Saturday 30 August 2008
In need of a holiday!
Not because I'm stressed at all but we have been so busy all summer that I need a week of doing nothing to get over it!
We really have had a brilliant few weeks, Patrick has been stable with good days and bad days but we've come to expect that. Isaac on the whole has been an absolute pleasure to have around so I will be sad when he starts back at school next Tuesday. Since my last post just 2 weeks ago we really have packed loads in, with trips to the cinema, the fair, Serendipity Sam's, art exhibitions, Poole pottery, the beach, we really haven't stopped. I won't bore you with the details of everything we've been up to but I would like to highlight a couple of extra special days we've had.
As Patrick attends Naomi House hospice we were invited to an annual event put on by the Starlight Foundation at Popham airfield in Basingstoke. We didn't know too much about it and very nearly didn't go as the weather forecast for the day was rain, thank goodness we went, it was an amazing day, the sun shone all day and it was a day we'll never forget. Basically, Starlight took over the whole airfield for the day, lots of local pilots volunteered themselves and their planes and gave every family (about 500!) a short flight. We managed to be the first family to have a turn, me, Patrick and my Mum went in one plane with Isaac and Martin following in one behind us. Mum sat in front and was given control of the wheel, she even managed to land the pane without too many bumps, an experience I don't she'll ever forget. Patrick was happy to be in the air although I don't think he really realised, choosing just to sit happily on my lap and chew his hands! Besides the airplanes there were helicopters, we gave Isaac Patrick's helicopter ticket as he would appreciate it more and Mum had never been in one so they both went up together. There were also dozens of different cars from sports cars to classic cars that were there, driving all the kids around the field. They had loads of motorbikes, a London bus, a fire engine and little hovercraft to have a go on. It really was a great day out. Lunch was provided and there were free activities and games in a big marquee so not only did all the children get to experience all the free rides, they also came away with free gifts and toys. We all had a fab day, I don't think Isaac really appreciates how lucky he was to get to try all the things he did in one day, but we certainly do and we're very grateful for all the effort made by the organisers and volunteers.
Another good day we had last week was hosted by a charity we have only just found called 'SCARF' like Coping with Chaos they organise activities and day trips for families with disabled children. The good thing about SCARF is that they operate closer to home with activities in Lymington and New Milton and the New Forest so we'll be able to get more involved. It also means Martin and I both get to meet other parents locally which is really important. We went along to a Football training day last Wednesday where Isaac got to join in with a coaching session run by professional coaches from Bournemouth FC. We were made to feel really welcome by both the parents and other children and we're now looking forward to a trip to Blue Reef Aquarium with them on Monday.
Our battle to be re-housed is still ongoing with letters currently going backwards and forwards between us and the council as we try to establish why we can't get further up the list. We have asked them to clarify how their allocations policy adheres to the governments housing guidelines regarding vulnerable children and also how they encompass the children's act into their points system. So far they have told us that they do take vulnerable children into account and would give priority to a child if they didn't have access to a garden or if they live above the ground floor in a block of flats. Unfortunately their current points system doesn't allow them to give priority to severely disabled children like Patrick who cannot be given the equipment he needs to help him to reach his potential where we are currently living, makes for an interesting case I think so I'll keep you posted on that one.
I would like to draw your attention to another website we have recently found out about called Post Pals. Patrick is too young for me to register him on there yet, he has to be 2 but basically there are many children with serious or terminal conditions that you could make smile just by sending a little something in the post. Anyone with children will know how excited they can get if they receive something in the post, even a postcard. This site gives details of lots of children that you can write too, a great project if you have children yourself, Isaac has chosen to write to a little boy called Jack who was born on the same day as him, Jack is currently battling cancer so Isaac is going to send him some colouring and sticker books. A simple gesture that costs very little but can mean a lot.
I would also just like to give a mention to my friend Karen who's son Luke (see earlier posts) was yesterday taken back into hospital after having 28 fits over a 4 hr period. Luke is just a couple of months older than Patrick and is a gorgeous little boy so we're sending lots of prayers and keeping everything crossed that they can get his seizures under control quickly and find out what's caused the sudden change.
Anyway, that's it from me, I've got lots of photo's to upload so I'll do that in a separate post, for those who aren't on facebook yet there are loads of photo's of our summer holidays on there so get yourself signed up!
Lots of love as always xxx
We really have had a brilliant few weeks, Patrick has been stable with good days and bad days but we've come to expect that. Isaac on the whole has been an absolute pleasure to have around so I will be sad when he starts back at school next Tuesday. Since my last post just 2 weeks ago we really have packed loads in, with trips to the cinema, the fair, Serendipity Sam's, art exhibitions, Poole pottery, the beach, we really haven't stopped. I won't bore you with the details of everything we've been up to but I would like to highlight a couple of extra special days we've had.
As Patrick attends Naomi House hospice we were invited to an annual event put on by the Starlight Foundation at Popham airfield in Basingstoke. We didn't know too much about it and very nearly didn't go as the weather forecast for the day was rain, thank goodness we went, it was an amazing day, the sun shone all day and it was a day we'll never forget. Basically, Starlight took over the whole airfield for the day, lots of local pilots volunteered themselves and their planes and gave every family (about 500!) a short flight. We managed to be the first family to have a turn, me, Patrick and my Mum went in one plane with Isaac and Martin following in one behind us. Mum sat in front and was given control of the wheel, she even managed to land the pane without too many bumps, an experience I don't she'll ever forget. Patrick was happy to be in the air although I don't think he really realised, choosing just to sit happily on my lap and chew his hands! Besides the airplanes there were helicopters, we gave Isaac Patrick's helicopter ticket as he would appreciate it more and Mum had never been in one so they both went up together. There were also dozens of different cars from sports cars to classic cars that were there, driving all the kids around the field. They had loads of motorbikes, a London bus, a fire engine and little hovercraft to have a go on. It really was a great day out. Lunch was provided and there were free activities and games in a big marquee so not only did all the children get to experience all the free rides, they also came away with free gifts and toys. We all had a fab day, I don't think Isaac really appreciates how lucky he was to get to try all the things he did in one day, but we certainly do and we're very grateful for all the effort made by the organisers and volunteers.
Another good day we had last week was hosted by a charity we have only just found called 'SCARF' like Coping with Chaos they organise activities and day trips for families with disabled children. The good thing about SCARF is that they operate closer to home with activities in Lymington and New Milton and the New Forest so we'll be able to get more involved. It also means Martin and I both get to meet other parents locally which is really important. We went along to a Football training day last Wednesday where Isaac got to join in with a coaching session run by professional coaches from Bournemouth FC. We were made to feel really welcome by both the parents and other children and we're now looking forward to a trip to Blue Reef Aquarium with them on Monday.
Our battle to be re-housed is still ongoing with letters currently going backwards and forwards between us and the council as we try to establish why we can't get further up the list. We have asked them to clarify how their allocations policy adheres to the governments housing guidelines regarding vulnerable children and also how they encompass the children's act into their points system. So far they have told us that they do take vulnerable children into account and would give priority to a child if they didn't have access to a garden or if they live above the ground floor in a block of flats. Unfortunately their current points system doesn't allow them to give priority to severely disabled children like Patrick who cannot be given the equipment he needs to help him to reach his potential where we are currently living, makes for an interesting case I think so I'll keep you posted on that one.
I would like to draw your attention to another website we have recently found out about called Post Pals. Patrick is too young for me to register him on there yet, he has to be 2 but basically there are many children with serious or terminal conditions that you could make smile just by sending a little something in the post. Anyone with children will know how excited they can get if they receive something in the post, even a postcard. This site gives details of lots of children that you can write too, a great project if you have children yourself, Isaac has chosen to write to a little boy called Jack who was born on the same day as him, Jack is currently battling cancer so Isaac is going to send him some colouring and sticker books. A simple gesture that costs very little but can mean a lot.
I would also just like to give a mention to my friend Karen who's son Luke (see earlier posts) was yesterday taken back into hospital after having 28 fits over a 4 hr period. Luke is just a couple of months older than Patrick and is a gorgeous little boy so we're sending lots of prayers and keeping everything crossed that they can get his seizures under control quickly and find out what's caused the sudden change.
Anyway, that's it from me, I've got lots of photo's to upload so I'll do that in a separate post, for those who aren't on facebook yet there are loads of photo's of our summer holidays on there so get yourself signed up!
Lots of love as always xxx
Saturday 16 August 2008
Summer Update
Hiya, been so busy over the last few weeks we just haven't had time to really sit down and write a new post. I'll try not to go on too much and will start with the important bits first.
At the end of July we took Patrick for a check up at the Child Development Centre. Patrick's regular paediatrician is on long term sick so they've dragged another out of retirement to deal with her patients and although I have no doubts that this Dr has a wealth of experience, he really was 'old school' with his opinions and his manner, and Martin and I both found the whole appointment incredibly frustrating and a bit of a waste of time. The Dr got my back up from the very start reffering to Patrick's symptoms as problems and repeatedly using the term 'handicapped' which isn't at all politically correct these days. I asked for some advice regarding Patrick's eating as he isn't really making progress with his chewing and although he eats well we has to have everything pureed. I had hoped to be refered back to his speach and language therapist. Instead what we got was a 10 minute advertisement for a blender! The Dr hadn't listened at all, I already give Patrick the same food as us and puree it at home, in the end I gave up trying to make myself heard.
Also, he tried to tell us that "children like Patrick" wouldn't benefit from a programme like Brainwave and that we should not waste our money! According to this guy Patrick comes under the catagory of children where the damage has been done and there is little chance of him learning new skills as his epilepsy would interfere and wipe out anything he learns. We were a bit taken aback by this at first as none of the other Drs or specialists have said this before or been so blunt. We're definately going to disregard most of his comments though as he has no idea about what Patrick is capable of; he's spent five minutes looking at his file and formed an opinion after comparing him to other children he's seen. After voicing his views against programmes that use repatition he then proceeded to get on the floor with Patrick and showed us excersises to do with him and said "with enough repetition he'll eventually be able to do it himself"! A total contradiction! We know he didn't read all his file up to the part where it explains the progress he's already made as he still thought Patrick was on drugs that he came off months ago and he seemed unaware of the results of the most recent MRI which showed the white matter loss had in fact stopped. Patrick's neurologist has said that Brainwave could be good for him and she would be the best judge really.
Anyway, that appointment as I said was a waste of time, all we got out of it was some advice about Patrick's constipation and the confirmation that Patrick's development age is still around 3 months. And like we've always said, we're not bothered by his development age, it doesn't get us down to know that he's so far behind and is only making small progress, Patrick is Patrick and he is a happy, contented little man with a big character so that's alright by us.
So with all that off my chest I can move onto to the fun stuff!
We've had a really busy summer holidays so far, we couldn't do anything last year being stuck in Southampton hospital all summer so we've really tried to make the most of time this year. We've not been able to get away but have had lots of family days out including trips to Monkey World, Adventure Wonderland (with Coping with Chaos), Gunwharf, Ten-pin bowling and yesterday we had a fantastic day with friends Linda and Mervyn, mucking about in the water.
Patrick has been on fairly good form over the last few weeks, he even managed to stay awake for the whole of his visit to Julia's House last week and had everyone saying what a joy he was when he's awake!
In between all the fun days out we've had a few physio and portage sessions which have gone OK, Patrick has now been given a Corner Seat and a better Standing Frame so as ever our living space is getting smaller and smaller. We are still battling with the council over our housing needs, this will take time but we're confident it will all be sorted eventually.
At the end of July we took Patrick for a check up at the Child Development Centre. Patrick's regular paediatrician is on long term sick so they've dragged another out of retirement to deal with her patients and although I have no doubts that this Dr has a wealth of experience, he really was 'old school' with his opinions and his manner, and Martin and I both found the whole appointment incredibly frustrating and a bit of a waste of time. The Dr got my back up from the very start reffering to Patrick's symptoms as problems and repeatedly using the term 'handicapped' which isn't at all politically correct these days. I asked for some advice regarding Patrick's eating as he isn't really making progress with his chewing and although he eats well we has to have everything pureed. I had hoped to be refered back to his speach and language therapist. Instead what we got was a 10 minute advertisement for a blender! The Dr hadn't listened at all, I already give Patrick the same food as us and puree it at home, in the end I gave up trying to make myself heard.
Also, he tried to tell us that "children like Patrick" wouldn't benefit from a programme like Brainwave and that we should not waste our money! According to this guy Patrick comes under the catagory of children where the damage has been done and there is little chance of him learning new skills as his epilepsy would interfere and wipe out anything he learns. We were a bit taken aback by this at first as none of the other Drs or specialists have said this before or been so blunt. We're definately going to disregard most of his comments though as he has no idea about what Patrick is capable of; he's spent five minutes looking at his file and formed an opinion after comparing him to other children he's seen. After voicing his views against programmes that use repatition he then proceeded to get on the floor with Patrick and showed us excersises to do with him and said "with enough repetition he'll eventually be able to do it himself"! A total contradiction! We know he didn't read all his file up to the part where it explains the progress he's already made as he still thought Patrick was on drugs that he came off months ago and he seemed unaware of the results of the most recent MRI which showed the white matter loss had in fact stopped. Patrick's neurologist has said that Brainwave could be good for him and she would be the best judge really.
Anyway, that appointment as I said was a waste of time, all we got out of it was some advice about Patrick's constipation and the confirmation that Patrick's development age is still around 3 months. And like we've always said, we're not bothered by his development age, it doesn't get us down to know that he's so far behind and is only making small progress, Patrick is Patrick and he is a happy, contented little man with a big character so that's alright by us.
So with all that off my chest I can move onto to the fun stuff!
We've had a really busy summer holidays so far, we couldn't do anything last year being stuck in Southampton hospital all summer so we've really tried to make the most of time this year. We've not been able to get away but have had lots of family days out including trips to Monkey World, Adventure Wonderland (with Coping with Chaos), Gunwharf, Ten-pin bowling and yesterday we had a fantastic day with friends Linda and Mervyn, mucking about in the water.
Patrick has been on fairly good form over the last few weeks, he even managed to stay awake for the whole of his visit to Julia's House last week and had everyone saying what a joy he was when he's awake!
In between all the fun days out we've had a few physio and portage sessions which have gone OK, Patrick has now been given a Corner Seat and a better Standing Frame so as ever our living space is getting smaller and smaller. We are still battling with the council over our housing needs, this will take time but we're confident it will all be sorted eventually.
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