Ho Ho Ho Merry Christmas Everybody!!!

Hiya, really sorry for the lack of news lately. We've just been really busy settling into our new home and getting ready for Christmas, it's a rather hectic time of year. In actual fact, there's not really been anything to report. We're still waiting for appointments for the Keto diet, EEG's and eye tests so no news there. We did his latest blood results back that show his immune system is fine, he's going to have the flu jab and an injection to help prevent another bout of pneumonia so that should help keep him well.
We're all sorted and ready for Christmas, Patrick seems to like this time of year, there's flashing lights everywhere and sparkly tinsel to play with, our lounge is like a giant sensory room!
We've just had Patrick's new big bed delivered this week and a mobile hoist and in the new year he'll be getting a new standing frame and a sleep system, his Christmas has come early!
As there's not much news I thought I'd use this post to share some gorgeous photo's of the boys and wish you all a very merry Christmas xxxx.

The Big Move...

After a manic month and lots of sleepless nights (even more so than usual) we finally moved in to our new home last Saturday 1st November. We did it all ourselves, hired a van, rallied the troops and despite the appalling weather (it rained heavily all day) we kept smiling and got on with it, I have to say a massive thanks to all the boys (and girl) who had the job of lugging heavy furniture (Ash, Bill, Bruce, Stacey, Alec, Bobby & Andrew) I haven't found any breakages yet so they did a good job. Although we are still surrounded by boxes the new Bungalow is already feeling like home and I can already see the benefits. Patrick's positional chair is set up in the kitchen so he can be out there with me while I'm busy doing 'Mum stuff' he doesn't have to be left on his own to entertain himself anymore, and he can sit up to the table with us at meal times which is great. I can wheel him from the kitchen into any room on the ground floor, there are no restrictions which saves my back a lot of aching. Isaac is loving all the space in the new house, he even has room to practise his power slides across the living room floor so he's well happy!

There was one drawback to the move, we weren't allowed to bring our pets, Chewey the daschund and Poppy cat with us. There were lots of tears when we found out but we have found really good homes for both of them and they are doing fine. I still expect the dog to bark whenever someones at the door, it's all very quiet without them.

That's the move news out the way, on to Patrick. We had his 6 monthly appointment with his Neurologist Fiona yesterday. He's been fairly stable for the last 6 months, he's had good days and bad days in equal measure but we've coped OK and he's still happy and making small amounts of progress so that's good. We made the decision yesterday to go ahead and start the ketogenic diet. He will be referred to a hospital in Oxford and we'll have to go and stay there for a few days while they start him on it, he'll have to fast for 2 days and then start on a high fat diet, more info can be found on this fantastic website Matthews Friends. There is also a film called 'First Do No Harm' starring Meryl Streep which follows the true story of a family in USA and their battle to get their son onto the diet. I'm not sure yet when we'll be going to Oxford but it is likely to be before Xmas, I don't know how we're going to pack it all in! In the meantime we're increasing most of his anti epileptic drugs. We found out yesterday that Fiona is leaving to have a baby in December and will be on maternity leave next year, we were given the choice of different neurologists to see while she's away and have opted for Prof. Kennedy. We saw a lot of him before when Patrick was admitted and put on Vigabatrin, he seemed quite easy to get on with back then so hopefully we'll have a good relationship with him like we've had with Fiona.

We're off on a little holiday next week to recover from the madness of the last few months, and to recharge in time for the madness of the next few! Only going down to Centre Parcs in Longleat but we're planning on a bit of pampering in the spa and in the tropical indoor pools, I'm sure there'll be lots of photo's to share.

All was calm when...

What a crazy few weeks with more highs and lows than Alton Towers!
We were just plodding along as normal, getting back into the swing of things after Brainwave and planning our next plan of attack on the local council when out of the blue a letter arrived from the housing department. As you know we have been battling with the housing bods trying to get re-housed in more suitable accommodation but they had insisted there was nothing they could do for us as there is such a shortage of council accommodation in our area. Anyway, just as we were about to take further action and start challenging their whole allocations policy they sent us this letter to tell us about a 4 Bedroom Bungalow, newly renovated that is currently available to rent privately in our village. The landlord of this property has just signed a contract with the council that states he must rent it to people currently on the housing register at housing benefit rates for the next 7 years. In return the council gave him a grant to help with the renovations. We didn't really know what to think at first but decided we might as well go and check it out. Turns out to be ideal, newly extended detached with massive rooms, big driveway and loads of options in terms of making adaptions for both Patrick and Martin all of which the landlord is fine with.
We tried to get the ball rolling and accepted the house straight away, we took Patrick's OT round to view it with us and she has agreed that it should work for us and will come and see us a week after we've moved in with some catalogues, we can get a mobile hoist for carrying Patrick through to the bath and a special height adjustable bed with sides (like a hospital bed really) to save me having to bend down to him all the time. As you can imagine we are over the moon that this house has been offered to us, it all seemed very 'too good to be true' for a while. For the first few days it was really frustrating not knowing if it was all going through alright, the woman at the council who deals with all the financial side of things wasn't in so we couldn't get any firm answers and I spent the whole weekend feeling physically sick worrying about it all. Half of me was worried that we wouldn't get it, the other half was thinking that if we did get it then something bad was gonna happen, sounds silly I know but we're just not used to things going our way this easily so I always feel suspicious of good luck. I kept feeling that if everything went right with the house then maybe something would happen to Patrick?
Seems like I was right to be worried as the following week Patrick started to show signs of not being well, he was really agitated and unhappy when he was awake and very sleepy. Although he didn't have a high temperature or anything at this point we all new something was wrong. We took him to the Dr's on the Thursday who diagnosed an ear infection and gave him anti-biotics, he perked up for a couple of days then Sunday night he was up with a fever and sounding 'chesty'. Monday morning his temperature flew up to 42 and he was very febrile, we got straight on the phone to the Dr's and took him in, he had no energy and was very quiet, not like him at all. The Dr stuck him on a Saturation monitor and his Sat's were at 84 which is very low and he needed oxygen. An ambulance was called and he was taken to Poole Hospital. An x-ray showed he had an infection in his right lung so they just gave him different anti-biotics and kept him on oxygen. The following day after his morning nap he woke up with a fever again and had another febrile convulsion, it seemed he had got worse again. Different Anti-biotics were prescribed and on Wednesday we found out he was actually being treated for pneumonia. While he was in there I stayed with him, we had our own room which was good but on Wednesday I came down with some kind of sickness bug (I think it was something I ate) and had to go home, I felt devastated to leave him but managed to draft in the cavalry, Mum, who stayed with him all night for me.
Patrick finally turned a corner on Thursday and started to look and feel a lot better but still needed to be on oxygen while he slept. All the while his Sat's were below 93 they wouldn't let him home, they were at 99-100 all day but dropped to 90 while he slept. By Saturday I managed to persuade the Dr's to let us go home, Patrick sleeps so heavily, especially with all the medication he's on, I doubt his Sat's are ever as high as a 'normal' child. They have never been measured while he's been well so I think if they were waiting for his Sat's to improve we'd have been in there forever!
Anyway, he's home now and apart from normal cold symptoms he's doing fine. They've just given him an inhaler to help with his breathing. While I was in the hospital Martin managed to get the council to start the ball rolling on the Bungalow and as far as we know we're moving in on the 1st November! We still haven't been able to put the notice in with our current landlord but will do that today and as he needs a full months notice the council will pay for any overlap in the rent. It's all a bit manic now though as we have to get packed up and sorted in two weeks, including cleaning this place from top to bottom and stripping it of any sign that our crazy family of 6 with two pets were ever living here (help!). We're at Naomi House this weekend which couldn't come at a better or worse time, then the week after we move in we're on holiday at Centre Parcs, so much to think about and sort out, I don't know how it's all gonna get done and I'm sure the next few weeks are gonna be a blur but at least I can say that we will be in our lovely, spacious, new home for Christmas which I hope will be a quiet one!

Brainwave

Hiya, after another relaxing break at Naomi house (much easier the second time round) I have just got back from our trip to the Brainwave Centre with Patrick. What an experience. It's been an exhausting 2 days, especially for Patrick bless him, he's worked so so hard and was so well behaved and cooperative, I'm a very proud Mummy.

This was our first visit to the centre so we didn't know what to expect, we arrived on Monday (Me, my Mum and Patrick) and were shown to our Bungalow which was really nice, comfortable and well equipped. We had the rest of the day to chill out ready for the first day of the assessment on Tuesday. The day started at 9am with Music Therapy although true to form Patrick was asleep so missed that session. We did meet the therapist and she was able to show us what she would have done had he been awake and gave us some tips. I think Patrick would have enjoyed it really as he is very audibly aware and responds positively to anything that makes a good noise. The therapist recommended a book to us so we can practise Music therapy at home with him so I'll let you know how we get on (our neighbours are gonna love us!).

After this session we had to sit down and go over Patrick's history and answer questions on where we think his development is now. This was quite emotional really, I had prepared a timeline of events (I had to refer to the early posts of the blog for all the details) and whenever I'm forced to go over what happened in the beginning it just brings back lots of emotions and feels surreal. It's easy to forget that Patrick was in 'Status' for 12 days, that always gets me. It's a miracle he's even with us and although many would think he can't do much, I look at him and am amazed at how far he's come. Brainwave had received reports from his GP, Physios and his Neurologist and although I didn't read them all we were told that Fiona, his neuro had just written that they've ruled out any degenerative condition. Every time I hear that I feel a huge sense of relief, although as I've said before, I wont fully believe until he's had a few more scans. The physiotherapists were handed all his info before they met Patrick and even they said later that having read his history and known what he's been through in the past 18 months they couldn't believe they were meeting the same little boy.

In the afternoon Patrick had his main physical assessment. He was assigned two physiotherapists, Dawn and Margosha who put him through his paces for well over an hour, thankfully by this time Patrick was wide awake and on top form.

Although Patrick has regular physio sessions and Portage, this assessment was different mainly as we were given so much information and explanations as to why Patrick struggles with various things. Everything made complete sense too, it was a real eye opener really. An example is that although Patrick moves his arms and legs around quite freely, there is very little coordination and actually when you look at the way he kicks his legs about you can see that he really doesn't know they're his and although he can put his hands in his mouth, he can't really do too much else. He just isn't aware that his arms and legs are his or that he has this thing called a body. Normally a baby that is developing normally finds it's feet and has the strength to explore their own body and will naturally experiment and learn what to do with it. While Patrick was at the age when this should have happened he was too poorly and too weak so he missed a whole chunk out of his natural development. So, we have learnt that we need to go back a few paces with Patrick and basically introduce him to himself, until he can understand that his hands are is own we can't really expect him to be able to play with toys or try and reach out for things. There are various ways we can do this with exercises, the technical term for all this is 'spatial awareness' and is only one part of his programme. The rest of his tailored programme will work on improving his trunk control (his back) as this is really quite weak at the moment and there are exercises designed to improve the flexibility of his arms and legs.


After this long assessment we had a break and then Patrick had an assessment in the hydrotherapy pool. This session was brilliant, Patrick is such a water baby and is so relaxed in the water it's lovely to watch. He was put through his paces again and worked really hard but really enjoyed it too. We were shown lots of techniques and exercises to do with him, it's just a shame that at the moment we don't have access to a pool that is warm enough for him, only when we go to Naomi House. You can see that he would really benefit from regular hydro sessions but the provision just isn't there at Poole Hospital. He was in the pool for about half an hour then finished for the day, completely physically exhausted but you could tell his adrenalin was pumping and he had really enjoyed the day. Most children I'm sure would hate to be pulled about by strangers all day but as Patrick loves to be manhandled and thrown about he thought it was great fun!


So with assessment day over we went back to our bungalow and had a relaxed evening ready for an even more gruelling day 2.

The second day had a slightly delayed start as Patrick was asleep until 10:30 but thankfully because the physios were allocated to Patrick for the whole 2 days they could be flexible. They had taken all their findings from the assessment and created a programme of exercises and sensory activities for us to do at home. They have split the programme into 3 sections, 1to1 exercises that should take about 20 Min's daily, 2 person exercises using a therapy ball and roll that can be done every other day and a 10-15 Min's sensory section that Martin can do with Patrick while he is sat in his chair.

They spent nearly 2 hours going over the programme with Patrick and they videoed it and gave us a DVD to take home and refer to. Patrick was really worked hard as he had to do everything twice, once with Dawn and Margosha and again with Mum and I so they could see that we were doing it right. He was so relaxed and easy to work with so it all went smoothly. After lunch they took Patrick to the sensory room to practise his 'tracking' skills using lights. They noticed that Patrick is always distracted by lights and will always stare at the lights on the ceiling so they decided to use this for his advantage and in the darkened sensory room using different flashing toys his tracking and concentration improved straight away. We have used sensory rooms before but never in such a constructive way. They had a flashing tambourine at one stage and Patrick really responded well to that, bashing it with both hands and then turning round to me for reassurance. It was great to see his reactions to different things and spending 2 days just focused on Patrick really helped me see his potential and see that he really understands more than we give him credit for. After another session in the hydro pool after lunch we were finished. All 3 of us were totally shattered, Patrick must have felt so physically knackered but was on such a high that he sang for 2 hours solid all the way home (as did Mum and me!).


The tiredness has caught up with Patrick now and he had the best night sleep ever last night, slept from 8pm until 7am. He has had a couple of stronger seizures over the last 2 days but I was expecting that really considering how hard he's worked.


So, now we are all really excited about the programme and optimistic that it will work for Patrick. He has shown such strength over the past few days I'm sure that as long as we put the effort in and the time then he should really start seeing the benefits. We are booked in for his re-assessment in February and have full support from a regional coordinator until then.

Although Brainwave hasn't given us any big revelations, I had already heard of a lot of the techniques they used, what it has done is shown us how these techniques relate to Patrick. I have several books and catalogues that refer to 'spatial awareness' for example but I've always bypassed these sections as no one has really explained that Patrick would benefit from it. Now it seems obvious, it's just a shame that the NHS hasn't given us all this info before.

Back to normality, whatever that is!

So, we managed to squeeze every last ounce of fun out of the summer holidays with a trip down to the Blue Reef Aquarium with SCARF. It was another great day and we were really pleased that even Patrick was able to take in his surroundings and was captivated by the fish. We have been to many places over the last month where Patrick hasn't really been able to see what's going on, most animals or birds we've seen have been too far away in their cages and Patrick just isn't able to focus and see them. With the floor to ceiling fish tanks we were able to push his buggy right up against the glass and the flickering lights in the tanks highlighting the colourful fish really caught his attention which was really lovely to see. He even had a close encounter with a starfish called Patrick and a giant crab! Isaac has gone back to school into year 1, he's already loving his new class and teacher, it's almost like he was never away. He's also started football training with Burton Youth under 6, scored 2 blinding goals on Saturday so we're hoping he's gonna be the next Walcott. Either that or he'll be a rock star, he's already becoming a bit of a Deva, this morning I walked into the lounge and caught the tail end of him singing to Patrick.
















He said he'd made up a song about Patrick and if I wanted to hear him sing it I had to A) play with him in the playroom at Naomi House later and B) pay him 1p! I tried to haggle but he just said "look Mum, that's what all the other singers do". I'm sure all the professional stars out there let their Mums watch them for free, he'd better not be so tight when he's famous!

Patrick has been a bit poorly again over the last week, just another cold again but it always hits him so hard. He hasn't been having many seizures though which is good although he has had a couple of long ones and we've had to use the midazolam, I'm sure it's just because he's under the weather though. We've had a run of really bad nights with him waking up at all hours coughing or fitting but we're off to Naomi House today for another 3 night break so hopefully we'll be able to catch up on the lost sleep a bit.

I finally plucked up the courage to have all my hair cut off again. I've been growing it out for the last 5 years and it was looking OK but I've spent the last year with it in a pony tail as it gets in the way when I'm looking after Patrick and it took so long to wash and dry it was just a pain. So I went and had a morning of pampering in the salon, had it all cut short and dyed purple with blond highlights, a total change. My brother thinks I'm having a midlife crisis because I turn 30 next year but I've always been a bit of a nutter with my hair. I must admit when I decided to have it done part of me thought that if it all went horribly wrong and I ended up looking like a clown then at least people might stare at my stupid hair and not at Patrick when we're out and about. As Patrick is growing (he's huge already!) you do notice more people staring, I can ignore it to a certain extent but I feel awkward when strangers start talking to Patrick (usually when we're standing in a que for the checkout) and they get no response, I never know whether to explain why he wont acknowledge them when really it's none of their business anyway. I guess as he gets older and it becomes more obvious that he's disabled then people will probably stop trying to talk to him, which is sad in a way but easier also. Martin doesn't cope very well with the staring and tends to let people know in his own subtle way that he finds it rude.

Anyway, I'm off to finish the packing and do the chores before we leave for Naomi House later, I'll probably not get a chance to post for a while now as we're away until Wednesday then I'm off again for a few days with Patrick and my Mum down to the brainwave clinic next Monday. I'm sure I'll have lots to say about that so you've been warned!

P.S Just wanted to share this, Martin came across it on one of his Infantile Spasm groups. Thought I'd post it on here, mainly for the other parents we know that read the blog. xxx

Someone I love relies on me in ways you will never understand. Someone I love endures pain and challenges that break my heart and renew my spirit at the same time. Someone I love is unable to advocate for themselves for things that most of us take for granted. Someone I love will never have the opportunities that every child should have. Someone I love will need unconditional love and support after I am gone - this frightens me to the core. Someone I love encounters pity, stereotyping responses, and prejudice at every turn, because they look, act, and/or learn differently than others. Someone I love has needs that require me to allow "outsiders" to have power and input in areas that should be mine alone to meet. Someone I love will continue to look to me for everything in life long after other children are able to assume a place as part of the world. Someone I love has needs that require more time and energy than I have to give. Someone I love has needs that mean I am not able to meet basic needs of my own. Someone I love has needs that have become the driving force behind major decisions my family makes. Someone I love has changed me in ways I will never be able to describe. Someone I love has taught me about love and about the really important things in life...

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

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.

Tired Bunny....

It's been another long and very tiring week. Patrick has come down with yet another bad cough that has really knocked him out, he's not eating or drinking well and what he does manage to take in 9 times out of 10 comes straight back out so he's pretty low on energy. We took him over to Poole for his hydro-therapy but he was so sleepy that we actually managed to get him undressed and in the pool without waking him up, he just wasn't having any of it so they let him float about for 5 mins then got him out, of course as soon as we laid him down to get him dressed he was wide awake! We then had to take him straight for his hip xray which didn't go too well. They laid him on a couch and undressed him which was fine, then they lifted him and placed a thick wooden board under his back, as soon as they put him down he screamed. He really did cry which made me freak out a bit as Patrick just does not cry unless he is serious pain. The nurses all thought he was just a bit upset by the process and I had to convince them there must have been something that hurt him because I haven't heard him cry for months. They eventually decided that it must have just been the hard board hurting his back so they found some foam to put down to cushion it a bit and he was ok. We've got an appointment with Patrick's Paediatrician in a couple of weeks so I guess we'll get the xray results then.

We braved the rain on Thursdays to support Isaac at his first school sports day. It's not quite the same these days now that it's all non-competitive, they make it more of a team event now, loads of different activities with just one straight running race thrown in at the end. Isaac did very well though, his team won overall and he came 4th in his race.

On Friday we took Patrick over to Poole again, this time for his normal physio, unfortunately when we got there we were told that we should have been informed the session had been cancelled as his physio was off and his OT was nursing a bad shoulder so couldn't work on his exercises. Thankfully it wasn't a completely waisted journey, they let us use the sensory room and they fitted him with his arm splints. For someone who always has his arms bent at the elbow and loves to chew his hands he's actually taken to the splints very well and hasn't moaned at all. They are made of a soft material that is strong enough to keep his arm straight but flexible enough not to restrict him when he's fitting. We're just using them one at a time during the day, hopefully it will be enough to loosen his muscles a bit.

That's about it for this week, Isaac breaks up from school on Tuesday so hopefully the weather will start picking up a bit for the summer. We have heard back from the family fund and they have agreed to pay for Patrick's rain cover which is brilliant as we only posted the forms off on Wednesday!

We'll I'm off to put the poorly little man in bed and hopefully he'll have a peaceful, cough free night.

Busy, Busy, Busy! (Still)

Hiya, it's a hectic couple of weeks with appointments every day for various things. Last Tuesday was a good day with both our new van and Patrick's new buggy finally arriving. The van is mega! So comfy and much easier to drive than I thought it would be, with a lift for getting Patrick in and out easily in his pushchair it makes life easier for me and minimises the lifting and carrying. Isaac loves the van mainly as it's big enough for him to run around in and kick a football in and he gets to sit up by the driver on occasions.

Patrick's new buggy is really nice, I'm not sure it will fit him for too long as they ordered the smallest size for him and it doesn't allow much room for growth (although they assure me it does). The only problem we have with the buggy is that the NHS wont supply a rain cover or any accessories with it so we have to buy our own. Because of the way the buggy is designed a standard rain cover wont fit it so unless we never go out in the rain (impossible in this country) we are going to have to try and buy the rain cover that is made to fit. I have just been given a quote of £207! This includes the price of a retractable canopy/sunshade that you have to buy in order for the rain cover to fit, it's ridiculous really and we are having to apply to the Family Fund to raise some money towards it which is madness but we haven't the choice.

Patrick started his hydrotherapy last Wednesday. It went ok but was a bit frustrating as we have to take him to Poole hospital for the session, it takes us an hour to get there and get parked and he only had 10 minutes in the water! The sessions are supposed to last 20 mins but he started to get stressed out so they got him out early. He was really enjoying it and was relaxed until the therapist kept dunking his face in the water (all part of the exercise I'm sure). He's only been given a 4 week course of hydro as demand is high so I can't really see how 4 sessions of 10-20 mins is going have any long term benefit but we'll see.
On the same day we had to take Patrick over to Southampton hospital for his regular check-up with his neurologist. We discussed his medication, it's still difficult to say whether this new drug is working as Patrick has had some bad days and some good days in no particular order, I'm sure his teething etc has a big effect on his seizures and Fiona said we need to work towards getting him to a point where teething and colds don't effect his fits but we're not there yet. We're going to persevere with the new drug and start taking him off the vigabatrin again in a couple of weeks. We'll be trying the ketogenic diet (that I've mentioned before) in the future, we want to try and wait until he's two which should be ok if he stays like he is at the moment and doesn't get any worse.

Patrick had a really good portage session this week, - when he woke up enough to participate! He is really starting to explore things with his hands which is good. Up until recently if you put his hands on anything to get him to feel it he would show no response, his hands would stay closed and he'd not try to feel it, now if you put his hand on something his fingers open and he'll make an effort to feel it, this is a very small step forward but as we've said before, any progress is good news.

We had a bit of a setback on Friday as we made a call to the housing department to chase up the medical panel's decision after we reapplied recently. It turns out that we were given the wrong information and the whole process of reapplying was a complete waste of time as we already have the maximum points that can be given for medical reasons, the panel weren't able to do anything more. We were led to believe that a panel could look at our case and make us priority or award us extra points but that isn't the case. We have been told that we have 65 points which is a 'reasonable' amount but that there are many families with higher points than us so with only around 2 properties becoming vacant a year, basically we have no chance. The only way we can get more points is if we plead poverty and go back to panel saying that we are struggling financially. Someone from the housing dept wants to come and see us to discuss our finances but to be honest because we're so careful of what we spend our finances are in fairly good order.
We are seeking help and advice from other sources at the moment and know we have a long battle on our hands, we have to keep trying though as we really are up against a brick wall at the moment.
This week is much the same as last, busy, busy but we did have a couple of hours off on Monday with Pam, Patrick's carer round to give us a break. Patrick is having his hips x-rayed tomorrow, this is standard procedure apparently for all children with development problems as your hips aren't fully developed at birth and rely on exercise and movement to strengthen the sockets, as Patrick hasn't been able to do this they need to have a look and see if his hips are ok.

Anyway, it's past my bedtime (which is 8pm these days!) so I'll leave it there and update at the end of the week.

Naomi House

We've just got back from our first stay at Naomi House and we had a really great time. We didn't know what to expect and were really nervous about leaving Patrick in a separate room overnight but thankfully we were made to feel so welcome and Patrick's carer was great and really put us at ease. Patrick was given the 'Duck' room, really nice and bright with doors that opened out onto the garden which was lovely, our accommodation was upstairs, it was just like a good hotel, a family room with en-suite and a shared kitchen that was kept stocked up with essentials like tea, bread and homemade cake! Lunch and dinner were served around a giant table in the dining room so we could all eat together, proper home cooked food and lovely puddings, the diet was definitely put on hold for the week!

Patrick kept us all on our toes and had a bit of a bad day on Wednesday, loads of fits, some lasting as long as 9 mins. He was fine apart from that though, he's got some really big teeth coming through so that probably has something to do with it. We had planned to take Isaac out for the day on Thursday but as Patrick was being a bit unpredictable we just took him out for lunch and spent the rest of the day chilling out in the hydro pool. Isaac loved it at Naomi House, he basically had the run of the place, they have a fully equipped play room with every type of games console, we all tried out the wii fit on Thursday night and discovered that Martin aka snake hips is a champion hula hooper! I haven't laughed so hard in a very long time, we have to get one of those things!

They have a lovely big garden with every kind of ball game and bikes to ride on. They bought a little dog called Tumble round one day and Isaac was aloud to take him for a walk around the grounds (although that was a bit of a disaster when the dog smelt the rabbits and ran off!). Isaac also made use of music room and they both did some work in the art room, Patrick had his feet painted for a footprint picture and Isaac made some money boxes.

We spent a while in the sensory room with Patrick, and we made good use of the hydrotherapy pool on both days. It was really nice for me as although we had a busy few days there, I didn't have to do any chores or cooking and although I did still spend a lot of time with Patrick, Ann-Marie and Lucy who were his carers took care of all of Patrick's needs, they washed and dressed him, fed him and gave him his meds. I didn't have to worry about him at all I just got to spend real quality time with him and Isaac, it was great. It was nice too as Patrick, when he's awake and not fitting is so content and happy so he's quite nice to look after, he was never short of attention and had the carers fighting over him!. We really were able to relax there and we were all made a fuss of, Isaac always had someone willing to play football with him so he was happy and Martin and I were inundated with tea and cakes! The only downside to the whole week was the night time, especially Wednesday night. Patrick had had a lot of fits during the day and wasn't settling down to sleep. I left him in his cot at 8pm and went up to bed but when Martin looked in on him later he was still awake. This stressed me out a bit as at night time there are less staff on so the children don't have one to one care. Patrick was left in his room with an audio monitor on that triggered an alarm when he made a noise. The problem with Patrick is that his fits are silent. If he's awake and making noise then you can pretty much say that he's fine but if he goes quiet then it's likely that he's fitting. I was a bit worried that his silent fits would go unnoticed so I sat up with him, unfortunately he was being a bit of a monkey that night and by 11pm still hadn't gone to sleep. I managed to get one of the nurses to move his cot into a room next door where someone would have good visual on him all night so I could go to bed. When he did go to sleep he had a good night and slept until 6am. Apart from that I can't find fault with anything, and we have asked for another 3 night stay in September and a weekend in January.

This break couldn't have come at a better time really as July is a really busy month for us. Next week is particularly busy, with Isaac's sports day on Monday, the van and Patrick's buggy (yeah right!) arrive Tuesday, Wednesday Patrick starts his Hydrotherapy and we have a Neuro appointment at Southampton. Thursday Patrick has Portage and then he's having his MMR on Friday. Look out for a long post next weekend!

Patrick's world...

A better week this week, it's been a quiet one so less stress all round. We finally got Patrick started on his Rufinamide on Tuesday. The hospital have given us his first months supply and he is on a gradually increasing dose, starting on 100mg (half a tablet) once a day then 100mg twice a day, increasing over the following weeks to 200mg twice a day. It's too early to say if it's working really, he is still having some strong fits, the day before yesterday he had loads of fits, more than usual. They were mostly mild but with a few really strong long ones. Yesterday he only had 3-4 during the day so there's not really a pattern emerging yet.



I thought it was about time I did a full update on Patrick's development so you have some idea of where he's at. It's easy to look at the photo's and see a healthy little boy who happens to have epilepsy. There's a lot more to him than that.

Patrick although seemingly thriving is still very far behind with his development. I read a book recently called 'How to rescue brain injured children' written by the founder of BIBIC which is another Brain Injury clinic in Somerset. Brainwave, the centre we are taking Patrick to was born out of BIBIC when some therapists thought that the BIBIC's regime of 6-8hrs of therapy a day was a bit extreme. Anyway. In this book it has pages where the development age of the child is measured by assessing various abilities, looking at this information, Patrick's development still seems to vary between 0-6 months.

Mobility is one of his worst area's as by 3 months of age a baby should be able to 'creep' on their stomach and move around. Patrick is now nearly 17 months and only just has voluntary movement of his limbs and this isn't very coordinated. Patrick will lie on the floor and kick his legs and flap his arms around like a newborn, he can get his hand in his mouth when he wants to but he can't reach for a toy very well (this is partly due to his muscle tone in his arms). He can roll over, which is progress but can't hold his weight on his arms so being on his front is hard work for him.



Patrick's Motor skills are poor, his hands are particularly tight, and are often clenched in a tight fist. Looking at the book his hands are only just on par with a newborn. He has a grasp reflex but his hands are often closed too tight, he will grasp our fingers but not for long, likewise, you can place a thin object like a rattle in his hand and he'll hold it for seconds before losing his grip and launching it.

His language skills are like those of a 3 month old, he can cry although he doesn't and he can make some vowel sounds 'aaaarrrhhhh' is his favourite at the moment. He is just starting to use 'M' and 'N' sounds but these just come out randomly, he isn't able to communicate what he wants, although his tone changes if he isn't happy so we have to listen to that and try and establish when he's not comfortable or if he's hungry, it's all guess work really.

Patrick's vision and auditory development are both good, he focuses well and will fix and follow on a moving object. He has good hearing and will respond to different sounds, e.g a sudden loud noise will make him jump, and he'll turn his head towards a sound. What is difficult to measure is Patrick's understanding of what he sees and hears. If we showed him a picture of our car, I'm not sure he would understand that it is a car although he goes in the car most days. We talk to him all the time about what we're doing but it's impossible to tell if he understands what we're actually telling him. Patrick just goes with the flow.

This all sounds a bit negative although that wasn't my intention, I just wanted to try and get across how Patrick is besides the epilepsy. Most people who read this blog don't get to see Patrick very often at all and those who do, usually see him asleep! With all the development issues it's hard to imagine that Patrick would be able to have such a character but he does. Patrick is very laid back and is a very happy little boy. He may not be able to communicate his needs but he has the most cheeky smile and finds almost everything amusing. Every morning Patrick wakes up at around 5am (or earlier) and starts the day by singing 'aaaarrrggghhh' at the top of his lungs, he'll have a few fits in between and as I refuse to function before 7am he'll lay there quite happily until we get up. As Patrick sleeps right next to me in his cot at 7am I get him out to give him a cuddle and as soon as I pick him up he starts laughing (this is usually accompanied by a large bout of wind!). He never cries unless he is in pain, and the lightest kiss on his nose can have him in hysterics, he'll lay on his bean bag blowing raspberries and clapping his hands while we run around fussing about, and despite all his problems he doesn't have a care in the world. We are satisfied that we are achieving what we set out to, which was to do all we can to make Patrick's life enjoyable and to help him reach his potential. Well, Patrick certainly enjoys himself in spite of his limitations and with the increasing amount of physio and the introduction of the Brainwave programme later in the year, hopefully we'll be well on the way to discovering what Patrick's full potential is.


So, hopefully that has given you a little bit more of an insight into Patrick's world. We are off for our break at Naomi House on Tuesday, we are looking forward to the rest but are also getting nervous as we're so used to having Patrick with us 24-7. It may sound silly as Patrick is only in a separate room and we're not really abandoning him but I feel so guilty already at the thought of putting him to bed and not being there when he wakes up. I'm sure after the first night we'll be fine and will wonder what all the fuss was about!

Note from Martin

We are delighted to announce the imminent arrival of a new addition to our family - OUR NEW VAN YAY! It is due to arrive on 8th July and we can't wait. Isaac is particularly excited about it and is planning what he is going to have in it for his comfort! Billy has cottoned on to the fact that he could earn a fortune by ferrying his pals about on a weekend. One of the words Gemma used in response to that idea was off. Lol.

Me? I just want a fridge to keep my Yorkie from melting.

Anyone got an old CB radio.................................? Breaker breaker......etc.......!

A frustrating week

Hiya, it's been a pretty long week really with a few disappointments along the way. Firstly, we still haven't been able to start Patrick on his new medication. Patrick started the week pretty badly with lots of strong seizures and we were told on Wednesday we'd get the new meds Thursday, then on Thursday the pharmacist wasn't in so we were told Friday and then we were told it was sorted and that the hospital would be supplying the drug for the first month and that they would call us to arrange it but that didn't happen either. We can't do anything over the weekend so I hope we'll hear tomorrow now.
We STILL don't have Patrick's new buggy! The last we were told was that they had the buggy but were waiting for some supports that would take a week to come in, that was 3 weeks ago! Every week they say they're due but I think they're just fobbing us off. We've just found out our new Van is ready for delivery, it amazes me that they have been able to custom fit a 6 seat Renault Master from top to bottom with various pieces of equipment, a van that was ordered a good few weeks after his pushchair and the van is ready but the pushchair isn't, it's ridiculous really.
Patrick had physio on Thursday, unfortunately it wasn't the best session as he was really sleepy from a few bad nights fitting. He was examined by his physio and OT and his portage worker was there too. They're not too happy with his limbs, his legs and his arms are a little tighter than before, even though we've been working on them doing lots of stretching exercises. I'm pretty sure that his seizures don't help. When he has a strong seizure his arms and leg muscles contract and his arms bend fiercely at the elbow and his legs raise off the ground. As his fits have been quite bad for the last month it's got to have an affect. They have made the decision to have some arms splints made for him in the hope they might straighten his arms a bit. I'm gonna have to take him in some time over the next month. They let us take home a large therapy wedge to lay him on and they're going to put his name down for a corner chair that will help him sit in an upright position as he is showing more potential in this area. He starts a 4 week course of hydrotherapy next month that will hopefully help loosen his arms and legs a bit, he only gets about 20 Min's in the pool once a week though so I'm not sure how much good that will do.
We've taken the decision to enrol Patrick onto the Brainwave programme. This is an intensive programme of therapy aimed at speeding up the development process in Brain Injured children. They do this by designing a programme of exercises and activities that we can practise at home. It works on the principle that with enough repetition the brain will basically start retaining information and dormant brain cells can be 'woken' and used to learn these new skills. They cover all areas of development and the programme is totally structured so we know exactly what to do in what order and why. I think that this approach although had work (we have to commit to about 10 hrs a week) will hopefully work for Patrick. We have an appointment booked in September for his 2 day assessment (we get to stay down in somerset for a couple of nights) they will use that time to examine him and come up with a programme, we will then have to take him back every 4-6 months to be re-assessed. I have added a link to their website if anyone wants more info, just look at the list of links on the bottom left of the page.

Patrick is still obsessed with eating himself! He has lots of little cuts on his hands where he has chewed them and has taken large sections of skin off his fingers, he must have tactility problems because he doesn't seem to hurt himself when he's chewing and he has some sharp teeth! We've tried lots of things to stop him doing it or at least to protect his fingers from damage, plasters and socks on his hands but these just get wet and make his hands sore or they fall off. I have just ordered him some baby Ski mittens! I'm hoping that as they are padded and waterproof they may just stop him doing any more damage. It's a bit warm for gloves and a shame to have to cover his hands up but we need to find something that works.

That's about it really, we are a bit quieter next week and then the week after we're off to Naomi house for a few days. I'll let you know if we do start Patrick on his new meds.

Hope everyone is well, Love you lots, Gem xxx

We did it!!!

Today was the day of the Charity Fun Run. Isaac and I completed the 3km run and Isaac managed to raise a massive £550 for the Childrens Trust Charity, not bad for a 5 yr old. Isaac actually ran most of the way round, only stopping for a little walk here and there, I had to struggle to keep up with him most of the way!

We had a great day and thank you all for supporting us xxxx

New Drug

Hiya, been another busy couple of weeks and Patrick's seizures have been unpredictable but frequent, with some stronger than others. We took Patrick to see his neurologist and have now agreed to try out a new drug called Rufinamide. This drug is very new to the market and has only been trialed on children aged 4 and over who have Lennox-Gastaut Syndrome (a particular type of epilepsy) which Patrick doesn't have but his seizures have many of the same characteristics. At the moment we are waiting for Fiona to finalise the details and give us the prescription as this drug has literally only just been made available and isn't even in the books yet! We'll keep you updated as and when we start the treatment but keep fingers crossed.

Changing the subject completely, most of you will have seen the article about our gorgeous babies in the local news, we've been banging on about it for the past week! As you can imagine we were so proud and completely shocked that their story made the front page! I only contacted the Echo in the hope of just getting Isaac's name mentioned, didn't even expect them to print a picture so I embarrassed myself when I walked into Sainsbury's, saw the paper and shouted 'Oh my god that's my kids!'. We can't believe the response we've had to the story, in the past couple of days since the paper was printed the amount donated online has doubled and to date he has raised £522 for The Children's Trust, one particular lady donated £50 just off the back of the article. We have been asked to take Isaac along to meet the representative from The Children's Trust at the event on Saturday so they can thank him personally and his Headteacher is going to make a fuss of him at their school assembly today. The whole idea of me contacting the paper was to have the focus on Isaac for a change and let him take the limelight for being such a special boy, that has definitely happened and for that I thank everyone who has sponsored him and everyone who have sent such warm messages. I'm sure there will be lots of photo's of the day to follow. xxx

Update

Hiya, had a really good trip to Naomi House last Friday. We were given a tour of the hospice and met several members of staff who all seem lovely. Naomi House is quite different to Julia's House, it's more like a private hospital. It's a great building in a really lovely location, surrounded by 'telly tubby' hills. All the children have their own room on the ground floor with doors that open onto the garden, and the family rooms are just above on the first floor. Patrick would have 1to1 care during the day and over night they have about 4 staff to up to 10 children but all the rooms have audio monitors. As Patrick has silent fits they said they would make sure his room was opposite the carers station so they could see him. We have been allocated 14 days that we can use this year although they are already pretty booked up. We are hopefully going to have our first stay there on 1st-3rd of July. We have asked for a 3 day stay as I think as it would be the first time leaving him (even if he is only downstairs) it will take us a couple of nights to relax enough to get a good nights sleep. We are going to have to go midweek and take Isaac out of school, they haven't got any weekends available until October but that shouldn't be a problem.

Had a good weekend, myself my Mum and Aunt did our 'Race for Life' on Sunday. Thankfully the rain did just about hold off and we managed to finish the course in 50 minutes which we were pleased with. We were a bit embarrassed to have been over-taken by a chicken, a giant bra and a lady on crutches but we managed to raise about £200 between us so we're happy.

Unfortunately Patrick hasn't had a very good week. His fits have been getting a lot stronger again. Last night he was particularly bad and from 2:30 - 4:30 he was awake and fitting quite badly one after the other, not really having time to recover in between. We gave him his madazolam which is his emergency med which did stop him fitting but it didn't last long and he was fitting again within 20 minutes. He did eventually manage to drop back off to sleep but was so exhausted this morning that after having his breakfast he slept right through until 2pm. I have spoken to his neurologist Fiona this morning who has suggested we go back up a little bit with his Vigabatrin, that will let us see if weaning that has made him worse and I have arranged an appointment with her for next Wednesday when she'll prescribe him something new.

Keep fingers crossed for him over the next few days, I'll let you know if anything changes.

Lots of Love xxx

P.S The photo above isn't us being cruel, we took the boys to a community fun day recently but Patrick slept through it. I always like to include Patrick when I'm taking photo's (I have a big collection of pictures of Patrick asleep in his buggy in various locations) and we didn't want him to miss out on the fun!

Thanks xx

Hiya,

Just wanted to say a massive thank you to all those who have sponsored me for 'Race for Life' this Sunday, hopefully the rain will hold off and we'll have a great day.

Just to update, Patrick is over his chesty cold and for the last 2 days has been on top form, really alert and happy and only having the odd mild fit. This further proves what a difference it makes to his seizures when he's a bit under the weather, last week his fits were strong and long. We have been reducing his vigabatrin and he's now only on 3.5m twice a day so I think it's safe to say that the reduction isn't having a negative effect. I'm taking him in for his chicken pox vaccination tomorrow, they couldn't do it last week as he was too poorly but I got him some anti-biotics that have helped clear his chest.

We're still having trouble getting his new wheels, he was supposed to get them last Friday but yet again we were told his buggy hadn't arrived, the assessor is off this week so we have to wait until Monday to find out when we can have it.

After a visit from Patrick's social services OT last week we are now having re-submit our application for housing. The OT has had to close Patrick's file as we haven't got room for any more equipment which is frustrating, she sent a letter to the housing dept who have told us we have to fill in a whole lot of new forms and give more details about Patrick's needs and then they might give our file to a medical panel who would decide if we could get put at the top of the list to be re-housed. The whole process just adds more time to the wait and we're starting to really struggle now, Patrick is just getting bigger and heavier and more difficult to handle.

I had a really nice e-mail from across the globe yesterday, a woman got in touch who has a nephew called Bryce who is 10 months old and has epilepsy and loss of white matter, very similar to Patrick. It's always nice to hear from other families with special children, it always amazes me how our story can reach so many people and touch so many lives.

Anyway, lots to do, no time to do it!

Take care, lots of love

Gemma xx

A busy few weeks

Sorry it's been a while since the last post, the last few weeks have been pretty hectic, nice hectic though I'm pleased to say. The weekend before last we had a visit from Martin's sisters, Mary and Angela and Martin's nephew Dan and his gorgeous daughter Honey. The weather was fabulous so we made good use of it and had a day out at the local food festival followed by fish and chips on the beach, good old fashioned family time, lovely. We were also able to set up Patrick's new 'Waterway' pool in the garden for the first time. It took him a few minutes to get over the initial shock of being plunged in the water on his own but then he seemed to relax and just laid back and floated in the water, pushing himself off the side every so often. The pool is supposed to help him build up his muscles and encourage movement, I think if he uses it regularly enough it should work but unfortunately he's been full of a cold since that weekend so we've not put him in it again yet.

Patrick had another good physio session last Thursday, he saw his physio and OT who are both pleased with his progress. They said that his sitting position is good and he's showing much more potential than they had previously thought he might. However, they are worried about his elbows as they are really tight and need a lot of work to loosen them up; we have to stretch his arms right out several times a day which is quite uncomfortable for him but if we can't improve them with the exercises he may end up needing splints which wouldn't be nice. Patrick has now been given a standing frame to use at home. They have managed to hunt out one that can be folded away which is better as we are so limited on space at home. He should be using the frame for about an hour a day, at the moment he manages about 20 mins before getting the hump so we'll build him up to an hour over time. We had a visit from Anne, Patrick's new social services OT, yesterday who has had to close his file for now because although she could get us extra equipment for Patrick, we just don't have the space to accommodate any more.

The weekend just gone was an extra special one as we went to Warwick for my Dad and Allison's wedding. We made a weekend of it and went up on the Friday. It was a bit of a nightmare with everything we had to take; we took Patrick's Bee chair and his pushchair and he had one little suitcase just for his meds! Anyone seeing us arrive would have thought we were there for the week! Anyway, we had an amazing weekend, the wedding was fabulous and both Patrick and Isaac were on best behaviour - Isaac was a ring bearer with his cousin Owen and they did a smashing job. The only downside to the whole weekend was the fact that due to his cough and teething Patrick's epilepsy was quite bad, during the wedding service he actually had a seizure that lasted 10 mins, so we were a little on edge the rest of the day but he was OK.
On the Sunday after the wedding we went to visit our friends Karen and Gordon who only live about 30 mins from Warwick. They have just built their son Luke a little sensory room so Patrick was able to try it out which was great.

This week has been fairly quiet so far, Patrick was supposed to have his chicken pox vaccine on Monday but because his chest is still bad they wont do it so we've re-scheduled for next Thursday. We have Martins Dad coming down tomorrow for a few days, it's half term next week, we've not got anything planned but hopefully the weather will stay nice and we'll be able to give Patrick's new buggy a good run out (we should be picking it up this Friday). We are going to visit Naomi House next Friday as we finally got the news that Patrick has been accepted by them. We get 14 days pro-rata to use over the course of the year, Naomi house is in Winchester and does overnight respite care where we can leave Patrick in a room with the carers while we have use of a family room upstairs so it's not like we're leaving him completely and at least we might finally be able to get a couple of nights sleep. I'll let you know more after we've been there.

Anyway, I think that's about it for now, sorry it's been a long post.

Hope everyone is well and thank you all for your continued support and good wishes.

Lots of Love xxx

Patrick's New Buggy

Had a really frustrating few weeks trying to get hold of Patrick's new pushchair. We should have had it by the end of March but were told the manufacturers were holding things up. We then found the buggy had been delivered to the wheelchair clinic two weeks ago but had to be assessed and yesterday we were told that the buggy was no good and they wouldn't let us have it! You can imagine our frustration, especially as Patrick has seriously outgrown his normal pushchair and it's getting harder and harder to take him out.

Anyway, they invited us down to the clinic today to check out a different buggy called a 'Bug' (pictured above). It's not quite as flashy and 'normal' looking as the one he was getting but this new one is actually much better. The whole seat looks much more comfy and supportive and it just looks like a more sophisticated, expensive bit of kit. We're a bit annoyed that we weren't offered this one originally but at least he's getting one now and it should only take 2 weeks to come through. We've been lent an old one in the meantime which is a bit 80's looking and has obviously had a lot of use but it's only for a couple of weeks so we'll put up with that.

The morning after...

It's been a strange 24hrs, yesterday was such a roller coaster of emotions. I spent the morning visiting my late Grandma's grave to place flowers. I shed some tears and said some prayers for some good news but didn't get my hopes up. As we made our way to the hospital for the results I felt physically sick all the way, I have no finger nails left at all! I wouldn't say I was pessimistic but I was ready to hear some bad news. When the Dr said those magical words 'he hasn't lost any more white matter' it took a few seconds to process the news, when she went on to say that unusually it seemed that his brain was desperately trying to repair itself I nearly cried. I have never felt so relieved in all my life, I also felt so proud of our special, strong, amazing little boy. He is such a fighter and just an inspiration.

It was a strange evening, although we are obviously all thrilled with the news it was almost an anti-climax. That may sound strange but I suppose trying to analyse it, we have always been very positive and happy, even with the thought of losing Patrick in the back our minds, and now we still feel positive and happy. So not a lot had changed.

Today I woke up with a renewed energy, I feel 'up for it' (whatever 'it' is?!). As I walked Isaac to school the sun wash shining and I had a spring in my step, I looked at Isaac with a smile as one thing that has gone is the fear of having to explain to Isaac why his brother was dieing. That sounds horrible but throughout all of this, as soon as we were told originally that Patrick's condition was terminal that has been my biggest fear, Isaac adores Patrick and I had no idea how I would deal with Isaac if Patrick did deteriorate. For now I don't have to worry.

As I'm writing this I'm welling up and the sense of relief is growing stronger, I guess the good news is slowly still sinking in. I haven't told anyone this but over the last 6 months I have had many nightmares of having to plan and attend Patrick's funeral, morbid as it may seem that has been our reality. That reality has gone and that is the most wonderful feeling. I have always been too scared to look to the future, choosing instead to live each day at a time, now I can look to the future and still see Patrick in it, smiling away. That's done it, the tears are out! I think I need a good cry anyway.

I don't think we will ever lose our fears completely, Patrick still has a long hard journey ahead of him, without knowing more about the damage to his brain controlling movement, we don't know how well he might progress and his epilepsy is still a danger but instead of looking for a sign he's losing skills I can relax and look at signs he's gaining them.

Martin and I have both said this morning that however relieved and happy we are at our news, we both feel a sense of guilt for all the other parents we are in contact with who are waiting for some good news themselves. With any luck their good news will come, I was thrilled to read Jude's blog this morning to see that he had smiled, twice!

Anyway, I'd better put this renewed energy to some good use and go and do the washing up, I'm not sure how long it will last!

News just in...............

Hi Everyone

We have just got home from the Hospital and have got Patrick's MRI results. Guess what - he passed!

The short answer is that it is good news basically.

There is no sign of further loss of white matter that they can see which is brilliant news for us as you can imagine. It also looks like the brain is trying to regenerate some areas where there has been loss and generally his brain has matured and grown. That is also very good news.

The ratio of grey to white matter is still not as it should be but again, no signs of it worsening and they have now been able to identify that the area responsible for his limbs (motor and nerves) is lacking in growth and structure. While this is an area of concern it is also good that it has shown on the MRI as investigations can continue in that area now. The part of the brain that links both sides has shown great progress in growth and structure/maturity too. This also controls or has an affect on his co-ordination.

The structure of the outside of Patrick's brain is also showing great improvement and has all of the characteristics that is expected. All of the bumps, hills and valleys as it were, so we are really pleased about that too.

All in all, a great result for Patrick and wonderful news for us, his family. We still don't know what that means for his future but we see that future as being far less bleak and a lot less scary.

We are on cloud nine at the moment and are trying to take in the news fully but rest assured - we are very happy bunnies right now. What a great kick-bum day we are having!

Love to everyone from Patrick and his roadies

xxxxxxxxxxxxxxxxxxxxxxx

Rolling over!

Just a bit of video footage we took of Patrick rolling over, he's a very clever little man. xx

No news yet.

Unfortunately there's going to be a bit of a delay in us getting Patrick's MRI results. When we turned up for our appointment at Southampton today we found out Patrick's neurologist had been trying to contact us all day to let us know she hadn't been able to view the scan results yet. She is now off for a break so we've arranged to go back in May when she's back and has had a chance to look at them.
Fiona was able to give us some good news though, Patrick's EEG results showed an improvement. Every previous EEG has shown seizure activity and constant 'background activity' that they haven't been able to explain, but from what we understand any kind of background activity would have an effect on Patrick's development and ability to focus. What they can see now is that Patrick's EEG is nearly 'normal' but he still has bursts of background activity. We can only assume that this improvement is due to his medication and the fact that his seizures are now fairly under control. Having said that, Patrick's seizures have been getting stronger over the past week, I don't think that it's because we are reducing his vigabatrin as I believe they were starting to get a little stronger before then. I actually think there's been an improvement since reducing the vigabatrin, Patrick has been really interacting and has been more vocal over the past few days, he's a happy little boy at the best of times but he's been even more so the last couple of days, even Fiona managed to get a giggle out of him today, she said it was the best she's seen him. We've decided to up his Carbamazepine a little bit to see if that calms his seizures again so fingers crossed.

Anyway, it's been a long day so I'll keep it short and of course I'll let you all know when we have the MRI results. For now we can relax for another couple of weeks before the nerves start to kick in again.

Meet the Patersons

Well, we finally got to meet the Paterson family who travelled down from Staffordshire to see us over the weekend. I'd met Karen via a website called 'contact a family' that puts you in touch with families in similar circumstances and we instantly hit it off and have been phoning each other regularly for the past few months, it's really nice to be able to have a moan and a laugh with someone who totally understands your frustrations. Anyway, Karen is married to Gordon and they have Ellie who's 4 and little Luke who is 15 months. Luke is very similar to Patrick as he too has severe Epilepsy/Infantile Spasms and developmental delay. And like Patrick he's totally adorable and very snuggable!

It was a really nice weekend, we took the kids to the beach on Saturday and to the holiday park disco in the evening and then went to Christchurch quay for lunch on Sunday, so lots of fresh air and family fun, just what we all needed.

Patrick goes global!

It's official, Patrick is now famous in the USA! Well, maybe I slightly exaggerate but a very great lady called Beth who's son Ben is Epileptic took part in a charity walk for Epilepsy and as you can see from the photo's Patrick got a mention on her t-shirt, (on the right side of shirt) how amazing is that?! Beth raised $2500 dollars for Epilepsy research which is a fantastic achievement. Martin met Beth online through one the Infatile Spasm news groups he's a member of, these groups are a great way for us to find out about other people's experiences, medication and new equipment eg. The Waterway Swimming sytem mentioned in a previous post. The pictures below show Beth's t-shirt which she used, in her own words, to 'Honour' all of our children. There are many kids from the USA mentioned on the shirt as well as a number from outside the US too. One of the pictures shows Beth's gorgeous son Ben and another little Infantile Spasms Champ - Rohan! Well done to everyone who took part in the walk - you are all Champions in our eyes! This is a good reminder that we are not alone in our journey alongside Patrick and there are other kids dealing with similar challenges to his. Well done Beth and thanks from all of us here, especially Patrick xxxxxx

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Latest News

Hiya, had an appointment at Southampton Hospital today with Dr Fiona Goodwin, Patrick's Neurologist. It was just a check up so there's not lots to report. Patrick was pretty sleepy when we got there so although Fiona was able to see him awake, he wasn't too responsive and he seemed to drift off into an absence seizure at one point, this is something we've seen before but usually only when Patrick has just woken or is really tired. Patrick had his weight taken, he's currently 11.6kg (25lb) so he's quite a heavy lad. He also had his head circumference taken and this came out at 45.3cm which is well below average. Apparently his head has grown from last time but it is significantly smaller than what it should be which is usual in a child with such major development problems and it indicates that his brain isn't developing normally, which we already know really.
We're going to withdraw the Vigabatrin but we'll do it very gradually, the last time we withdrew it it seemed to have an adverse effect on his seizures but he's so stable at the moment and we know that the clobozam and carbemazepine are working so now is probably the best time to get him off it.
We also discussed Patrick going on the Ketogenic diet, this is a fat based diet that is a great commitment but it is proven in a lot of cases to reduce seizures in children like Patrick. In lots of cases if the diet is working well it is even possible to withdraw all other medication. It looks like the Ketogenic diet will be the next course of action if/when his current meds stop working.
There's been another change to all our appointments now, we're taking Patrick back to Southampton on Monday for his EEG, then Tuesday for his MRI and we'll be going back on Thursday for the results.
Dr Goodwin is still waiting for some genetic tests to be processed but as before the few results she has had back have come back normal. She is now going to refer us to the Geneticists who may be able to get the tests done quicker and they may have other suggestions.
Also, it may be possible to get Patrick the chicken pox vaccine on the NHS, Fiona will speak to our GP and try and arrange it.

That's about it really, of course I'll be updating next week when we have the results of his MRI.

Take care, lots of love, Gemma xxx