I mean, he's never going to appreciate the lyrics to Womaniser if he can only hear it at a whisper!

Zack seems to have turned a corner since having his gastrostomy, and in typing that I hope that I haven't just jinxed things and we go back to endless vomiting sessions! It's been a tough two weeks, we struggled getting his food to stay down but now he is back to near enough the full amount he needs throughout the day. Chucking up has been greatly reduced to just a little here and there. I am amazed at how much a baby can puke, pee and poo all at the same time...but I'll spare you the details to that little session.

We now have a wonderful nurse who calls round to see us about his gastrostomy site. She is great for giving us advice on how it's healing and how he is doing with regards to his feeding. She also assured me that with some babies they can take several weeks to settle down so he is doing really well.....I can't work out whether she was just telling me that to make me feel better or whether he is really doing well, either way, I am glad he is getting on the mend.

Zack's medication for his epilepsy has now increased so I am hoping that we see a bigger reduction in his episodes. We also had a nurse come to visit us about his epilepsy. She was lovely too and explained to us that we still have a bit to play with in how much of this medicine we can give to Zack. The aim is to stop the seizures, although this may prove difficult we will have to see how it goes.

Other big news is Zack is going to have two baby hearing aids fitted. We went to see the audiologist consultant. She told us that even though Zack didn't pass his hearing test and only hears at higher decibel levels he does have fluid in his middle ear which could be affecting his hearing. He is two young to operate on to drain the fluid (plus I wouldn't want him to go for another operation), so it's a case of wait and see as to whether it sorts itself out as he gets older and bigger. The doctor said that we can either do one of two things. One, just talk to him loudly or two, get him fitted with some little hearing aids. For me there was no choice, I want him to hear the world around him, and to experience lots of different sounds and voices so I asked for the hearing aids. I know he can pick up some sounds and he does hear me when I talk loudly but that isn't the real world, how do I know if he can hear the birds sing or the cats meowing, or even Britney for that matter........I mean, he's never going to appreciate the lyrics to Womaniser if he can only hear it at a whisper! So next week we are off to have a fitting for his baby hearing devices, I can't wait to see how he responds when he has them in, I am hoping they will make a difference to his development. However this decision, although easy to make, also brought home the fact that it was just another little extra problem that Zack has to face. Sometimes it gets me down a bit as I feel that every appointment I go to it's one more thing which isn't quite right for him, it's very easy to for your mountain of hope to get chipped away at. But that was yesterday and today I feel more positive, I have to view these decisions as the right ones in order to benefit Zack, I have to give him the best possible chance and if it means hearing aids or god knows what else in the future then so be it. If it helps him, then we're in.

After the audiologist we had an appointment with the Physio. This is a new physio and she is very good but does make me laugh. She has a tendency to call Zack daaaaarrrrling, as in "Okay darrrrrling, come on then darrrrling". Then when he gets upset at being pulled about a bit, she picks him up, lifts him towards me and goes "Taaake, taaaake, take him please". In my head I'm going, "Noooo, keeeep, keeep, keep him." Her advice has been great and she gives me lots of pointers for exercises with his feet, legs and arms. She has also taught me how to encourage him to roll over which we have been doing a bit. However, due to his PEG we are having to leave off tummy time for a bit whilst it heals, not that Zack is too bothered, I think he likes getting away with not putting in some extra effort these days. Well, sickly boy can only play poor me for another few days and then it's back to work. Although it is nice to just cuddle him. Like today, it was absolutely pouring with rain outside so we spent the day all snuggled up having loads of cuddles and watching crap films on TV. Mummy ate lots of chocolate and Zack just had milk, good job I wasn't for sharing the chocolates.

Elephant Trunk Free

Just a quick update of some pics of Zacky Pants without his face furniture.

Looking cute with his daddy.

He's not really sleeping, he's just pretending.

He sounded like a wounded animal

The Pants has survived his first operation.........but it hasn't all been plain sailing. Mind you, I think we have come to expect nothing is ever suitably straightforward, this boy is all about the drama.

Before I continue I have to say that Alder Hey Hospital is absolutely fantastic, the staff are brilliant and you do feel you are in very safe hands. However, it is absolutely filthy. It is really tired and run down. The room we were in was dirty, there was bits of rubble over the soap machine and hair and fluff all down the sides of the skirting board, I couldn't wait for us all to get out of there. Zack on the other hand had other ideas, which involved an overnights stay with his daddy sleeping in yet another hospital chair. (He was offered the camp bed but said he preferred the chair as he was at eye level with Zack's head so he could see if he was in any pain or upset......that's dedication. I think he is going in for Father of the Year Award. I would have took the camp bed, my view is Zack was hooked up to a monitor and if anything happened an alarm would have gone off and a nice calm nurse would have come in and made it all better. But Dan is a bit of a martyr.)

The operation for Zack's gastrostomy to be fitted went well. It was all over and done with in about 45 minutes. It was afterwards that was distressing.

The poor little man, his mouth and throat was so dry when he came back that we gave him some water on a piece of gauze and he tried to suck off every last drop. He was in some distress eventually he calmed down and the nurse gave him some water through his new tube in his belly. She did this very quickly, basically 50mls of water in about 30 seconds. He immediately threw this up and then to top it all struggled to breathe. She used the suction machine to clear some of the liquid in his throat and gave him a bit of oxygen. He got his breath back quite quickly but I think from then I knew it was definitely going to be an overnight stay. 

Zack was in quite a bit of pain and discomfort throughout the day and couldn't keep his food down so he was put on a drip. By about 9pm he had settled down and was starting to sleep making intermittent whimpering noises, he sounded like a wounded animal and I was starting to regret the whole operation. Dan stayed the night with him and I came back the next morning at about 8.30am.

Zack seemed a lot brighter and was keeping some of his food down so we were allowed to go home. I'd like to say that the past few days have been easy but no, they have been very stressful.

During the operation they blow gas into the stomach to expand it so that they can see where to make the incision. This makes the baby very colicky afterwards and you have to release a lot of the air through the tube. This trapped wind causes them a lot of discomfort but for Zack it has been carrying on for quite a few days now. He is a windy baby anyway so this has only added to his discomfort. He has also been vomiting some of his food up, so we have had to take it very slowly and just give him small amounts. He hasn't been getting his full volume but at least he has been keeping the food we are giving him in his tummy.  They also cut through the stomach muscle so the inside may still be a little swollen. They gave us a load of painkillers to take away with us but so far he has had a little bit of paracetamol here and there. They did mention that we can give Zack Codeine with the Paracetamol but it does tend to make them sleepy........hmmmmmm, that's something to think about.

Zack is a lot brighter now and very alert, by very alert I mean he doesn't go to sleep in the day at all now. This means I can no longer fit in all my normal little chores (great excuse for not washing up). However, my saviour, the Little Room is the answer to my prayers. I can stick him under there now and he's quite happy for an hour or so.......I think it is the most magnificent idea in the history of toyland.

Zack's little episodes are becoming a little less frequent and they aren't happening in as many batches now, it's just back to the one or two here and there, over a day he is tallying about 20 - 25 of them. I spoke to the epilepsy nurse who is coming to visit us on Friday and she explained that he isn't on his full dose yet so it's not going to stop them until he gets to the increased dosage which we will put him on next week. If they increase when he is on the full medication then we will have to go back to the drawing board and see what to do next. So fingers crossed that this medicine works.

This has been a really long week for the three of us. And whilst I had my doubts about the gastrostomy I am now convinced we did the right thing. Zack is much happier without his NG Tube, his breathing is easier and he has less secretions. Hopefully in a couple of weeks we can get him back to his full volume, less the vomiting and less the painful wind. But as usual it's all one step at a time. Oh and one other new thing Zack has learnt, shouting....very, very loudly. He now opens his mouth more when he is crying, in fact today he was so loud he frightened himself so much that he actually shut up, now that's clever.

He has been started on medication called Sodium Valproate

It's Zack's big op day tomorrow. He is oblivious to it all. Meanwhile I can't stop thinking about it. I have even written a list of what to take with us, I mean how hard is it to remember a change of clothes and his food!!

We went to see Zack's consultant on Monday afternoon. I had a call from his secretary asking us to come in at 2pm. I met Dan at the hospital, he looked extremely worried. I asked him why he was so petrified, he looked like we were taking one of the cats to be put to sleep. He said he was terrified that the Doctor was going to tell us something awful about Zack, sometimes Dan gets himself wound up with too much thinking.

Zack's seizures are atypical, meaning he doesn't have West Syndrome, he is suffering with a form of epilepsy. If we don't get it under control it will get worse. He has been started on medication called Sodium Valproate. There is a list of side effects as long as your arm, but that is the case with a lot of medication. I think the main one is hair thinning, well in Zack's case, not much of a problem there. 

We are to start on a small dose and increase it gradually over time. From looking into things, this may or may not work in getting his seizures under control. We will just have to wait and see. We have been asked if we can try and keep a diary of how many episodes he is having in a day. Great, this means Dan will become even more obsessed with counting the activity of the Pants. 

Over the past day or so we have noticed an increase in the number of times the seizures are occurring, they are now happening in bursts of four or five, inter-spaced with 40 second intervals. So far today he has had 21, not good, but I am hoping the medicine will begin to work in a few weeks. Zack is also a little bit less alert than usual, again I am hoping this will subside and his alertness will increase. 

Things are very tough at the moment, there is a lot going on and a lot for us all to deal with. I said to Dan the only way I can explain how I feel is that we are at the foot of a very big mountain and I haven't even got halfway up. I'm still at the bottom stood on a little ledge. I hope one day we'll be able to stand at the top and look at the sunrise.

If only we could just get a break or a glimmer of hope it would lift us a little. Hope is a very difficult concept to hang on to when you are faced with a daily serving of difficulties. It doesn't help when one of us gets down about things, we only really have each other for support. As nobody truly understands what our life is like we lean heavily on each other. 

I think this week is just a difficult week and I am sure there will be many more to come. Hopefully next week will be better, I just pray every night that Zack makes some improvement, he deserves all the help he can get.

Zack has discovered the best place on earth

Friday didn't bring good news. We had a call from the doctor to tell us that the little episodes Zack was having are most probably seizures. As they weren't distressing him we decided between us to leave things until Monday when the doctor speaks to our consultant about it all. 

I was upset at hearing the results but I suppose it was inevitable, given Zack's very rough start, that he was not going to get away without suffering some form of epilepsy. 

The trick now is to find some form of medication that stops his seizures but doesn't have many bad side-effects. ie. doesn't sedate him so much that we can't progress with him. 

Having done a little bit of research and in speaking with other parents it seems that although there are side-effects to the medication some people have found that when they get their child's seizures under control their development has improved greatly. One parent has told us that infants who suffer infantile spasms have a specific brainwave pattern that is pretty much making the brain behave chaotically, therefore, once this is under control then you can start moving forward.

I am glad that Dan and I have picked up on this pretty quickly, I think the longer you leave it the more damaging effect it can have on the brain. I am going to ask the doctor for an appointment with a neurologist so that they can explain in detail the ins and outs of it all and what this means for Zack. Mind you I expect that this will be all doom and gloom as doctors don't usually have any words of hope or guidance for you, you have to find that deep within yourself.

On a lighter note, Zack has discovered the best place on earth, apart from on my shoulder that is........he has been spending time in his new little room. Yes, the little box arrived this week. It is basically a box with three sides and a perspex top with holes in it. It is based on the Little Room theory by Lilli Nielsen:

http://www.lilliworks.com/prod04.htm.

Dr Nielsen was an expert in educating children with multiple disabilities and the Little Room is used to allow babies to develop their senses within a smaller contained area. Oh, check out this link for more details, it will stop me babbling on:

http://www.lilliworks.com/about_dr__lilli_nielsen.htm

So, I popped Zack on his changing mat and slid him inside the box. I had already hung three little toys down through the lid. There was some protest at first but then he started moving his arms about and kicking his right leg. Vision lady (who delivered the box) explained that babies start to reach out by first accidentally hitting things, after a while they then realise that they can control their own hands and arms in order to grab and reach for things. 

Zack stayed in his little room for a good 30 minutes bashing away at his toys, every so often he would stop and turn to his left to see what he was hitting on the other side. Loving the box and we have until September with it, then it's over to Grandad Price to build him his own (even though his Grandad doesn't know this yet.)

Today in Warrington, it was Disability Awareness Day. This is a huge event for everyone and includes lots of exhibitors with information and advice, as well as your usual entertainment of pub singers, dancing girl groups and some bloke under a tent with several birds of prey. We picked up lots of information about various groups and charities that can help Zack. One that looks interesting is Stick and Step, it's a charity in Liverpool that offers free therapy to children with cerebral palsy. They have a mum and babies group which I am hoping to take Zack along to so we can find out what it's all about. 

Zack's big operation is next Wednesday and I am still terrified. Dan isn't and Zack certainly isn't but I can't wait for it to be all over and to have him home with us. I pray every night that he will be okay. I know it is only a short operation but that isn't going to stop me thinking something awful could happen, I may be being a little morbid and negative but that's my baby boy I am giving to someone else to look after. He was in hospital for seven weeks of his life and going in again, even for just one night, brings it all back. Roll on this week I can't wait for it to be over with.

He looked like a poor excuse for a member of a notorious LA gang

Zack went to Alder Hey today. We met with the Doctor at the Child Development Centre who suggested we took Zack to have an EEG due to our concern about his spasms. 

The EEG measures the electrical activity along the scalp produced via the brain, it can also let us know if Zack's little episodes are seizures or not. 

Zack had electrodes dotted all over his head and when I looked behind him he reminded me of Predator, you know the big alien thing with dreadlocks. It got even worse, to keep his little electrodes on he had to wear a hairnet that tied underneath his chubby chin. He looked like a poor excuse for a member of  a notorious LA gang. I think the tying of the net bonnet finished him off.  In protest he ripped out his NG tube and then cried through the whole thing.

Fortunately, he had two little episodes, these were recorded on film and the nurse noted down at what point they happened. This way we can try and get some answers. We won't find out the results until tomorrow or early next week.

I am hoping that he doesn't have infantile spasms and I am also hoping that if he is not suffering from seizures as we don't want to dope him up with medicine that will make him less responsive to all the stimulation we are giving him. But I suppose we will cross that bridge when we get to it.

I have found an excellent charity called Cerebra (link on the right). They provide help and advice for parents of children with brain injuries. They also have a lending library that will loan you books and sensory toys for free. It's fantastic. I ordered two books and a bubble lamp for Zack. I very nearly went for the suitcase of sensory toys but I had the feeling that I probably would have been more excited about them and Zack would have just fallen asleep. Best to stick to one item at a time. But seriously, I want that suitcase!!

Dan thought we had gone on our holidays to Platt Bridge

Zack's been on his holidays....to East Grinstead! It wouldn't be my first choice of exotic destinations but what can you do when the Pants wants to go to Sussex for a few days. We travelled down last Tuesday, not for a break but to start some therapy for Zack. I mentioned in my previous post we were going to do the Scotson Technique. 

So there we were on a Tuesday evening driving down to Sussex, the journey wasn't too bad. Zack was reasonably well behaved and so was his dad, I didn't hear too many "are we nearly there yets". Not until we got to our base camp for the next three nights. I thought I had been really smart and booked us into a very reasonably priced hotel. And it was lovely, very clean, great staff, absolutely stinking hot in our room, oh and did I mention it was at the back end of a council estate. Dan thought we had gone on our holidays to Platt Bridge. I reminded him that it wasn't a holiday and that if he can do any better on a small budget then next time he should book the accommodation. It wasn't as polite as that, there was some swearing involved, but we had been trapped in a car together for over four hours.

    The Barrington Lodge in all it's glory.

  The craphole where it lives....I feared for my life!

We went to the Advance Centre on Wednesday and began our training. The technique is very gentle, non-invasive and relaxing. It involves positioning your hands at different points on Zack's diaphragm then gently pressing down and releasing. We learnt eight exercises in total and the next time we go back (three months later) we will learn another 18 or is it 24, I can't quite remember but it's a bit more intense than this session. 

The therapists and the lady who developed the therapy Linda Scotson, are lovely, very friendly and extremely informal. Dan and I were even treated to a back massage off one of the therapists, yes, hard work all this therapy stuff.

  Zack is developing moobs and I need to update my QVC hands

 Therapy is such hard work

On Thursday we took a trip into Brighton, it was 34 degrees at 4.30pm, thank God for air conditioning in the car. We took Zack for a stroll round, he seemed to quite like Brighton, did lots of little smiles whilst being pushed about. I love it when he tries to smile, he still isn't smiling yet but I know it's coming, I can't wait for the day he does a huge smile. Although saying that, this morning I went into his room to get him up and tripped over his jungle gym, this made one of the little bells ring and I caught him giving a sly smile in response, obviously he found it amusing that I nearly broke my neck making my way into his room.

The journey back home was horrendous, the M25 should not be allowed to exist, it's just wrong I tell you. One hour and 50 minutes we were stuck on it, with me in the back saying how sick I felt and Zack saying how annoyed he was to be in his car seat. The whole journey took 7 hours with stops off at service stations, I think it was just a bad day to travel there seemed to be lots of accidents and hold ups.

We have continued with the programme we learnt and are trying to fit it in with day to day life. It isn't too bad at the moment. We don't know what results we will see, and we are not expecting miracles or for him to suddenly jump up and do cartwheels. We just hope that in a few months time we can see some small developments. We spoke to another parent at the centre who couldn't praise it enough, her daughter is epileptic and she said it has really helped her daughter a lot. 

Before we went to the centre I wasn't sure that we were doing the right thing. Having been there and learnt some of the process I am more convinced and have a gut feeling that this will help Zack in some way. Well I hope it will anyway.