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.