all of sudden big smile and a gggghhhhhhhh

We think Zack enjoyed his first Christmas, well, we think as much as guess he enjoyed it. One thing is for sure he got spoilt rotten. I have never seen so many presents, of which, I obviously had to unwrap for him. It was never-ending, so much so I got a sweat on, Zack on the other hand had his usual I am totally not bothered about any of this look on his face. We had all just about got dressed and sorted out when Grandma and Grandad Gould visited along with Great Granny Fairhurst. This meant more presents. After an hour of more treats we went off to Nanny and Grandad Price as we were having our Christmas lunch with them. Well you can't expect me to cook, I have a young child now. Plus I would never have gotten round to the cooking given the amount of unwrapping I had to complete. We had a lovely meal and Zack was very well behaved, graciously having a nod in his bouncy chair whilst we ate.

On Boxing Day we decided to brave the sales at stupid o'clock in the morning. I know how very sad. Zack thought the whole thing was amusing and spent the morning asleep and then awake smiling at the Christmas lights. Or he could have been smiling at the fact that there was a mile long queue of people trying to get into baby Next. Now that is ridiculous. And no, I did not queue.

In the afternoon we went to Nan and Grandad Gould for more eating. Again Zack was very well behaved and even cracked a few smiles here and there. Unfortunately his Grandad missed them but his Great Granny got three.

The rest of Christmas has been a bit of a blur but it has been lovely having the three of us at home and not having to go to one single appointment. It made me realise that I am definitely not going to do more than two a week. At the very most I only want one a week so come the new year, the foot will go down firmly.

We had some more laughing from Zack. Today in fact. Dan was on his way out in the morning and said that Zack wasn't giving him any smiles when all of sudden big smile and a gggghhhhhhhh. Oh. So I started to rub Zack's hand again (it's a new thing we found he likes) more ggggghhhh so I shouted for Dan and he actually heard and saw the laugh. Zack laughed quite a few times and I am so glad Dan caught it. Here's to lots more giggles in the New Year.

Merry Christmas

Ho! Ho! Ho! Merry Christmas everyone Zack is enjoying two weeks free of appointments with me and his dad, but we did have time to post these pictures of the Santa's Little Helper.

the steroids did not work

The smiling still continues. It continues at 3.30am in the morning when Zack woke up and thought it would be nice to smile at his mum in bed. Not daddy though. Just mummy. Who now spends most of her time entertaining him with loud shouting, bad singing and rubbing of arms and legs only because this gets the most smiles and every one of them still amazes me.

After our good news we had some bad news. The last EEG that Zack took showed no change, if only minimal, to the hypsarrhythmia in his brain. This meant that the steroids did not work. I said that. I knew from the beginning they weren't working so the next line of attack is a to try the next drug, Vigabatrin.

We went to see the doctor to discuss this medication and Zack's treatment. Apparently steroids are the first drug of choice in treating infantile spasms, followed by Vigabatrin. Due to infantile spasms being so uncommon in children not many studies have been done in the use of medication and the ones that have showed that those two drugs seem to work the best. The steroids however, did not work for Zack.

It is with huge disappointment that we are having to give Zack this drug. As well as making him sedated for the first couple of weeks another side effect is that it can damage the peripheral vision to his eyes. This is has only happened in a small percentage of children and it is thought that it happens usually when children are on the drug long term. So the plan is to give Zack this drug for six months. Hopefully this won't affect his vision. We have had to way up the chance of allowing Zack to develop to the best of his ability against the possibility of losing some of his sight. It is a hard decision but as Dan has said we don't know how good his vision is so if this drug works it could increase his vision and his ability to do other things.

To be honest I don't feel like I have a choice, I can't leave him as he is without trying to stop the infantile spasms. Whilst the actual visual spasms we see have greatly reduced his brain is constantly fitting because of the hypsarrhythmia, this in itself is making it harder for him to understand or do anything so we have to give him a chance. If this drug doesn't work then we may be looking at steroid injections and after that well, I don't know. I pray and hope every day that something will work, deep down I have a good feeling that we will get there, eventually.

We have decided to start the new drug after Christmas. I just want to have a couple of weeks without new drugs, appointments and worry, plus it isn't going to be much fun for Zack if he is sedated for two weeks. So come the new year, come the new drugs and fingers crossed more good fortune for Zack.

New Zack picture

Zack smiled and laughed

Zack has been working on his smiles. He does it every day now. Not all the time but a few times a day and it is wonderful. We even had a big break through.

I took Zack for his EEG at Alder Hey. He had finished his steroids the day before and he was having his third EEG done to check whether the hypsarrythmia had stopped. We got taken into the room and the nurse went off to get him some toys. Oh, okay I said thinking well he isn't going to be very interested in them but go on then. She came back with an assortment of noisy toys and I picked up this little clacker toy that when shook made a loud clacking sound. So I nonchalantly waved it in front of Zack's face and there was the biggest grin ever. Well that was it, shake, shake, clack, clack. Followed by oh my God, he loves this, where did you get it, I'll have to get him one. The nurse was kind enough to give us the toy as she thought it was so lovely that he was smiling and obviously loved this new adopted toy. He then proceeded to sleep through his EEG and then off we went to see his Grandad. (Nanny was off on a cruise and wasn't being ignored in case you were wondering). So I told Grandad P. about his new toy and shook it in front of his face......nothing......not interested. He might be hungry I thought, I fed Zack and he seemed a little more content, we tried the toy again. What a response. Zack smiled and laughed. We would shake the toy, wait and then he did this cute little laugh sound and even made some proper baby noises. The other big thing was, he didn't have his hearing aids in, it was fantastic, he continued doing this quite a few times I couldn't wait to come home and show his dad.

I got home, Dan came in, I plonked Zack on his knee, watch this I said. Clack, clack, clack............Zack started crying. Oh. I'll try again. Clack, clack, clack, nope not interested. I explained to Dan what had happened. But from that day on Zack has not reacted to the clacker toy like he did at Grandads. But what he has been doing is finding other things interesting like a jangling bell, rubbing his hands, talking to him. He will smile. Its great and a big step forward.

Other good news for this week was that we went to get his eyes checked out. The optician took a look to see if he needed baby glasses. He doesn't. Everything looked normal. We then went to see the consultant who looked into the back of the eyes and everything looked okay there. She said that we need to continue with stimulating his vision as the development of it may be a bit slow due to his injury but there is nothing wrong with his eyes. At last an appointment that we went too were we haven't come away with bad news.

We are now just waiting on the results of Zack's latest EEG. His seizures have now either been the same in number or slightly less, either way they haven't stopped completely.

Zack had his physiotherapy and did very well. She said that it was the most awake she had seen him and he was very relaxed. He even managed some smiling whilst in tummy time and he hates that. We took a look at his high chair and he promptly displayed his ability to try and escape from it but we agreed to try and sit him in it in short bursts to get him used to the new seating arrangement.

Zack went to his first Christmas party the other day and slept through most of it. The party was organised via some wonderful parents from the forum Special Kids in the UK. They did a great job and it was really good to meet other parents who have children with special needs. It was lovely to see the children enjoying themselves, disability or no disability. Shame Mr Pants slept through most of it but by next year he will be much older and possibly more awake!

The day Zack laughed

Oh. My. God.

I won't forget this day. Zack laughed. He has done it once before but I couldn't be 100% sure but this time, it was the sweetest, cutest, little laugh. Twice.

I can't even say that I was doing something funny and believe me I have tried to do funny. Tried the funny faces, the silly voices, the peek-a-boos, the jumping up and down, everything. I may have gotten the odd smile but it's hard work. Zack is a tough crowd. Well this evening I was doing the least funny thing you could imagine.

We were in the bathroom and I was running his bath. Zack was on his towel on the floor and I was telling him he was going to have a bath and taking his top off when he looked straight at me and did a really long baby chuckle. At first I looked at him and thought, what the hell was that noise and then he did it again. I started shouting for Dan but as soon as he came in he had stopped. I couldn't get him to do it again. Dan asked what it sounded it like, I said exactly how a baby would chuckle if they found something really amusing. I am in complete shock. I have never heard Zack make a baby noise let alone laugh. I wish Dan could have shared it too as I will never forget it, but I have a feeling this isn't the last laugh from Zack.

Well done the Pants.

He screamed blue murder

I have been chasing up the Occupational Therapist so Zack can get some form of supportive seating. I finally got hold of her, explained who I was and asked how long her waiting list was....3 -4 months. I see. Well there is only one of her and no other person in post and she covers the whole area which is why her waiting list is so long. So we had the discussion about how bad that was and how unfortunate it was that they can't yet fund another post. Then she said that she has put Zack as a high priority and will see him after Christmas. In the meantime she advised on a high-chair and to get one that reclines. I had tried to get one on ebay but in the end got a nice, shiny new one for Sir Pants. Well I have to spend his child benefit on something, at least this way Dan won't think I am spending it on shoes and shiny things.

Set up Zack's new high-chair. Popped him in new high-chair. He screamed blue murder. There were no tears he just protested a lot and did this at the same time as checking out what the hell was surrounding him on the left and right side of his face. He eventually calmed down but carried on protesting by whining and trying to break free of the harness. We are now breaking him in gently, he goes in it until he starts moaning sometimes this is half an hour, sometimes its five minutes. I am quite optimistic about the new seating arrangement. He hated his bouncy chair at first and now loves that, so I think he will grow to love his high-chair, eventually, one day, soon, like next week perhaps.

Steroid update

Still on them. Seeing a reduction in his seizures but not taking anything for granted because going on what happened before just because they are declining doesn't mean the hypsarrythmia is gone. Only the EEG will tell us that and he is going for one of them next Thursday. He hasn't been too bad on them. He is still vomiting a bit but Gaviscon is helping and he doesn't seem as irritable. So all in all not too bad.

Zack's sitting and head holding continues. He sits in the high chair without falling forwards and he can sit on your knee and doesn't seem to drop his head as much. I am still making him do tummy time and feel like the cruelest woman in the world but he has to do it, it's good for him. But not at 4.30am in the morning, that isn't good for me. This is what he had me doing this morning. He had woken up, so I took him in our room and had him lying on my chest. He spent a good 45 minutes trying to lift his head and peeping at me. He did very well at it, I just wish he would sleep then and do that at a more reasonable hour such as 3pm. Well best not to waste the time. In the end I got so fed up I told Dan he was hungry and he should probably go and take him for something to eat. Tut, tut, such a bad mummy.

Today Zack went Christmas tree hunting. We picked out a nice big one and I spent the next three hours decorating it. Zack didn't pay it the slightest bit of attention. The cat sat underneath it and Dan kept coming downstairs and saying is that all you've done, whilst pointing at some lights on the tree. All I've done. He hadn't spent three hours trying to unravel Christmas beads that had got all entwined. Plus, what do you expect, you open a card board box and the decorations miraculously fly on to the tree in a perfect order, like something out of a bloody Disney film......no, it takes thought, precision and a delicate balance of keeping your emotions in check so that you don't throw huge tree out of the piggin window!!! He did say it was beautiful after I had finished it though. If he'd have said anything else he would have been sat on top of the tree in replace of Gwyneth the fairy! Ho! Ho! Ho!

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.