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.

Oh dear

Whilst I should be doing lots of other important things I got to blow drying Zack's hair.




Separated at birth.

The Pants

Harry One Direction

Zack was so ahead of the game with the hairstyle!!!!

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

Goodbye to our last friend

Bloody hell I feel like for the past twelve months this blog has turned into an obituary for cats. 


We have said goodbye to our final four-legged feline. Our very first and our last (for now). 


Willis. Or Wilbur, or Willamena, or Willsy but always the cat that was a cat. He didn't think he was a person (Ozzy), he wasn't semi-wild and live in a bush (Colin), he didn't get himself locked in a neighbour's house for three days (Austin). No. He was a normal, friendly, affectionate cat. 


Of all our cats it was Willis that Zack preferred. And Willis loved Zack. He used to jump up and say hello to him in the morning and Zack used to smile in response. He even tolerated being yanked by the fur from Scarlett who didn't understand the gentle technique of stroking a cat. He never hissed at you, he never bit you (Ozzy), he never scratched. He was the best of all of them. A nice cat. And a very missed cat.


Goodnight Willis.

Willis the black cat. Well, you would never get him wearing a bib saying I'm a hungry teddy.

Tired.

Too tired to blog. Had a busy day at Kidz up North. Tried Zack on a trike think he liked it. Got his new pushchair fixed up. All good.

Have some photos instead. Taken during computer time.

I have no idea what was so funny.

Note Zack's face....rightly confused at the Scazlah.

Love this, captures my Zack perfectly.

I thought no more of it

Bad news first.

Stupid Disability Living Allowance form is in front of me. Or as I like to call it the book of 'What Zack can't do'.

Yes I have to fill it in once again. Tell them all about the fact Zack can't walk, speak, eat, or see properly. Makes him sound like he can't do anything. I tell you, the Zack on paper is nothing like the Zack in reality. Still, tis but once a year (my Christmas treat) and upon completion Zack can continue getting benefits that we use to buy him equipment that help him with day to day living. 

Moan over.

Good news now.

Some Primary Care Trusts will fund a block of therapy at Bobath. This is a centre which specialise in physiotherapy for children with Cerebral Palsy, our physios are meant to be Bobath trained. 

Here is a link to their website tells you lots more about it all.

Bobath

Well a while back I asked Zack's consultant if she would put in the application for funding a block of therapy for the Pants.  I thought no more of it and then on Friday evening I got a phone call from her saying that they are going to provide the funding for him to go along for a block of therapy sessions.

Yaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaay.

Very happy for The Pants. Not so happy having to spend two weeks around the Village. Still we can make it into a little holiday. Every cloud and all that.

He actually considered moving into Bent's for the Christmas period

This snuffle cold rubbish seems to be going on and on and on and on. Got Zack some antibiotics from the doctors, seemed to have cleared it all up for him. Had a couple of back to normal days then, poorly again. Plus Snot Witch is back to her usual snotting. Honestly I am thinking about putting them all in quarantine.

On a brighter note. We have purchased a new buggy for Zack. Well we just weren't getting along with the Tom Cross Stroller and Wheelchair Services just weren't errrm, getting along with sorting out something else for Zack.

Yes the Tom Cross was a good chair and he sat nice in it, but he didn't tolerate it for too long but worse than that it was so bloody heavy, took up loads of room in the boot and just wasn't suitable for getting him in and out of the car quickly. WCS don't seem to take into account our lifestyle and the need for something that is light and easy to use.

But hey presto, we, as per usual have sorted things out by ourselves and purchased a Swifty chair. It was  up for private sale from a lovely lady whose son had outgrown it and she only lived a few miles away. Off Zack and I popped to have a look see, he sat lovely in it and we drove away the proud owners of this......

Swifty Chair 

At the weekend we took Zack and Scarlett out to Bent's to look at the Christmas lights. I've mentioned Bent's before, the expensive, posh garden centre. They have a little model village on display complete with fairground attraction. It's my favourite part, I always want to live in the model village. Sorry I digress.

Yes, so Zack road tested his new buggy. Last time we took him to see the lights he had lots of seizures. This time he loved it. I mean really loved it. He was so happy in his buggy, we even managed to sit down have a cup of coffee and a cake (Pecan Pie gorgeous) without him sitting on our knee. Dan was so delighted at how much The Pants enjoyed himself that he actually considered moving into Bent's for the Christmas period. 

Scarlett on the other hand was not impressed. At one point she looked at me, puffed her cheeks out and let out a load sigh. What does a nine month old want in life? I hope she isn't starting as she means to go on by finding everything completely dull. Well that's not entirely true she seems to like Cher Lloyd. So does Zack. This is unfortunate. I need to rectify that travesty.

A belated Halloween

This is a belated Halloween. You see we were having our own personal Halloween fun in the house of doom the other night thanks to Scarletto the snot machine infecting us all.


Her snuffle took down Zack who was very poorly and had a temp of 39 degrees until the Calpol hit him, then it took hold of Dan and then myself. 


Whilst we did make the effort with Halloween dress up we couldn't enjoy it as much as last year thanks to our house of ills. Anyway I still managed some pictures. The first are from the last weekend when they went along to an early Halloween party. Second lot are from the actual day. Note how fed up Zack looks and how happy Scarlett is, despite her ability to snot all over her face. 


Happy Halloween.

Count Zackulaaaaaa

Mmmmm can I eat this?

You look as ridiculous as I do

Snot Witch

Poorly Zackulaaaa

Teething Witch

When he sits down his tubby belly squishes out of it.

Sleeping is better.  I feel like this has become a blog about sleeping but it's a big part of Zack's Zackisms.


We did go through a couple of nights last week whereby he went to sleep early but woke up at 2am. Oh no. I am not putting up with that. The going to bed late I can deal with as he then usually sleeps through, the getting up at 2am, no, I can't be having that.


Thankfully he has gone back to normal. Granted he is falling asleep on us after story time but hey ho you can't win 'em all. Although tonight he was carrying on so much that I just put him in bed and I think, he is fast asleep of his own accord.


Poor boy has been suffering a bit at the moment. He has been extra vomity. It was suggested by the doctors that we take him off his reflux meds as his vomiting wasn't as bad as it used to be. We have given it over a week to  account for any bugs he might have picked up to cause him to be under the weather but in all honesty I think that the little bit of reflux meds he was having helped to keep his stomach calm. I think we go back on them and see what happens. 


We are on half term this week. Half term. Ha. I guess my life now revolves around school holidays. How very strange. Zack has done very well at nursery. I can't say he has completely settled in yet or got used to it. Thinking about it all it's a massive change for him, he's in a strange place with people he doesn't know and no mummy. Given he has profound disabilities and one of them being a visual impairment I think he has done amazingly well.  I think in a few months time he will be more settled. However I have seen photographs of him having a good time and one of them was with some lady dancer shaking his hands, plus the other week he went for a walk in the forest, played in the sandpit and went in the light room. He hasn't time to be sad. 


Zack has a lycra suit. It looks a bit like a wet suit but it has reinforced areas on it to give Zack more support with his body. There is also extra support on his back to make it a bit straighter. The idea is that he will wear it all day every day (not at bed time though) to provide extra neuro-sensory feedback about his body and to help his core remain in a more stable position. 


I will post a picture of him in it when I get a moment. The cutest thing about it all is that he even has a little special hole cut out in his suit for his Mic-key button. When he sits down his tubby belly squishes out of it. 


So far he has had it on for an hour, two hours, four hours and five hours we are working up to eight hours. He feels very different when he has it on, definitely straighter and he sits better. Only thing is after it's come off he is more floppy than usual, perhaps this is normal, we shall see. 


OOoh and excited....it's Halloween soon and you know what that means? Yes my annual opportunity to dress my children up in ridiculous costumes. They've already worn them to an early Halloween party but that doesn't matter it just means I get to dress them up twice. And after all that it's time for ridiculous Christmas costumes. If only there were more themed times of the year. Photos to follow.

I do know the birds were singing

Just for the record if the Pants thinks that introducing his old sleep habits of staying up moaning and crying until 5.30am is going to buy him get out of jail free cards from nursery and boot camp he can think again.


Two nights on the trot he has refused to sleep. Nothing works. I don't even know what time he actually went to sleep last night (or morning) I do know the birds were singing and he was still carrying on. Needless to say he has missed one nursery and one boot camp. 


Hoping he goes to sleep tonight. Either way he is going to nursery tomorrow. Sleep or no sleep.

Only if he made a noise.

Zack's speech therapist came for a session this week. She brought some toys. 


She tested to see if Zack would choose between something exciting and something dull and yep, definitely makes choices.


I told her that Zack has changed quite a bit over the last few weeks. He is making a lot more vocal noises. I told her about our little game that we played whereby he would shout for me and I would go to him and make him laugh.


I told her about the other day when Dan and I were cuddling him and stopped only going on to cuddle him again when he made a noise which he did, several times.


So she pulled out some exciting spinning, flashy light toy and yes, he was telling her to do it again by touching her. This time we decided to not switch the toy on when he tapped her but to do it only if he made a noise.


This resulted in Zack having a big paddy. First his hands went circling like mad then his foot stamped and finally he shouted. Bingo. Toy came on and Zack sat bolt up-right. We carried on doing this for a good twenty minutes and he got increasingly quicker at responding until he got tired so we stopped.


It's really tough for him to shout but it turns out he can become vocal when he wants. She's left me the toy to practice with, oh this next week is going to be very noisy.

He looked rather bemused by the whole thing

The plaster was well and truly pulled off. I did it. I left him. My little Pants all on his own.


I took him into nursery on the Tuesday morning and the lovely staff there asked if I wanted to stay and go for a coffee again. No, no I said, I am going to go. Remarks were made about how I was brave and such, more like I knew I had to do it fast otherwise it would just drag on. 


I gave him a snuggle and a kiss and told him I would be back in a bit. I could feel myself welling up and with that I said to the staff "Okay I am just going to go as I can feel myself getting upset. I'll see you later."


And off we went, Scarlett and I, to console ourselves with a cooked breakfast in Debenhams. She thought it was great as she got to have toast. I actually enjoyed myself as I got some time to myself.


Two and a bit hours later we were back to find Zack sat around a table with four other children. He hasn't got a seat sorted out yet so he was in a buggy with a large snake wrapped around him. (A stuffed snake, what kind of nursery do you think this is?) He looked rather bemused by the whole thing.


Apparently this is what he got up to:


1. Tried a taste of cheese and chives but didn't like it so had some raspberry lip balm on instead.
2. Went in the sand pit and covered himself in sand
3. Had a story read to him and really enjoyed it.
4. Joined in the sing song session with all the other children and loved that, smiled throughout apparently.
5. Went in the sensory room and got annoyed at lying on the beanbag so got picked up and then was happy.
6. Played with some bead type toy that makes music and put both his hands through to join them together (mid-line playing always important).


You can see he had been a busy boy. I know it's early days but I think that they still haven't completely understood his hand actions yet. Take the sand for example, I think the scooping it all over himself which was deemed to mean I like this feeling of sand may have been him getting a bit miffed. It's been mistaken before that his pawing at stuff is him feeling things but it isn't, it's usually to tell you he doesn't like it. I think when I go back on Tuesday I am going to have another chat and perhaps stay to see an activity so that I can show them what I mean.


The other thing is his seating. He was okay in the buggy but he was lying back a bit and I could tell that he wasn't completely happy. I asked them to sit him up and hey presto bit happier. He couldn't quite see what was going on when he was a bit lower. Hopefully the O.T should have sorted out some seating for him next week. 


There is no doubt in my mind that he is well looked after there and he will get to do lots of fun things. I just think that it will take a couple of months to get to understand his mannerisms and little non-speech cues.


Our lovely private speech therapist is going to go into nursery and have a chat with them so hopefully all this will go some way toward understanding Zack.

Rip the band aid off

Well it's a week of firsts.


Summer is over, not that we had a summer. Feels like a perpetual Autumn. And with September in place Zack was back to his conductive education. I was dreading taking him back as it had been six weeks without any hardcore classes. I was expecting much crying, shouting and general I hate this commotion. Not one to stick to the plan, Zack spent his first session, smiling and having a great time. Even with his arm splints on he didn't mind. I was a very proud mummy. 


Oh and I took Scarly Bum with me as both sets of Grandparents were away on holiday's abroad. Yes, how dare they book their holidays at the same time, do they not understand planning? It's okay, I can say all this knowing full well they read this blog. Think on next time. (P.S Hope you are having/had a nice time.)


Scarlett was very well behaved. She had a great time rolling along all the mats and even joined in on the sit down say hello to everyone session. Torture school is now known as Boot Camp. We went again today. We are now going twice a week. Zack wasn't as happy during this session, but only cried a little, for the majority of it he worked really hard. I think the twice a week approach will do him some good. 


This week, Zack also started nursery. It's a special needs nursery in Warrington and it's fantastic. He has his own red school bag. It's nearly the same size as him, but I'm sure he'll grow into it. He went for an hour and a half session and I left him their for an hour on his own. I was only in the staff room having a coffee and chatting but he apparently enjoyed himself. Even went outside to play.  I take him tomorrow for his first full three hours. My plan is to leave him there on his own for the full session. You know, rip the band aid off in one painless tug. That's the plan, whether I go through with it is another matter. 


So now The Pants has a busy weekly schedule. Tuesday and Thursday nursery, Wednesday and Friday Boot Camp, Monday day of rest. What a lot of changes but all for the best. I think this will do him the world of good and also be good for me too. Plus I get to spend some one to one time with Scarly Bum who in the space of a couple of weeks has cut her first tooth, moved on to chunky food, enjoys finger foods, particularly biscuits and can almost sit on her own. Amazing. But lets not forget about the first born who now laughs nearly every day and is becoming more vocal. He really is a little star. Busy but good times.

I can't help the way he makes some people feel

It's funny how people react to someone who is disabled. Some are completely at ease, others uncomfortable, some stare and some look elsewhere.


We went to a social event recently and one that called for me to feed Zack at the venue. I used to be uncomfortable doing this as people would often stare, now I just don't give a crap. Zack needs his food and this is how he eats. End of story.


What I don't like is people who blatantly stare at what you are doing. Yes it does look unusual I am pushing food down a tube from a 10ml syringe into my son's stomach. In all honesty I would probably look too. Stare? No I wouldn't do that. 


I want to say for the record, just ask me. Ask me what I am doing. I don't mind, I'd rather your curiosity be satisfied than you just stare. I usually stare back, or glare, makes most people look away.


Friend's reactions to Zack are also interesting. Some people we know are very good with him. Get straight in there, hold his hand, say hello, give him cuddles, talk to him. Just as you would with any other child. 


Others don't really respond to him at all and that upsets me. I don't want people to feel uncomfortable around him. I don't want them to not know what to say or do with him. Come and say hello to him, talk to him for God's sake. Okay he won't always respond but ignoring him is rude. I can't help the way he makes some people feel and I can't help the way some people feel about disability. Maybe they need to understand that being different is hard enough without others treating you differently. I don't ignore the children of friends so why should my child be ignored. 


For those of you who may be reading this blog and do not know of anyone with a disability next time you see someone who is disabled talk to them, they understand, they deserve to be treated with as much respect and courtesy as you would expect people to give you. 


Don't be afraid of a child that cannot speak, or walk, or talk he has much more to teach you than you could imagine. 

That's Deirdre Barlow

We have had a very nice two weeks off with Dan. We managed to have some days out including a trip to a garden centre with a mini train. I mean, they had a mini train, we didn't take one with us. That would just be foolish.

It was a gorgeous day, made a change as the weather had been rubbish as per usual. Zack planned the evening before not to go to sleep so he had about two hours kip and was cream crackered. Didn't stop us continuing with our plans so off we went. 

An hour later after three arguments with the Sat Nav we found Brookside Garden Centre. Enjoyed a spot of luncheon, listening to old women who tried to out-posh each other with their put on accents. Honestly, it's not like they were at Bents (the Marks and Spencer of garden centres). 

It was then time for Dan to take the Pants on a train ride. He bought two little tickets and off they went.

He returned on the train three minutes later shaking his head. Apparently Zack was not a fan of the train and did not enjoy it. 

"Oh well, never mind" I said. "If I tell you something will you promise not to stare?"

"What is it asked Dan?" slightly confused at my off centre conversation.

"Okay, but promise." "Right. Yes. Promise."

"See over there in the children's play section, that's Deirdre Barlow off Coronation Street."

What does he do? Stares. For goodness sake, he gets so star struck. Yep, Anne Kirkbride enjoying an afternoon with, presumably, her family.

Pleased with our afternoon of star spotting, luncheon and train ride we made our way home.

"What should I do with the train tickets?" asked Dan. 

"I'll put them in his memory box." I replied. I have a little box under Zack's bed for all his keepsakes from days out. 

Dan looked at the tickets, then looked at me. "Well, it wasn't a very happy memory for him was it."

Suppose he has a point.

Having her nappy changed is more exciting than swimming

Made two attempts at family swimming. 


First attempt. Disabled swim session at a pool in Partington. The water was freezing. This lead to Scarlett shivering and being taken out within thirty seconds of getting in. Leaving Zack and Dan to enjoy a bit more swimming as The Pants wasn't arsed about cold water. 


Second attempt. Duckling swim session for pre-schoolers at Woolston. Really nice swimming pool. Asked to use the disabled changing facilities at the side of the teaching pool. All fantastic and lovely and lots of room. I was getting Zack and I ready. Dan was getting Scarlett and himself sorted out. Then Dan was getting Scarlett dressed again as he had forgotten his swimming shorts. 


Aqua Zack really enjoyed our swim. The water was very, very warm. And Dan sat upstairs with Scazlah watching. I think our family swim time is somewhat cursed. Reading this you would think aaah poor Scarlett she's not got to go swimming. Trust me. She really isn't that bothered about it. Having her nappy changed is more exciting than swimming. Zack on the other hand loved it.


The moral of this tale is, you must take responsibility at all times for bag packing. Do not assume that when you say, your swimming pants are downstairs that they will be collected and put in the bag. Here endeth the lesson.

I did say pigeon poo

We've all been off on a little jaunt to Sussex. After almost a year and half we returned to the Advance Centre to continue with the therapy that we started with Zack when he was a baby. So I don't bore you please look at my previous posts about this therapy if you want to understand what it's about.


Anyway, we had an extra companion this time, Scazzzahhhhhh. Double trouble on the journey down, which wasn't too bad as journey's go. I also booked us into an apartment for three nights to give us more space and a kitchen area to do his lordships blended diet. Well, you can't exactly mix up a shepherds pie concoction in a travel tavern, premier lodge....whatever those places are called.


Apartment was nice. Girl let us in, all looked good, she said goodbye, we settled in by shoving our backsides on the sofa and trying to get the TV to work. Dan came back five minutes later to say that he had dropped the keys down the lift shaft. Good start, quick call to nice lady and she told us just to get a spare set cut from the spare set we had. Right then, all unpacked, we notice we are attached to Asda. Perfect.  We are in the middle of Crawley town centre. Ooooh great (sarcastic great not as in yay great). We have six locks on the door leading into the apartment. Hmmmm, okay, well could just be overly cautious or we're going to die in Crawley. I don't want to die in Crawley. I needn't have worried it was all quite nice actually. Apart from the fact that the cleaners had left the windows open and the pigeons had shat all over the insides of them and it hadn't been cleaned. Go me cleaning and disinfecting window sills. Just like a home from home.


The day we left I mentioned it to the girl who tutted and said she's told the cleaners loads of times not to do that (by that I mean leave the windows open not poo on the window sills). After we left I got in the car turned to Dan and said I did say pigeon poo didn't I and not the words there was pidgeon shit all over the window sill. I still can't be sure of my correct phrasing. 


Dan said, "How come bird crap is somehow less offensive than dog shit?" "What are you on about?" I asked him. "Well, if you told her that there was dog shit all over the window you would have gone absolutely mental over it. But bird poo, it's all okay."


He does make a good point.


So the apartment aside the therapy went well and we managed to concentrate on picking it all up whist minding two children. Zack wasn't really interested in it at all, in fact he was having a three day off week. Scarlett had a fan club. A lovely little boy who would come in each afternoon. Run over too her and shout "Hellllloooo little baaaaby." I think he was autistic. I let him have a cuddle with Scarlett, he was very good with her, until he covered her eyes with his hands. She wasn't that bothered by it, she just tried to bite his arm instead.


Whilst we were away Scazlah received her first DVD. Yep. Mickey flippin Mouse Clubhouse was purchased to keep her entertained in the pigeon poo flat. She also used Zack's little floor seat for some extra good T.V watching.

Zack did some extra good sitting.

Slept in his own room. Had his mum get in bed with him until he fell asleep. This has since lead to unasseptable behaviour (I know it's spelt unacceptable but I like to spell it as Super Nanny phonetically pronounces it), ahem, yes, unasseptable behaviour at bedtime. Bringing us back to square one with bedtime fights again. I gave in a couple of times and let him fall asleep on me. Dan caught me and asked me what was occurring, I lied and said he just fell asleep when I read to him. He knows I lied. I don't care. He was very cuddly cute.






So far we've managed to do the therapy almost every day. And Zack has fought bedtime almost every day. Reasonable success and a pigeon poo free home equals good times.

Surprise, surprise he can hear.

Eye. Eye. Hear. Hear.


Zack's had them both checked out. He went to see his favourite eye lady for some black and white paddle waving. You have to give it to the young man he was on form. Full of smiles and very cheeky. Eye lady was so pleased with him and his behaviour that she said it had made her afternoon. She did the usual showing him a light, showing him some paddles to check his tracking etc. He did do some following and then decided not to bother. He decided to check her out by coyly looking round and peeping at her, smiling then turning away. 


Upshot of it all was that she thinks he knows exactly what to do to be able to use what vision he has, he just sometimes chooses not to. Whether that's because it is hard or whether that's because he can't be bothered (I  think it's the latter excuse) is really down to him. As I had thought, his vision is variable. Some days  it's good, other days it's not so good. I also confirmed with her that his right eye is much stronger than his left and we discussed the use of a patch. At this point in time we both agreed that to use one now may take away what good vision he's got, we may rethink the use of them at a later stage. Shame. I had a whole pirate outfit planned for Zack's patch.


Hearing got checked out too. Oh. Surprise, surprise he can hear. You don't say. He still has his glue ear which is affecting his hearing but he should grow out of that by about seven or eight years of age. The doctor (a new audiologist doctor who was very nice) did the newborn screening test on him again. The one which they click little sounds into their ears. I remember when Zack had it done and failed it. I remember when Scarlett had it done and passed. We were told that she wouldn't need to have it checked again until she goes to school. Both Dan and I looked at each other in surprise we were kind of used to not good news when our children have medical tests. 


Anyway, this time he passed his newborn clickety test. Well, on his right side anyway. The left side had a lot of background noise so wasn't that conclusive. I asked why his hearing has changed and she suggested that her thoughts were that the whole problem with his hearing has been the glue ear. There is nothing wrong with his ear drum, or any other ear bits and he doesn't have an auditory sensory processing problem.  Woohooo good news for Zack. The advice was to face him when talking to him and to keep background noise to a minimum.  I have known all this for ages. I have to creep about when he is in bed as one squeak of the floor board and he wakes up and starts shouting.


The past few months have been really busy. Scarlett is starting to want more of my time and just today I realised how good Zack has become, how he is growing up. I remember when we first brought her home and we had a couple of months of him not wanting to be put down on his own, wanted all my attention. Well now, he is so good if you sit him in his chair, or leave him on the floor with toys, or in his standing frame. He has the patience of a saint. I think he has accepted that Scarlett needs more attention and he just waits his turn. 


Scarlett loves her brother. If you leave them alone together on the bed and go out of the room I can hear her chatting to him. I'll come back in and she has turned over on to her side to face him, has hold of his hand and is gently cooing at him. If someone else she doesn't know touches him or if we play some rough and tumble with him, she watches him like a hawk, sometimes even gets upset. I am amazed at how she is already forming such a protective relationship with him. He on the other hand, puts up with her occasional hair pull or poke in the eye. He does get kicked in the body a lot by her. In return when he goes to touch her he tries very hard to control his arm so as not to be rough. And if they have a cuddle he responds with a massive grin. 


God help him when she finally crawls. Might spur him on to find his legs and get out her way. Either that or he better start saving up for a power chair.

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. 

Best day ever.

The other day I think Zack had his best day ever!


He woke up in a lovely mood, had a nice breakfast consisting of one yoghurt, one bananna, one weetabix, 14 almonds and some milk.


Got dressed in his summer white trousers. He looked all Miami Vice (even wore his flops, that's flip-flops to you and me).


Then he went off to see two of his little friends for a play-date. I am sure if their mummy is reading this blog she won't mind me posting about it. They are two gorgeous, lovely little boys, the same age as Zack and I think that they are so wonderful with him. 


Zack was lying on the grass happy as anything and one of the boys walked by Zack and he just grinned, in fact he spent most of the morning grinning. He had a go on their trampoline and loved being bounced up and down. He watched Mickey Mouse Clubhouse with them, smiled through that, stroked their doggy. He loved it all. And the sweetest thing was when the boys were playing on their little trucks that they sit on and push round they even brought Zack one over to play on. 


This is all very interesting to me because I haven't really seen Zack react to children like our little mates. He really loves being with others and it was great to see him so happy and relaxed. 


Then we came home. Had a spot of lunch and played in the garden until the early evening.


Later we all went for a long walk and Zack went in his Tom Cross Stroller. Amazingly he loved it and didn't moan at all. 


Here's a picture of Zack relaxing after his best day ever.

Now the bad news. Best day ever ended when the Pants wanted to carry on best day ever until 3am. Yep. 3am. That's when he called time on it and finally went to sleep. Little git. Made him get up at 7am though. He is presently asleep in bed and has been since 8.30pm. Mwahahahahaha. Sucker.

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.

We left at two in the morning

Zack's been on his jollies. A staycation in Cornwall, Mullion to be exact. This time he had a little companion, his sister. Not sure if he was too impressed at sharing his vacation time with one so young. 


Journey down there wasn't too bad and both children were quite well behaved. The Pants decided that a day of travelling and a poorly tummy would keep us local on our first day. So we had a nice stroll around Mullion and some lunch at a lovely pub. 


Zack also slept in his own big boy bed for the first time. No travel cot. Scarlett had stolen that so he was in a room on his own. This meant we had two bad nights of getting him to sleep. Mind you it didn't help that the flipping Naval air base is right near by and they decide to take out the massive search and rescue helicopters for a midnight flight until 2.30 am. Or the fact that when it rains it throws it down and you feel like someone is tipping a tonne of uncooked rice on the roof.  Apart from that Scarlett and Dan were the only ones who slept well.


We took them both to the Eden Project on the Wednesday. It was amazing. Apart from the sheer scope of the eco conservation biomes, the biggest conservatories in the world, it is home to an indoor Rainforest and Mediterranean gardens with their own specific climate control. The Biome containing the Rainforest was humid and hot. I quite liked it, Zack loved it and Scarlett fell asleep. 


"I think I could live in the Rainforest" I said to Dan. "Really, and what's Zack going to do?" 


"Well, he seems to like it and we could live in that hut over there, plus there's a cool room so if we get too hot we can sit in there for a bit." I thought I looked like I was on safari in my khaki pants and vest top. Dan said I just looked sweaty, like a sweaty David Attenborough. I contemplated leaving Dan for the actual Rainforest but then decided that I don't like snakes, ants or spiders.


The best bit for Zack was the land train (a.k.a tractor) that took you all the way up to the top of the centre. He loved it and probably was the best bit of his holiday. Scarlett just liked it all and was very happy all of the time.


I have to add at this point that the Eden Project is really accessible to those with a disability and I was extremely impressed with the facilities and helpful staff.  Whilst I am on the subject of pleasant people, Cornwall has an abundance of friendly welcoming folk. Everything is done with a smile, a bit of banter and nothing is too much trouble. Great holiday. Long way, but worth it.


The journey home wasn't too bad. We left at two in the morning. It was like we were on the run. Don't know who from, I mean I had already paid the caravan people. Still it was exciting for the first hour, then it just became a really, really, really long journey. 


Here are some photos from our trip. Enjoy.

Testing out my big boy bed

What's your problem? I is having a beer with my daddy

Rainforest. Zack's new home.

Knackered and asleep after visit to the Rainforest.

Hi mummy I is having a lovely time.

Errm excuse me I would like my breakfast now .

God, this holiday is brilliannnnt.

Do the furnishings clash with my pretty dress?