Aqua Zack is back. I took the Pants swimming today and we had a lovely time. The original baby wetsuit we had bought now seemed somewhat tight on Zack but I managed to velcro him in, eventually. Under this he wore his new swim shorts, Daniel Craig style. I looked less attractive in my swimsuit and tried to forget the image that looked back at me as I checked out my swim-wear in the mirror. I really must stop eating those mini chocolate brownies.
Zack enjoyed his swim. Well enjoyed it as much as he can. He was more bemused, bewildered and yet very, very into it all. I pulled him round on his front through the water and he kept his head up taking in the scenery. I also caught him checking out a little girl that was with her mum. He was looking behind me when I turned round to see a cute little baby in a pink costume. I told him just because he was wearing his Daniel Craig shorts doesn't mean that he's James Bond. We stayed in the pool for a good half hour, I reckon we could have stayed longer but I was getting a bit cold and wrinkly. I think it was fair to say that we both enjoyed our water adventure and shall be returning very soon.
I got a check up call today from the epilepsy nurse. She asked how Zack was getting on with his Vigabatrin. I explained that whilst he seemed more alert he was probably still having a couple of seizures a day so maybe it isn't work. She said that we won't know for sure until he goes for his EEG in a few weeks time, but it could be that this may be the best that we can get to with Zack.
I said that if it hasn't worked we wanted to speak with the neurologist. I also asked why we were going through all this when the original plan was to stop the hypsarrythmia, why are we now accepting that this may be it. I can't really remember the outcome of the conversation but I think I made the point that we want to talk to the person making the decisions rather than the ones just administering the medication. I felt like I had been a bit tough on her as it isn't her fault she is just doing her job but I am not prepared to give in so easily, there has to be more options. If we look at the positives Zack is a lot more alert, he is responding more and tonight I even managed a little conversation with him. Nothing exciting, we didn't chat about Eastenders or the state of the world today, it was more like, helllooooo little man, gggggggghhhhh, ggggghhh, oh did you, gggghhhhh, that's lovely, ggggghhhhhh gaaaahhh. Not very interesting but so exciting for me.
We also had a call from the Family Support worker. She told me that we will be given some Direct Payments for three hours a week. This is great I said and we arranged an appointment for next week. I ended the conversation by saying, okay then, thanks, yeah, love you, bye.
I put the reciever down and immediately thought, oh my God did I just say love you, oh shit, I bloody did, I said love you, noooooooooo. Now I bet she thinks I am a right crazy lady, bloody hell, she will be marking up her social workers chart for crazy ladies!!!! I am hoping by next Wednesday she will have forgotten about it. Oh God. I hope she does forget.
Wednesday, 27 January 2010
Tuesday, 26 January 2010
Zack is trying to take over the world by launching a giant missile from outer space.
Damn you Asda.
You and your cheap little baby offers. I only went to purchase a bumper pack of bargain nappies and ended up coming back with a baby walker, travel cot and sit up cushion seat.
Well, the baby walker was the first thing. I thought, do you know what, I'll get it and see if Zack likes it. After all, it isn't that much and if he doesn't care for it we can always take it back. How wrong I was. The Pants likes, he likes a lot!! It's one of those stroller things you get kiddies for when they are trying to walk so they can push themselves round the room. Zack, can't walk but he really likes the standing up bit. We popped him in it, wiggled his bum back and placed his feet on the floor. At first he dropped his head forward and bent in two. Once we propped him back he held himself upright. He particularly liked the little toy bar that went across the tray as he used it to hold on to. Usually when Zack is introduced to anything new it takes him a while to get used to it but he hasn't had any tears or moaning whilst in his walker. Money well spent.
If Zack were to comment on his sitting cushion he would say, "yeah, it's okay but you know it's not like the walker. I mean, I can sit on the floor an' everything, yeah, that's nice but after a while I end up with my neck leaning too far back so that's no good, plus my dad say's I look like Dr. Evil in it. " This is due to the fact that there is a little tray in front that has a mirror on it with crinkly bits around it, looks a bit like a control panel. Dan does have a point. From a distance it looks like Zack is trying to take over the world by launching a giant missile from outer space.
You and your cheap little baby offers. I only went to purchase a bumper pack of bargain nappies and ended up coming back with a baby walker, travel cot and sit up cushion seat.
Well, the baby walker was the first thing. I thought, do you know what, I'll get it and see if Zack likes it. After all, it isn't that much and if he doesn't care for it we can always take it back. How wrong I was. The Pants likes, he likes a lot!! It's one of those stroller things you get kiddies for when they are trying to walk so they can push themselves round the room. Zack, can't walk but he really likes the standing up bit. We popped him in it, wiggled his bum back and placed his feet on the floor. At first he dropped his head forward and bent in two. Once we propped him back he held himself upright. He particularly liked the little toy bar that went across the tray as he used it to hold on to. Usually when Zack is introduced to anything new it takes him a while to get used to it but he hasn't had any tears or moaning whilst in his walker. Money well spent.
If Zack were to comment on his sitting cushion he would say, "yeah, it's okay but you know it's not like the walker. I mean, I can sit on the floor an' everything, yeah, that's nice but after a while I end up with my neck leaning too far back so that's no good, plus my dad say's I look like Dr. Evil in it. " This is due to the fact that there is a little tray in front that has a mirror on it with crinkly bits around it, looks a bit like a control panel. Dan does have a point. From a distance it looks like Zack is trying to take over the world by launching a giant missile from outer space.
Disability is a strange concept to come to terms with.
Zack went to the dentist the other day. He has no weggies yet so he just sat in the waiting room with his daddy offering moral support to his mummy who was on the verge of running out of the waiting room.
The anticipation of having a broken tooth removed via a cut made into my gum was a little unsetting. However, I remained brave and went and sat in the dentists chair. The dental nurse asked me how old Zack was. Oh, he's nearly one I replied to which she asked if he was walking yet.
Now I could have quite easily said oh no, not yet, but I didn't, instead I said, no he isn't, he has cerebral palsy. When you tell people this the usual reaction is an oh and then nothing.......no questions, just an uncomfortable silence, which I usually fill in with a, but he's doing very well. This is usually to make the other person feel less uncomfortable. The thing is, I wish I could say, look it's okay, you can ask me what you like, don't be frightened about talking about it, it isn't tragic, I'm not going to get upset and most of all I am not disappointed, embarrassed, ashamed or even down about it, which is perhaps why I didn't just leave it at the no he can't quite walk yet answer.
This little incident made me think that now Zack is getting bigger it is becoming more obvious that he is different to other children. You see no-one expects a young baby to be doing much, but now he is nearly one and you tell people his age, you can see them wondering why he isn't sitting up and joining in with the world. And because he looks so (and I am biased) perfect, I can also see them thinking well what's wrong with him, wanting to ask but being too polite to ask.
Sometimes when we are carrying Zack he rests his head on our shoulder as he can't hold it up for a long time. He looks like he is sleeping so we get lots of aaaahs and oooh is he tired? In my head I am saying no he isn't bloody tired he can't lift his head up because he has brain damage and poor muscle control but he is trying his best, now sod off and just carry on with your shopping. In reality I just smile and say mmmmm he must be a little tired.
Disability is a strange concept to come to terms with. It generates so many different feelings, a lot of them negative. People who are not affected by disability in their life I would guess find it uncomfortable. I was one of those people. I used to wonder how parents coped with children with severe disabilities and think I could never do that. I used to think that the people who choose to teach children and adults with special needs were amazing because I couldn't do that. I know differently now. I know the good and the bad. I understand that a lot of it is just fear that holds us back from understanding and fear that holds us back from asking the questions to the things we want to know but are too afraid to ask.
It is the same with family and friends. Some have been fantastic and are very comfortable with everything and are not afraid to ask me or Dan questions about Zack and his condition. Others I know are unsure about whether it's okay to ask about him. To them I would say please don't be afraid to talk to us, he isn't any different to other children, he just has a few special extras. He's just a little boy who wants to experience the world the best he can. But for an hour and half on Monday morning it was in the dental waiting room, asleep, with a mummy who was working on not passing out in the dentist chair.
The anticipation of having a broken tooth removed via a cut made into my gum was a little unsetting. However, I remained brave and went and sat in the dentists chair. The dental nurse asked me how old Zack was. Oh, he's nearly one I replied to which she asked if he was walking yet.
Now I could have quite easily said oh no, not yet, but I didn't, instead I said, no he isn't, he has cerebral palsy. When you tell people this the usual reaction is an oh and then nothing.......no questions, just an uncomfortable silence, which I usually fill in with a, but he's doing very well. This is usually to make the other person feel less uncomfortable. The thing is, I wish I could say, look it's okay, you can ask me what you like, don't be frightened about talking about it, it isn't tragic, I'm not going to get upset and most of all I am not disappointed, embarrassed, ashamed or even down about it, which is perhaps why I didn't just leave it at the no he can't quite walk yet answer.
This little incident made me think that now Zack is getting bigger it is becoming more obvious that he is different to other children. You see no-one expects a young baby to be doing much, but now he is nearly one and you tell people his age, you can see them wondering why he isn't sitting up and joining in with the world. And because he looks so (and I am biased) perfect, I can also see them thinking well what's wrong with him, wanting to ask but being too polite to ask.
Sometimes when we are carrying Zack he rests his head on our shoulder as he can't hold it up for a long time. He looks like he is sleeping so we get lots of aaaahs and oooh is he tired? In my head I am saying no he isn't bloody tired he can't lift his head up because he has brain damage and poor muscle control but he is trying his best, now sod off and just carry on with your shopping. In reality I just smile and say mmmmm he must be a little tired.
Disability is a strange concept to come to terms with. It generates so many different feelings, a lot of them negative. People who are not affected by disability in their life I would guess find it uncomfortable. I was one of those people. I used to wonder how parents coped with children with severe disabilities and think I could never do that. I used to think that the people who choose to teach children and adults with special needs were amazing because I couldn't do that. I know differently now. I know the good and the bad. I understand that a lot of it is just fear that holds us back from understanding and fear that holds us back from asking the questions to the things we want to know but are too afraid to ask.
It is the same with family and friends. Some have been fantastic and are very comfortable with everything and are not afraid to ask me or Dan questions about Zack and his condition. Others I know are unsure about whether it's okay to ask about him. To them I would say please don't be afraid to talk to us, he isn't any different to other children, he just has a few special extras. He's just a little boy who wants to experience the world the best he can. But for an hour and half on Monday morning it was in the dental waiting room, asleep, with a mummy who was working on not passing out in the dentist chair.
Thursday, 21 January 2010
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.
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.
Friday, 8 January 2010
Does three phone calls in a week equal stalking?
(Say this in a Geordie accent). Day 5, Linzi is hitting Zack on the head with a tambourine. Zack is enjoying being tapped on the head with a tambourine. Linzi has full blown cabin fever and did not realise that today was Friday and tomorrow the weekend. Outside is still frozen.
My venture (you can stop reading in a Geordie accent now) into the outside world has meant a meandering stroll down the street. Well, not so much a stroll, more of a sliding my Ugg boots down the lane as though ice skating. Zack knows when he gets taken out for his walk, he sits quietly in his pram, contemplating the numerous ways he can exact some punishment on me in ten years time for making him wear a pumpkin outfit, elf outfit and blow drying his hair into a quiff. I know when it's time to turn back by the colour of Zack's nose tip, a pale shade of pink usually means it's time to return home. Although I am hating the snow and frozen road, it is beautiful here. Everything is so quiet and peaceful, only disturbed as you gaze out of the back window at the cat eating a captured bird in two bites. (This consumption was also followed by a large rat being left by the garage door).
So what's a girl to do when housebound......phone up and harrass people of course. Yes. I have been chasing the Speech Therapist. Does three phone calls in a week equal stalking? I still haven't found out when Zack's next appointment is, in fact, either no-one at the hospital has seen the woman or she is avoiding me. One hopes it is not the latter.
I also telephoned Social Services about getting Direct Payments. These I think can be used to gain support and help when caring for someone with a disability. Bingo. I was in luck, a lovely girl phoned me today. I think my over-eager telephone manner gave away my mental state of being house-bound. She apologised for not being able to come round due to the snow etc. Apologise, don't apologise you called me, why we are practically best friends. We had a nice chat about the weather and how we both agreed it was better for it all to thaw out before she came for a visit, I mean I am more concerned about her safety than sorting Zack and I out. I told her all about how I used to work at St Helens College (she lived in St Helens), my whole life story in fact. Just kidding, I'll save that for when she visits, mwahahaha! She suggested that perhaps we can get me a Personal Assistant. Long Pause. A Personal excuse me....thoughts ran through my head of some young girl running round getting me faxes, picking up dry cleaning and answering the phone. No that can't be right, this isn't The Devil Wears Prada. She continued "you know someone to help you with Zack."
"Ohhhhhh, well I'm okay with him I could do with some help around the house you see."
" Oh, right, yes that's fine. What I'll do I'll bring all the information with me when I come and visit, after it's all thawed out."
"Okay, after it's all thawed out."
So I expect to see her in June.
I brought all of Zack's toys downstairs today. We had it all drums, maracas, tambourine, books, wrist toys the whole shahbang. As a special Christmas present I had made Zack a Sensory Book so he could touch and feel lots of different textures. When Dan come in tonight we were just putting things away when he picked up the book.
"Aaaaaah, look you've even written a little story for each picture"
I had. I was very creative.
"Aaaaah Honeycomb....but no busy bee. Fly to the moon space boy. Oh, no. Dinosaurs in your book."
He continued flicking.
"A patch of leather. Christmas tinsel. A shiny disk." He looked at me and his face said it all.
I realised that I had become less creative as it got nearer to Christmas. And to be honest, after wrapping up 45 presents it's hard to think of some witty story to go with a patch of leather.
Right back to the telephone book.......ooooh cold weather payments, not seen them yet, who do I speak to about that.
My venture (you can stop reading in a Geordie accent now) into the outside world has meant a meandering stroll down the street. Well, not so much a stroll, more of a sliding my Ugg boots down the lane as though ice skating. Zack knows when he gets taken out for his walk, he sits quietly in his pram, contemplating the numerous ways he can exact some punishment on me in ten years time for making him wear a pumpkin outfit, elf outfit and blow drying his hair into a quiff. I know when it's time to turn back by the colour of Zack's nose tip, a pale shade of pink usually means it's time to return home. Although I am hating the snow and frozen road, it is beautiful here. Everything is so quiet and peaceful, only disturbed as you gaze out of the back window at the cat eating a captured bird in two bites. (This consumption was also followed by a large rat being left by the garage door).
So what's a girl to do when housebound......phone up and harrass people of course. Yes. I have been chasing the Speech Therapist. Does three phone calls in a week equal stalking? I still haven't found out when Zack's next appointment is, in fact, either no-one at the hospital has seen the woman or she is avoiding me. One hopes it is not the latter.
I also telephoned Social Services about getting Direct Payments. These I think can be used to gain support and help when caring for someone with a disability. Bingo. I was in luck, a lovely girl phoned me today. I think my over-eager telephone manner gave away my mental state of being house-bound. She apologised for not being able to come round due to the snow etc. Apologise, don't apologise you called me, why we are practically best friends. We had a nice chat about the weather and how we both agreed it was better for it all to thaw out before she came for a visit, I mean I am more concerned about her safety than sorting Zack and I out. I told her all about how I used to work at St Helens College (she lived in St Helens), my whole life story in fact. Just kidding, I'll save that for when she visits, mwahahaha! She suggested that perhaps we can get me a Personal Assistant. Long Pause. A Personal excuse me....thoughts ran through my head of some young girl running round getting me faxes, picking up dry cleaning and answering the phone. No that can't be right, this isn't The Devil Wears Prada. She continued "you know someone to help you with Zack."
"Ohhhhhh, well I'm okay with him I could do with some help around the house you see."
" Oh, right, yes that's fine. What I'll do I'll bring all the information with me when I come and visit, after it's all thawed out."
"Okay, after it's all thawed out."
So I expect to see her in June.
I brought all of Zack's toys downstairs today. We had it all drums, maracas, tambourine, books, wrist toys the whole shahbang. As a special Christmas present I had made Zack a Sensory Book so he could touch and feel lots of different textures. When Dan come in tonight we were just putting things away when he picked up the book.
"Aaaaaah, look you've even written a little story for each picture"
I had. I was very creative.
"Aaaaah Honeycomb....but no busy bee. Fly to the moon space boy. Oh, no. Dinosaurs in your book."
He continued flicking.
"A patch of leather. Christmas tinsel. A shiny disk." He looked at me and his face said it all.
I realised that I had become less creative as it got nearer to Christmas. And to be honest, after wrapping up 45 presents it's hard to think of some witty story to go with a patch of leather.
Right back to the telephone book.......ooooh cold weather payments, not seen them yet, who do I speak to about that.
Thursday, 7 January 2010
New Pictures
Is it Christmas Day?
Check it out I is in me chair.
Look at my toys...I have doggy, octopus, wriggly thing, so many toys!
He wasn't for building a snowman though.
It snowed. Zack and I have cabin fever. Well I have, Zack quite likes the warm as do the cats who have developed an inability to go outside in the snow. One in particular, Willis, does the best impression of an RSPCA advert that if I didn't bring him inside the neighbours would think he was suffering abuse. He sits outside in the snow holding one paw up and shivering, he had only been out for 30 seconds!
Zack and I marched up the garden when it was snowing. The Pants liked it, probably because the whiteness made everything so bright. He didn't mind the snowflakes falling on his face and did his best at keeping his head upright to take it all in. He wasn't for building a snowman though. No, back into the warmth to play with his new favourite toy, Mr Dog.
I showed Dan how much he liked his doggy toy and how he smiled at it when he made his barking noise. I overheard Dan asking Zack if he liked it and then saying this doesn't mean you are going to get a real dog you know. Dammit.......I thought I had sneakily found a way of getting a Puggle. Zack and I will have to work out a new plan.
School phoned up to tell us that they were closed because of the snow. This made me giggle, not because they were closed just because Zack's school had phoned up.....he's only 11 months old!! We shall go next week though.
We have started Zack on his Vigabatrin. So far so good. But it is only a small amount so we will have to wait and see what happens when we increase it next week. His seizures have not been very many about two to three a day and when he does have them they are quite subtle.
I can't believe that he will soon be one. When you take stock of what has happened to him you can see how very far behind he is compared to other children. When I think about this it makes me sad but then Dan reminds me of all the things he is doing, things we didn't think he would ever do. For example he without doubt knows both of us. Probably me more than Dan but then that's because I am lucky to spend more time with him. I think, but can't be sure, he is starting to understand his name. It may just be my voice but he will look at me when I call his name. We didn't ever think he would smile or laugh and he does. He shows pleasure in things and shows interest and enjoyment, it is subtle but you can tell the difference. He is sitting up on your knee and can sit there whilst you support his lower back. He doesn't cry at tummy time any more and sometimes manages to push himself up. So I suppose whilst these are small things they are good steps forward.
I am also starting to realise that whilst some areas of the NHS are good there are others that are not so good and you don't always get the help and support you need. Sometimes it is assumed that Zack is similar to other children and you end up getting grouped as one. This is no good. Not all children are the same and I wish that they would try and consider the individual rather than the masses. I could go on but I don't want to turn into a rant.
Zack and I marched up the garden when it was snowing. The Pants liked it, probably because the whiteness made everything so bright. He didn't mind the snowflakes falling on his face and did his best at keeping his head upright to take it all in. He wasn't for building a snowman though. No, back into the warmth to play with his new favourite toy, Mr Dog.
I showed Dan how much he liked his doggy toy and how he smiled at it when he made his barking noise. I overheard Dan asking Zack if he liked it and then saying this doesn't mean you are going to get a real dog you know. Dammit.......I thought I had sneakily found a way of getting a Puggle. Zack and I will have to work out a new plan.
School phoned up to tell us that they were closed because of the snow. This made me giggle, not because they were closed just because Zack's school had phoned up.....he's only 11 months old!! We shall go next week though.
We have started Zack on his Vigabatrin. So far so good. But it is only a small amount so we will have to wait and see what happens when we increase it next week. His seizures have not been very many about two to three a day and when he does have them they are quite subtle.
I can't believe that he will soon be one. When you take stock of what has happened to him you can see how very far behind he is compared to other children. When I think about this it makes me sad but then Dan reminds me of all the things he is doing, things we didn't think he would ever do. For example he without doubt knows both of us. Probably me more than Dan but then that's because I am lucky to spend more time with him. I think, but can't be sure, he is starting to understand his name. It may just be my voice but he will look at me when I call his name. We didn't ever think he would smile or laugh and he does. He shows pleasure in things and shows interest and enjoyment, it is subtle but you can tell the difference. He is sitting up on your knee and can sit there whilst you support his lower back. He doesn't cry at tummy time any more and sometimes manages to push himself up. So I suppose whilst these are small things they are good steps forward.
I am also starting to realise that whilst some areas of the NHS are good there are others that are not so good and you don't always get the help and support you need. Sometimes it is assumed that Zack is similar to other children and you end up getting grouped as one. This is no good. Not all children are the same and I wish that they would try and consider the individual rather than the masses. I could go on but I don't want to turn into a rant.
Wednesday, 30 December 2009
all of sudden big smile and a gggghhhhhhhh
We think Zack enjoyed his first Christmas, well, we think as much as guess he enjoyed it. One thing is for sure he got spoilt rotten. I have never seen so many presents, of which, I obviously had to unwrap for him. It was never-ending, so much so I got a sweat on, Zack on the other hand had his usual I am totally not bothered about any of this look on his face. We had all just about got dressed and sorted out when Grandma and Grandad Gould visited along with Great Granny Fairhurst. This meant more presents. After an hour of more treats we went off to Nanny and Grandad Price as we were having our Christmas lunch with them. Well you can't expect me to cook, I have a young child now. Plus I would never have gotten round to the cooking given the amount of unwrapping I had to complete. We had a lovely meal and Zack was very well behaved, graciously having a nod in his bouncy chair whilst we ate.
On Boxing Day we decided to brave the sales at stupid o'clock in the morning. I know how very sad. Zack thought the whole thing was amusing and spent the morning asleep and then awake smiling at the Christmas lights. Or he could have been smiling at the fact that there was a mile long queue of people trying to get into baby Next. Now that is ridiculous. And no, I did not queue.
In the afternoon we went to Nan and Grandad Gould for more eating. Again Zack was very well behaved and even cracked a few smiles here and there. Unfortunately his Grandad missed them but his Great Granny got three.
The rest of Christmas has been a bit of a blur but it has been lovely having the three of us at home and not having to go to one single appointment. It made me realise that I am definitely not going to do more than two a week. At the very most I only want one a week so come the new year, the foot will go down firmly.
We had some more laughing from Zack. Today in fact. Dan was on his way out in the morning and said that Zack wasn't giving him any smiles when all of sudden big smile and a gggghhhhhhhh. Oh. So I started to rub Zack's hand again (it's a new thing we found he likes) more ggggghhhh so I shouted for Dan and he actually heard and saw the laugh. Zack laughed quite a few times and I am so glad Dan caught it. Here's to lots more giggles in the New Year.
Thursday, 24 December 2009
Merry Christmas
Ho! Ho! Ho! Merry Christmas everyone Zack is enjoying two weeks free of appointments with me and his dad, but we did have time to post these pictures of the Santa's Little Helper.
Sunday, 20 December 2009
the steroids did not work
The smiling still continues. It continues at 3.30am in the morning when Zack woke up and thought it would be nice to smile at his mum in bed. Not daddy though. Just mummy. Who now spends most of her time entertaining him with loud shouting, bad singing and rubbing of arms and legs only because this gets the most smiles and every one of them still amazes me.
After our good news we had some bad news. The last EEG that Zack took showed no change, if only minimal, to the hypsarrhythmia in his brain. This meant that the steroids did not work. I said that. I knew from the beginning they weren't working so the next line of attack is a to try the next drug, Vigabatrin.
We went to see the doctor to discuss this medication and Zack's treatment. Apparently steroids are the first drug of choice in treating infantile spasms, followed by Vigabatrin. Due to infantile spasms being so uncommon in children not many studies have been done in the use of medication and the ones that have showed that those two drugs seem to work the best. The steroids however, did not work for Zack.
It is with huge disappointment that we are having to give Zack this drug. As well as making him sedated for the first couple of weeks another side effect is that it can damage the peripheral vision to his eyes. This is has only happened in a small percentage of children and it is thought that it happens usually when children are on the drug long term. So the plan is to give Zack this drug for six months. Hopefully this won't affect his vision. We have had to way up the chance of allowing Zack to develop to the best of his ability against the possibility of losing some of his sight. It is a hard decision but as Dan has said we don't know how good his vision is so if this drug works it could increase his vision and his ability to do other things.
To be honest I don't feel like I have a choice, I can't leave him as he is without trying to stop the infantile spasms. Whilst the actual visual spasms we see have greatly reduced his brain is constantly fitting because of the hypsarrhythmia, this in itself is making it harder for him to understand or do anything so we have to give him a chance. If this drug doesn't work then we may be looking at steroid injections and after that well, I don't know. I pray and hope every day that something will work, deep down I have a good feeling that we will get there, eventually.
We have decided to start the new drug after Christmas. I just want to have a couple of weeks without new drugs, appointments and worry, plus it isn't going to be much fun for Zack if he is sedated for two weeks. So come the new year, come the new drugs and fingers crossed more good fortune for Zack.
Monday, 14 December 2009
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