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.

We have splashed out on the rolls royce of blenders

Zack's new diet of blended food is going extremely well, he is putting on weight and growing. We are now completely off the formula milk he was given and his vomiting/refulx has much improved. 


With all these positive signs we have splashed out on the rolls royce of blenders, the Vitamix. Yes it is very expensive and ordinarily I wouldn't even contemplate paying so much money for a household item. However, having read the reviews of people who have bought one I thought it was well worth the investment given that Zack is now on a total blended diet. 


And oh my it is amazing. Here is a link to a video if you are that interested in it. 


Vitamix Video



Normally I would have blended Zack's food up then sieved it to ensure no lumps but not with the Vitamix, a.k.a. Boris. The other day we did a jacket potato complete with skin and it blended it up in less than 10 seconds to a smooth consistency. Wow. 


Now Zack can have anything with no worry of lumps blocking his tube. So glad we got Boris.




Zack went to his second Christmas party. His third one was cancelled due to the snow but is to be rearranged. 


Party number two was at his vision play-group. The Pants took his daddy along. Well he kept looking at him, a little confused as to why he was there, but showed him what he got up to at his play-group. This included making a christmas card, winning the pass the parcel, meeting Father Christmas again and getting another present. The lucky boy.


Talking of being a lucky boy I noticed that most of the presents under the tree are for his lordship. I mean how did that happen, I was only going to get him a few and now he has a lot. Still he's been a good boy and deserves to be spoilt now and again. 


We are all looking forward to Christmas and Zack his being his charming self for his daddy. Who came home having finished work last week and was astounded at how happy and good Zack was being in his chair. He enquired as to whether he was like this for me every day. Pretty much I said. See for yourselves.

Hey look at me

Took Zack to two play groups this week, the lucky boy. 


First one was the monthly group run by the vision specialist team. It was good, they had a bonfire theme but Zack was more interested in a little girl a year younger than him. She is very sweet but gets upset a bit as babies do, well he was fascinated by her crying. Wasn't interested in the fact he had a furry hat placed on his head or was shown a branch to represent the bonfire, nope, he was all about the ladies.


That same lady came along to play group number two run by one of the mummies from play group one (are you all keeping up).  Zack had the best day ever at this play group two, he loved it, he was smizing at everyone (smizing = smiling with his mouth and eyes, see Americas Next Top Model for reference). He even rolled over from his back to his sides, the little show off. 


At one point I put a little plastic frame over him that had toys dangling down. Toys, I don't need toys. Watch this, and he grabbed hold of the side and tried to pull himself up, all the while looking at his new little girl pal. If he could speak I'm sure he would say, hey look at me, look at meeee, look what I can do (in a Stewie Griffen voice, in my head that's what Zack sounds like). 


He was even a good boy in his car seat. What a delight.


Feeding is continuing to go well and I have now stopped giving him that horrid Infatrini Energy and no sick. Nope no sicky. It's fantastic. We still get a teeny bit here and there but over all it's a great improvement. We are now on three meals a day, two drinks of whole milk and a pump feed of just water at night. Amazing. He is even going to bed at around 8pm and sleeping through until 6.30am. Although I can't help but think that as I type this next week I will be saying oh God, what's with the waking in the night, or oh no the sickness is back. But for now, the Pants is just brilliant and amazing. 

I swear if he could stick two fingers up he would have done

Today Zack went for another check up on his eyes. We first visited the eye lady who holds black and white paddles in front of Zack. She had a student with her and told him how fantastic Zack was doing and how he really responds at playgroup etc. 


Zack took it upon himself to completely ignore her and the black and white paddles, in fact, he even did a couple of yawns to show how bored he was, not very impressive. She put the drops in his eyes that enlarge his pupils, he really didn't like that. 




We went back into the waiting room to wait for the eye doctor who actually looks behind his eyes. This time when we went back in he purposely tried to avoid looking anywhere but her shiny light. In fact they thought he was very clever at all his avoidance techniques. 


She said that it's difficult to say what he can see but his visual impairment is cortical meaning that there is nothing wrong with his eyes it's just that the messages are not getting to the right place via his brain. She asked if I wanted Zack to be on the visual impairment register. They explained that it means it will help to ensure that he gets all the support he needs, especially with regards to school. Paddle waving lady also mentioned she thinks that you can get your TV license half price. Well where do I sign up then?


That wasn't really why I signed up, I did it because if it means it makes it easier for us to get him the help he needs or into the right school then that's great.


So now Zack is registered blind. However, he was taking the mick that day, as soon as we had finished I picked him up and over my shoulder he opened his eyes wide and looked at them all. They all stood there and said oh well look at him now he can do it when he wants to. And with that he left the room and smiled at them. I swear if he could stick two fingers up he would have done.


What's more when his dad came home he went over to say hello to him and didn't say anything just looked at Zack and smiled. Zack recognised him and smiled back. So much for the register!

Zack went to Space

Zack went to Space. No, not space, space but Space a fantastic soft-play multi-sensory centre in Preston.

It was arranged via our lovely friends on the Special Kids in the UK forum so there was about four families who went along. There was a ball pool that Zack enjoyed sitting up in whilst taking in the light show on the walls, a sensory wall, water bed and bubble lamps. Best of all was a huge soft slide which I think I enjoyed more than Zack. Here take a look.


Space Videos




Dan decided to let Zack try and bounce up the big steps which he though was very amusing before flying down to the bottom, which I think he was a little unsure about.


We loved it there and I think that Warrington are converting an old Playbarn in Woolston into a sensory play centre so soon we shall have our very own little bit of Space.

He did his tongue out smile

Zack and I went to play school on Monday. It's the one run by the vision specialist team so includes lots of toys for visual stimulation. I took Zack into the room and sat on the floor with him, he was fascinated by the whole room and his eyes went really wide, soaking in all the good stuff.


One of the teachers brought over a long orange tube, which was quite heavy but is good for children to use for body awareness. When you turn it on it vibrates. Zack had his hands on it and the teacher switched it on, well, he loved it. He did his tongue out smile (that means oh I really like this), big eyes, the whole shabang. 


This is what we mean:


Vibrating Snake


Oooh only £12.99 might get him one of them. He'll probably be board of it by Thursday.


Overall conclusion of the day was how amazed everyone was that his posture has improved, his head control is much better and his vision is even better than the last time. 


Well done Pants a successful play group. However at the end I did catch him giving the Skunk eye to a little boy of about the same age, hmmm, maybe he thought it was too much competition for the ladies, the flirt.

It was sheer bliss

We took the Pants swimming the other day. Decided to try out a new swimming baths and Zack's snappy little yellow rubber ring. 


This baths was much nicer than the usual one plus the life-guard chappy threw some toys into the water for us to use. We hadn't used the swimming aid for Zack before so weren't sure if he would like it or not. 


Ha. Why worry. Zack's as laid back as they come. He sat in his little yellow boat and loved it. He had a good look around the swimming pool and even tried to track things around the room, this is a good thing. It all helps with his vision development. He didn't move his legs whilst in the water so we did it for him and he liked being pulled about the pool. If we were on holiday I reckon I wouldn't be able to get Dan or Zack out of the pool. I reckon he could have fell asleep in there.


Zack had another new experience at the swimming baths, the showers. I thought I would try him and see if he liked it. Like it? He loved it. At one point when the water fell on his head he tipped it back closed his eyes and looked like he was in heaven. I almost expected him to say, "aaaaahhhhhh the water feels so nice have you brought my Wash and Go mum, because I only take one bottle into the shower."


I had a day release today. I left Dan in charge of Zack whilst I went on a little galavant to Manchester. It was great until my feet started to hurt and my arms ached from carrying my bags. Dan and Zack picked me up from the station. In fact I was met by Dan zooming round the corner with Zack laughing his head off in the back. Apparently when daddy drives you get to fly round the bends really fast and its hysterical. Safe. i don't think so. But muchos funny.

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!!!

"Well who has some cement just lying about the house then?"

At the moment Zack is in his cot chillaxing too lullaby music and watching his projector lights on his new mosquito net. 


We haven't had a sudden invasion of mosquitos, this is my new fab find. I was in Ikea the other week, looking for some fabrics (another story) and I came across this net that you hang over the bed in a kind of Out of Africa style. I thought this would be ideal to shine Zack's borrowed projector on and sure enough I was right. He loves it. Okay he looks like a little prince in there but all the colours transfer beautifully and now I have one peaceful, happy baby. And one mummy with even more free time.


Here's a link so you can see what I mean.


http://www.ikea.com/gb/en/catalog/products/20130878



This happy baby makes a change from yesterday when he was in a bit of mood. By mood I mean whingey. Zack still has no teeth and I can't see any coming through but his cheeks were a bit red so we thought, hmmmm maybe, he's teething. Out comes the Calpol, two minutes later, fast asleep and not a dicky bird from him all night, job done.


Yesterday afternoon I started a project. I was going to put together Zack's new swing. We had bought him the swing seat from a great special needs website called TFH http://uk.specialneedstoys.com/


Nanny/Grandad Gould had bought him a swing frame for his birthday so I thought it would be a good idea to put it all together. I started the project, laid out all my parts nice and neat, got all my nuts and bolts in nice lines. Managed to put together three bits......... Dan finished the project and I decided to do some pruning in the garden. Well for goodness sake, you should have seen the instructions on how to set up the seat. Plus I think Dan had got a bit neanderthal and decided he could do it better. That was really my plan all along. I knew he would offer to help and then just take over. Mwwaaahahahahhhhhaaaaa!!!


I got bored pruning and watching Dan swear at the swing so Zack and I went inside for a snack and a drink. Fifteen minutes later Dan walks in, an air of smugness followed behind him:
"You haven't read these instructions all the way through have you?"
Not even looking at him I said, "I have because I went and laid everything out in a neat order so I could see which bits I needed and when."
"Oh" he said and then thrust the instructions in front of my face, "turn to the back page and tell me what that says."
I sighed and turned to the back page. Oh. We were instructed to dig four square blocks fill them with cement and pop in the ground pegs.
"Well who has some cement just lying about the house then?" I tutted. "I know, just try it in the ground on its own and see how sturdy it is." 
With that he went off mumbling something about health and safety. Twenty minutes later he came back.
"All done." He said. "Is it safe?"I enquired.  "Yeah, it's fairly solid, we'll just have to try him in it." 
Hmmmm, yeah, that's a good idea we'll use the one year old for risk assessment.
It turns out the swing was very sturdy and we let Zack experience the ooooohs and aaaaaahhhs of a swing.


We think he liked it. Well he knew something was going on because every time we pushed him to go up in the air his eyes would look upwards. He also did a quick check to the left and right when he came down. Either that or he was thinking oh my lord what have they got me doing now???




Have just checked on Prince of Persia as I assumed he would be asleep by now. No such look, wide awake enjoying the light show!!!

Zack was so peeved he started crying

Zack and I went to school the other day to a lovely little primary in Winsford.

I have been wanting to take Zack to some conductive education classes for some time now. Pause for brief interlude to explain:

It is a form of education that works toward rehabilitating children with motor problems to help overcome some of their difficulties and to lead more independent lives. More can be read about this at http://www.conductive-ed.org.uk/

Scope run something called school for parents which utilises a form of conductive education in the classroom. The idea is that you and your child go along to classes and both join in the activities, so I found one in Winsford and we went to take a look.

The teachers showed us the early years classrooms and the conductive education class. There are four children in the class and Zack will be the only baby. I say will be as we start school for one morning a week in January. They do stretching to music, sing songs and basically have a nice fun time. I think I was more excited than Zack who seemed to dribble a lot and stare at a glass box that had some creature in it. I am not sure what it was, I didn't fancy looking any closer in case it was some large spider thing.

As we were leaving we went in through another class and there was a group of children gathered around the teacher. Some of them saw Zack which was a signal for lots of ahhhing and ooohing followed by a little girl who wanted to know his name. His name then got repeated by everyone and we all waved at each other. The children were so lovely. some were in wheelchairs, some were not, some were more able-bodied than others, some were more vocal, but what came across was how happy they were. How much fun they were having and if for me that is a glimpse of Zack's future than I am a very happy mummy. I think he will like school....as long as he doesn't try to make everyone his bitch.

Today we went to a fabulous place in Bolton called Vision Aid, (link on the left). This is a charity originally set up by a parent who had a visually impaired baby. Its aim is to support and help parents of visually impaired children. The charities home is a large Victorian House and they offer information and advice as well as loaning out equipment.

We went along and were taken into a large room full to the brim of colourful, noisy toys. Zack didn't stop staring at the shelves, he particularly liked the rainmaker toy. It made him smile....then he went back to serious mode.

The best part of the visit was being taken into a room full of home-made instruments to encourage visual stimulation. There was a huge box on the floor covered in space blankets (the tin foil things that marathon runners get wrapped up in) we popped Zack in the box and then went for a cup of tea.....only kidding. We put him there and then switched on a projector that spun round a bright colourful wheel that made the box sparkle. Zack absolutely loved it. He went really quiet, moved his head to look in different places where the lights fell, it was fantastic. We switched it off to go and look at something else and Zack was so peeved he started crying. I picked him up for a cuddle and we put the projector on a sparkly piece of material, he immediately stopped crying. Hmmmmm, first time he has reacted by crying in order for something to continue.

The charity have loaned me our very own projector. So now project A is to find a huge, gigantic box and cover it in space blankets, then lie the Pants in the box, switch on the projector and have a nice cup of tea.

I have to say, I think we are very fortunate to have access to such a wonderful charity, I hope that many more local children can benefit from it's existence.

Steroid Update

Zack is doing okay on the steroids only noticed three little seizures all day to day. But it is definitely making his stomach upset. He is okay for most of the day but was really irritable this afternoon and very grumpy before bed. His Dad was out at a works do so I am being a single parent and looking after him. This means no messing about and I just popped him in bed at 8.45pm crying or no crying. He was soon asleep and I carried on with the thousand other things I have to do with my life.

Looking forward to Christmas and cannot believe this year is nearly over and what a tough and yet wonderful year it has been.

So it is with trepidation I mention the pen torch....

The Pants had a very busy week. Not that he would have noticed as he just gets to see a few new faces and interesting rooms in clincs. As I write this I am trying to think back to Monday and remember who we met with, oh that's right Monday was a day off I think, even so it still felt like a busy day.

Tuesday was mega. It started off with a visit from the community nurse which is always nice. She called in to check out Zack's PEG. It was still oozing gunk and the over-granulation had now formed a big blob, rather like he was growing a second body just to the left of his belly button. Dan did question whether his stomach was growing out of the hole made by the PEG which lead me to wonder about his IQ level. But it was okay he was just having a Goldie Hawn moment. I reassured him it wasn't his stomach mutating just some cells growing over the hole trying to mend it, all part and parcel of a healthy immune system. The nurse ordered us some more cream which would hopefully dry it up and stop the infection. So far this has worked and Zack's PEG is looking a lot better.

I just managed a cup of tea and slice of toast when our next visitor turned up, a lovely lady from the charity SENSE.

SENSE helps children and adults who are deafblind by offering support, campaigning and making information available via publications and the web.

SENSE lady was fantastic, she asked me all about Zack and how he communicates, I told her how I know when he's annoyed and when he is content. I also mentioned how he has started to anticipate things which she said was a really good thing, now I just need to read the signs of knowing when he wants me to continue to do something. For example when we play a game, he isn't making sounds to tell me he wants me to do more, they can often be quite subtle so I have to watch for them. This lead to a lot of time between Zack and his new friend repeating phrases and tapping his chest which he seemed to like. Zack tends to make little clucky sounds when he is happy and little whiny murmurs when he is chatting. He also makes his breathing slow down when he concentrates, that's quite cute, he stares at you intently as though you are the most interesting thing in the world.

We then popped him into his Little Room so she could watch to see how he moved and responded to play on his own. He didn't let me down. He decided he was going to be extra smart and show her how he can work out where his rattle is on the side of the box by hitting some bells and then swinging his arm around to the side. He then opened his hand and hooked his finger through the rattle so he could grab it. I was impressed, our visitor said he was definitely planning this move and using orientation to work out where it was which is all very good. She said she would like to visit again, I said great. Maybe by then Zack will have mastered the art of juggling!

After this visit it was time for a quick feed for Zack and a sandwich for me then off to the hospital for an appointment with the vision lady. I have no idea of her correct title but sessions usually include her shining a pen torch in Zack's eye for pupil response and then waving a lollipop shaped board in front of him with black and white zigzags on them. We hadn't seen her in a while and what usually happens is Zack falls asleep within five minutes of meeting her. He was so on form. As soon as we went in the room he went to sleep. When he did actually decide to play along he got annoyed with the light shining in his eyes, which the vision woman was very pleased about as this reaction meant that light was getting through. She also thought his pupil reaction was getting better, Zack made a good response when the lights were turned off and the blind pulled down. At one point he caught sight of the lollipop board and followed it only a little but enough to warrant some excitement. The lady did remark that he was a bit of a cheeky monkey and had certainly put her in her place by only doing things on his terms, which is what I have been telling everyone for weeks. Zack will not do something unless he wants to do it, a bit like his mum. We left the appointment with our very own eye pen torch and instructions to warm up his eyes by shining it in them and then follow this by showing him a black and white toy to encourage following movement.

When Dan came home that evening I told him about the appointments and the pen torch. Now Dan loves Zack immensely but he does sometimes have a habit of testing him, especially his eyes. So it is with trepidation I mention the pen torch....

"We've been given our own light pen." Dan turns to look at me with a smile on his face, "Have we, were is it?"

"I have the pen. It's hidden away because I know you as soon as I go out tonight you'll be on with the shining in his eyes and we are only to use it occasionally."

"No, I won't. Where is it?"

"I'm not saying, I am going to monitor the pen torch use."

"Well, how many times can I use it then?"

"Three." (I had no idea I just made that up).

"Okay. Well I won't do it tonight.......so where is it then?"

"Oh look is Zack having a poo, he might need his nappy changing."

Ha! A diversion meant I went off with friends to the Trafford Centre for five hours and Dan forgot about the pen torch. Okay, this may seem like very controlling behaviour but seriously, I know him, the temptation would have been too much, all Zack would have seen for the rest of the evening would have been orange lights. Needless to say we have since used the pen torch and Dan has not at all been over-doing it. In fact I think we got over-engrossed in using the pen torch on each others eyes to see how quickly our pupils reacted............I think we need to get out more. Pen torch is now a free agent in the house and rests openly on the table in the lounge.

More rest of the week to follow.

Sweet Potatooooo Baaaaaaakkkkee

This Saturday we took Zack to the over-priced garden centre known as Bents. It isn't just a garden centre, this is a luxurious fascinating place full of home furnishings, gifts, food, clothes, books,  oh yes and plants. 

It also has a very, very nice cafe that charges you £18.00 for a sandwich (okay I exaggerate but they are expensive) however the cakes, oh the cakes, cakes gooooood. Bents is well known for it's Christmas decorations and displays so we thought it would be a great place to take Zack to look at pretty fairy lights, baubles and tinsel. All was going swimmingly until we over-egged it by showing him a row of fibre optic trees, this sent him into one of his little seizures. The examination of the miniature displays of Christmas scenes in a glass cabinet caused one of the seizures that makes him cry. Up until this points he was very interested in all the Christmas paraphernalia and I think he enjoyed his visit to Bents. On a good point at least we know that he's seeing something because of the over-stimulation which caused him to have some dippety doos. Dan suggested next time we take him to Bents he goes in blindfolded and we just show him one tree with lights then whizz him back out, hmmm, I think we might look a bit odd. 

After our over-stimulation we decided to relax with a nice cuppa in the Victorian Tea Room and Sweetshop. It is a sweet little cafe decked out as an old fashioned little tea room, you can have cream teas, high teas as well as cake and light bites . Zack loved sitting in there whilst I had a sandwhich and Dan complained that he was disappointed about the fact that his Bakewell Tart was shop bought and not home-made. I have to agree with him there, I would have expected home-made too, still the tea and coffee were served in fancy china cups which always makes it taste nicer.

Zack was visited by his two nurse friends the other week. His gastrostomy site has become a little sore and oozy. So his mates came round to take a look at it and prescribed him some cream. They told me not to worry it happens from time to time, it just gets infected due to little bugs that he can pick up here and there. They made a big fuss of him and commented on how big he had gotten and how well he looked. He tried to focus on them a few times but then got fed up and just wanted his pants putting back on. The site has now developed some over-granulation, this is where new cells try and grow on top of the hole to mend it, it can be stopped with some different cream. It all happened before in the early days so I know we can fix it and not too worried.

On a good note Zack has done well at his eating this weekend. He has been having a go at his pureed food and eating more than he has before. The Sweet Potato Bake went down quite well and he finished off two big blob fulls. I think this was helped with me whizzing the spoon towards his mouth saying Sweet Potatooooo Baaaaaaakkkkee. I am so proud of him, I hope it continues and he can manage half a jar. I just try a bit more each week, so our goal by the end of next week is to do three big spoonfuls.

We have our appointment on Thursday with the neurologist. As well as discussing Zack's MRI results, which I am not looking forward to we also want to discuss his seizures. We no longer think that the sodium valproate is working. His seizures are not reducing any more so we want to know what the next option is, I know there are different medications to go through but I just pray that we find something to stop them. 

The germinator is getting over his cold. He has done an excellent job of infecting me and Nanny and Grandad Price. A second course of antibiotics seems to have done the trick and he is getting back to his normal self, so it's good to see him being a bit less sleepy and more alert again.

We have had to cancel a lot of his appointments due to him being poorly. Luckily he hasn't had many booked in this week so we had a good week of not dashing about everywhere. 

The vision specialist lady came to see us but Zack wasn't doing too much apart from coughing. We went through his little development journal. They gave me this gigantic folder which breaks down his development milestones in to small bite-size chunks. It's quite a good idea, instead of the usual milestones that babies reach the journal is broken down into, well, baby steps. As we went through it I discovered that in his own way he is communicating with us and becoming more aware of his body. Apparently, when he completes section 1a he gets a certificate!

We are off to Sussex on Sunday to take him for his second session at the Scotson Advance Centre. We are looking forward to the little break, I have booked us into a nice hotel only five minutes away, it has a gym, pool and spa.......you can see my thinking can't you. 

It was a wide eyed open mouth smile

This week has been both a pain in the backside and an absolute joy. 

It seems as I continue writing this blog that there only exists in Zack's world me and his dad. There are, of course, many, many other people in our lives but I don't mention them here. This blog can be read by anyone, and whilst I am happy to share the experience of our lives with Zack, I don't think it's right to mention other people without their permission. 

This leads me to the pain in the backside part....As much as I want to write about the complete idiots that sometimes don't think about what they say I can't. So the bad stuff that happened this week will have to be written about somewhere else. Sorry about that. Maybe I'll combine them both one day, for now it stays somewhere else.

But here's the good stuff........ever since we popped in Zack's hearing aids (his hearers as we now affectionately call them) he has been responding to his environment a bit more. I have discovered a new game he likes to play. I call it whooooooh let's pull up the Pants. It involves Zack lying on my knee and me pulling him up to a sitting position with his hands. This is followed with lots of hellos and clapping of his hands. This amuses him so much so that we think (well I know for sure) he smiled at me. It just so happened that Dan saw him do it at the same time. It was a wide eyed open mouth smile. Dan said it was nearly there, I know it was there. It was fantastic. 

We had a nice visit on Friday from the vision specialist teacher, she brought with her another new recruit to Zack's growing band of helpers. This lady was a rehabilitation officer with a specialism in vision. They were very impressed with Zack's pimped up Little Room and gave me some more good tips about laying him on top of different materials so that he can feel more things beneath him. They also suggested putting something at the bottom of his feet which he could press against, this again all helps to make him more aware of his environment. They were very impressed with his action in the little room. He did his best I'm having a good look at this toy stare and a good lot of arm and leg action. He did even more when he had his hearers popped in. They both said that his vision is even better with them in. When he sat on my knee, he held his head up for a good while having a look at one of the pictures on the wall. I was very proud of him.

In the afternoon we went to visit the new Brainwave centre in Warrington. This was a place we had considered taking Zack but it was down south so we were pleased to hear that they had opened a centre in the Northwest and it is only 20 minutes away. It takes an integrated approach to working with your child as an individual and looks at all aspects of physical, sensory and cognitive development. Basically I think you have an assessment over two days with physiotherapists and occupational therapists who then give you a programme to do at home with Zack, with a view to improving his condition. They work on the theory of neuroplasticity, that the brain can find new ways of working. I could go into more detail but if you're really that interested here's a good website....http://faculty.washington.edu/chudler/plast.html

I think for now we are going to wait until the new year if we decide to take Zack along. By that time he will be a little older and they will have been up and running for a while, and had enough time to iron out any teething problems.

Dan had a daddy and son day on Saturday. He took Zack off to the shops to buy some inner tubes....mmmmmm can't say I would be that thrilled about shopping for inner tubes, but each to their own. I took the opportunity to dye my hair and have the house to myself......They came back an hour and half later, the Pant's was not happy. Apparently he enjoyed the ride out in the Mazda, liked listening to Metallica, was good in the shops but then got fed up on the way back as it was a bit hot and he had a wet nappy (Zack not his dad). Oh well, at least I managed to get the hair dye on my head.