So far he has listened to lots of MTV and TMF but not Kiss or MTV Bass, oh no, just the good stuff.

The Pants at about 6 and a half months.......4 and a half months corrected.

Zack is now the proud owner of some light blue hearing aids, very fancy. We went to the hospital to get them fitted. The nurse popped one in and said "Now, what do you think to that then?" He immediately turned to look at her, which was met with some oooooohs from the nurses. Another one was popped in the other ear and Zack was tuned in......ta dah, we have sound!!!! In his usual style of not really giving a fig to anything, Zack sat there and just had a good look around the room as though nothing had changed and it was just a usual Thursday morning at he hospital.

I was more impressed with the small satchel Zack got which contained a whole host of hearing aid goodies, including little washing cup, batteries, battery tester, a little swoosh thing to blow at any condensation bubbles and a hearing attachment, that lets me hear how his hearing aids sound so that I know they work. But seriously the bag is too cute.

After a quick lesson in how to change batteries and test the hearing aids for on and off another mould was taken of Zack's ears. Apparently, as babies grow so quickly the hearing aids become too small for their ears so they need new ones every month or so. We have to go back in a week to get them fitted, another thing to add to his list of things to do. Oh, we were also invited to come along to a parent and baby group to meet other mums and babies who have had hearing aids fitted, I told them to send me an invite, I'm sure we'll see if Zack and I can fit them in, you know it's not like we have anything else to do, like fly to London, have tea at the Ivy etc. etc. Sigh!!! It's tough being so popular.

Anyhooo, we got back in the car, and with the Pants firmly in his car seat we encounter the dreaded feedback. Whenever he lent back on his ears this whistling sound would go off. This continued when I waved my hand past his head. This is no good, I can't have a whistling baby. Dan did explain to me why it was happening, he did so twice and in great detail, and this is the upshot of what I got from his explanation............it's like a microphone and an amp, sound is getting through where it shouldn't be, it feedback blah blah blah, you get the whistling. Right, yeah, aha, I understand, but I want to make it stop. So a quick phone call to the audiology department provided me with my answer........a small tin of Vaseline. Yep, I popped some Vaseline on the inner part of his hearing aid and it sealed it in his ear nice and good, now no feedback and one Zack with the volume turned up.

So far he has listened to lots of MTV and TMF but not Kiss or MTV Bass, oh no, just the good stuff. He has also had me singing him crap songs constantly and chatting to him. At one point he looked at me in despair as if to say "Woman, will you just shut up."

In conclusion the hearing aids are not so bad. They haven't been an earth shattering revelation but I think he doesn't mind them. He certainly doesn't hate them and for me that'll do.

I have pimped Zack's Little Room up even more and a few things for his big room too. I popped out to Hobby Craft and came back with a load of bells and whistles. Well, not so much whistles, but I did get bells. And pom poms, two different types of black and white cloth, shiny holographic silver paper, a snow globe, oh and these foam letters in shiny sparkly different colours that spell out his name. And some stick on brightly coloured felt spaceships and sea animals all to go on his wall in his big room. I was very impressed with myself. Dan was quite impressed. Zack was reasonable impressed for a change and later on in the evening I caught him having a sneaky look at his name on the wall. I could spend hours in Hobby Craft, I love it in there, it's almost as good as a huge shoe shop, but not that good. In fact a shoe shop the size of Hobby Craft would be amazing. Why hasn't anyone done that yet?

"Did you notice the fire-man tabard hanging on the doctors chair?"

After an appointment free week Zack and I have been thrown back onto the endless merry-go-round of hospital waiting rooms. It's only Tuesday and so far we've seen three people. 

We had a meeting with his consultant on Monday. We still aren't on top of his epilepsy and (optimistic as ever) the medical opinion is that it's going to be a difficult battle. I know it's going to be tough to get it right and get it under control but I'm hopeful that we will one day. 

At the moment Zack is having about 12 -15 seizures a day, they are still only lasting a couple of seconds and don't cause him any distress. We are nearly at our full dose of medicine so I think the next step would be to try something else. I don't like the thought of giving him more medication but I know that we have to in order to give Zack the best chance of development. 

The rest of the appointment was just the usual measuring of head, physical checking over and meanderings about the fact that Zack is going to have severe problems. Hmmmm, you don't say, comments like that don't really help parents. It's not like we are under any illusion that things are difficult for Zack but at least cut him some slack, acknowledge the things he has managed so far, however small they may be. He's a completely different baby to the one that was in hospital and whilst he may not be able to do things that other children can whose to say that one day he will and if he can he'll do it in his own time when he's ready. 

I really don't like going to the medical appointments they bring me down a little, remind me of what's wrong instead of what's right. I think this is why sometimes you have to rely on your own belief that things will get better and I really do believe that they will. I'm not talking huge leaps and bounds but slow, small, steady steps. 

Dan is very supportive and a great dad. He has his moments where the worry gets him down but he is great at picking me up when I feel low, plus he notices humour in things that you may ordinarily miss. For instance, later when we were at home after the appointment he said to me: "Did you notice the fire-man tabard hanging on the doctors chair?" 

"What?"

"The fireman tabard, it was a tabard but it was a fireman outfit. You would put it on and be dressing up as a fireman."

"No....I didn't see it."

"Hmmm...I think at our next appointment I'm going to say, what's that Zack, you want the doctor to wear the fireman tabard."

Lord help us. Now all I can see is the consultant dressed up as Fireman Sam. I wonder if he ever does wear the tabard.

We went for another eye check today. The usual lady wasn't there but another lady took the appointment who was very nice but talked at high speed. Zack did his usual trick, he managed to stay awake for a bit but then completely switched off. The eye lady suggested he was very sleepy. She was right. Maybe they should stop giving us appointments in late afternoon, and they might get a bit more out of him.

Her consensus was that Zack isn't so much looking at things close up as things in the distance such as contrasting colours and light and dark. We are going to have another appointment in the sensory room and he will be checked over by a consultant. So to be honest, the appointment was a bit of a waste of time. I'm still carrying on with what we've been doing and will do a lot more of it, especially when Zack's alert and interested.

We've been trying Zack with a little bit of baby cereal once a day. It's going well, I can't say the apple and raspberry mush is very appealing but he can manage a spoonful and at least it's getting him used to texture and taste.

Have also been letting Zack have a lot more tummy time of late to try and build up strength in his neck, so that he can lift his head up off the floor. Today, something brilliant happened. He raised his head and shoulders off the floor so that he was propped on his forearms, he held the position for a good few seconds before turning his head and placing it down again. It was brilliant, I even managed to shout Dan in from the kitchen who was able to see it for himself. A round of applause for the Pants, I was so proud of him. Unfortunately this now means more tummy time for him. It really knackers him out but at least he is trying and putting the effort him, he's such a star.

I managed to get out to the library on Saturday morning and saw a leaflet for books for children with special needs. I asked a librarian where I could find them and she said they were in a back room and she would take me through. The back room, oooooh, it was like going into that special street in Harry Potter, (I have no idea what that street is called, I've never read the books, I just get dragged along to watch the films by Dan the avid Potter fan). 

Anyway this other lady took me into the back room and there were shelves and shelves of books for special needs children. She asked me how I knew about it....I looked at her quizzically before saying, well I saw your leaflet. Then I thought, am I not supposed to know about it, have I found the holy grail of the library. She told me that she wished more people would use them but she doesn't get asked for them that much and doesn't want to put them in the children's section in case they get trashed. I said I would let the Child Development Centre know about it so that they can tell other parents before swiping four great little cloth books for the Pants. I will definitely be returning to the back room.

After my library adventure I met Dan and Zack for lunch. I enjoyed a veggie burger, Dan enjoyed a chicken burger and Zack just enjoyed the scenery before jumping out of his skin when the man on the next table dropped a knife on his plate. We had a mooch about the shops before Dan took Zack home and I stayed out shopping.....as he disappeared into Debenhams he shouted: "Will you back for his 3pm feed..."Oooh I don't think so, see ya." And with that I skipped off for an afternoon spent trying on copious amounts of clothes and ending up with one pair of leggings. It was great having an afternoon to myself but bless him, Dan was knackered by 8pm, this baby looking after business is hard-going for the uninitiated.

Some New Pics

Thought I would add some new pics of Zack. He is now 26 weeks with a corrected age of 19 weeks.

"It's all too much!"

"I'm very cute I am"

Asbo in training!

Dan has taken to calling them Dipety Doos

We are back to normality. Zack is so much better now and I have had a really good week with him, in fact he's been no trouble whatsoever.

I am starting to discover that Zack is very good at telling me what he doesn't like. He isn't yet smiling so his opinions move from comfortable and content to you'd better stop what you're doing right now and take your hands off me. Take for instance nappy changing, he has now discovered that having this done first thing in the morning isn't such a good idea and tries to push your hands away and kicks you in the stomach at the same time. In fact, he is starting to turn into a spoilt little boy. You know you're in trouble when the frown appears on his face followed by the bottom lip being pushed out. I hope over the next few months he can also express joy and laughter but I think we are a long way from that, so I'll be happy with the contented Zack.

His medication for his epilepsy has increased. It is having an affect but it hasn't cut out his seizures yet. We don't call them seizures in our house, we used to say episodes but now Dan has taken to calling them Dipety Doos, I don't know, maybe it makes them sound less threatening. Every day he comes home from work and asks how many Dipeties Zack's had, I give him a number which in turn gets a worried or an elated reaction depending on how high or low it is. I am starting to think we should use his Dipety Doo numbers as next week's lottery, you never know, we could be sitting on a small fortune.

Zack still isn't on his full dose of his medicine, in fact we are only half way toward the full dose. The epilepsy nurse seems to think that it's good that he is responding to the medicine and that the episodes are decreasing, however she wants him to be seizure free so we still have a way to go in getting them under control. The good news is we are heading in the right direction.

We went to the feeding clinic the other day. Zack had his usual way in and length measurements, I give up with being interested in the curve in the red book now, I am sick of looking at plots and graphs. Zack is putting on weight and he is growing and that's all that is important. Stuff the chart. We mentioned to the Speech and Language therapist that Zack has been a bit disinterested in his water of late. She suggested we leave him be with trying it for three months so he doesn't get an aversion to it all. Dan went on to tell her how he has been waking up for food and that when he was in hospital after his operation he was so thirsty that he sucked all the water off a gauze. She wasn't sure whether to send him for a video fluroscopy. This will show us where the fluid is going when Zack swallows so we can check it is going the right way and not into his lungs. By the end of the session we agreed that we would try him on solid food in 8 weeks time. I'm already doing that now, he has a bit of pureed apple here and there and loves it. I take what they say with a pinch of salt, over these past few months I have come to trust my own instinct with him. I know not to push him too hard and at the same time I know not to give up trying with him.

Zack's had a fitting for his hearing aids. It was all over in five minutes. They just squirted some putty in his ears to make a mould. This is then sent off and made into special Pant's hearing aids. They told me that they will test his hearing with his hearing aids in and keep re-testing his hearing without them to see if there is any improvement. We should get them in the next couple of weeks, I bet Zack can't wait for Lady GaGa!

We were due to have a physiotherapy session at home on Friday but the woman didn't turn up. When I called to find out where she was she said the session was at the clinic even though at the last one we discussed her coming to the house. Great. No physio for Zack. We rearranged and she made no apology for the mix up. I'm not too bothered that a mistake has been made it just annoys me when she didn't apologise. Mind you all she does is the same exercises I do with him every day, so he is not missing out on too much. I will see how we get on over the next few weeks and then may look at some other form of physiotherapy for Zack.

On a few positive notes, Zack is LOVING his Little Room. His Grandad Price has now bought him his very own one for keeps (told you he was spoilt). These aren't cheap to buy so we are very grateful to his Grandad as this is a really valuable piece of equipment. We have put some toys down the sides of it now. The other day Dan and I were in the kitchen when we heard some loud banging, Zack had discovered the rattle at the side of the box and was taking great delight in batting it with his hand. He can spend a good hour in that box and not get distressed, it's fantastic.

We are carrying on with his Scotson technique and it seems to be doing him some good. He is getting more relaxed and a lot more vocal ( this last benefit is not good for our ears). He opens his mouth a lot more when in full crying mode which is great as he never used to do that. We are due to go back there in October and I am very much looking forward to it.

Zack's ability to move his legs and arms is getting better. His feet are not as turned up as they used to be and it is easier to bend his legs which is something he does of his own accord. We do some baby massage after his bath each night which he quite likes now and this give us a good chance to get his feet moving and encourage him to stretch his muscles.

Next week we have no appointments, not one hospital appointment or nurse appointment, nothing. I am really looking forward to it. I suppose for others you would call that normality for me I call it a treat.