lovely, ggggghhhhhh gaaaahhh. Not very interesting but so exciting for me.


We also had a call from the Family Support worker. She told me that we will be given some Direct Payments for three hours a week. This is great I said and we arranged an appointment for next week. I ended the conversation by saying, okay then, thanks, yeah, love you, bye. 


I put the reciever down and immediately thought, oh my God did I just say love you, oh shit, I bloody did, I said love you, noooooooooo. Now I bet she thinks I am a right crazy lady, bloody hell, she will be marking up her social workers chart for crazy ladies!!!! I am hoping by next Wednesday she will have forgotten about it. Oh God. I hope she does forget.

maybe tapping his hand is like morse code for him

My telephone stalking gained results. So far we have managed an appointment with Zack's physio, arranged an appointment with the O.T and met our Family Support Officer. 


The physio appointment went well. Zack was awake and alert and she was pleased to see that once relaxed he happily raised his neck to look round the room. Previously Zack used to hunch his shoulders up with a tendency to drop his head forward. He still does this a little but not as much. I told her he is tolerating his tummy time a lot more and even tries to lift his head up. 


We have had a little break-through with Zack's head holding and as much as I would love to say I discovered this trick it was in fact his daddy who worked it all out. Dan was looking after Zack one Saturday afternoon, he had all his toys out on the floor and was trying to encourage him to lift his head up off the mat. He tapped Zack's hand and he suddenly pushed himself up and lifted his head. "Look at this" Dan shouted,


 "oh yeah" I said, "he is lifting his head, he does that for me sometimes." 


"No, watch when I tap his hand, he does it all the time." Sure enough he did. 


I tried it myself today. I had Zack lying on the floor, arms in front he wasn't really trying so I tapped his hand. Tadaaaaaa.....he pushed himself up and lifted his head. Blimey, maybe tapping his hand is like morse code for him. But the even bigger break-through was today, he held is head up for at least a good minute, it was brilliant. I hope he keeps improving with this as then we can work towards crawling. 


We had a visit from the Family Support Officer today, otherwise known as a Social Worker. Most folk would worry about such people calling round to your house but I'll take all the help I can get. We discussed Direct Payments so that I can get extra help and support and I went through the umpteen people that Zack visits. She had already spoken to one of the doctors about Zack which was a bit strange as this doctor only treats him for one area and doesn't know him that well, but then I thought well maybe she just needed some background to his condition. I also had a good moan about the fact that in our area there is no parent support or baby and toddler groups for children with disabilities who fall into the early years category. We also discussed nursery and I told her that I wouldn't be happy with Zack just going into a mainstream nursery as I don't think he would get the one to one support he needs. She asked if I thought he needed one to one support. Well yes I do. It's not like you could pop him into a class and expect him to take on board all that's going on, he needs someone to work with him. Anyway, he isn't going into a nursery and by the time I think he will be ready he may have developed even further. 


Zack and I went to school for the second time. It was brilliant. The little class is so lovely as is his teacher and her assistants. Zack now has his photograph on the picture of the school bus which is on the wall. He was also given his own little bag that has a new hairbrush, toothbrush and face-cloth inside. We then had to get out each item and brush our hair, clean our teeth and wash our face. Well Zack's not got any pegs to clean yet but he did stick his tongue out and brush that. 


We also sang some nursery songs but by that time Zack had fallen asleep so I chose a huge chicken hat for him to wear for when we sang Old McDonald, I think he may have chosen the cow hat but he will fall asleep and leave me in charge of dressing up outfits.


We went on to do stretching and then he woke up just as we were smelling different foods. After that we all sat in a circle and had a snack. Zack had a little bit of a yoghurt but didn't really want it so I ate it for him. Whilst we were waiting he had a look at a fibre optics lamp and then we had art time. Zack painted his very first picture. We used cut up fruit and veg to dip in the paint and press onto the paper. By the end of it Zack had a lovely selection of circles. His picture now has his name and date on it and will probably be on the classroom wall. Then it was home-time, he got given a wonderful sticker and was chosen as best student in the class. Well done little man. The class is really great I understand what they are doing and why they do what they do in each session. It's good that he is experiencing new things and I am also getting new ideas of how to work with him. Never thought I'd say I was looking forward to going to school.

Zack is on his full dose of Vigabatrin. Rather than knock him out he still remains fully alert. He only falls asleep in the day for about half an hour and still goes to bed about 9pm then up at 7am. Seeing small seizures but nothing too huge I don't think as of yet it has stopped his spasms but our EEG is booked for the second week in February so we shall see then.