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.

Which remained stuck in the air as evidence of his torture

We have started Zack on his two week blast of steroids. This has included three visits to hospital so that he could have his blood pressure, bloods and urine samples taken. On the first day the nurse managed to get his blood via a little finger prick on his thumb. The pants was not happy and by the end of it he sat on his Dads knee with his bottom lip stuck out giving everyone the evil eye. I would have felt sorry for him but I couldn't help but laugh at the fact that he had a big white plaster stuck on his thumb which remained stuck in the air as evidence of his torture. He got a I've been good today sticker, this didn't improve his mood but his dad and I thought it was cute.

So far we are on day three of the steroids and Zack has been a little out of sorts. He is vomiting up his food again, been sleeping a bit more and is generally a little irritable. This is to be expected with the medication but at least it's only for two weeks. We have also seen that his spasms have been increasing not decreasing. I am hoping by the end of seven days they will have decreased and Zack will be back to his usual self.

He just sticks his tongue out

We met with a new Speech and Language therapist the other week. I shan't go into why we have left the old one but the new one wasn't for taking us on at first. By the end of the session we had agreed she would see us every couple of months, which is no more often than the last one was seeing us. She was quite happy for us to keep trying Zack with his little tasters of foods and showed us a couple of tricks to get him to shut his mouth.

For the first few months of life Zack kept his mouth firmly shut, he kept his lips in a permanent rosebud shape so when he started relaxing his mouth and we actually saw that he had a tongue we were quite excited. Now we have to lift his chin up slightly so that his mouth closes, the poor baby can't win. He isn't too bothered, if he doesn't want you to do it he just sticks his tongue out.

The Pants has been for a hearing test today. He slept through the whole thing. He needed to be awake but managed to go into coma status for the whole session. The consultant tested his ears and he still has glue ear which could be affecting his hearing but we agreed to leave any decision to operate until he was a little bigger. For now the hearing aids are doing the trick and seem to be working quite well. As soon as we got out of the room he woke up, how on earth does he do it, I mean, really, how does he know.

Tried to chase up the OT about Zack's seating arrangement to no avail. I just ended up with a phone call from another OT to tell me that they were the wrong OT and the one I want was moving boxes at the moment so here's her number. So I asked what the difference was, apparently one deals with school children the other with seating, huh! Okay, so I asked her to phone me to let me know how long her waiting list is, the lady asked me what my number was, I said the same as the one you've just called me on. Slaps hand to forehead.

In the meantime I took Zack to look at some high chairs in Mothercare. I popped him in one, assuming he would just flop forward. I am quickly learning to not assume anything with him. He sat upright and placed his hands on the table and lifted his head up. Then he checked out what was to his left and right. Ooooooh, I thought, he likes this, how much is it.....£149.00 I don't think so, get out of the chair Pants. My thinking is that I get a second-hand one which will do until he gets his special seating. That way if he hates it we haven't wasted money that could be spent on pretty shoes for mummy.

My day was finished off nicely by a call from the epilepsy nurse to tell me that the recent EEG Zack took a couple of weeks back shows no change from the original. Even though we have been seeing less seizures the hypsarrhythmia is still there and not under control. We are being advised that the next thing to do is to give Zack a two week dose of Prednisolone. Whilst he is having this he has to go in to the hospital five times to have his bloods, urine and blood pressure tested. Great. I hate the thought of new medication and not knowing what it might do to him. But if we don't treat the seizures then they could get worse and this won't help Zack. If the steroids don't work then we have to consider a different drug. I am not looking forward to the next few days, it is so unfair on Zack. I just wish sometimes he would get given a break. I remain hopeful that we will get his seizures under control I just don't know how long it will take.

He had put on a pound in two weeks

Zack went out for Sunday lunch. He looked very smart and was a good boy. His now enhanced skunk eye was given to a cute little five year old boy who was staring at him....I sometimes get the feeling that Zack isn't going to play well with other children unless he can be top bitch!

Zack has also been growing....a lot. The new milk he is on is certainly having an affect. We went to see the dietitian and as I was getting him undressed for his fortnightly weigh in (Zack that is not the dietitian) I was saying to her how I don't think he will have put much weight on as he has been poorly with his chest infection. Wrong. He had put on a pound in two weeks. Amazing, he has jumped up a curve in his little red book. I was so pleased. I knew he had gotten bigger as he had outgrown most of his clothes. This is also a great excuse to go shopping for mini clothes, I never knew it would be such fun to choose little boy outfits. Oh who am I kidding, I have only been trying to dress Dan up for the past 13 years to no avail. I now have the perfect little guy who I can style to my hearts content and he doesn't even moan. In fact, I think he likes looking quite dapper. He has his gangsta look, his geek chic look, his preppy look and he is working on his collection of dressing up costumes. He could teach Gok a thing or two about being on-trend!

Zack's physio came round the other day. Zack slept through the whole session, well she did call at 9.45am and he doesn't get up until 11am, no amount of stretching limbs was going to raise him from his coma. We talked about his stretches and the physio made the suggestion of lying Zack on his side in his little room to encourage him to play so his hands are in a mid-line position. I tell you, I never thought I would understand what supine position and prone position is but shout them out to me and I can put a baby in chosen movement within five seconds flat. Physio told me that she has asked the OT to contact us with regards to Zack's seating so we are now on a little waiting list for I don't know how long.....good old NHS.

Zack took his first big boy bath tonight. I bought him a little seat thing that he lies in which frees up my hands. So I put some water in the bath and plonked him in this plastic seat. He knew something was amiss as he wasn't doing his usual floating position that he enjoys in his baby bath. He narrowed his eyes and looked at me. I then started the splashing. Oh.....someone likes the splashing of the water, I think the sitting in the bath is a big hit. At one point his feet where soaking in the water and he dropped his arms over the sides of his seat in a proper chillax position. Every time I would stop the water splashing he would look at me and almost stop breathing, waiting until I did it again. Big boy bath is a big hit.

Last thing to note is that we have noticed Zack is holding his head up a lot more when sitting on your knee. You can support him just at the base of his spine and he will sit upright for a short space of time. He doesn't do it constantly and his head will drop but he will pull himself back up again. Sometimes he will have a day where he will do his sitting up a lot, other days he will be a bit lazy and not do it so much. However it's a development and a good step in the right direction.

He is wanted

Over the past couple of weeks there have been a number of articles and a t.v programme about parenting children with special needs. In the main I have found these articles to be deeply depressing and unbalanced. One such article appeared in the Daily Mail and can be read on-line at http://www.dailymail.co.uk/femail/article-1227080/Do-I-love-disabled-daughter-With-heart-Will-relief-dies-Without-question.html.

It was written by a lady who has devoted 18 years of her life in caring for her disabled daughter. She has now decided that they will only provide pallitative care for the daughter, which means no more intevention. Reading this, horrified me, but then I asked myself was I just horrified because this woman had bravely spoken about things that you bury deep inside of yourself. Was she right to suggest that because her daughter was profoundly disabled that she had no quality of life? Yes it would be a release for her when her daughter dies and undoubtedly she loves her dearly, but, how can we judge a quality of life? Will I be able to say Zack has a good quality of life if he depends on me for all of his?

I am only at the beginning of my journey but I know that even though Zack might never, walk or talk or do things you or I do, his quality of life for him is good. He is loved. He is cared for. He is wanted. He is content. Isn't that enough?

I also watched a TV programme on BBC 1 last week called When a Mother's love is not enough. Rosa Monkton, herself a mother of two daughters, one with Down Syndrome, met with parents of disabled children and discovered or rather voiced her utter despair at the lack of support given to these families. The programme showed families and single parents in dire circumstances in which life is terribly difficult, consuming and full of hardship. After watching this programme I felt that anyone who has no experience of raising a child with special needs would only pity us more. I found the programme to be very unbalanced. It gave nothing of the positive side of loving a chid with a disability. It made us out to be parents who are so desparing and so desperate that we could take our own lives and the lives of our children at any given minute.

I do believe that there is still a lot of work to be done in order to change the system in order to make it easier for parents to access support and help. But come on, let's have some programmes and articles showing the positive side of our lives. Show the families that go through both the ups and the downs, show all of the journey not just the walk through the dark tunnel.

And so here endeth the rant.

P.S.

Zack is much better but is still very naughty and staying up until 11pm. Surely this can't carry on.

Zack on film.

Some badly edited video footage of the Pants enjoying some play time in his little room. He seemed to have a routine of hitting his round rattle and then his bells. Oh, it was Halloween when I filmed this, we don't always dress him up as a pumpkin........or do we????

Okay that was impressive

Now Zack is on the mend he has decided that to introduce a new bedtime routine to our lives. Gone is the tucked up in bed by 9.30pm evenings and welcome to the I am staying up until 11.30pm at night event.

The little tinker has a great routine. He gets up at about 6am, has an early breakfast, nappy change, bit of a cuddle then back to bed. If he's lucky he twitters away in his cot for a bit whilst his dad gets ready for work and I get him out of bed for a cuddle in our bed where he promptly falls asleep. This ahem, lie-in, lasts until 11am. Then he gets up, gets dressed, has second breakfasts and is wide awake for the rest of the day until about 5pm when he has a nap. Then bathtime, evening food and what should be bedtime. Not tonight, he decided he would rather stay up and be wide awake at 10.30pm ready to play and looking for someone to take him up on the offer. He even tried to impress me by doing head lifting a good number of times whilst lying on my chest. I was not impressed. He tried to REALLY impress me by pushing up on his arms and lifting his head even higher. Okay that was impressive but I would rather you go to sleep.

I had a plan that the epilepsy drugs made him drowsy for a few hours and that if we gave them to him at about 8pm it would make him sleepy........plan didn't work, they make no difference whatsoever. And please no suggestions of waking him up earlier, it doesn't work. You can get him out of bed, dress him, do his nappy and it's like he is in a coma, he will not wake up. So hear I am now blogging at 11.30pm, after he has finally gone to sleep. Serves me right for being so cocky about his great bedtime routine.

Zack went mad

Zack spent the 5th November in hospital. This wasn't due to some rogue firework accident or the fact that he grabbed a sparkler after it had gone out.....nope it was down to a nasty chest infection again.

The night before he had been a bit unwell and his breathing was slightly panty so I took him into the local childrens ward. He has open access to the hospital ward so we don't have to go through A and E. The doctor took a look at him and said his chest was clear and that he probably had a cold virus. So we took him home again and dosed him up with paracetamol. The next morning he panted his way through four hours and I just knew he wasn't right, his temp had gone up and he was looking quite poorly. We contacted the hospital again and they told us to bring him in. We expected a quick look over and to be sent home with antibiotics, but this wasn't the case. His heartrate was up, he had a temperature and he was working hard at his breathing, he had developed a chest infection.

Next thing a very nice and very cautious doctor had him in a cubicle, suggesting oxygen and catherters, Zack by this time was panting away looking awful. The doctor asked if we use a suctioning machine at home for his secretions, errr no he can sort them out for himself I told her. So she instructed the nurse to get a sample of his saliva to see if he had a bacteria infection that was causing bronchilitus.

Doctor leaves the room. Nurse comes back with a tube.

"Where's that going?" I asked, "Down his nose" the nurse replied with a smile....."Mmmmm good luck with that because he's going to go crazy" She just smiled at me. Oh the chaos. She tried one nostril no secretions (well duh, that's because he swallows them), she tries the next nostril, by this time Zack went mad his arm came up and he started whacking her out of the way. He can move his limbs when he wants, I swear if he was bigger he would have smacked her across the face. The nurse looked up "Oooh he doesn't like that does he and I couldn't get anything. Mmm, yes, I think we'll leave it I'll let the doctor know." She left the room pretty quickly.

After that they didn't attempt to put the oxygen prongs up his nose instead they just put an oxygen mask by his face. Then a junior doctor came in to put a catheter in his hand. I did ask the reason for this and she said it was in case they needed to put fluids in to him, they also needed to get some blood. I wasn't overly happy about it, I didn't want him any more distressed and I thought they were going a bit over the top. By this time Dan had gone home to get some clothes and other Zack items as he was going to stop the night. They proceeded to get the needle in Zack's hand. I got upset. The doctor turned round and asked if I was okay and said it's alright, it's only a little needle, he's only upset because we are holding his arm down. It wasn't the needle, I was tired, I only had two hours sleep in the last 48 hours and I was upset that Zack was ill. The nurse who was helping the doctor was lovely she said that I was just upset because Zack was ill. In the end they managed to get the bloods off him but the catherter couldn't stay in place so they took it out. They agreed that they wouldn't try it again unless he really needed it. I didn't think he needed it in the first place!

A chest Xray was also taken. When the results came back it turned out he had some shadowing on his lungs and infection showing up in his bloods. They said that it was likely that he caught a virus which had turned into a chest infection and they started him with oral antibiotics. By the time Dan come back and I left to go home Zack was a lot more comfortable and sleeping. I went home, got a shower and slept through the constant drum of fireworks.

When I got in the next day The Pants seemed a bit better and fortunately the consultant whom Zack is under was about and came to take a look at him. He had only taken two steps into the room and said to us, "Do you think he's well enough to go home?" He checked him over, looked at his monitor and asked us how his saturation levels had been (amount of oxygen he was taking in). We said they had never really fallen below 85, he said, mmm sometimes staff end up treating the numbers on the machine rather than the patient and he didn't need the oxygen. He assured us it was a chest infection and that like he has said before he will get quite a few of these. Regardless of Zack's problems all babies suffer in the first year, which is often the worst. The second year is tough again but a bit easier and as they get older their immunity builds up so it gets easier. We were allowed home. Zack was still a bit panty all day and slept through most of it but I'm not surprised given he had a rough time. He has some antibiotics to take and they seem to be doing the trick. Only a few more months to go and we should be away from all this winter cold stuff, roll on spring that's all I can say.

and there it was, a proper grin

Happy Halloween...........

Zack has been enjoying his first Halloween, really it's just a chance for me to dress him up in a ridiculous costume for the day, not sure if the Pants is too keen though.

So back to the week of busy times.

Wednesday was the Physio visit. This our third Physio in 6 months. We have met her before in the early days, I am hoping she will stick with us so she can build up some kind of idea as to how Zack is doing.

As Zack's PEG was still sore he couldn't do any tummy time, so she went through some basic stretches and then showed me some new rolling skills from back to side. Zack didn't mind all this too much and she said he had been a good boy throughout. We talked about seating and I said he only has his bouncy chair which he never used to like but now loves. She said that she will speak to the Occupational Therapist about getting us a special baby chair that has some extra padding in it to keep him symmetrical. They even come with attachments to make them into high chairs. Great I said I was after buying something to sit him whilst I try and feed him, that will save me a few pennies.

Thursday was our appointment to see the neurologist at Alder Hey. It was just an appointment for Dan and I to take a look at the images from Zack's MRI scan he had done when he was about three months old. The consultant was really good and went through the images, the large amount of damage caused by the lack of oxygen showed up as dark patches on the scan. This is where the cells have died. Basically the neurologist told us that the damage to his brain was global, it has effected everywhere so as well as two big dark patches in the middle there is also little bits of damage all over his brain, it looked a bit moth eaten. However, whilst he told us that the damage indicates severe disability he doesn't know how Zack will do in the future. The MRI scan only shows him a picture of the damage it doesn't tell him how Zack's brain works. Some children can have severe Cerebral Palsy and show no damage to the brain on an MRI scan others can show lots of damage and not be as severe. I don't understand it all but what I do get is that the damage explains why at the moment Zack can't do certain things that a baby of his age would do with ease. In truth I don't know what he will or won't do but that will never make an ounce of difference to how much we love him.

We also discussed his seizures. The consultant wasn't too worried that they had increased slightly. He said that when a child gets a virus (as Zack has head a couple of weeks ago) the seizures do increase and stay that way for a couple of weeks after the virus has cleared up. He said that if they increase further or become more prolonged to let him know, but in terms of how we described them, they won't be doing him any harm. We mentioned the new ones we have seen, the ones that make Zack cry. He said it is all part of the infantile spasms and the crying is just part of the seizure working through the body, it's just the tail end of it and nothing to worry about.

He is a lovely consultant and understands the parents as well as the children. I am glad we have met with him and that he is looking after Zack in terms of his seizures, it's good to have some confidence in the health professionals that look after your children.

Friday was a free day but a good day. It was early in the morning and I was in the back room on the computer. I had left Zack's bedroom door open so I could listen out for him as he was still asleep in his cot. I suddenly heard a clucking sound, ignoring it I carried on. It got louder. I then realised who it was. I went into Zack's room to find him wide awake, happy as anything clucking away. Helloooo I said loudly, and there it was, a proper grin. Okay he had his tongue between his gums but it was a grin. Ooooooh are you smiling at me I said as I touched his hand. Again a big grin and then another. It was fantastic, he was pleased to see me and knew it was me. The rest of that day was great. He was in a lovely mood and we had a great time going for a walks and playing in the lounge.

I also chose this day to try him on his new milk. He has now been given something called Infatrini, which is all he needs to grow big and strong. It's full of vitamins, minerals and calories that his body needs to develop. He has been on Enfamil AR since being in hospital. This was given to him because he kept refluxing and then couldn't breathe because he couldn't' manage his secretions. The Enfamil has added thickener in it to lessen the vomiting, it basically thickens in the stomach making it harder to come back up the other way. I was a bit nervous about the new food in case of huge vomiting, however so far so good. He seems to be tolerating so hopefully we can dump the Enfamil and stick with our new tasty milk, although I the end result of his new diet really does pong to high heaven!

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. 

Dan told me that this was a pound a deer

Zack spent his Saturday afternoon at Dunham Massey. It was his dad's idea to go, he shouted downstairs that they had let the deers out so we should go and take Zack to see them. I wondered where they had been hiding the deers and imagined them all locked up in a big shed waiting for October 17th when they could be released. I'm sure that's not the case but where have they been hiding?

For those of you who don't know, Dunham Massey is one of those National Trust places, you know, huge house, large grounds, special gardens etc. etc. oh and deer. It's only down the road near Altrincham and a nice afternoon out.

So we pull in to the car park and promptly we are charged £4 for parking and entry into the estate. I had to kick the back of Dan's car seat to stop him swearing at the bloke collecting the money, I think he didn't agree with the small sum exchanging hands. I did try and tell him that it is entry into the gardens, estate and car parking so well worth it. You see in my head that means entry into pretty gardens and big house. This wasn't the case!! Oh no, house and gardens extra, £9 extra so we just took a walk through the grounds to see the deer...... we saw four of them. Dan told me that this was a pound a deer I told him to shut up and that it was his idea and Zack was enjoying the fresh air. Zack enjoyed the fresh for half an hour, then got fed up so we got him out for a cuddle. After 10 minutes of this we got fed up and plonked him back in his buggy and carried on with the walk. It was good to get out and whilst we enjoyed it the Pants decided otherwise.

We went on to visit the brewery so his Dad could stock up on Dunham Massey beer then called into a local farm with a tea room so I could have a coffee and nice slice of cake. Zack liked it in there, he even gave the skunk eye to some small boy who almost ran into him. After the refreshments I went on to purchase yet more home-made cake to take home.....it was good stuff.

Following on from Zack's bath-time and food, he usually goes to bed about 9pm. It's quite good, Dan and I get to have our evenings together and he usually sleeps through. Dan declared that tonight was going to be first fire of the autum. We have an open fire place and Dan has gotten into the wood chopping fire burning thing, it's strange I think it must go back to some natural order of mankind but what is it about men wanting to chop wood and make a fire?

We had put the Pants down to bed, great I thought, I can watch the recorded X Factor, Dan can shout at the TV for a good hour and we're all happy. Nope. Zack decided he was going to stay awake. I went up and got him and brought him downstairs. Immediately his eyes caught sight of the fire....ooooooh what's this, so this is what you get up to when I'm not here, I like this, all bright and warm. So he stayed downstairs with us all, enjoying the fire and having a cosy family time. This was sometimes ruined by Dan telling me how everyone on the X Factor are useless and can't sing. I thought about chopping Dan up and popping him on the fire but I don't think Zack would be too happy so left it for that evening. But he's been warned.

Pictures

Some new pics from the Advance Centre

Dan takes a break whilst the Pants

considers his next move

Hey, who you poking lady!!!

Look, stop with the poking will ya!

Zack has been in a good mood over the past few days

The germinator is better. Back to his usual self and just in time for his mini break to Sussex for his second round of therapy at the Advance Centre for the Scotson Technique.

We travelled down on the Sunday. All in all it wasn't a bad journey and the hotel was really good, much better than the last place we stayed. The room was a good size, comfortable and able to accommodate Zack's entourage of gear. The boy does not travel light. During our stay all I could think about was what the hotel cleaners were thinking when they emptied the bin full of Zack's feeding syringes. I hoped that they didn't presume Zack's parents were junkies.

Zack had his little carry-cot to sleep in, we managed to settle him down for the night, he knew something wasn't quite right. We lay him on his side and he gave a quick look back and two over his shoulder almost as if to say...."Waaaait a minute, this isn't my cot at home, this isn't my bedroom..." then off to sleep he went, lulling us into a false sense of security. By 3.30am he was up and having none of this going back to sleep business so we started our first session at the Advance Centre having only had a few hours kip.

We were there for two and half days (not continuously, they did allow us back to the hotel). Zack seemed to really enjoy it, he was relaxed and allowed us to practice some of the new exercises on him with little protest.

The exercises were slightly more complicated than the first set we had learnt but by the end of the last session it all became clear. Now we are home and having done the set over the last two days, it is all very easy to understand. We even have a white-board to mark off what we have done. However the purchase of the board caused a row about who was going to draw the chart, I think the final words in the conversation came from Dan, "Well I did buy it so I should draw the chart." Pathetic isn't it.

Whilst we were in the South I discovered Dan's knack for hoarding. He was desperate to take home the hotel mini shampoos and shower gels. Now from past experience of his visits to hotels I know what happens to these little extras. They don't get taken to work for use in the showers as promised, they remain in the bathroom and get skanky and forgotten about. I refused to take any. He remarked that they were Elemis and rather nice. I still wasn't taking any home. I started packing the bag ready for our departure when Dan said, "Errrmmmm, you might notice that there are some little things that are coming home with us." He'd made a secret stash of bathroom products in the bag.......I gave up the fight.

I felt really positive when I came back from our short break. It was refreshing to go to a place where you feel that you are helping your child rather than having someone just tell you what's wrong with them without offering much support or help.

Zack has been in a good mood over the past few days, he is continuing his interest in my annoying pestering of him. This usually involves lots of kissing and talking to him in stupid voices, I'm sure he is just humouring me. The other day I came downstairs, Zack was lying on his changing mat checking out the floor as usual, I walked past, he noticed and smiled. So I stopped and said hello, and another smile, this called for a lot of kisses, Zack was no longer smiling......too much kissing.

Every day I am starting to understand Zack more and more. I know his personality and I know for definite he knows me. In his own way he is starting to interact with me and it's wonderful. I get him. Other people may see him and think he isn't doing much but they don't know him like I do, they don't get the chance to see the little expressions, the difference between contentment and annoyance but I do and that means more to me than anything in the world. I never knew that you could love another human being like this, sometimes it's so intense it's frightening. I am really fortunate to be able to love Zack for just being him. He doesn't come along with attachments of my dreams of what I might want him to achieve or gain, I don't need him to show me how clever he is, how talented he is, all he needs to do is be him and nothing more and because of this I get to love him purely for who he is, not what he does. To me, to love someone for this reason alone is a very fortunate gift.

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. 

He seemed quite impressed with Zack's Moose socks

We are still in coldsville....otherwise known as man flu house. Both Dan and Zack have a cold, I seem to be immune to it. I feel like I am in one of those disaster films where everyone has a virus and I am the only human survivor that has an immunity to it......oh no...hang on, sorry, nope, I am thinking I am in that film I was watching the other day, I Am Legend.

Anyway, back to the Pants. Yes he still has his cold. Just when I thought he was getting better he decides to have a day of coughing and being in a bad mood. A real, I've got a cold and I feel so sorry for myself mood. I am hoping it will have cleared by the end of the week, if not it's off to the GP with him like any normal over-anxious new mum.

We met with the neurologist from Alder Hey the other week about Zack's epilepsy. He seemed quite impressed with Zack's Moose socks, I think the man has an appreciation of 'fun' socks, his were striped ones ala Rainbow.

It was rather a quick meeting but the bottom line is we are increasing his sodium valproate medicine over the next few weeks and then Zack will have another EEG done. The consultant explained that Zack's brainwaves are a little chaotic. To put it simply instead of just thinking normally it's all a bit fuzzy, Dan likened it to interference on the television, like when you get a snowy picture. Not that you would get that nowadays, what with all this newfangled digital malarkey, he means like back in the olden days when you had an ariel on top of the t.v. or if very poor, a wire coat-hanger and you would have to move it around until you got a clear picture or have someone stand by the tv for an ultra fine high definition version.

Anyway back to Zack. The medicine hopes to make the picture a little clearer for Zack so that any activity that takes place in his grey matter will be able to do so more smoothly. When he has a seizure it's simply a burst of energy within his brain. This hypsarrhythmia that Zack has causes the seizures which could also be delaying his development, so the idea is the more control we get over it, the more his development may progress. (That's the theory but it's not for certain that this happens we just have to wait and see.)

Over the past couple of days Zack has introduced a new seizure into his repertoire. I don't like it. He raises his arms up and moves them over to the right, his head turns to the left and his eyes go really wide as though he is in shock. This lasts for a few seconds then he comes back to the land of the living and starts to cry. It's the crying I don't like, this one obviously distresses him. I am hoping the medicine will put a stop to them but for now I am keeping an eye on them. If these start increasing I shall contact the epilepsy nurse for some advice.

Sometimes I think if I sat down and really thought about all the problems Zack has and the awful outcomes that could be I think I would drive myself crazy. There are some parents having been through a similar experience that say the first two years are the most difficult. I suppose they could be right. Everything is unknown for us and the outcome could be not so good or much better than we had hoped. I have to remind myself to keep living in the moment and not get so obsessed with the future that way I can enjoy my time with Zack rather than sit there worrying about his prognosis. And I do love spending my time with Zack.

UPDATE

2nd October 2009

My immunity is shattered. I have been infiltrated by the germinator. I have the bad cold. Zack got taken to the doctors and has been given antibiotics for a chest infection. I never new babies could cough and snot so much goo, these are not pleasant times, especially when the Pants coughs sick into your hair. Nope, not good, not good at all. Get me tea, toast and magazines I need to recuperate.