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.

Zack has a cold. Well it had to happen sooner or later. He's not been so great over the weekend with coughing and making attempts to clear his throat. Poor thing, he really struggles with mucus at the back of his throat but this cold has made him much worse. We have given him some water which helped a bit but for now it's just riding out the storm. We were worried at first that he may have started to struggle with dealing with his secretions in his mouth but this was all dismissed when Dan kindly informed me at 6.30 in the morning that Zack definitely has a cold as he had just yacked up some big green stuff. Great, I thought, I'm so proud of my son and his ability to get rid of his cold blobs.

Previously to the onset of coldville Zack has had a quietish week except for a bit of physiotherapy. Another home visit resulted in Zack getting plonked on top of a plastic tube and encouraged to raise his head. He did this a few times and then shut his eyes.

"Oh look he's tired, he's gone to sleep." said our friendly physio, "Oh no" I replied knowingly, "He's just shut his eyes because he doesn't want to do it any more, he's just pretending."

"No, he's definitely asleep."

"Nope, trust me, when he decides he's not playing he'll either look away from you or shut his eyes"

And sure enough we both saw him half open his eyelids and peep over his shoulder to see if she was still there. One thing is for sure, Zack always knows what he doesn't want to do. And when he doesn't want to do something no amount of force will make him budge!

We got sent a letter the other day from the Dr we see at the child development centre detailing his diagnosis and therapy etc. etc. It also mentioned a little bit about Zack's start. Apparently when he was born it took 14 minutes to get a trace of a heartbeat after a second shot of adrenalin they got a heartbeat at 18 minutes. He was transferred to the SCBU at 35 minutes of age. That boy is amazing. 18 minutes it took him to come back to us. Some people hate the phrase "everything happens for a reason" as though we are not masters of our own destiny. And to some extent we are, the choices we make and the paths we choose lead us through our own lives but I do believe that things happen for a reason, often to teach us something that we need to learn. I am so grateful to the doctor that decided to try and bring him back to me even though I have questioned why and how they make the choice to try and resussitate a baby and to what expense.

Dan and I went out for our first outing on our own without the Pants this week. It was Dan's birthday and he wanted to go and see Harry Potter and the Half Blood Prince. It's not really my cup of tea but as I am such a good partner and it was his birthday I didn't put up a fight.

Nan and Grandad Price where the designated baby sitters. After we fed Zack off we went for our afternoon out....I felt like I had left my right arm at home. Dan wasn't too bothered as he was used to it, after all he goes off to work every day leaving Zack with me. I've never left Zack with anyone other than Dan. It was both good and odd to be out just the two of us. It was like before Zack but strangely not quite right. As soon as the film had finished I was up and out of the seat......well I was worried about him getting hungry plus he had just started with the coughing cold. We got back home. Everything was fine. Apparently he had been good all afternoon apart from about 4pm when he had a coughing fit which caused a little panic. Once he got some food down him he was back to his normal contented self. We are off out again, this time for a meal in the evening and Nan and Grandad Gould will be looking after him. I hope I get used to this leaving him.......but at the moment it isn't looking too good.

It was a wide eyed open mouth smile

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

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

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

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

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

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

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

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

I was so concerned that I even questioned Dan's dose of his anti-epilepsy drug

Zack had the pleasure of his mummy and daddy with him all week. Dan took a few days off work. We hadn't planned to go away anywhere, but we managed to keep the week free of appointments so that we could go out and do lots of nice things together as a family. The weather, on the other hand, had other ideas. Considering it was a really crappy, wet, windy week we managed to have a rather good time. 

We popped over to Chester on Monday for a spot of luncheon and a whizz round the shops. It will also be known as the 'Chilled out Zack Day'. The Pants isn't really one for sitting in his car seat, he can take so much but then if he decides he's had enough, he's had enough, same with being pushed about in his pram. Lately he has started to be, lets say, more accepting of his car seat and pram. I don't know whether he had words with them, or if he has just resigned himself to the fact that he's always going to get plonked in one of them but he seems to not mind so much.

However, on Tuesday, he decided he really loved his pram. Yep, liked being pushed round the shops and was even kind enough to go to sleep for a good hour whilst we had a nice lunch and a bit of a relax. Even when he woke up he just lay there, holding Weedy (no we aren't giving our child narcotics, its a mini mobile that's shaped like a large flower, it reminds me of Little Weed off the Flower Pot men). I was so concerned that I even questioned Dan's dose of his anti-epilepsy drug that he had given him that morning, which led Dan to question if he had in actual fact given him 2.2mls or not.

I don't know what was up with him but he was a little lethargic to say the least. But not to worry an hour after we got him home he was back to his usual self and kicking off because he wanted his food.

Wednesday was Swim Day. Zack got to become duh-ta-daaaaa........AQUA ZACK. We took him for his very first day at the swimming baths and to mark the occasion I had bought him a special little baby wetsuit. It's like a body-warmer, so they don't get too cold when swimming. Dan said he looked like a baby action hero and christened him Aqua Zack, I suppose that would make Dan his side-kick, (suggested names in the comments section please).

Zack, aka Mini Rocky Balboa before his swim session

We went to the Tadpoles session, which is basically the teaching pool with all the play toys thrown in. It wasn't too busy and reasonably clean for a public swimming pool. We think Aqua Zack quite enjoyed it. He had his curious face on, it's hard to describe but it's almost as though he knows that something different is going on but he can't quite work out what it is. He seemed to like the water and being bobbed about, he liked the lights in the pool but couldn't be doing with the toys. Aqua Zack has no time for swim toys he's just there to save the planet!

Fifteen minutes later and the frown appears, followed by pouty lip and then crying. Swim time was over.

Aqua Zaaaaack!! Oh and daddy.

Aqua Zack takes a nap after his swim.

Friday was Sensory Room day. I've mentioned this before, I take Zack along, he watches the bubble lamp and then falls asleep. Well, Friday was no different. We got in, bubble lamp on. Bubble lamp fun to watch.......fibre optics...mmmmmm....quite interesting.....oooooh bubble lamp.......goodnight! So that just left me looking at the bubble lamp and Dan dozing off on the big bean bag with one shoe on and one shoe off. I took the opportunity to do a little of Zack's Scotson therapy whilst he slept, well, best not to waste the hour completely.

I think I need to note down in these entries any small changes that we see in Zack so that I can remind myself of how far he has come along. You see, usually we could measure Zack's abilities by milestones that most babies would meet, well so far we can put down a big fat zero for that as it is going to take him a lot longer than most to meet them. For us we have to look at the finer details, the small stuff that I suppose most parents would miss with their children or even take for granted. For example, most recently we have noticed that he is making more purposeful movements to try and get hold of things in his Little Room. I bought him a little musical rattle with bells on it and the other day he kept hitting it until he very slowly tried to control his left arm and hand in order to touch it and hold it. He didn't do this once he did it a few times. For Zack this is a good step forward.

He is also improving with trying his little bits of food. He is starting to open his mouth a little for the spoon and even sucking some of the food off, messing it around in his mouth and swallowing it. The other day I gave him a little bit of apple puree on my finger and his sucking was really strong. In fact, I was amazed at how good it was, it was continuous and not at all weak like it used to be.

He is taking notice of more sounds now when he has his hearing aids in and when he doesn't have them in he startles to noises a bit more. By far, I think the hearing aids are greatly improving his understanding of the world.

Finally we have managed to get Zack's feeding down to four times a day. He is taking much larger amounts of food so that means we can get him to bed my 9.30pm and he sleeps through until about 6am. No more feeding at midnight. However I say that now, no doubt the dietician will increase his food soon so that may need re-thinking but for now we have a great routine and he is sleeping really well.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

"What?"

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

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

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

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

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

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

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

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

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

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

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

Some New Pics

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

"It's all too much!"

"I'm very cute I am"

Asbo in training!

Dan has taken to calling them Dipety Doos

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

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

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

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

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

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

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

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

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

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

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

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.