Nudge on my shoulder

I have lapsed in my skills as a physiotherapist. I remember a time when I would do some physio every day with Zack, until life and another child got in the way. 

Don't get me wrong, I would at least do something once a week or even little bits here and there but not every day. I noticed that during a period of illness Zack had got very tense. He hadn't been to his conductive sessions for at least six weeks. Last week he returned. When I collected him, he was a different child, very relaxed, loose and not at all, tense. I mean, granted he could be in a state of shock having been put through the equivalent of a DVD session with Davina, but it did him the world of good.

And this nudge on my shoulder prompted me to instigate an after school regime. 

So now every day, after he comes home from school we get the mat out and do 15 - 20 minutes of physiotherapy. This includes stretching, tummy lying and sitting up. 

It also includes an assistant coach called Scarlett. More like an extra in a fitness DVD she sits by the side of us, stretches her arms up, and does splits with her legs. All, whilst watching Curious George. 

Zack seems to be enjoying after school physio. The other day he sat unsupported for six seconds and managed to pass six trumps too. Nice. 

It goes to show that if we want to we can fit things in to our busy schedules.

Oh yeah, if that's true, then why can't I fit in twenty minutes of exercise? Seems I am more motivated toward my son than I am at being fat free at forty.

I thought no more of it

Bad news first.

Stupid Disability Living Allowance form is in front of me. Or as I like to call it the book of 'What Zack can't do'.

Yes I have to fill it in once again. Tell them all about the fact Zack can't walk, speak, eat, or see properly. Makes him sound like he can't do anything. I tell you, the Zack on paper is nothing like the Zack in reality. Still, tis but once a year (my Christmas treat) and upon completion Zack can continue getting benefits that we use to buy him equipment that help him with day to day living. 

Moan over.

Good news now.

Some Primary Care Trusts will fund a block of therapy at Bobath. This is a centre which specialise in physiotherapy for children with Cerebral Palsy, our physios are meant to be Bobath trained. 

Here is a link to their website tells you lots more about it all.

Bobath

Well a while back I asked Zack's consultant if she would put in the application for funding a block of therapy for the Pants.  I thought no more of it and then on Friday evening I got a phone call from her saying that they are going to provide the funding for him to go along for a block of therapy sessions.

Yaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaay.

Very happy for The Pants. Not so happy having to spend two weeks around the Village. Still we can make it into a little holiday. Every cloud and all that.

Thank God they are usually only every 6 - 9 months.

Well it seems I may be wrong about the O.T service. Following on from my meeting I get a phone call two days later from a different O.T saying that she would like to meet Zack for an assessment as it seems there are areas in which they may be able to help and advise me. 


Hmmmmmm and what areas do they think he needs help with I ask. Well, sensory, but he doesn't have any sensory aversions? No, but we can offer you some advice on mobility and using his sensory skills to develop his play etc. Okay then, I am not going to knock back help that's on offer so next week we go for an assessment, this should be interesting, will ask about the toilet training again....that's bound to get a raised eyebrow or two.


Had a depressing development consultancy appointment the other day. I hate these stupid review meetings with doctors they are always so negative. It consists of being asked lots of questions, making sure we are seeing the right people and then reminding me of the types of disability Zack has and not really making a big noise about what he IS doing. Thank God they are usually only every 6 - 9 months.  The physio was there too, again none too positive. Even though the other week she was saying how much straighter his back was, how his hips were looser and how he was showing a lot more interest in his toys. She suggested we now focus on his communication skills rather than getting him to move about as it is likely that he is going to have limited movement. Well maybe he will, then again maybe he might just change and suddenly move a lot more. He is now rolling from back to side which he could never do and starting to try and pull himself up. The thing is the determination is there inside of him, he wants to do these things he just finds it hard to control his body. 


As Dan reminded me their opinions are not that important because we know the steps forward he's taken and to us they are huge. 


On a positive note I managed to cancel two appointments this week thanks to that one meeting. Leaving me more time for fun with the Pants.

Zack has been responding more

Zack has decided to have a new sleep pattern, which works for him but doesn't work for me. Since Christmas and possibly, since being ill during Christmas, gone are the evenings of putting him to bed by 7.30pm. Now we are lucky if he gets to sleep by 9pm. No matter how tired he is he will NOT go to sleep. We have tried everything, ignoring his crying, not ignoring his crying, staying with him, not staying with him. He's in bed, he's out of bed. I am hoping that this is just a phase and will pass, please let it be a phase as every night is a challenge to see if we can get him to sleep before 10pm!!


I have been trying to get a lot of appointments sorted out as come March we will all be very busy with a new little person.


Zack is going to have a sister, not sure how he feels about that but we are very excited to be expecting again, although I am now eight months pregnant I am at the stage were I would like my body back. However, so far all is going well, (fingers crossed, touch wood) and I am hoping that this baby will decide to stay there until the bitter end.


Since the last couple of months Zack has been responding more and more to his toys and his therapy sessions. When his physio came round the other week she was very impressed with how straight his back is becoming and that his hips are looser. She also fixed his standing frame as he is growing like a weed, so now looks super tall in it and holds his head up brilliantly.


Just sleep though you little bugger.

I wonder if she' ll give me a sticker next time.

Have been continuing with the torture routine and Zack is now getting used to it which means less screaming and carrying on.  He is doing well but I still can't help but think that when I am doing his stretches he is deliberately not allowing me to move part of his arm or leg just to show he's the boss. 


Managed to get back to doing his Advance therapy which has been hindered due to his reflux. In fact have managed to do quite a bit thanks to having some home appointments rather than outside visits. 


We had the physio round this week and she has put in the recommendation for Zack to have some Piedro boots fitted to give him some more stability in his legs. She mentioned that he might be better having leg splints to keep his feet and legs in-line as they are turning out slightly. I am not so sure about them, not because it's more "extra" special needs equipment but I not sure I like the thought of his legs being held in a position all day by splints. However having spoken to other people whose children have splints it seems that they are a good thing and some wearers aren't bothered by them at all and actually stand better in them. For now I think we are going to try the boots and see how we get on.


Zack's new car seat has arrived. The Mini Carro. I sat him in it in the house as a trial run and he was very happy. I took him out in it in the car and he HATES it. Oh my lord I thought he was going to explode or have a heart attack. Still, he was a little better on the ride home and as usual I will persevere as it has to get better. His mood improved when I started singing to him, but how many renditions of the Wheels on the bloody Bus do I need to go through to stop him having a fit of rage in his expensive car seat. 


In defence of this seat I have to say it is much better than our other one, more supportive and comfortable for his highness.  Maybe he just hates cars. I think it's the one time I wish he could talk and tell me what the problem is, I am not giving up though, he will get better. Fingers crossed. Either that or I'll just have to use public transport. Oh the thought of it.


We had gone to the dentist in the new car seat. Dentist likes to see the children early so they get used to them (early in their lives that is, not early in the day). She was very gentle and had a little look in his mouth and feel of his gums. His teeth, all three and a bit of them, are fine. She told me to brush them twice a day and that she can feel the other bottom four coming through. And that was it, see her again in six months.  Don't know about getting him used to it but I think by the time we finish visiting I'll have gotten over my fear of dentists. I wonder if she' ll give me a sticker next time. They had a nice selection.

It looks like a torture video

We took Zack to Brainwave this week for some extra help with physio. The place itself is only down the road  so it made a change not having to drive hundreds of miles for some therapy. 

Errrm where are we again?

Oh God there is no escape.

Brainwave offers a tailored programme of physiotherapy and we went for a two day assessment. They put together a short programme of exercises for us to do at home with Zack and assessed where he was in terms of his development.


It was really good to have a physio and occupational therapist for two full days just with Zack. I say two full days, but young man decided that he would take two naps throughout the day. 


It became clear that Zack is completely unaware that the things at the end of his arms are his hands and that he can use these to his advantage. His head control was good but he has a lot of stiffness in his hips and is stiffer in his right side than his left. The exercises we have combine stretching with play. At first I was a little unsure as to why we were doing similar exercises that I do with our NHS physio but by the end of the second day everything was much clearer and I now understand why we are doing what we are doing and to what affect this may have on Zack. 


Now the boy on the other hand was not at all happy being put through his paces. The first half of the DVD shows him screaming and crying his way through the stretches, it looks like a torture video. He was crying because his body hadn't been put into these stretches before and they were uncomfortable. The second half of the DVD he was much happier although at one point we had to stop filming as he decided he wanted to have a sleep. 


Before we left we were given all the equipment we needed to complete the therapy which included a new gym ball that smells like cat litter and a foam wedge for his tummy time, which by the way he is very good at. 


The overall idea is that the therapy will help Zack to decrease his stiffness in his legs, begin to roll and move around on the floor and to play with his hands open. We go back in six months for an assessment and tweaks to the programme to take into account any changes.  


We've tried the programme twice at home, he still cries through the stretches but I've learnt to ignore them, after all it's for his benefit.


Next weekend is Halloween and boy have we got a great costume this year, but you'll all have to wait for the pictures. What a cruel parent I am.

He was fine, didn't even cry

Short update.


Zack has been to Rainbow Legacy House. It's in Chorley and they do Conductive Education sessions as well as run a fantastic nursery that caters for disabled and non-disabled children. 


The Pants went for an assessment there and whilst he moaned a bit at first by the end of the session he was smiling away. The conductor said that she thinks he would benefit from the sessions, unfortunately there isn't any space at the moment. So we wait.


We also took a look at the nursery which did look good so may be thinking of sending him there for a couple of days so that he can have his conductive education sessions in the morning and afternoons in the nursery. But I don't think this would be until next year and even then very part-time. 


Physiotherapy


He had a good physio session on Monday. Was quite smiley throughout and did a lot of work. The physio then checked him out in his standing frame and adjusted the height. (Must be his new diet making him grow). She also made the frame more upright so that he is having to work harder. Zack didn't mind at all and the physio was impressed at how good he is in his frame. She mentioned that he is holding his neck better which is a good thing. He gets a gold star for that day.


Finally, today his daddy took him for his MMR jab and booster. I am still a wimp when it comes to needles. I was expecting him to come back upset and moaning but no apparently he was fine, didn't even cry. Dan said he smiled after the first injection. That's my boy, tough little cookie. (Am surprised though, as sometimes he can be a right drama queen).

I am still ticking the same yes he can't do that on his own boxes.

First things, Zack baked. 

I ate the cakes! Delicious.

On to more important things.....


Zack and I went to check out some wheels the other day. You see he has a lovely Quinny pram that he doesn't much like any more and a really cheap stroller that he loves but doesn't support him very well. He tends to end up leaning to one side in it, so we prop him up with some rolled up blankets which isn't a good look for such a cool little dude. 


We went to visit the good old NHS Wheelchair Services and after being kept waiting for half an hour we met with two very pleasant physios one who cuddled Zack a lot and told him what lovely hair he had and another who looked through a catalogue (Zack decided he'd do a big spit cough in his face, well you should pay more attention to him.) 


It was decided that a Tom Cross Buggy would be best for Zack. I asked if there was a choice or if I could put some pennies towards one. They advised me that whilst I could as they offer a voucher scheme, it might be best to wait a bit as Zack is still little and growing. I could end up wasting my money on something that might not be of any use to him in a years time. Whereas if they get it for me and he doesn't like it, then I haven't lost any money. Also if anything goes wrong with it then all the repairs are done at the offices. 


Here's a pic of one (scroll down until you get to Tom Cross Stroller), the bits of padding and support can be taken away depending on what the child needs, for instance Zack won't need a middle pummel bit. 




Tom Cross Stroller



We just have to wait for six to eight weeks until it arrives. I am hoping Zack will like it as it will offer him much better support and perhaps mean we can go out for longer walks too.


After that appointment we dashed over to a physio session. All the stretching and rolling about on a gym ball meant that Zack decided to throw up a bit of food on the physio and mat. Well he was doing a lot of lying on his tummy. 


Talking of this puking, the new food we are on is finally going okay. He is still sick but the quantity is a lot less. I have stopped all his reflux meds as they were not making one dot of difference and have finally got an appointment to see the gastroenterologist at Alder Hey. I am hoping we can try something to stop the sickness and to get to the bottom of why it all got so bad after he was ill.




I am having to fill in Zack's Disability Living Allowance form again. We have to do this every year and one year on I am still ticking the same yes he can't do that on his own boxes. If you dwell on the fact that in the eyes of the DLA not much has changed it's pretty depressing reading. But then they don't have boxes for the fact that his vision has improved, his hearing has improved, he smiles and laughs with us, he likes to stand up in his standing frame, he can tell us that he wants us to carry on playing the same game. The form is just interested in the basics, movement, care, illness. Still if it means he can get some financial support that will help towards equipment or therapy then I can fill the form in without sliding into mild depression.


One last thing, Zack has become a right stroppy bum over the past couple of weeks. We can't work out whether its his teeth, his tummy, or if he just wants to be constantly entertained. One things for sure this boy can cry like no other baby. It's almost as though we have been spoilt with a child that's been perfect for a year and half and now he's decided to show us how temperamental children can be. In some ways it's good, it's good that he knows what he wants, it's good that he is becoming so self aware and a little bit frustrated. It's not so good for my ears or my back (he likes to be carried round the house, it's the only thing that will shut him up).


Oh and finally, finally. Zack went to his first wedding at the weekend. He just went to the church bit, where he then fell asleep throughout the service, woke up at the end and then decided to cry all the way to his nan and grandad's house. Still he looked nice. 

I decided not to take him to the whole day that would have just annoyed him even more. There were a lot of young families there and they had their children sat at the table, Zack could have come too if we wanted but it's just a bit tough on your own. Daddy was best man you see. Sometimes I wish it was easier to take him to places on my own and that he could experience things as other children do but what's the use in thinking that it doesn't change the situation. I still have the coolest son ever.........no one can top his hair or his eyelashes or the fact that he always smiles at me in the morning. But most of all I love him just the way he is plus I got to enjoy a lovely meal  without him sat on my knee. 


Here's a pic of him with his daddy.

And one of him working his Amish look...

Until next time so long readers.

The pep talk worked

Zack has a standing frame. I have been pestering our physio for one for a while as it seemed like Zack was enjoying pushing himself up on his legs more and more.


Finally one arrived from a magical place called Stores. I am delighted to say it came in a charming bright yellow colour and clashes beautifully with his wonderful orange sunbeam chair. Why can't manufacturers make special needs equipment in tasteful fabrics do they think everyone's house is painted bright orange (apologies if your house is painted bright orange, but seriously, you should know better.)


Yes, it arrived, it was a bit grubby so I cleaned it up. I went out for a bit. I came back and Dan told me the physio had called to say it should have been delivered to the Child Development Centre and not our house as she wanted to try Zack in it first. She told us not to try him in it and hang on until Monday for our appointment. Okay I thought, I'll wait but it isn't leaving the house. Ever.


Monday came and with it the Physio. We tried Zack in the frame and there he stood, arms out front, head up, looking at his toys. The physio was both impressed and surprised. We tried him on three seperate occasions in the frame and he really liked it. The physio thought he wasn't going to take to it and might get a bit stressed about it all but no he was one happy little boy. Zack got lots of well done comments and clever boy statements, I was very proud. I also knew he would like it. Plus I had a word with him the night before and told him to not let me down, this is a team effort and he needs to put in a bit of work otherwise we aren't going to get to keep our magic yellow standing frame. The pep talk worked.


Will post some pictures of him in it soon. I agreed with the physio that I would just try him in it for five minutes a day so that he can build up his tolerance. The frame will help him to bear weight through his legs, hold his head up and strengthen his back and chest. 


Parents Views


Warrington Council have set up a Parent and Carers forum as part of Aiming High for Children with Disabilities. I went along to one of the forums last night and was astounded at the lack of representation of parents with children who have multiple disabilities. All the parents that came along had children who were autistic or have aspergers and it seems that Warrington is very heavy in this area of disability. Another area I noted was that much of what had taken place so far in discussion or previous forums has centred around children from five upwards, there did not seem to be a lot going on for early years. I have put myself forward to become a parent representative. If the local council have been given a large sum of funding for this area then I want to ensure that at the very least I can be a voice for my child and other parents who have children with profound disabilities and complex needs. 

It would be a good idea for Zack and for myself to have a bit of separation

Zack had his physio this week. He did very well, good head lifting during tummy time and he even moved his head over to the left to look in the mirror. He tends to like his head on the right side so we are trying to encourage movements to all sides including alignment in the centre. He also tried to throw himself over from his front to his side. He would throw his head back a bit to try and shift his weight. His physio was impressed as he was doing this of his own accord rather than due to a muscle spasm.


The Pants also got to have a go of the physio's gym ball. She shifted his weight from right to left whilst he was on it to get him used to correcting his balance. I told her we have one of these gym ball things (bought when I thought it would be of valuable use in my fitness regime that lasted all of two days). She advised me to give it a try and perhaps just steady it against the couch. Hmmmm, little did she know that previously we had been rolling Zack all around on the gym ball. Whaaaaaat? He likes it.




Today we went to visit Zoe's Place in Liverpool. It is a hospice for children with life-limiting conditions as well as complex disabilities. They offer parents respite care for their children aged from birth to five years.


When you hear the word hospice you imagine a sad place with sick children but it isn't like that. They have a fantastic facility that is open 24-7. It has two little bedrooms each with three cots, a fantastic sensory room, a hydrotherapy pool, a massive play room and it's all set within quiet, beautiful grounds.  


I have been thinking of late that it would be a good idea for Zack and for myself to have a bit of separation. It won't be long before he will be able to go to a nursery class a couple of afternoons a week and at the moment I am very nervous about leaving him with anyone other than family. But I know it will do him and myself good to get used to being in situations without each other. I mean lots of people put their children in to nurseries. But I feel so guilty about leaving him, I guess I am extremely protective of him because I see the barriers and difficulties that his disabilities can create. 


Sometimes I feel that I am the only person who understands they way he communicates. I suppose I am though because I spend so much time with him. However, I have to let him try to experience new things without me, perhaps this is another way that may help in his development. 


They gave me an information pack to complete. Effectively it is like a little handbook for Zack. It lists all his likes and dislikes, his way of communicating, his condition, his medications, his typical day. This way they can put together a care assessment for him so that when he does go and spend time there they know exactly what he needs. Every child has a one to one person in the day and at night time the ratio is one person to two babies. I don't think I could ever leave him there overnight. For now I think I will try an afternoon but even the very thought of it makes me feel quite sick. 

I just cannot be arsed with ticking off more boxes for him.

Reflux has been our main concern this week. Zack is still managing to deliver some of his food back to his mouth and it is driving us all crazy. 


It is usually worse during the car journeys. Not sure if the reflux is making him annoyed or he is getting so annoyed it's causing him to reflux. Either way it ain't pleasant. I have heard that some children are so bad that their clothes are changed about twenty times a day. Zack only refluxes a small amount of food after each feed which I guess isn't so bad but you can tell it is getting on his nerves and I am sick of having a permanent tissue shoved in my back pocket. 


I managed to get hold of the Dr. and we discussed (in the waiting room as you do) Zack having some medicine. She mentioned something that helps to empty the stomach a bit quicker. The idea being that some children have a slow digestive system, so the quicker that empties the less likely it is to come back out the other way. Now I am a bit wary to type this but for the past three days Zack has been quite good. Today hardly any reflux and good in his car seat. Not sure if the threat of medication has made him behave or the fact that we are giving him three feeds a day has eased his digestive system. Hoping tomorrow will be a good day too as I am already thinking we may have cracked it.




Today we went along to a local charity group called Families United. They are a lovely group of people and most of them have a child or children with disabilities. The charity holds a fun club for children every other Saturday, go on outings together and have parent get-togethers. It was nice to talk to other people in a similar boat, where everything just feels normal. 


Zack decided he would just monitor the situation. I got a child stuck to my face. Yes a gorgeous little boy ran up, threw his arms round me and stuck his lips to my face. He wasn't for moving. He did eventually but I enjoyed the cuddle. Zack remained unimpressed.


It was also good to hear positive stories about children with special needs and see how much fun they all have. I have added a link to the side of the blog as I think they are a brilliant, worthwhile group.


Zack had his physio this week. Same old same old except with me asking lots of questions about standing frames and lycra suits (a later post I think). The physio mentioned the development journal for children with visual impairments. It is a huge folder with all the milestones broken down into really tiny steps. We already have one I told her and mentioned that it was useful out of politeness. Truth is I hardly look at the bloody thing. Zack is measured and queried so often I just cannot be arsed with ticking off more boxes for him. In fact I almost feel like it's given to parents of children with special needs to make them feel better about the tiny things their children can do. I can be proud of my son without ticking a box so I'd rather not use it. And whilst I am on this rant, if I have any more children I have no interest in red books, milestones or any other flippin' government checklist. What will be, will be. The end. 


Okay rant over. 


Zack also met with the audiologist consultant. I told her how I didn't think there was any difference in his hearing with or without his hearing aids in. She stood behind him and called his name and clapped her hands. He half smiled at me. Even though he didn't turn his head round I knew he could hear her but if you could see the look on his face. I know he was thinking stupid lady, I know you are shouting me but there is no way I can be bothered turning round to look at you, I don't do tricks you know. 


She also tested his fluid in his middle ear. Yep. Still has that, which isn't helping his hearing. If that disappeared it could make a dramatic improvement to his hearing. It can clear up of it's own accord or he could have grommets fitted. As I don't want him to have any operations until he is bigger I am happy to carry on with the hearing aids. The consultant said he was probably hearing more with them in. I did ask why he can now hear more than before, she made some comment about it's probably because he is getting older that things are working a bit better. But that makes no sense to me because I don't think hearing stuff has anything to do with being older. Yet again I'll do what I think is right for him but to be honest I sometimes think all this consultant lark is just guess work.


On a very sad note, Mary, my other beloved baby has gone. Yes, my little Mazda has left the building. For a whole year I managed to keep my claws into her avoiding Dan's threat of "we really need to sell the car you know.' But now we do need a proper car, that can fit a big boy car seat in and after all, as much as I loved Mary she doesn't come close to Zack. Who knows one day she could come back.

maybe tapping his hand is like morse code for him

My telephone stalking gained results. So far we have managed an appointment with Zack's physio, arranged an appointment with the O.T and met our Family Support Officer. 


The physio appointment went well. Zack was awake and alert and she was pleased to see that once relaxed he happily raised his neck to look round the room. Previously Zack used to hunch his shoulders up with a tendency to drop his head forward. He still does this a little but not as much. I told her he is tolerating his tummy time a lot more and even tries to lift his head up. 


We have had a little break-through with Zack's head holding and as much as I would love to say I discovered this trick it was in fact his daddy who worked it all out. Dan was looking after Zack one Saturday afternoon, he had all his toys out on the floor and was trying to encourage him to lift his head up off the mat. He tapped Zack's hand and he suddenly pushed himself up and lifted his head. "Look at this" Dan shouted,


 "oh yeah" I said, "he is lifting his head, he does that for me sometimes." 


"No, watch when I tap his hand, he does it all the time." Sure enough he did. 


I tried it myself today. I had Zack lying on the floor, arms in front he wasn't really trying so I tapped his hand. Tadaaaaaa.....he pushed himself up and lifted his head. Blimey, maybe tapping his hand is like morse code for him. But the even bigger break-through was today, he held is head up for at least a good minute, it was brilliant. I hope he keeps improving with this as then we can work towards crawling. 


We had a visit from the Family Support Officer today, otherwise known as a Social Worker. Most folk would worry about such people calling round to your house but I'll take all the help I can get. We discussed Direct Payments so that I can get extra help and support and I went through the umpteen people that Zack visits. She had already spoken to one of the doctors about Zack which was a bit strange as this doctor only treats him for one area and doesn't know him that well, but then I thought well maybe she just needed some background to his condition. I also had a good moan about the fact that in our area there is no parent support or baby and toddler groups for children with disabilities who fall into the early years category. We also discussed nursery and I told her that I wouldn't be happy with Zack just going into a mainstream nursery as I don't think he would get the one to one support he needs. She asked if I thought he needed one to one support. Well yes I do. It's not like you could pop him into a class and expect him to take on board all that's going on, he needs someone to work with him. Anyway, he isn't going into a nursery and by the time I think he will be ready he may have developed even further. 


Zack and I went to school for the second time. It was brilliant. The little class is so lovely as is his teacher and her assistants. Zack now has his photograph on the picture of the school bus which is on the wall. He was also given his own little bag that has a new hairbrush, toothbrush and face-cloth inside. We then had to get out each item and brush our hair, clean our teeth and wash our face. Well Zack's not got any pegs to clean yet but he did stick his tongue out and brush that. 


We also sang some nursery songs but by that time Zack had fallen asleep so I chose a huge chicken hat for him to wear for when we sang Old McDonald, I think he may have chosen the cow hat but he will fall asleep and leave me in charge of dressing up outfits.


We went on to do stretching and then he woke up just as we were smelling different foods. After that we all sat in a circle and had a snack. Zack had a little bit of a yoghurt but didn't really want it so I ate it for him. Whilst we were waiting he had a look at a fibre optics lamp and then we had art time. Zack painted his very first picture. We used cut up fruit and veg to dip in the paint and press onto the paper. By the end of it Zack had a lovely selection of circles. His picture now has his name and date on it and will probably be on the classroom wall. Then it was home-time, he got given a wonderful sticker and was chosen as best student in the class. Well done little man. The class is really great I understand what they are doing and why they do what they do in each session. It's good that he is experiencing new things and I am also getting new ideas of how to work with him. Never thought I'd say I was looking forward to going to school.

Zack is on his full dose of Vigabatrin. Rather than knock him out he still remains fully alert. He only falls asleep in the day for about half an hour and still goes to bed about 9pm then up at 7am. Seeing small seizures but nothing too huge I don't think as of yet it has stopped his spasms but our EEG is booked for the second week in February so we shall see then. 

Zack smiled and laughed

Zack has been working on his smiles. He does it every day now. Not all the time but a few times a day and it is wonderful. We even had a big break through.

I took Zack for his EEG at Alder Hey. He had finished his steroids the day before and he was having his third EEG done to check whether the hypsarrythmia had stopped. We got taken into the room and the nurse went off to get him some toys. Oh, okay I said thinking well he isn't going to be very interested in them but go on then. She came back with an assortment of noisy toys and I picked up this little clacker toy that when shook made a loud clacking sound. So I nonchalantly waved it in front of Zack's face and there was the biggest grin ever. Well that was it, shake, shake, clack, clack. Followed by oh my God, he loves this, where did you get it, I'll have to get him one. The nurse was kind enough to give us the toy as she thought it was so lovely that he was smiling and obviously loved this new adopted toy. He then proceeded to sleep through his EEG and then off we went to see his Grandad. (Nanny was off on a cruise and wasn't being ignored in case you were wondering). So I told Grandad P. about his new toy and shook it in front of his face......nothing......not interested. He might be hungry I thought, I fed Zack and he seemed a little more content, we tried the toy again. What a response. Zack smiled and laughed. We would shake the toy, wait and then he did this cute little laugh sound and even made some proper baby noises. The other big thing was, he didn't have his hearing aids in, it was fantastic, he continued doing this quite a few times I couldn't wait to come home and show his dad.

I got home, Dan came in, I plonked Zack on his knee, watch this I said. Clack, clack, clack............Zack started crying. Oh. I'll try again. Clack, clack, clack, nope not interested. I explained to Dan what had happened. But from that day on Zack has not reacted to the clacker toy like he did at Grandads. But what he has been doing is finding other things interesting like a jangling bell, rubbing his hands, talking to him. He will smile. Its great and a big step forward.

Other good news for this week was that we went to get his eyes checked out. The optician took a look to see if he needed baby glasses. He doesn't. Everything looked normal. We then went to see the consultant who looked into the back of the eyes and everything looked okay there. She said that we need to continue with stimulating his vision as the development of it may be a bit slow due to his injury but there is nothing wrong with his eyes. At last an appointment that we went too were we haven't come away with bad news.

We are now just waiting on the results of Zack's latest EEG. His seizures have now either been the same in number or slightly less, either way they haven't stopped completely.

Zack had his physiotherapy and did very well. She said that it was the most awake she had seen him and he was very relaxed. He even managed some smiling whilst in tummy time and he hates that. We took a look at his high chair and he promptly displayed his ability to try and escape from it but we agreed to try and sit him in it in short bursts to get him used to the new seating arrangement.

Zack went to his first Christmas party the other day and slept through most of it. The party was organised via some wonderful parents from the forum Special Kids in the UK. They did a great job and it was really good to meet other parents who have children with special needs. It was lovely to see the children enjoying themselves, disability or no disability. Shame Mr Pants slept through most of it but by next year he will be much older and possibly more awake!

He had put on a pound in two weeks

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

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

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

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

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

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!

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.