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.