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.