We are here. I just haven't had five minutes to myself to write about our crazy, busy life.
Quick synopsis, Zack is good, Scarlett, good, Dan good, me working on cloning myself so that I have more time.
I will update soon. Promise. Stay with me.
Friday, 5 December 2014
Sunday, 21 September 2014
Where else would you want to go?
Having completed two half days and a very good full day, Zack went to school for two hours last Tuesday morning before I get a call to collect him as he wasn't very happy.
Yet again, we are met with a suspected chest infection, another course of antibiotics and a Pants that is coughing up a load of nast and updating his seizure numbers to a higher frequency.
Talking of seizures we have now increased medicine two and so far it has made not one dot of difference. This could be because he is ill which means we do the waiting game and see if things improve.
However we just cannot get him right at the moment. Fingers crossed he improves in the coming days. Don't get me wrong he is still very happy and laughing a lot but I am sure he is thinking that he is now much too cool for school and is attempting the world record of a home staycation.
Talking of staycations, I must share our photos of our brilliant holiday in the UK. We stopped at Cornwall for a few days before travelling to North Devon for the Great British seaside extravaganza.
The first spot we stayed in was, how can I put this politely, well, imagine what an old granny's cottage might look like in the 1970's, you know the one that has a few dogs, is a bit lapse with here personal hygiene. You get the picture? We stayed one night before I complained to the owner who moved us into a much nicer cottage. By the way prior to this move, he offered me a £25 voucher to use at the local pub. Nice try.
Cornwall was good, we visited Padstow, had some fish and chips from Rick Steins posh chip shop, (rip off price) but it was delicious.
Oh, Padstow, that reminds me. A short tale of disability discrimination. Too long for this post I shall tell you in the next one.
We also visited Port Isaac, bit boring I thought. Very pretty, lots of expensive shops to tear the money out of hands of middle class tourists but pretty. Meh. That would be my final comment.
Before we drove up to North Devon we stopped at the Eden Project. We've been before and it is good, but the thing that impresses me most every time is the Changing Places bathroom. A proper disabled toilet with a changing bed that goes up and down, even showering facilities. Amazing, it makes all the difference.
North Devon. We booked an apartment in Westward Ho and oh yes, it was fabulous daaarlings. Loads of space and a hot tub on the roof garden. We had floor to ceiling windows that overlooked the atlantic ocean. My motto for the week we stayed was "Where else would you want to go when you have Westward Ho." (You can have that for free Westward Ho tourism marketing people, actually forget that if you use it I'm suing, but feel free to offer me some monetary value).
Ok, it's only a little seaside village and some of it is a bit chavy, but there are some good restaurants and Zack loved his hot tub plus in our en-suite there was a whirlpool bath with lights which he was even more impressed with. I swear we have both never been so clean, by skin was beginning to shine by the end of the week.
Scarlett was addicted to the beach and I'm sure as the day's wore on she was morphing into a diddy surfing chick. The whole atmosphere was relaxed and easy going, what also got me was that nobody batted an eyelid about Zack. Usually you get the staring, the really rude staring but here people just looked smiled (not the pity smile), some people would come and say hello and chat to Zacky like he was just an ordinary little boy (which is exactly how we see him). It was a refreshing change. I was hoping I would get left behind in the Penthouse with the 55 inch 3D tv and full sky package. Alas it was not to be.
Here are some pictures. Aaaaaah good times.
Yet again, we are met with a suspected chest infection, another course of antibiotics and a Pants that is coughing up a load of nast and updating his seizure numbers to a higher frequency.
Talking of seizures we have now increased medicine two and so far it has made not one dot of difference. This could be because he is ill which means we do the waiting game and see if things improve.
However we just cannot get him right at the moment. Fingers crossed he improves in the coming days. Don't get me wrong he is still very happy and laughing a lot but I am sure he is thinking that he is now much too cool for school and is attempting the world record of a home staycation.
Talking of staycations, I must share our photos of our brilliant holiday in the UK. We stopped at Cornwall for a few days before travelling to North Devon for the Great British seaside extravaganza.
The first spot we stayed in was, how can I put this politely, well, imagine what an old granny's cottage might look like in the 1970's, you know the one that has a few dogs, is a bit lapse with here personal hygiene. You get the picture? We stayed one night before I complained to the owner who moved us into a much nicer cottage. By the way prior to this move, he offered me a £25 voucher to use at the local pub. Nice try.
Cornwall was good, we visited Padstow, had some fish and chips from Rick Steins posh chip shop, (rip off price) but it was delicious.
Oh, Padstow, that reminds me. A short tale of disability discrimination. Too long for this post I shall tell you in the next one.
We also visited Port Isaac, bit boring I thought. Very pretty, lots of expensive shops to tear the money out of hands of middle class tourists but pretty. Meh. That would be my final comment.
Before we drove up to North Devon we stopped at the Eden Project. We've been before and it is good, but the thing that impresses me most every time is the Changing Places bathroom. A proper disabled toilet with a changing bed that goes up and down, even showering facilities. Amazing, it makes all the difference.
North Devon. We booked an apartment in Westward Ho and oh yes, it was fabulous daaarlings. Loads of space and a hot tub on the roof garden. We had floor to ceiling windows that overlooked the atlantic ocean. My motto for the week we stayed was "Where else would you want to go when you have Westward Ho." (You can have that for free Westward Ho tourism marketing people, actually forget that if you use it I'm suing, but feel free to offer me some monetary value).
Ok, it's only a little seaside village and some of it is a bit chavy, but there are some good restaurants and Zack loved his hot tub plus in our en-suite there was a whirlpool bath with lights which he was even more impressed with. I swear we have both never been so clean, by skin was beginning to shine by the end of the week.
Scarlett was addicted to the beach and I'm sure as the day's wore on she was morphing into a diddy surfing chick. The whole atmosphere was relaxed and easy going, what also got me was that nobody batted an eyelid about Zack. Usually you get the staring, the really rude staring but here people just looked smiled (not the pity smile), some people would come and say hello and chat to Zacky like he was just an ordinary little boy (which is exactly how we see him). It was a refreshing change. I was hoping I would get left behind in the Penthouse with the 55 inch 3D tv and full sky package. Alas it was not to be.
Here are some pictures. Aaaaaah good times.
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| I'm telling you mum Rick Stein better bring me my Scampi and Chips soon or else I'll go in there and cook it myself. Understood. |
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| Aaaaaaah beer, it makes me so funny. |
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| Swift drink of the rough stuff before I start. Actually he was very good. |
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| Told you we loved the toilet at Eden Project, though it does like Scarlett and I are in desperate need of the loo. |
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| I love my hot tub. |
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| Yes I do. |
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| You know, just chillaxing, |
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| The view from our window. |
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| Again, where else would you want to go? |
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| There was a sweet shop underneath the apartment, never give three year olds free choice. |
Thursday, 11 September 2014
Keep a watch on it
You know that botox stuff? Turns out it's quite good. Normal service has resumed for Zack. Back to full on lying across me cuddles, back to standing frame, back to straighter leg (not entirely straight but much better) and back to school.
School. A new class and what's more, a new school. Kind of. The old school that he was in has moved to a new site which is lovely except for the parking facilities and the fact that it is absolutely crazy in morning.
I went in with my usual million and one concerns, Zack went in and proceeded to sulk nor speak to anyone. He has started back with two half days. Today's half day he came out looking shattered but apparently had a great morning. I am hoping this continues.
His epilepsy remains difficult. He is still having bouts of seizures, one day they are not lasting as long the next he is having longer sessions but less of the amount of clusters. We continue to keep a watch on it and I have found a great app on the Epilepsy Society website that you can use to keep a diary of seizure activity.
I hope his leg remains well but who knows. When the botox wears off it could go back to how it was or remain normal again. I am hoping for the latter.
School. A new class and what's more, a new school. Kind of. The old school that he was in has moved to a new site which is lovely except for the parking facilities and the fact that it is absolutely crazy in morning.
I went in with my usual million and one concerns, Zack went in and proceeded to sulk nor speak to anyone. He has started back with two half days. Today's half day he came out looking shattered but apparently had a great morning. I am hoping this continues.
His epilepsy remains difficult. He is still having bouts of seizures, one day they are not lasting as long the next he is having longer sessions but less of the amount of clusters. We continue to keep a watch on it and I have found a great app on the Epilepsy Society website that you can use to keep a diary of seizure activity.
I hope his leg remains well but who knows. When the botox wears off it could go back to how it was or remain normal again. I am hoping for the latter.
Sunday, 24 August 2014
Donations
I just want to put a quick post up to say thank you to all of our friends and family who kindly made a donation following my Mother's funeral.
We had agreed that the money should go to a cause that was important to my Mum and so we picked Cerebra, a charity dedicated to helping children and their families with disabilities. I know from experience how helpful Cerebra has been in providing us with vouchers towards much needed speech therapy. Most recently they have developed the Go 2 Seat, an invention that Zacky tested out and has helped many families just do normal things like the supermarket shopping. A brilliant and growing charity that deserves some more recognition.
The generous donations reached well over £1000 and to that we are very grateful.
Here is a link to an article which featured within Cerebra's news page.
http://www.cerebra.org.uk/news/Pages/InmemoryofBarbaraPrice.aspx
Thank you everyone, I know my mum would have been delighted.
We had agreed that the money should go to a cause that was important to my Mum and so we picked Cerebra, a charity dedicated to helping children and their families with disabilities. I know from experience how helpful Cerebra has been in providing us with vouchers towards much needed speech therapy. Most recently they have developed the Go 2 Seat, an invention that Zacky tested out and has helped many families just do normal things like the supermarket shopping. A brilliant and growing charity that deserves some more recognition.
The generous donations reached well over £1000 and to that we are very grateful.
Here is a link to an article which featured within Cerebra's news page.
http://www.cerebra.org.uk/news/Pages/InmemoryofBarbaraPrice.aspx
Thank you everyone, I know my mum would have been delighted.
Saturday, 23 August 2014
Bent leg
As I currently type this I have a little boy taking a nap on my bed having yesterday been under general anaesthetic for a leg that would not bend.
For over two weeks Zack would not bend his left leg he kept it guarded and whenever we tried to lower it he would cry, great sobs and howls. Zack is a tough little guy, he can tolerate quite a bit of pain so I know whatever the problem, it was serious.
Thanks to a great consultant and team at Alder Hey we managed to get in for some botox treatment to help alleviate the pain of his bad leg. Whilst the problem does not seem to be hip related as is common in children with cerebral palsy, the consultant is almost convinced it is muscle related.
Zack now seems more comfortable, so God knows what pain he was in before. He is still white as a sheet and won't straighten his leg entirely but it is an improvement.
Following on from the leg problem, Zack has introduced Dystonic movements to his bag of tricks. What this essentially means is his other good leg will all of a sudden go straight out in front of him, and his two arms would straighten across his body and he would be stuck. Stuck in a muscle protest that he can't control. It's horrible to see and awful to know it is causing him discomfort. We have been prescribed Diazepam to treat them, so far we only give it him at night, which essentially knocks him out fast asleep. Giving us all some respite.
I can't believe how difficult this year is becoming. I thought this was going to be a great year, a happier, easier year but it is turning into our year of hell.
I try to be upbeat in this blog but equally I would be lying if I didn't also tell the truth of how dark things can get sometimes. I know that everything is relative to all people but when I hear parents complaining that their child has had a cold or a tummy ache I just think you have no idea. No clue, how easy it is for you.
In fact the differences in our life and that of a 'normal' family become ever so clear when you have those friends over. They try to get it, they try to show the right amount of sympathy understanding but they are so far from understanding. I think some of them just see the downright awfulness of the situation. They don't see all the good bits with Zack. That's very annoying. Equally its such a relief that I have friends in a similar position that understand all the difficulties and stress that comes with our children. And when they nod their heads in agreement it isn't with an 'aaaah yes it must be awful' smile but a 'shit yes, it's bloody hard but you'll make it through' nod.
Truth is, sometimes I wonder how we will make it through this tunnel.
For over two weeks Zack would not bend his left leg he kept it guarded and whenever we tried to lower it he would cry, great sobs and howls. Zack is a tough little guy, he can tolerate quite a bit of pain so I know whatever the problem, it was serious.
Thanks to a great consultant and team at Alder Hey we managed to get in for some botox treatment to help alleviate the pain of his bad leg. Whilst the problem does not seem to be hip related as is common in children with cerebral palsy, the consultant is almost convinced it is muscle related.
Zack now seems more comfortable, so God knows what pain he was in before. He is still white as a sheet and won't straighten his leg entirely but it is an improvement.
Following on from the leg problem, Zack has introduced Dystonic movements to his bag of tricks. What this essentially means is his other good leg will all of a sudden go straight out in front of him, and his two arms would straighten across his body and he would be stuck. Stuck in a muscle protest that he can't control. It's horrible to see and awful to know it is causing him discomfort. We have been prescribed Diazepam to treat them, so far we only give it him at night, which essentially knocks him out fast asleep. Giving us all some respite.
I can't believe how difficult this year is becoming. I thought this was going to be a great year, a happier, easier year but it is turning into our year of hell.
I try to be upbeat in this blog but equally I would be lying if I didn't also tell the truth of how dark things can get sometimes. I know that everything is relative to all people but when I hear parents complaining that their child has had a cold or a tummy ache I just think you have no idea. No clue, how easy it is for you.
In fact the differences in our life and that of a 'normal' family become ever so clear when you have those friends over. They try to get it, they try to show the right amount of sympathy understanding but they are so far from understanding. I think some of them just see the downright awfulness of the situation. They don't see all the good bits with Zack. That's very annoying. Equally its such a relief that I have friends in a similar position that understand all the difficulties and stress that comes with our children. And when they nod their heads in agreement it isn't with an 'aaaah yes it must be awful' smile but a 'shit yes, it's bloody hard but you'll make it through' nod.
Truth is, sometimes I wonder how we will make it through this tunnel.
Wednesday, 30 July 2014
Zero
Do you ever get the feeling you are getting left behind a little? Abandoned perhaps?
I do. Especially with the NHS. God love them, sometimes they are fantastic but 75% of the time they are just useless.
When Zack was a baby we were never out of the doctors office, it was appointment after appointment. Now, he is school age it seems the importance or urgency to treat him has lessened.
I shall give you an example, Zack has not had physiotherapy at school or at home for months. The physiotherapist left so now there is only one covering the whole of our area. Therefore my son receives zero physiotherapy. This has been going on since around May.
Example two, we have been trying to get a sleep study organised at home for the past two months. We have just organised and completed that study over the last two days and this was only due to an irritated phone call and threats of letters of complaint.
Example three, and perhaps the toughest situation, is that Zack's epilepsy is not under control. We did have a blip for a week whereby he went to having no seizures but now we are back to the old school of single dipity doos rather than clusters. As we are between consultants appointments are not very forthcoming, I mean seriously how long do you have to wait for a second opinion?
You can probably guess from this post that I am none too happy with how things are progressing. Is this the future? Is this the future for Zack as he gets older?
I remember talking to a mum of an adult who was twenty years old and he had severe special needs. I asked her what were the services like in adulthood. Rubbish, she replied, you get nothing, it all filters out.
Does this mean that babies with special needs deserve our attention and services more than the growing child? Is it assumed that as a child makes no progress they do not need further support and help?
I hope not, because to me that is a society that gives up and that is something that doesn't happen in this house.
Sincerely pissed off with the NHS. Sort. It. Out.
I do. Especially with the NHS. God love them, sometimes they are fantastic but 75% of the time they are just useless.
When Zack was a baby we were never out of the doctors office, it was appointment after appointment. Now, he is school age it seems the importance or urgency to treat him has lessened.
I shall give you an example, Zack has not had physiotherapy at school or at home for months. The physiotherapist left so now there is only one covering the whole of our area. Therefore my son receives zero physiotherapy. This has been going on since around May.
Example two, we have been trying to get a sleep study organised at home for the past two months. We have just organised and completed that study over the last two days and this was only due to an irritated phone call and threats of letters of complaint.
Example three, and perhaps the toughest situation, is that Zack's epilepsy is not under control. We did have a blip for a week whereby he went to having no seizures but now we are back to the old school of single dipity doos rather than clusters. As we are between consultants appointments are not very forthcoming, I mean seriously how long do you have to wait for a second opinion?
You can probably guess from this post that I am none too happy with how things are progressing. Is this the future? Is this the future for Zack as he gets older?
I remember talking to a mum of an adult who was twenty years old and he had severe special needs. I asked her what were the services like in adulthood. Rubbish, she replied, you get nothing, it all filters out.
Does this mean that babies with special needs deserve our attention and services more than the growing child? Is it assumed that as a child makes no progress they do not need further support and help?
I hope not, because to me that is a society that gives up and that is something that doesn't happen in this house.
Sincerely pissed off with the NHS. Sort. It. Out.
Monday, 14 July 2014
Nanny Barbara
I haven't blogged for a while because over a month ago tragedy struck. My mother, Zack's Nanny Barbara, died suddenly from a heart attack on the 5th June.
Such monumental news hit me side on the face and took my legs from under me.
Zack was lucky to have known his nanny Barbara, she worshipped that little boy. She would come in to the house pick him up and just cuddle him, smothering him with kisses. I used to joke with her that if she looked after Zack constantly then he would get nothing done because all she would do was cuddle him.
As you can imagine the grief has been both shocking and devastating. I miss my mum. I miss phoning her to tell her about the small little achievements Zack has made or about the ridiculous appointment I've just been too.
In my heart I know she will always be with us and I always feel her nearby. I wish she was still with us but I take comfort knowing that Zack will have an Angel watching him. I'm sorry I cannot write any more, I just don't have the words.
In memory of my Mother, Nanny Barbara. We love you. We miss you.
Such monumental news hit me side on the face and took my legs from under me.
Zack was lucky to have known his nanny Barbara, she worshipped that little boy. She would come in to the house pick him up and just cuddle him, smothering him with kisses. I used to joke with her that if she looked after Zack constantly then he would get nothing done because all she would do was cuddle him.
As you can imagine the grief has been both shocking and devastating. I miss my mum. I miss phoning her to tell her about the small little achievements Zack has made or about the ridiculous appointment I've just been too.
In my heart I know she will always be with us and I always feel her nearby. I wish she was still with us but I take comfort knowing that Zack will have an Angel watching him. I'm sorry I cannot write any more, I just don't have the words.
In memory of my Mother, Nanny Barbara. We love you. We miss you.
Tuesday, 3 June 2014
Sulky chops
Oh did I say they weren't seizures, oh, hang on, no, they are most likely to be seizure related.
Huh?
Yeah, huh?
We went to see Zack's neurologist who explained that what Zack is doing is more likely to be related to his seizures and should be treated as though it his epilepsy rather than a movement disorder. Oh for goodness sake......
Whilst we were given the correct information that the episodes Zack was having during the EEG did not show a spike in electrical activity it doesn't account for what could be happening deeper down within the brain.
What I read is this. We haven't got a clue what he is doing or why, so we will just try the usual path of drugs and if that doesn't work...well, thank God we haven't got there yet.
On a positive note, he isn't having as many episodes, they are getting lighter. The plan is now to wait 7 to 10 days and see if everything goes back to normal. If it doesn't then I think we may be introducing a new drug. Great.
And with that news, Zack went back to school on Monday. I was my usual concerned self as I left him in the very capable hands of team school, but I was worried about him all day. I needn't have been concerned, as sulky chops (yes, he wouldn't even look at me when I dropped him off) was very happy and had a great day. Oh, and only one of his seizure (non seizure, what the hell is it) episode.
Brilliant. He decided on the way home, to provide both Scarlett and I with an example of all the little seizures he had saved up whilst being at school. Little git.
It's good to have him back to almost normal. Lots of laughing, smiles and chats. He is now getting particularly good at saying hello. I must record that to play on here at some point.
Started a new bedtime routine tonight. It goes like this. He gets put in his bed, I get in with him. We have two stories, then night, night, I leave. He had about 20 minutes of tantrum. It's gone quiet now. I must go and check, hopefully he is okay and fast asleep. And I hope the cat hasn't sneaked in.
Huh?
Yeah, huh?
We went to see Zack's neurologist who explained that what Zack is doing is more likely to be related to his seizures and should be treated as though it his epilepsy rather than a movement disorder. Oh for goodness sake......
Whilst we were given the correct information that the episodes Zack was having during the EEG did not show a spike in electrical activity it doesn't account for what could be happening deeper down within the brain.
What I read is this. We haven't got a clue what he is doing or why, so we will just try the usual path of drugs and if that doesn't work...well, thank God we haven't got there yet.
On a positive note, he isn't having as many episodes, they are getting lighter. The plan is now to wait 7 to 10 days and see if everything goes back to normal. If it doesn't then I think we may be introducing a new drug. Great.
And with that news, Zack went back to school on Monday. I was my usual concerned self as I left him in the very capable hands of team school, but I was worried about him all day. I needn't have been concerned, as sulky chops (yes, he wouldn't even look at me when I dropped him off) was very happy and had a great day. Oh, and only one of his seizure (non seizure, what the hell is it) episode.
Brilliant. He decided on the way home, to provide both Scarlett and I with an example of all the little seizures he had saved up whilst being at school. Little git.
It's good to have him back to almost normal. Lots of laughing, smiles and chats. He is now getting particularly good at saying hello. I must record that to play on here at some point.
Started a new bedtime routine tonight. It goes like this. He gets put in his bed, I get in with him. We have two stories, then night, night, I leave. He had about 20 minutes of tantrum. It's gone quiet now. I must go and check, hopefully he is okay and fast asleep. And I hope the cat hasn't sneaked in.
Friday, 23 May 2014
Zackisms
The good news is we had the results back from Zack's latest EEG. His new stiff jerk movements are not seizures. Phew. We didn't think they were and thank goodness the hindsight was there to see what we were treating rather than dose him up with a cocktail of anti-epileptic drugs.
His brainwave patterns show background abnormality (well, yes, he has considerable brain damage) but the episodes he is currently having show no electrical spike abnormality that would suggest seizures, it is more likely a muscle abnormality given his condition.
The bad news. We remain in poo/vom city. Slightly better today, he's only been sick a little, kept all his water and meds down and no code browns. Thank the Lord.
Agreed plan is to allow this virus to pass and see if his new Zackisms settle down, if not, then possibly an increase in the Baclofen. The Zackisms haven't settled and were quite bad today. We are thinking of requesting an appointment with a neurologist to discuss this new development, I would like to understand a little bit more of what they think it is. I am also hoping that it goes away and stays away for a good while.
Oh Zack's big boy bed arrived. And it is fantastic. He is so tiny in his single bed, so little covered up with his big boy Marvel Avengers duvet. And sleeps so well in it. Yes, sleeps. In bed. So much so, he actually had an afternoon nap in his bed, unheard of in this household.
He woke up in the early hours last night. I went down to comfort him, but really I just wanted to have a go of his tilting bed. It was very comfortable. Dan changed shifts with me about 4am and I heard Zack laughing and then Dan state, "well, move over then."
Talking of laughing, I've missed by boy. He's been very miserable but today we had more smiles and a few chatty noises. He's starting to come back. If he can come back and the twitches disappear, life will be good.
His brainwave patterns show background abnormality (well, yes, he has considerable brain damage) but the episodes he is currently having show no electrical spike abnormality that would suggest seizures, it is more likely a muscle abnormality given his condition.
The bad news. We remain in poo/vom city. Slightly better today, he's only been sick a little, kept all his water and meds down and no code browns. Thank the Lord.
Agreed plan is to allow this virus to pass and see if his new Zackisms settle down, if not, then possibly an increase in the Baclofen. The Zackisms haven't settled and were quite bad today. We are thinking of requesting an appointment with a neurologist to discuss this new development, I would like to understand a little bit more of what they think it is. I am also hoping that it goes away and stays away for a good while.
Oh Zack's big boy bed arrived. And it is fantastic. He is so tiny in his single bed, so little covered up with his big boy Marvel Avengers duvet. And sleeps so well in it. Yes, sleeps. In bed. So much so, he actually had an afternoon nap in his bed, unheard of in this household.
He woke up in the early hours last night. I went down to comfort him, but really I just wanted to have a go of his tilting bed. It was very comfortable. Dan changed shifts with me about 4am and I heard Zack laughing and then Dan state, "well, move over then."
Talking of laughing, I've missed by boy. He's been very miserable but today we had more smiles and a few chatty noises. He's starting to come back. If he can come back and the twitches disappear, life will be good.
Sunday, 18 May 2014
Elevated his illness
I wish I could type a more light hearted post, what with the weather being so fabulous and all. At the moment although it's a glorious day I feel as though we are still stuck in perpetual doom and gloom. In fact, I will go so far to say that the beginning of my 40's has not been a great start, maybe this decade of my life shall be known as depressed at 40.
Zack has elevated his illness to sickness and poo. We still have mucasgate which to be fair is causing the vomiting and we still have minimal sleep. This is week number three. I know what the problem is as we all now have colds and coughs. It's small child and her pre-school pals, they are just germ rats. Whereas we can usually shake a cold within a few days Zack's goes on and on and on. Only good news is that it isn't on his chest.
At the moment this blog should have a warning. Don't read if you're in a good mood and abandon all hope ye who enters here.
Zack has elevated his illness to sickness and poo. We still have mucasgate which to be fair is causing the vomiting and we still have minimal sleep. This is week number three. I know what the problem is as we all now have colds and coughs. It's small child and her pre-school pals, they are just germ rats. Whereas we can usually shake a cold within a few days Zack's goes on and on and on. Only good news is that it isn't on his chest.
At the moment this blog should have a warning. Don't read if you're in a good mood and abandon all hope ye who enters here.
Tuesday, 13 May 2014
Mucas, sick and poo
I don't know what's powering me at the moment. Zack continues to wake up every night from about 1am. Either full of snot, or having a bout of his seizures. Either way it's all getting very boring and tiresome, so very, very tiresome.
Last night he was furious, he woke up coughing and snotting and then seizuring, I think in the end he went to sleep, I know I did, I hope he did. He is currently fast asleep on my bed, he has been for over an hour and half. At least he is getting some rest, I know I'll pay for it later when he refuses to go to bed.
Today was a better day than yesterday. His bouts of "seizures" were less and the length of period in between longer.
Apparently this morning there was an incident involving snot, mucas, sick and poo. I didn't have to deal with that, thank God. All I hear Dan saying was I didn't know someone so small could produce that amount of snot, it's amazing what the body is capable of distributing into your personal space.
Last night he was furious, he woke up coughing and snotting and then seizuring, I think in the end he went to sleep, I know I did, I hope he did. He is currently fast asleep on my bed, he has been for over an hour and half. At least he is getting some rest, I know I'll pay for it later when he refuses to go to bed.
Today was a better day than yesterday. His bouts of "seizures" were less and the length of period in between longer.
Apparently this morning there was an incident involving snot, mucas, sick and poo. I didn't have to deal with that, thank God. All I hear Dan saying was I didn't know someone so small could produce that amount of snot, it's amazing what the body is capable of distributing into your personal space.
Sunday, 11 May 2014
And in other news this week.......
Seizure smeezures......the boy can sit unaided, look at this video over two minutes, I switched off in the end as I got bored.....forgive my shrill voice, oh and wobbly camera holding, oh and drill captain Scarlett.
Huge milestone for Zack and one that a lot of people thought he would be unable to do. Proud.
Huge milestone for Zack and one that a lot of people thought he would be unable to do. Proud.
He can smile through them
I escaped to Rome for a few days, without any children or partner. You know, as you do. Well really it was part of my month of jubilee celebrations to mark my 40th birthday. I loved Rome, I loved the break but then I came back to draaaammmmaaaa.
Oh, that pain in the arse seizure city is back taunting Zack. Thing is we don't know if they are seizures or muscle spasms or a Zackism. They look very much like the seizures he had in November over a year ago. He ended up in hospital for three days pumped full of every conceivable drug, which, in the end, didn't stop them attacking him. It turns out following an EEG they weren't seizures and shortly after they stopped as suddenly as they had appeared.
At the moment we are in week three of these little beasts, that force him to go into a tight spasm of thrusting his head back and straightening his right arm, this batch of stiffen and release last for about 2 - 5 minutes with 20 - 30 minute breaks in between. I'm exhausted watching him, he must be fed up doing it. However, unusually he can smile through them, he is conscious and when he sleeps they disappear entirely.
We went for a meeting with his consultant and we agreed to give him an EEG to find out what's going on before we medicate or change medications. For the moment I have agreed to start him on a very low dose of Baclofen. A muscle relaxant drug, in the event that if they are muscle spasms then we have already begun treatment. I was very opposed to this drug as I don't want it to affect his muscle tone as his sitting and head holding is excellent. So far the small dose has made no affect on his tone and no affect on the "seizures".
The only other thing that is similar to this batch is that he has been very snotty, high temperature too. Our thinking is that he has or has had a virus which has caused his body to react in this manner. He seems to follow a pattern of this, some viruses affect him and some do not.
Wednesday we go for the EEG and hopefully, we can get a plan in place.
Oh, that pain in the arse seizure city is back taunting Zack. Thing is we don't know if they are seizures or muscle spasms or a Zackism. They look very much like the seizures he had in November over a year ago. He ended up in hospital for three days pumped full of every conceivable drug, which, in the end, didn't stop them attacking him. It turns out following an EEG they weren't seizures and shortly after they stopped as suddenly as they had appeared.
At the moment we are in week three of these little beasts, that force him to go into a tight spasm of thrusting his head back and straightening his right arm, this batch of stiffen and release last for about 2 - 5 minutes with 20 - 30 minute breaks in between. I'm exhausted watching him, he must be fed up doing it. However, unusually he can smile through them, he is conscious and when he sleeps they disappear entirely.
We went for a meeting with his consultant and we agreed to give him an EEG to find out what's going on before we medicate or change medications. For the moment I have agreed to start him on a very low dose of Baclofen. A muscle relaxant drug, in the event that if they are muscle spasms then we have already begun treatment. I was very opposed to this drug as I don't want it to affect his muscle tone as his sitting and head holding is excellent. So far the small dose has made no affect on his tone and no affect on the "seizures".
The only other thing that is similar to this batch is that he has been very snotty, high temperature too. Our thinking is that he has or has had a virus which has caused his body to react in this manner. He seems to follow a pattern of this, some viruses affect him and some do not.
Wednesday we go for the EEG and hopefully, we can get a plan in place.
Thursday, 17 April 2014
Skinny legs
Sometimes on Facebook you get the odd video popping up on peoples feeds. Inspirational stories, horrifying stories, funny stories a lot of them come from a site called Upworthy. This has become one of my new favourite places to time waste when surfing the world wide web of distraction.
Recently a short animated film appeared on a news feed entitled Cuerdas. It is in Spanish but you don't need subtitles to understand the beauty of what the story is telling you.
Basically I can't watch it without using a full toilet roll to mop up my wet face simply because the little boy in the story reminds me of Zack. His little floppy socks, his skinny legs, the chair.
The director of the film, Pedro Solis won the Goya Award 2014 for best animated Spanish short film. I knew that the person who created this story also knew first hand what Cerebral Palsy is, what someone looks and acts like, how people react to children who are different. Pedro has a son who like Zack suffered starvation of oxygen at birth. In this article he talks about his son.
Pedro Solis
The film is an idyllic reflection of what can happen when barriers are broken and friendships are made, heart-breaking and emotional. I warn you have tissues at the ready.
The link I have put for this film has subtitles just click on the choose language drop down bar and pick Spanish 39%, odd but it works.
Cuerdas
Recently a short animated film appeared on a news feed entitled Cuerdas. It is in Spanish but you don't need subtitles to understand the beauty of what the story is telling you.
Basically I can't watch it without using a full toilet roll to mop up my wet face simply because the little boy in the story reminds me of Zack. His little floppy socks, his skinny legs, the chair.
The director of the film, Pedro Solis won the Goya Award 2014 for best animated Spanish short film. I knew that the person who created this story also knew first hand what Cerebral Palsy is, what someone looks and acts like, how people react to children who are different. Pedro has a son who like Zack suffered starvation of oxygen at birth. In this article he talks about his son.
Pedro Solis
The film is an idyllic reflection of what can happen when barriers are broken and friendships are made, heart-breaking and emotional. I warn you have tissues at the ready.
The link I have put for this film has subtitles just click on the choose language drop down bar and pick Spanish 39%, odd but it works.
Cuerdas
Monday, 7 April 2014
And I never dropped the child
Finally got to see Zack's ENT doctors at Manchester Children's Hospital. The doctor thought I was coming for a chat about hearing and grommets, and whilst, yes, that is interesting, I was there to talk about the endless sleepless nights Zack has when he gets an Upper Respiratory infection.
Every cold turns into a problem with breathing through his nose, which is made all the more difficult when he is lying down at night. Hence, no sleep for anyone. The doctor was great, I explained about the four courses of antibiotics, the secretions and the blocked nose. He asked if Zack has ever had a blood test to check his immunity levels, errm no. Blood test booked in that morning.
Second stage of investigation is for Zack to have a sleep study, to see what his oxygen levels are like at night. He will stay overnight in hospital for this procedure.
So having had a good appointment I waited in reception for Zack to be called in for his blood test. Oh did I mention I also had Scarlett with me. Yes. For anyone who knows the hospital there are about four waiting rooms in one huge area, a bit like an airport lounge. The small child took herself off to watch a television behind me. I stood up to see where she had got to whilst holding Zack in my arms. In comedy fashion my heel got stuck in my trouser leg and for what seemed like seconds in slow motion I could feel myself losing my footing. I can't fall, I reasoned with myself I have Zack, how will I stop myself, oh I know I'll scoot about like I'm running on the spot like one of those cartoon mouse characters. Eventually I fell onto my knees, bang. In front of an audience. And I never dropped the child. I thank you.
Never a dull moment.
Friday, 4 April 2014
Operation Bluebird
Easter, that means chocolate, eggs, rabbits, Spring and a Bluebird.
Bluebird?
Yes. That was Zack's given title in the Easter assembly at school. Oh how I like a challenge and any excuse to do a bit of creative crafting.
There I was 9pm at night sticking blue feathers all over a hooded top, all over me, all over the house. Earlier on operation Bluebird was stopped thanks to the three year old saying "I'll help, I'll blow the feathers".
I have to say i was pretty proud of the costume, not sure Zack was impressed with it. We went to watch his Easter assembly at school. What an absolute delight. I have never seen so many happy children, a little boy performed the beginning of Coldplay's Yellow with some musical bells and a lovely boy sang the song.
However, Zack's class looked amazing dressed as garden characters and wow, was I so proud of my Bluebird when he came zooming in on his standing frame, dancing around with the help of one of his teachers. It was brilliant.
Bluebird?
Yes. That was Zack's given title in the Easter assembly at school. Oh how I like a challenge and any excuse to do a bit of creative crafting.
There I was 9pm at night sticking blue feathers all over a hooded top, all over me, all over the house. Earlier on operation Bluebird was stopped thanks to the three year old saying "I'll help, I'll blow the feathers".
I have to say i was pretty proud of the costume, not sure Zack was impressed with it. We went to watch his Easter assembly at school. What an absolute delight. I have never seen so many happy children, a little boy performed the beginning of Coldplay's Yellow with some musical bells and a lovely boy sang the song.
However, Zack's class looked amazing dressed as garden characters and wow, was I so proud of my Bluebird when he came zooming in on his standing frame, dancing around with the help of one of his teachers. It was brilliant.
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| Bluebird Zack |
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| Zack testing out the costume |
Well done Zack.
Tuesday, 4 March 2014
Job titles
Before I had Zack I worked in marketing. Mainly within the education sector. I liked my job, it was interesting, if a little stressful at times.
However, since having Zack I have developed an abundance of new careers and having written that last post it got me thinking (stand back I am having a Carrie Bradshaw moment) how many job titles do I have?
Here's the list:
Physiotherapist
Health Advisor
Occupational Therapist
Speech Therapist
Administration Manager
Chef
Teacher
Nurse
Dietician
Personal Assistant
Adaption Officer
Managing Director
Publicist
Chauffeur
Think that covers it all so far. By far this job is the hardest, busiest and most stressful. And by far this job is the most rewarding, stimulating and motivating. Bet all you mums and dads of children with special needs are thinking of some I may have missed, feel free to add.
However, since having Zack I have developed an abundance of new careers and having written that last post it got me thinking (stand back I am having a Carrie Bradshaw moment) how many job titles do I have?
Here's the list:
Physiotherapist
Health Advisor
Occupational Therapist
Speech Therapist
Administration Manager
Chef
Teacher
Nurse
Dietician
Personal Assistant
Adaption Officer
Managing Director
Publicist
Chauffeur
Think that covers it all so far. By far this job is the hardest, busiest and most stressful. And by far this job is the most rewarding, stimulating and motivating. Bet all you mums and dads of children with special needs are thinking of some I may have missed, feel free to add.
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.
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.
Saturday, 1 March 2014
Happy Birthday Scarlett
And we cannot go any further without saying Happy 3rd Birthday to Zack's amazing, beautiful little sister Scarlett.
Happy Birthday Scarlett, you still rock.
Happy Birthday Scarlett, you still rock.
Wednesday, 26 February 2014
A very dark place
Below is a post I wrote for Leckey Design's new Firefly website. Thought I would pop it on my own blog for those of you who may not have got to read my words of wisdom or as I like to call it self-opinonated dribble.
I've been writing this blog now since Zack was born.
It began as a way of me documenting his life, our life and all the emotion that travels with it. It also served to tell friends and family what he was up to and how he was doing.
It became clear that the blog also recruited readers that where very similar to our family. They too had fallen into a whole new world.
In thinking back to the beginning, I wonder what advice I would have liked to have heard. So forgive me this indulgence, but this is for all you newbies, I hope you find it useful.
Advice perhaps, or well meaning verse.
For whatever reason we choose to have a family I can guarantee that nine months of it will be spent (probably mainly by women but men too) imagining. Dreaming up little scenarios of your soon to be born child, what they will look like, what their little personalities will be like and getting giddy about all the adventures this new family will travel. It's like a glossy snapshot, idealised in your head, eager for it to be born into reality.
But what if that image doesn't come true? What if the change to your life is so traumatic and violent that it knocks you sideways?
For some families this is their reality. Some people, for whatever reason, go on to find that they are now parents to a child with a disability, labeled by society to have special needs.
Sometimes the diagnosis comes at birth. Sometimes it happens weeks or months later. And sadly, sometimes, it can happen to a child that was once living an ordinary life.
You suddenly find yourself in a very dark place. A lonely, unknown path and it can be extremely daunting. A path I found myself traveling having delivered my son Zack who was starved of oxygen at birth for eighteen minutes. This eighteen minutes resulted in my partner and I coming home with a baby that would need full time care for the rest of his life. Yet here I am four years later no longer afraid, no longer alone and with a new perspective on life that perhaps I would never have gained having lived my imagined life.
And this is what I know so far.
1. Fear and grief.
That's what you probably feel at first, fear. Fear of the unknown. Fear of how you will cope and fear of your new life. It's a scary time. You probably think why me, why my child? Life isn't meant to happen like this. For me it felt like someone had thrown me in a dark room shut the door and said there you go, find your way back to a normal existence. And you can find normality, it's very different to how you imagined, it takes time, but it is there.
Alongside all the rush of emotions I felt was also grief. Remember that picture that ran through my head for nine (well seven months, Zack was also premature) it had been destroyed. The child I imagined no longer existed and for that you have to allow yourself to grieve. The very best thing I did was to let myself feel loss for the child that could have been which perhaps (and it took time) allowed me to accept fully my wonderful son I have today.
2. Abandonment and support
Along with fear comes an overwhelming sense that the situation has happened to you and you alone. And in a need to quantify your emotions you start to search for others in your situation. First to find hope, to discover other stories like your own that give you a glimmer of a happy ending. Then when you do find them, you discover your tribe. A group of people that you probably didn't know existed before but they are there. The ones that have walked your road, are the branches you cling on to because they are the oracle, the people that have answers to things that may baffle you, worry you or quite frankly scare you half to death. Then you find the other new ones, the people like you, and you can at at last speak freely knowing that they just get it. The place that I found my tribe was the fabulous www.specialkidsintheuk.org to put it bluntly, they got me through the first year.
Slowly I found in my own local area there were other parents in my situation the one's that really did understand. I avoided other baby groups like the plague. To be honest I'm not one for baby meet ups and if that's what you like then go for it. But I knew that taking my not sitting, not eating baby to a session with lots of crawling, babbling bundles of joy would do me or Zack no good at all. For us it would merely shine a spotlight on the differences and what I needed at that time was to cocoon the two of us.
So whatever helps you, go out and find that support. Whether it's online or at a community baby group, find them and stick close by, they will be there in your darkest hours and share in your moments of joy.
3. Team Building
There are great doctors, there are good doctors and there are not so great doctors. At first I thought being a medical professional in whatever field from paediatrics, speech and language to physiotherapy, that they knew my son best.
Looking back I now know they didn't. I did. I was the expert. You will probably have all sorts of terminology thrown at you. You go home and google it and then that magnifies your already bubbling terror tenfold. Don't google. Trust your instincts. Find the professionals that you know you can work with. You need to build your team, we have one, it's called Team Zack, (original isn't it?)
You need to trust the people that have the medical expertise but ultimately you are the one in charge. My son has cerebral palsy, he is visually impaired, he can't eat so has a Mic-Key button, he is non-mobile. I was told what his life was likely to be like and yes on paper it is as the good doctors suggested. What they don't mention is the amazing things my son has accomplished. How he has learnt to communicate with us, his unusual and sometimes dark sense of humour and his ever increasing ability to surprise me.
So yes, medially they have training and experience but you have the inside knowledge. It might not seem like it at the beginning but that gut instinct is your strongest team player. Make sure it's always front and centre.
4. Therapy and a bit of acceptance
Aaaaaah therapy or the immediate search for a cure all. Like the googling of medical terminology another thing, that quite naturally you may try to do, is find some form of treatment or therapy that will eventually fix your child.
Sadly out in the big world wide web there are, I think, people that will quite happily take your money in return for promising massive changes to a severely disabled child. For some parents it can take some time to accept the situation. Everyone deals with things differently. For myself and my partner Dan it was pretty quick that we accepted our path in life. I think once you accept that you can't fix your child it gives you a clearer outlook on life. At the start you are overshadowed by naturally wanting to make things better, like any parent would want to do. And please, do not think that I am suggesting you give up (more on that later), I am not, I just think it is easier to move forward if you are able to accept the situation within which you live. But be kind to yourself. It can take a long time, it can be quick, but it will happen.
So do your research. I am a big advocate for therapy. I tried a couple of different places in the beginning and have now finally found one that seems to encompass the three major areas that my son needs encouragement with, that being physiotherapy, speech and language and independence. The therapy Zack undertakes is conductive education at the fabulous Legacy Rainbow House.
5. Hope
My biggest piece of advice to parents would be, never give up. Don't lie down. Don't give up on your child. You are their voice, their advocate and the means by which they will experience the world and be accepted into society.
Despite being told my child will be and I quote seriously disabled (this was said to me by a consultant twice in one sentence just in case I hadn't realised) I made every effort with Zack and still do to help him make sense of his world.
Hope is very powerful and I have hope in abundance. Realistic hope. I mean I don't think Zack will ever walk or talk, (however having said that over Christmas he did some stepping in a walking frame and distinctly said yes to me, several times). My realistic hope is that Zack will be able to do much more than you would assume if you read about his condition on paper. And that is what he is doing.
Don't give up.
There you go some advice from someone down the road. I hope it was helpful, not presumptuous or upsetting. We are all different and deal with things in our own way and this is just me and who we are. And whoever you may be and whatever road you are on I want to say one last thing, you are not alone, be brave, be strong and enjoy the ride.
Snug little Bug
Zack has moved into his room. It's all finished and it looks brilliant. A proper little boy's room. Smells like one too. Why do boys just stink?
He slept reasonably well the first night. I didn't. He felt like he was in another country. Needless to say I ended up bringing him into our room, because, well, because he was a bit upset. Oh okay, it made me feel better.
Since that first night, I no longer worry and he sleeps like a snug little bug. I have chosen a new bed for him, an all singing all dancing, all moving up down side to side and around bed. It will be here in a few weeks which will mean no more kneeling down and no more bad backs.
Here are some pictures of his finished room. I love it. He loves it. Happy times.
He slept reasonably well the first night. I didn't. He felt like he was in another country. Needless to say I ended up bringing him into our room, because, well, because he was a bit upset. Oh okay, it made me feel better.
Since that first night, I no longer worry and he sleeps like a snug little bug. I have chosen a new bed for him, an all singing all dancing, all moving up down side to side and around bed. It will be here in a few weeks which will mean no more kneeling down and no more bad backs.
Here are some pictures of his finished room. I love it. He loves it. Happy times.
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| Top End, note solar system |
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| Bottom end, bed to follow |
Birthday celebrations
Despite having his fourth course of antibiotics Zack had a great birthday. His birthday celebrations seemed to continue for the whole week. All told he had a lovely tea party on the day with both sets of grandparents, a trip to Eureka, the children's museum and a third little get together with friends during half term. Not bad for someone who is only five.
Here are some photos of his celebrations.
I'm having a lie down, I have another birthday on Saturday and one on Sunday. Is that it then?
Here are some photos of his celebrations.
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| Its My Birthday and we gonna party |
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| A really, really, loud gun, I liked it, Scarlett didn't |
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| Woody....yes. |
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| Where am I? |
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| Oh behind this huuuuge present |
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| I got myself a large toy frame, muchos fun |
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| With Nanny Barbara, that's my Grandad Mike |
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| Nanny Barbara won't share me, that's Miniford, she's my Great Nanny |
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| That's Nanny Anne, she stole me off Nanny Barbara |
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| Caaaaaakkkke |
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| My family |
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| Balloon, I'm not impressed |
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| Eureka, touchy feely pods. |
I'm having a lie down, I have another birthday on Saturday and one on Sunday. Is that it then?
Thursday, 13 February 2014
Happy 5th Birthday
Happy Birthday to my wonder boy.
Five years old today. Five years on and it feels like it has happened in the blink of an eye. Five years and I would not change a single second of our lives together.
I love you Zack.
And with time honoured tradition, here is his video montage.
Five years old today. Five years on and it feels like it has happened in the blink of an eye. Five years and I would not change a single second of our lives together.
I love you Zack.
And with time honoured tradition, here is his video montage.
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