Christmas Wishes xxx

Hiya,

It has been a strange and eventful year for us as you all know. I can't quite believe how quickly this year has flown by. When you look back to the beginning of this blog and see all that has happened, it's quite unbelievable how we've packed it all in. We've certainly had plenty of tough times but plenty of smiles along the way.

I would like to take this opportunity to say a big thank you to all those involved in any way with Patrick's care. Without the support from special people like Fiona (Patrick's Neurologist) and Janet (our support worker) and the many others that help us along the way, we really wouldn't be able to cope.

I would also like to give a massive thank you to my Mum, Jackie who has been a huge support to us all from the start. Mum, I love you loads, thanks a million.

2007 has been a crazy year and 2008 looks set to be just as busy, who knows what lies ahead. All we can say is that we will continue to stay strong and keep smiling no matter what.

As always we will continue to up date you as and when we have any news, we get Patrick's latest blood results on 3rd January so look out for info soon after. Today Patrick is stable, his seizures aren't too bad although it looks like he is having 'facial' seizures again since we got him off the carbemazepine. We will speak to Fiona when we can and try and get these under control again.

Isaac had a fab 5th birthday yesterday, he has been an absolute star throughout the year and is really looking forward to Christmas.

So, with all that said, have a fabulous Christmas and a wonderful new year!

Welcome to Holland

Hiya,

Found this on the internet and thought it summed it all up pretty well...

"Welcome to Holland"
By Emily Perl Kingsley, 1987. All rights reserved.

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very very significant loss. But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Poorly Boys

Hiya,

I am fed up this week! Both Patrick and Isaac have been really poorly for the last couple of weeks. Isaac has missed loads of school, first with a tummy bug and now he has a stinking cold with a killer cough that at it's worst makes him vomit, poor thing.
Patrick is suffering with the same illness, he's had a tummy bug for over a week now and has also got a really bad cold and he also has some kind of eye infection as well! He's really feeling sorry for himself as his seizures have been quite bad again over the last week. I guess as he has diarrhea he's not able to absorb his meds properly. We're a bit worried really but have been in touch with someone at Southampton who said just to keep a close eye on him and use the medazalam if we need to (emergency anti-convulsant). If his tummy bug doesn't clear up soon we may have to consider taking him into hospital so they can give him his meds another way.
We're hoping to send Isaac back in to school tomorrow as he has his nativity on Thursday and he's missed loads of rehearsals already. He also has his birthday party to look forward to on Saturday so hopefully he'll be feeling much better by then.

Anyway, we're generally enjoying the festive season and have all our decs up and got the Christmas shopping sorted.
Hope everyone else is fine and not struck down with the lurgy like we are!

Merry Christmas, Lots of Love, Gemma xxx

Here is a special clip of our clever little boy feeding himself for the very first time. This is a major achievement for him as he usually cannot hold anything or make coordinated movements so we were both in tears and very proud. He's a little bit shaky and unfortunately took too big a bite and threw up but we can work on portion control another day!

Patrick's Tests

We spent the day in Southampton hospital yesterday so Patrick could have his special eye tests and so that they could take lots of blood and urine samples from him (poor thing).
We are pleased to be able to report that his eyes are fine. The tests they performed were very complex, they had to attach some probes to Patrick's head and sit him in front of a TV screen showing black and white squares that he had to focus on. Unbelievably Patrick was so tired that he slept through the whole test and the poor assistant had to hold Patrick's eye lids open! It's amazing what technology they have as they were able to tell exactly how Patrick's brain processes what his eyes can see and thankfully he can see really well. They also looked closely at his retina which was more important for diagnosing his condition. They did this by attaching probes just under his eyes and then holding flashing lights in front of him in various colours and speeds. The Dr was really pleased with him and said that she could see nothing wrong with his eyes at all and that they could now rule out several nasty degenerative conditions including Battens disease. The flashing light test also proved that his epilepsy isn't triggered by flashing lights which is handy to know.

After his eye tests we had a consultation with Fiona who explained that they are now going to send off his blood samples and urine to be tested for various other conditions. I did ask what exactly they were looking for and Fiona proceeded to read out a very long list of Metabolic, Genetic and other disorders and left me none the wiser! What I did understand is that the majority of these tests have been done before and had negative results so they are just double checking and there are several things they are testing for that his symptoms don't quite match with so are unlikely to come back positive. There are a group of Genetic tests that haven't been done before so they could show something. We have to wait until the 20th December for the results so we'll let you know if they find anything.

As far as Patrick's seizures go, they're still pretty stable at the moment. He has had a rotten cold and a temperature over the last few days so he's had a couple of big ones but in general he's much better than before and is only having the odd jerk, more of a muscle spasm than a full seizure.

As always I'll let you know if anything changes over the next few weeks, hope everyone is well and looking forward to Christmas as we are.

Take Care, Love Gemma xxx

Meds Update

Hiya, Sorry it's taken a while to update, I've been waiting to see if his new meds work so I had some definite news to report.

So, I took Patrick to see his neuro a week ago last Monday. When we arrived for the appointment he was fast asleep so I deliberately woke him up in the hope that he would have a seizure (sounds awful and I felt very guilty but it is always better if his neuro can see him fitting as it makes it easier to prescribe the right drugs). Thankfully he did have one of his bad seizures so she was able to get a good look at him close up and see that we weren't over exaggerating the severity. Anyway, Fiona has now introduced a new medication called Clobazam into the mix, he started off last week on a very low dose and it will be gradually increased over the next few weeks. I have to say though that within a few days on this medication his seizures have got better. Instead of having bad ones at any time for the past 4 days he has just had one during the day and one at night so that is a massive improvement. I don't want to tempt fate but yesterday and last night he didn't have any 'proper' seizures at all, just a few light jerks. If he carries on improving as the dose is increased we may get him seizure free which would be fantastic as he hasn't gone a full day without fitting for 6 months!
Not having seizures has a massive effect on his personality, yesterday he was in a great mood all day and when he's happy he's noisy! He is still limited in his communication but when he's happy he squeals with excitement at the top of his voice! He'll lie on his play mat kicking his legs and waving his arms and just makes noise. He does this at 6 o'clock in the morning when he wakes up but you can't feel grumpy with him, he sounds so happy to be awake you just can't help but smile, he's the best alarm clock I've ever had! There's no volume control with Patrick at all, he just does loud, you can't hush him as he doesn't understand that so yesterday in particular our house was full of noisy happy sounds, it was great!

Anyway, I've got to go take Isaac to school and start the busy day, will update more at the end of this week. xxxx

Seizures

Hiya,

Patricks seizures have changed again and unfortunately seem to be going back to the Spasm type seizures that are quite distressing for him. We have spoken to his Neurologist and are taking him in to Southampton tomorrow (Monday) so she can have a look at him and sort his meds out. We have been weaning off a couple of meds over the last month so this is probably down to that, we may end up having to stay in for a couple of days while they try and get on top of his seizures again, we'll let you know how we get on tomorrow.

In the meantime here's some more pictures of our baby boy in his new chair! We have been leant this new equipment temporarily until social services can issue him with his own more permanent one. This one is a little too small for him really but it's great as it gives him full support and helps him sit up properly which will hopefully help towards strengthening his muscles. He also has a new bath support which is a great help as bathing him was getting very difficult as he is so big and heavy.

Test Dates

Hiya, just to let you know that we have the date for Patricks eye tests and blood tests. We're taking him to Southampton on 29th November so we'll not have any new news until the end of the month. Patrick is still amazing us every day with his strength, he actually managed to hold his bottle the other day which was a great achievement. His seizures aren't too bad at the moment although they seem to be creeping up in strength and number again so were keeping a close eye (nothing new there!).

Thank you for all your support, we have received several kind messages that really mean a lot. We are coping quite well really under the circumstances, we are still able to stay positive and are carrying on as normal. We're not in denial, we have fully accepted what may lie ahead but we're taking each day as it comes and today Patrick is doing OK so we're OK, if that makes sence.

For those who gave Patrick money for his christening, I have bought some fun things for him. He now has a new musical vibrating rocking chair, a giant multi coloured bean bag to nap on and a soft foam play mat so thank you very much. Our lounge now looks like an indoor play centre but who cares?!

Anyway, I'll leave it there as Patrick is sitting on my lap waiting for the next chocolate button, he's not impressed at the long wait between each one as Mummy is distracted!

Christening Pictures

Mummy, Daddy and me

My parents and Godparents with my brother Isaac and I. (My biggest brothers were camera-shy!)

Mummy will be adding more photo's later

Some Sad News

I'm really sorry to say that this blog entry is not going to be a positive one so for those who might be reading this while at work, you may want to save it 'til later.

As you know Patrick had his MRI scan on the 18th October. We have now received the results and have a much clearer idea of Patrick's condition.

You may remember back when this all started that Patrick had an MRI done at Poole hospital. That scan showed that everything was normal apart from there seemed to be a little less white matter than there should have been for his age (White matter coats the brain and protects the nerve fibres). At the time they said that this news wasn't that significant as he was so young and the difference wasn't really that much to worry about. They have now been able to compare his latest MRI with the one they took back then and unfortunately the results aren't good.
Not only is there less white matter than there should be but it seems that between the 10 week MRI and now, he has actually lost some white matter. This indicates that Patrick has a degenerative brain condition. What this means is that they think that over time Patrick will lose more white matter and gradually lose motor skills and his development will basically go backwards. Patrick has to go back to Southampton for further tests over the next week to confirm all this, they need to look at his vision processing (how his brain interprets what he sees) and also take blood and urine samples. They are confident that they will be able to properly diagnose his condition and then hopefully we will have more information about what to expect. If they don't get all the answers at Southampton he may end up being referred to Great Ormond Street. We have been told already though that whatever the diagnosis, it is highly unlikely that there will be a cure or any treatment that will stop the condition, and therefore this condition would be terminal.

As you can imagine we are totally devastated by this news and were really shocked. Patrick has been developing really well recently and seems to be gaining skills - not losing them, even Fiona his neurologist said that she was really surprised at the results as she has seen him several times over the last month and can also see that he is getting stronger and more responsive.
Fiona did measure his head while we were there on Friday and unfortunately his head hasn't grown much at all over the last 4 months, this is also an indication that his brain isn't developing and growing as normal.
We can only hope at this stage that he'll prove them all wrong and somehow he'll be fine.
The weeks ahead are going to be difficult as we find out more and we'll of course keep you all as updated as we can.

For now we can only take each day as it comes and continue to try and work at bringing on his development with lots of physio and love. We are trying to carry on as normal and be as positive as we can be. This news changes nothing and everything all at once, it changes nothing in the way that we will care for Patrick and stay strong as a family but it changes everything in terms of the services we will now get access to and the respite care we will be able to use. We are obviously concerned about how this news will effect our other children, in particular Isaac who we will try and protect from the worst as much as possible but also Ashley and Billy as they are old enough to fully understand what may lie ahead.

For those of you who joined us for Patrick's christening, thank you for helping to make it such a special day. I hope you can understand why we didn't tell everyone the news until now, we didn't want Patrick's day to be a sad occasion. We are more determined now than ever to make sure that whatever happens in the future, we make lots of happy memories along the way and Sunday was one special day that meant a lot to all of us.

As you read this and digest the news, especially if you have children yourself, take the time to reflect about how precious all our children are, every hug, every smile and every giggle is a magical moment to cherish. It is so easy to get complacent and take the smallest things for granted. One thing we have learnt is that life is far too short and we all need to make that little bit more of an effort to spend time with family and friends.

Keep your eye on the blog, we will be updating it soon. xxxxx

Quick Update

Just a quick one to let you know where we are at the moment.

Had an appointment at the beginning of last week with Patrick's neurologist at Southampton. We took some video footage of Patrick fitting to show her as his fits have changed slightly and it was her opinion that Patrick does not have Infantile Spasms but is in fact having 'Complex Partial Seizures'. The main difference in the physical appearance of his fits is that there's a definite build up, first his arms and hands start fiddling (looks like he's playing the harp) and his breathing gets a bit deeper. Then he will stretch his arms and legs out and hold it for a second then he repeats this for about 5 mins.

I guess if Fiona (neuro) is right then it could be good news for Patrick as Complex Partial Seizures are far more common and easier to control. We have been given a new medication called Carbemazepine, it does make him sleepy so we're weaning him on to it slowly and wont really see if it's working for about another week. He is still taking the others but we'll begin the process of reducing those soon. We're a bit stressed out with it all at the moment as this new medication sounds great but unfortunately it does come with the risk of making him worse. If his neuro hasn't got it right and he is in fact having Infantile Spasms, this particular med could actually work against him and make his seizures worse. We are closely monitoring him and timing his seizures at the moment until we are confident that isn't the case. He is at the moment still having around 12 fits a day including 2 during the night so it is still a lot to deal with.

Development wise he is still doing well, still enjoying being thrown about and he does seem to be getting a bit stronger in his legs. He has no interest in holding anything at the moment and we're still no closer to getting that head control but he's happy, which is good enough for us. Patrick's physio and occupational therapists are working hard with him and have been giving us a lot of support, with that support comes equipment and so far Patrick has a special chair to sit in and 'corner' table to use all to encourage his head control. This is great but anyone who has visited our house will know, we are a little over crowded to say the least so new equipment is fab but Patrick is taking over the house! There is talk of Patrick needing a special bath support as bathing him is becoming increasingly difficult as he's so big but floppy (weighs 20lb now!) that will be a major problem is our house as these supports take up half the bath and are fitted in, so he'll be alright but the rest of us will have to make do with a cold hose down in the garden I think!

I took Patrick along to an under 1's club last week. It's the first time I've taken him to anything like that and if I'm honest I found it really hard. Patrick was the oldest baby there with average age being 3 months. It was shocking to actually lay him side by side with these tiny babies and watch them rolling around trying to escape when all Patrick can do is lie there and smile. He does win the prize every time for most infectious laugh though and is the most good looking baby so what he lacks in ability he more than makes up for in cuteness!

Anyway, I'm gonna leave it there, it was supposed to be a short entry as we have a really hectic week this week. Got Portage starting tomorrow (a kind of development through play session), Physio and OT on Thursday and on Friday I am meeting a woman who has an 11 yr old disabled daughter with epilepsy so that should be interesting. I am also in touch with a woman from Southampton who's 2yr old son has a very similar condition to Patrick and I will be hopefully going to visit them soon so that may give me a better idea about what the future may hold.

Everyone else is fine, Isaac's loving school and we were proud parents last week at his Harvest festival assembly that he had to sing in, bless.

Hope everyone is ok, love to all, Gemma xx

A Good Week!

Just a quick one to let you all know what a great week Patrick is having. He isn't seizure free but developmentally he is doing really well. Up until a couple of weeks ago it was very rare to get any show of emotion from Patrick at all, he wasn't focusing very well and was generally not too good. At the moment all this has changed and he has found his laugh! He has a constant smile on his face and laughs at everything, even his own fits make him smile! As he is getting bigger, I have gained a lot more confidence with him and have started treating him a bit more like a 7 month old baby and have been playing rough and tumble (well, as he can't move himself I have been throwing him about!) and we've discovered he responds really well to being over stimulated, the rougher the better, this will really help with his physio. He has a wicked laugh and is really ticklish. He also responds really well to loud noises, I have been buying several different toys, bells and baby cymbals and he loves it.
He still can't hold his head up well but it is improving, his legs are like jelly with little or no control and his left arm is pretty floppy but we're working on it.

He has been on a slow increase of Topiromate and has been weaning off the steroids and although he is still fitting around 12 times a day, he is coping with that and so it seems to be a happy medium. The night times are a little worse, he tends to wake up around 2am then again around 5am with a fit that can sometimes last 5mins or more, we have been given some Midazelam for those which stops it instantly but thankfully haven't had to use it too much (it can slow down the heart and breathing rate so isn't something he can take often). In total with his fits then settling down again me and Martin are both losing a good 2 hrs sleep every night but as Patrick still can't cry, he just gurgles and chuckles to himself we can't be stressed with him. We spend the days walking round like zombies but we're happy zombies!

Other news - we managed to escape to the Isle of Wight for the night last Thursday, we joined Martins family who are over there for a holiday. We had a fab time and thanks to everyone taking care of Isaac and me we actually managed to relax a bit for a few hours at least so it was worth the stupidly expensive ferry fare just for that, plus we all got spoiled by family, which is always nice.

Isaac has settled really well into big school and is loving it.

We're back to see Patrick's neuro next week so will update then xx

Long Long Summer...

Hi All, Sorry again for the lack of information, it's been a very hectic month what with appointments every 5 mins and Isaac to entertain, it's been pretty tiring. Anyway, it's been a very up and down few weeks really. The last post I wrote at the beginning of August was quite positive as Patrick wasn't having any spasm like seizures. Unfortunately that didn't last long and just as we were becoming a bit relaxed he started up again. Thankfully he hasn't had any spasms that have been strong enough to distress him but he has been having about half a dozen a day which isn't good. We took him straight back to see his Neuro at Southampton who increased his medication to take into account his weight gain. We waited a week on the higher doses to see if that worked but unfortunately it didn't so it was then decided that they would put him back on the steroid Prednislone that he was on way back when he came out of his coma. They put him on a high dose and again we had to wait a week to see what happened. Not a lot changed so his neuro decided to increase the dose again and he's been on 60mg a day which is a massive dose. He was only able to be on this dose for 7 days as it can have serious side effects we have had to keep a close eye on his blood pressure and take extra care not to let him come into contact with anyone who is poorly as the steroid knocks out his immune system. So far all this change in meds hasn't really helped him. He is still fitting at least 6 times a day, he has had 2 EEG's over the last few weeks but they haven't shown anything significant. It is looking less likely that the seizures are all coming from one area as we were hoping because as predicted the patterns change with every scan. Hopefully he will have his repeat MRI soon so that may show something. Development wise Patrick is doing OK although it's swings and roundabouts as he can have a really good day when he seems really alert and is smiley and playful. Then he might have a bad day when his seizures are worse and then he regresses again and becomes jittery and loses his focus. He is very vocal now and likes to make his presence known, especially at 2am which is nice. One milestone he has reached is that he is now eating solids. He has a large appetite and a sweet tooth and although it can take a while to feed him, he does really well. If he's having a bad day with his seizures it's a bit more difficult as the concentration isn't there and he can't put the effort in to swallow much so we go to the bottle but that's not a problem.

We are back to Southampton to see his neuro tomorrow, he is having physio and occupational health on thursday. We now have an early support worker on board who helps us out with claiming the right benefits and makes sure we are aware of all the services available. So our diary is chocca at the moment.

The rest of us are all ok, I have joined a Pilates class to help me look after my back because as Patrick is getting bigger he is getting more and more awkward to lift and carry around. Billy did really well with his GCSE's he didn't get anything below a C grade and managed quite a few A's, considering his exams took place at the hight of Patrick's problems we are both particularly proud of him. Ashley is now looking forward to his year out, he is booked to fly out to his Mum's in Gran Canaria in November so that will be great for him. Isaac is starting big school this week! I'm not quite sure how I feel about this but he is quietly excited and a little nervous I think.

I will update again when I get a chance and hopefully have some better news.

Much Love xxx

Full Update

Hiya, Sorry there's not been much up-dating over the last few weeks, we were waiting until he'd had all his appointments so that we had more to tell.

We had a busy week last week but a fairly positive one. We had an appointment with Patrick's Neuro at Southampton last Thursday. She was quite pleased with him, his seizures are still under control at the moment which is good. He's having no spasm like seizures at all at the moment, just the odd focal seizure, usually if he is startled or just as he is waking up. He has had no negative reactions to reducing the Sodium Valproate so that is good news. He is nearly off that now, just down to 1ml twice daily for the next 2 days then off it completely. They have taken some more blood to be tested, I think they're looking at his white blood cells but she said not to get excited as she's not convinced they'll find anything significant.
At least she's honest. Fiona voiced concern about his physical development, in particular his clonus (foot thumping). Apparently this should have worn off a bit by now but it hasn't so this may be a sign that he will have problems with his legs and feet in particular.

Patrick had his sight tested on Friday at Bournemouth hospital. We have been really worried about his sight and were expecting bad news as Patrick is still not fixing and following properly and sometimes he doesn't respond at all, even if you wave something right in front of his eyes. Something that would make the average person flinch or blink, he doesn't even seem to see. Anyway, the consultant gave him a thorough examination, or tried to as Patrick wanted to sleep through most of it which makes looking at his eyes quite difficult! It seems that Patricks eyes are perfectly healthy which is great, he agrees that something isn't right and that he does lack focus but this may be his brain not processing the info properly rather than a lack of vision. There are further tests that can be done to tell us exactly what Patrick sees but these will be done a bit further down the line. It is likely that his focus and vision will have been set back like the rest of his development and that it will just take time to get back to normal so he will be monitored closely and has to go back to the consultant in 2 months time.

Patrick also saw his physiotherapist and occupational therapist on Friday. They both had a good look at him and could really see some improvement from his initial assessment at the beginning of June. Patrick is still very behind with his development, in particular his muscle tone is still very low in his neck and shoulders which means he can't hold his head up and his arms are particularly floppy. In that sense he is still like a newborn so he is quite difficult to handle as he is constantly putting on weight and growing bigger. They have given us a special tumble form chair to sit him in that can be positioned quite upright, this should encourage him to hold his head up a bit and this will also be handy for when I start to wean him soon. They are concerned about his legs and feet, his feet tend to point inwards and are usually quite stiff so they've given us some exercises to do with him that might help loosen him up. He has to wear special insoles in his shoes to help straighten his feet a bit. His hands are also a worry as he tends to keep his thumb bent inwards so they may end up giving him a splint to improve that, he can't really grip anything at the moment so we need to work on his hands to encourage him to explore different textures etc. It would appear that his left side has been affected worse as his left shoulder, arm and leg is considerably more floppy and harder to control for him.

So, he still has a lot to contend with and we have lots of work to do to improve his development. No-one can tell us yet how well he might progress but we can see little improvements day by day. He is very smiley and happy and has a wicked laugh, he laughs out loud whenever the dog barks which is cute.
For those people who are registered on facebook.com there is some video footage of Patrick smiling and playing on my profile page. If you're not registered on there yet, if you register your details just search for my name and invite me as a friend, you'll then get access to any video's or photo's I upload.

Take it easy, enjoy the sunshine,
Love Gemma, Martin, Isaac, Patrick, Ash & Bill xx

All is calm....

Hiya,

Just a quick up-date as nothing much to report. Patrick is doing really well at the moment. He seems to be responding well to his meds and is only having one infantile spasm a day that is very mild so that is good. He is still having loads of focal seizures though but these are easy to cope with (for us at least) as they only effect his face, he turns his read and rolls his eyes and his mouth goes funny as if he's chewing his tongue but this only last about 30 seconds then he's fine again and it doesn't distress him at all. This may get a bit worse as he gets bigger and starts getting teeth but we'll deal with that as and when we need to.

We were back at Southampton yesterday to see the Neuro's and they've decided to start weaning him off of the Sodium Valproate (Epillim). That is the only drug he's been on from the start so considering that he was still fitting really badly while on high doses of that it should be safe to assume it's not really doing much so hopefully wont make much difference once he starts coming off it. It should hopefully mean that he might me a bit less sleepy which would be great. He is very sedated at the moment and this will effect his chances of developing properly so it's important that we try and sort that out.

As for his development at the moment, he seems to be doing very well. He is really smiley and happy all the time when he is awake which is great. He has an appointment at Bournemouth hospital next Friday to have his eyes tested so fingers crossed for that. I'm not sure on his vision at the moment, sometimes I'm sure he's got good sight as he seems to fix and follow well but when you watch him laying with his play gym he never seems to be looking at his toys just hitting out randomly in the hope that he'll hit one, it's difficult to say really so I'll be glad to finally know for sure next week.

Anyway, that's about it, keep fingers crossed for our baby boy as he comes off the drug, hopefully he'll be fine but there is a chance he'll regress a bit. We'll keep you up-dated over the next few weeks so you know how he's doing.

Take Care, Love Gemma xx

Home again, home again, jiggety jig...

Hiya, For those that don't already know we are home again. Patrick was discharged on Friday. It was felt that as the reason he had been admitted was so they could speed up the increase in meds and this had been achieved with some success, there was no clinical reason for him to be taking up a bed. Although Patrick is still fitting I agreed to him being discharged on the basis that he be treated urgently as an outpatient, we have an appointment on Monday morning.

Before his discharge Patrick was given an EEG which had some surprising results. The EEG results showed that the background activity that had always caused concern is now much less which made it easier to see what else is going on. There is now the chance that Patrick's seizures are 'focal seizures'. This basically means that they may be being generated from one area of his brain, in his case somewhere in the bottom right (I'm sure there's a technical term, I will find out). Although there is still a question mark over this, it is somewhat encouraging as if the seizures can be isolated there is some chance that even if he doesn't respond well to medication, they may be able to remove the part of the brain that is causing the problem. Now all this is very far off and Patrick will be having more scans and repeated MRI's as he gets bigger. The Neuro team haven't given up on the Infantile Spasm theory, Patrick's seizures have all the physical characteristics of Infantile spasms just no evidence to back it up. He is proving to be a very complicated patient and has some of the top Neuro's in the country completely baffled. In a way this is good news as I know that people like Professor Kennedy don't like to be beaten and the team will be doing everything they can think of to find the right treatment for Patrick.

At this moment in time Patrick is on 3 different anti-convulsants, Sodium-Valporate (a common anti-epileptic), Vigabatrin (usually for Infantile Spasms) and Topiromate (apparently good for focal seizures). He is also taking Biotin, a vitamin supplement that works along side the Vigabatrin. All of these medications have some sedative affect so Patrick is much more sleepy than he should be. At the moment he is still having the odd seizure, yesterday he only had one which was excellent but we have been here before where he has a brilliant day and we finally think the meds are working but then the next day he has 6-7 so it is early days. We are having to monitor and record every seizure, writing a description of his movements and how long it lasts. He has started a funny quirk of chewing his tongue and screwing his face up which we are told may be a focal seizure so we are monitoring that as well. We are also having to record his feeding patterns as he is so sleepy that he doesn't always manage to stay awake long enough to feed properly so we are taking advice from a dietitian for that.

So, a lot to take in I know, I'm still trying to get my head round all the details myself, hopefully we'll get some more info on Monday. It is great to be home though
and despite all he is going through, Patrick is absolutely gorgeous. Development wise he is still very floppy, he can't hold his head up but he doesn't let that bother him, yesterday he really started smiling a lot and he even giggled! He is very touch sensitive and loves having raspberries blown on his neck. He is a very happy baby and both Martin and I are proud as punch, he is definitely hard work as you can't take your eyes off him but we are used to that now. If he is sleeping and I am doing housework, but more importantly at night time if I'm asleep, he has a small wrist rattle that his Grandma bought him, I put that on his wrist so that if he does start fitting it alerts me immediately, a simple idea that works, until we can buy some more sophisticated equipment.

Anyway, I will update this after Monday when we know a bit more.

Take Care, Gemma xxx

a bit more news

but not a lot! The vigabatrin definately seems to have had an effect but Paddy is still having fits. Over the past couple of days, the fits have come down in number, quite dramatically in fact and those that he is havong are nowhere near as distressing for him either.

So far today (since 5.10 am) he has had only two fits which were very mild. Good news it seems but we had a similar run after he was put on the Topiromate initially so I am just waiting until I open my mouth too wide or too quickly so watch this space.

Love from the Conyards
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Getting cuddles from my baby

The Prisoner

I think Patrick's first words will be 'I am not a number'. Poor little bloke is still in Southampton and still having seizures although they have been greatly reduced now. Reduced not only in number but (thank Goodness) in severity too.

As I have mentioned in an earlier post, he has now been put back on Vigabatrin and last night (Monday) this was increased to the maximum dose allowed for a baby of his weight. The result is that so far, since that increase, he has had only a handful of fits and Gemma says they are very mild. So that is a bit of good news and welcomed by us all.

Obviously I try to temper my enthusiasm with caution because as his Dad I want each new thing to work and can get carried away in my reporting of it and I don't want to mislead anyone. Albeit unintentionally.

To that end, Gemma asked Prof Kennedy what is next and he confirmed that this new dose also has to be given a proving period before we can decide to withdraw it should it fail to work. Gemma then asked if there was a plan B to which he smiled and said 'oh yes - don't worry'. So again, he manages to reassure us even when giving us.... not exactly negative views because he is just being honest of course - but I think that from a different person we could walk away from chatting to him feeling 'down' but somehow he manages to tell us very little, not always positive but you just know that you can trust him and that he knows what he is doing. If that makes sense! I think that if he wore a hat, I would be looking for the rabbit!

I was just about to add that this new dose has knocked Patrick out again and left him sleeping most of the time but having just spoken to Gemma (it is 23.18), she informs me that Patrick is now wide awake, full of the joys of spring - I know it is summer but blame the greenhouse effect - and is currently singing and wanting to play. Again, this is something to be grateful for but I am not the one who is up there with him, absolutely knackered and wanting to sleep. Tee hee!

We shall see what the next few days bring and hope that I can continue to report good news. From what Prof Kennedy said to Gemma today - it looks like they will be at the hospital longer term rather than just a quick visit. We had a chat about this and agree that we will keep doing what we are doing, how we are doing it. It isn't nice to be apart (those who know us well, know that we are a very close couple and genuinely enjoy each other's company and do miss each other quickly) but we have to do what has to be done for Patrick and there is no way he will be left on his own up there. When he was in the coma it was a different story of course because he was unaware of anything really but this time he is fully functioning between seizures and we just couldn't contemplate it.

Isaac and I get up to the Hospital daily and we manage to eat dinner together with Gemma (and Patrick in attendance) every day too so we have some sort of continuity for Isaac as well as for us. The big boys are obviously of an age that makes it easier to explain and they understand what needs to be done. They have actually been terrific throughout this whole period and have been supportive and supported. I am actually very proud of my little family and they are all my heroes - Paddy in particular, of course.

Well enough of me gushing about my wife and kids - that is not the point of this blog.

Thanks as ever for the support of you all and the understanding of those who have been leaving messages but not always getting replies. You know it isn't through ignorance but sometimes we just don't have the energy to talk about it when it has been a bad day. I guess that IS the point of this blog!

Much love to everyone
from all of us
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just a quickie

Hi all

no real news as such this morning (Sunday) but the fits continue. We hope to maybe see a neurologist today if one is about.

I was just speaking to my sister Angela and she mentioned the fact that she was unaware that we could make and receive telephone calls from the hospital. The ward that we are in is fine with us using our mobile phones so please feel free to give us a call. What I would suggest is that perhaps you would text first, just to make sure that Paddy isn't hitting the bottle or napping/fitting/settling down for a nap etc. That way, Gemma can let you know if it is ok to call.

**Update: We got a mobile for Gemma so I have removed the request. We have borrowed one off Gemma's Mum till our upgrade comes next month but thanks to everyone**

hope to have more news soon.
Lots of love
From us lot
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Spoke too flippin' soon of course

Just after I finished the post for last night, I spoke to Gemma and she told me that Paddy had just had a fit! Not too bad it seems but I must have spoken to soon.

He had another at 03.00 this morning and then another couple by the time Isaac and I arrived just before ten am. While Gemma was out with Isaac, Patrick had a little sleep and was then awoken by some strange facial movements and then body jerks with some vocal activity too. I am not sure if it was a seizure but it certainly wasn't normal behaviour and the nurse on duty agreed.

He was a good boy and took two bottles while I was there and as I settled him down for a sleep, he had a seizure more like the ones prior to the vigabatrin and he was screaming with each spasm! Not a good sign but it is still early days with the Vig Drug so let's keep our fingers AND toes crossed.

News as it happens.............
Martin, Gemma et al
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Let's go round again.........

I am having a touch of deja-vu again (that is a subtle joke by the way) but it seems we have been here before.

Patrick was given the vigabatrin again last night and he actually settled down to sleep without any fuss. That in itself was a noticeable change and he slept all night. Prior to the vigabatrin, he had another massive seizure and vomited his feed which he had just finished. Gem was quite upset/scared/shocked by this one but thankfully that was the last of those. (so far).

This morning broke with just one mild seizure and so far ( as of 9 pm, he has had no more). The down side is that he has been quite sleepy and when awake, he has been very agitated, vocally protesting and unwilling to interact with anyone. This is a blow because as much as we want him seizure free - and we want that most of all - we also want our baby to be aware of us and want him to join in with us. He has been doing this in between fits and we had hoped this would continue but obviously his comfort is paramount. Let's hope that as his body becomes accustomed to the drugs, so his awareness and interaction improves too.

I misinformed you via my sister yesterday and said that the topiromate was being withdrawn but this doesn't seem to be the case and in all honesty is probably a big part of why he is so out of it again. The Neuro has said he wants the fits under control as quickly as possible at which point he will start to withdraw any drugs he then feels are unnecessary. He has also said that he wants to check out another possible metabolic issue involving enzymes and Patrick will start treatment tomorrow for this. (Saturday). I can't remember what the vitamin/drug is called but will update this blog later when we know more about it. Again, this is an outside chance but we all have hopes for any little miracle so here goes nothing as they say.

It looks like Gemma and Paddy will be incarcerated for another three days or so although Gemma has got a day pass for tomorrow and is taking Isaac out to see the Brum roadshow in Christchurch. He doesn't know anything about this so it will be great to see his face when she tells him! I will be doing the day shift with my little boy while they are away and I can't wait to have him all to myself. (By the way, Brum is a kids' TV show about a little vintage car that goes on adventures! I wonder if he will get a parking ticket in Christchurch?)

Depending how well I cope tomorrow, I should be able to update this blog when I get home again. If not, it will be as soon as is possible.

Just for the Medics amongst the family - (name dropping now) - The Consultant Paediatric Neurologist looking after Patrick is Professor Colin Kennedy who apparently knows his stuff judging by the amount of Google hits he has. He is something of an authority on Infantile Spasms and early onset epilepsy (I just looked that up as you can probably tell.) Anyway, so far we have been very lucky with all of the Neurologists that have been involved with his treatment and indeed all of the medical staff. It is also nice that none of them have tried to blow us up in the car park too.

On that note, I shall leave you all in peace and say goodnight and again thanks to everyone on Patrick's team and in the fan club too.

We will never get bored of saying thanks for all the love, support and kindness that have been shown to us throughout. You will all get a mention in Gemma's book, no doubt :-)

Latest news 5th July 2007

Knowing how we all worry when we don't get any news, Martin and Gemma have asked me to post this update for them and to pass on their apologies for not updating sooner but as you can appreciate they have been pretty busy and to be honest there hasn't been much to tell as there has been little change in Patricks condition.

Patrick is still having seizures and though they are less frequent they are lasting longer. He is having about 9 clusters a day on average and they still appear to be quite painful. The doc's have now decided to withdraw the new adult drug (Topiromate) that they put him on and reintroduce the anticonvulsant (Vigabatrin) although this can only be used in the short term (max 2 years) due to the possible side effects.

Martin, Gemma and the boys want to thank everyone again for all the love and support and will keep you posted on Patricks progress.

On familiar ground......

Hello all
as we are sure you already know (most of you at least), Patrick has been re-admitted to Southampton General Hospital.

The reason for this is that following on from the posts below when we got the news from the EEG carried out after the appointment with the Neuro, his fits increased quite dramatically. Sadly, this time the fits seem to be causing him pain too as he really squeals and then cries quite wildly as each one hits him.

The seizures were coming in 'clusters' as the Neuro described them and he was having, on average, two to three clusters per hour when awake. On Tuesday he had 17 clusters just during daylight hours, that may not sound much but when you realise that each cluster averaged 10 seizures each, it puts it into perspective. 170 Seizures while he was awake! We are unsure just how much activity there is when we are all asleep but we are hoping to have a night vision cctv camera soon which will record any movement on his part and then e-mail a recording to us if there is any activity at all. We have a camera that allows us to keep an eye on him while we are awake but as he doesn't make much noise, unless he screams out, we wouldn't know if he was having a fit overnight. (If he is asleep during the day and fits, he makes far less noise generally.)

Tuesday evening was even worse and we made the decision to telephone the neurologist weds morning to see about getting him admitted. We were concerned that the new medication swap over was leaving him vulnerable as the old meds wore down and the new meds hadn't built up enough yet. During tuesday evening Gemma recorded in our notebook that out of 60 minutes between 9 and 10, Patrick was fitting for 28 of them!

By the time we got him off to sleep, we were both drained; emotionally and physically washed out. When the morning came, we left a message for the neurologist and she was able to contact us later in the day. Patrick was admitted wednesday afternoon and the whole circus strated again.

Thankfully he is now in a safer environment with regard to having his medication changed quickly and so the change has taken place. He has been violently sick a number of times and this is a known side effect of the new drug and Gemma tells me that this morning (friday) he is not interested in his bottle at all. This too is a side effect that we had been expecting. It all confirms to us that we did the right thing in getting him back into Hospital as I really don't think we would have coped at home. That is to say, yes we would have got the job done but I think it would have left us both in bits. There are certain times when as Parents we need to hand over control to those better able, better trained etc and it is the Medical team's responsibility to do things like this.

Well I am starting to ramble now so I will sign off for now but will try to update later as more news comes in.

Thanks for all the good wishes etc

Keeping Strong

A lot of people keep asking me how we are able to cope so well and stay so strong hroughout all this so I thought I'd just add a bit to explain how we are dealing with all this.
It has always been my view that things happen for a reason, I believe strongly in fate. Now, I could interpret all this in a negative way as a run of bad luck and think that I must have done something really bad in a past life to deserve this, if I was that sort of person I would have hit the bottle by now and would not be so strong. Thankfully I am able to always find the positive in any given situation, a quality I have learned over the years, having lived a very interesting and sometimes difficult life so far, I have experienced quite bad depression in the past and have chosen not to go through that again, therefore I must find something to smile about whatever the difficulties I face.

Patrick is a very special baby, there are thousands of babies born with disabilities all the time and there always will be. These babies need special care and lots of love and patience. Without blowing my own trumpet I know that as a family we have the patience and the love that is needed to cope with Patrick, I believe that special babies are delivered to special families. I'm not religious so I don't know where I get this belief but I know that I have always held this thought.

A lot of people have also said that they feel sorry for us and that we really don't deserve all this. My answer to that is, if special babies are born all the time, what makes us any less deserving than any other family? Patrick deserves the very best chance to reach his potential and we can give him that.
If someone shows sympathy, however well it is intended, it actually frustrates me. It's almost like saying 'Patrick's problems are a burden and you don't deserve it' and I feel very strongly that this is not the case. Patrick is beautiful and strong and I feel blessed to have him as my son, even with all his extra needs.
Thankfully Martin shares these views, making us a very strong combination, we are able to be strong for eachother and if one of us is having a bad day, the other can provide the lions share of strength for that day.

I have had quite a bit of contact with people with special needs and their carers through my work as a youth worker. We run a special club for Physically and Mentally handicapped teenagers. These people enjoy their life and live with no fear and are surrounded by strong people, I have never met a carer yet who couldn't find something to smile or laugh about, however tiring it may be to look after their child.
With all this said, I don't want you to think that I don't have my moments of despair, I wouldn't be normal if I didn't shed a few tears. But throughout all of this my tears have been shed for Patrick if he is pain or for Isaac who of course doesn't really understand the severity of our situation and will discover as he gets older and sees Patrick developing that he may not be able to teach his little brother to play football, something that he has been looking forward to since he found out I was pregnant.

I'm sure many people don't know what to say to us at the moment so they either say 'I'm sorry' or say nothing at all. We may not need sympathy at the moment but we do still need strength and some sense of normality so don't think twice about getting in touch, we're not able to travel too far from the hospital at the moment but visitors are always welcome.

Back to the drawing board...

Hiya, Patrick had his first outpatient appointment with his neurologist yesterday and I'm very sad to report that it wasn't a great day.
In general Patrick seems to be doing well but for the past week he's been suffering from severe stomach cramps that reduce him to tears. We had consulted our GP who put it down to constipation but advised us to talk to Dr Goodwin (his neuro) about it. We upped his laxatives which has helped his constipation but the cramps didn't subside. We managed to get some video footage of the cramps and when Dr Goodwin saw this she said that it was unlikely to be anything sinister but booked him in for an EEG just to be sure.
It turns out that these cramps are in fact seizures. As you can imagine, this was the worst news for us to deal with as we really thought they had the seizures under control and had now been focusing on his development problems. What makes it even more hard to deal with is that these seizures actually hurt him, to the point where he cries out in pain, they only way I can describe it is that it looks like he is being electrocuted, if any of you have ever played with one of those toys that give out an electric shock if you press the wrong button, it's like that but for a 4 month old baby who doesn't understand what's going on this is really harsh. I've said all along, we can totally cope with any disabilities and development issues he may have, but what we really struggle with is watching our poor baby in physical pain and being able to do nothing to ease it. Of all the different types of seizure he could suffer from, this seems to be the worst as he's never shown signs of being in pain before.
So, we can now confidently say that he has not got a vitamin B deficiency so we can now stop giving him the horrible supplements he's been on that make him sick. They have also confirmed that although these seizures look a bit like infantile spasms (west syndrome) his EEG results don't show this to be the case either.
So they need to play about with his meds again and try and find another combination that will work for him, the plan at the moment is to Stop the Pyradoxil (Vit B) and the Folinic Acid. They are also weaning him off the steroids (Prednisloane) and then will look at reducing his Sodium Valproate and introducing a new anti convulsant (Topiramate) but his Neuro has said that they need to get clearance on that as it is never usually used in such young babies which scares me a bit. We have also put him back on a low dose of Phenabarbitone as he didn't seem to be having these episodes when he was on this, unfortunately Phenabarb is only used as a quick fix and not as a long term solution. We are monitoring him very closely at the moment as we are anxious that this may spiral out of control again. We have been told that if they become more regular (4-5 an hr) we should take him to Poole hospital where they can up his meds and we really would be back where we started. At the moment he is having between 1-3 an hour, some more severe than others, they don't always hurt him.
So, we're back on the roller coaster for a while until we get this under control, we'll update you as and when we can.

Ashley's Ailments!

Just another thing for us to deal with, Ashley (our eldest) was taken to hospital with a punctured lung today! Thankfully not the result of a fight but as a result of a bad chest infection. He had to have a chest drain and was allowed home but has to take it easy. He is absolutely fine now, just a bit tender and is back at work like the trooper he is. I dunno, there's always something to keep us on our toes!

Finally some answers...

Hiya, well it's been a roller coaster the past couple of weeks since we brought Patrick home. We are slowly settling into some sort of routine, everything revolves around Patrick at the moment, his medications have to be taken at certain times, the first of which is at 4am! Patrick is also difficult to feed, taking up to 2hrs sometimes which is a nightmare. Now we have had him home for a while we have started to see little things that aren't quite right and have had some concerns about his development. Thankfully we had an appointment today at the Child Development Centre in Poole so we were finally able to get some answers and some clarification as to how things may be long term.
Patrick was assessed by various specialists including speech and language, physio, and paediatric consultants who assessed him as a team. All together we were there for 1 1/2 hrs so it was quite in-depth and they were able to see him asleep, awake and feeding. Unfortunately their findings weren't the best we could have hoped for.

Basically we have now had it confirmed that Patrick will be significantly disabled. He has problems in all areas of development at the moment. Patrick showed little or no response to the Dr's trying to interact with him, when he did respond to anything it was a negative response, he got agitated when they tried to make him touch anything and really didn't like being played with. I know you could argue that this would be normal for a baby not to like strangers around him but most of the time it was like he didn't even know they were there. At the moment we are unsure if his sight and hearing have been affected, personally I think he can see and hear but his lack of response to everything makes it difficult to be sure. He has now been referred to specialists who can carry out further tests in both these areas. He is also being referred to a dietitian who can hopefully help with his feeding, at the moment he isn't getting the amount of milk he should be as he never keeps his last feed of the day down and also struggles with most of his other feeds. The dietitian can hopefully sort us out with some special milk which will give him the right amount of calories in less feeds so hopefully he wont be throwing up every evening. Another concern we had was that Patrick is very 'jittery'. Whenever he stretches or when pressure is applied to his feet, they shake, I call it the 'thumper rabbit effect'. We had been worried that this was a sign he was fitting or having a bad reaction to his meds but it's neither. Apparently Patrick has over active muscle tone and the shaking is a result of his brain not sending the right messages out. Although it's not great news to hear his brain isn't functioning correctly, it's also a relief to know it's not seizure activity and at the moment it's nothing we need to be anxious about as it is not dangerous to him. It may affect his mobility in the future but hopefully the physio he we be having will help. One thing that Patrick did seem to respond to was the sensory room. This is a darkened room with bubble lights, fibre optics and soft music, he was totally calm in this room and actually watched the bubbles with some interest. It was very helpful today to learn what he does and doesn't like as it will make it easier to care for him at home, at least we know now to take everything slow with Patrick, softly softly and gently.

So, in a nutshell Patrick is a very poorly bunny that will need lots of extra care. On one hand today has been very difficult, especially explaining all this to our bigger boys, on the other hand I feel quite relieved to have had some answers so that we can move on with some idea of what we're dealing with. It's gonna be life changing for all of us and I'm sure things won't be easy. although I am confident that if anyone can cope with Patricks needs then we can, especially as we are so lucky to have such fantastic support from our family and friends.
We have been told that we will have access to lots of services including special education needs and respite which again makes it clear just how poorly Patrick will be, most people have to fight for these services. We'll take any help going and somehow we'll find a new 'normality' and just get on with it.
One thing I would ask is that people don't start treating us all with 'kid gloves'. A friend who desperately needed a shoulder to cry on deliberately avoided talking about their problems today because they thought we had enough to deal with. Please don't treat us any differently, both myself and Martin have always been available to our friends and family and we always will be.

Patrick's Home!!

Hiya, been a while since I was able to update this blog as I've been stuck in the hospital for the past week but I am delighted to announce that Patrick was discharged from hospital yesterday. It would have been a day earlier but they wanted him to have another EEG before finally releasing him. Thankfully the EEG results showed no epileptic activity which is an improvement. There is still some abnormal 'slow waves' present but we're not sure what that means or how that might affect his development, if at all. We haven't been given a confirmed diagnosis or explanation for why this all started, all we have been told is that they are treating it as a vitamin B6 deficiency and will continue to do so unless he starts fitting again in which case they'll know it's not that. We have been given open access to Southampton hospital for 4 weeks and will have support from community paediatricians and physio-therapists. Patrick will have to attend a clinic in 4 weeks time and will basically be monitored as he develops. As he grows they may be able to do further tests that will help them confirm his diagnosis.
He has come such a long way in the last few weeks that it really is amazing to see him looking so well. He seems to be doing everything right at the moment, he focuses well and can follow an object as normal. He has started reaching for the toys on his play gym again, he smiles and is feeding well (still has to be positioned upright but is taking the right amount).
He is still on 6 different meds which is a bit of a nightmare for me as I have to prepare them all and give them at the right times, the pyradoxil is a particular pain as this has to be crushed and mixed and takes ages and he has to have that 3 times a day, the first one at 4am! Anyway, all this is a small price to pay for having him home.
We have become very paranoid parents but I don't think anyone could blame us for that, we are currently trying to find funds to purchase an 'all singing, all dancing' baby monitor that has a camera with audio so that we can watch his every move and look out for any signs of seizures from downstairs. At the moment I am putting him to bed in his cot next to me but can't leave his side, having this monitor will hopefully mean that I feel confident enough to leave him to it.

Anyway, I am off to have dinner with my family, something I have been missing a lot for the past few weeks. We will keep the blog going but won't be updating it daily, we'll update it as and when anything happens and will send e-mails out to let you know to check it.

Thanks for all your support and prayers, they have obviously been working. xx

Bank Holiday Monday

Another good day today. We were able to go and eat together again and Patrick enjoyed our little walk with the buggy. Isaac seemed to enjoy it too and he was very hands on with his little brother. He was very sweet and kept stroking Paddy's face and eye occasionally!

Poor Paddy has got a cold now it seems and it was quite strange giving him such an innocuous medicine as calpol(R). It seemed quite inferior compared to the other drugs he has been (and remains) on. He has had a slightly raised temperature and looks pretty cute with very rosy cheeks.

Again, he is even more vocal today and is joining in with the conversation more. He is still feeling the effects of the ventilator and when he coughs, he sometimes follows it with the most sweet yet pathetic little squeak which breaks your heart to hear.

Given his age, we are wondering if it is a cold or if maybe he is teething. Such a normal thing that seems so strange given the surroundings. Everything has a surreal feeling in the Hospital. Us going for a walk with the little boys is really strange, freeing yet with constant reminders of our lack of freedom. Sounds dramatic I imagine but very difficult to explain how it feels.

Anyway, it is still all positive, even with Patrick's cold, so bring on the rest of the week cos our baby is coming home! Yay!

Love from
Martin, Gemma, Ashley, Billy, Isaac and Patrick
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We are casting soon for the film of the blog but we are not sure if Angelina Jolie and Bob Hoskins are available though.

Sunday my Prince will come.... (sorry)

Not a lot to add really for sunday. We had a nice day with Patrick and he is just getting better and better with each reduction of the medication. He is more vocal every day and he is really interacting now too.

We are waiting until the Neuro comes back to see us again just to get confirmation of what they think is wrong with Paddy but even the Nurses are aware that the plan is to release him this week! Let's hope the plan comes together so we can post the final Hospital Episode of this blog soon.

We may keep the blog going until such time as he is fully out of the woods but will play that by ear.

Love to all of you, this could have been so much harder for us without your support and help.

From The Conyard Gang
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Saturday Special

We had a great day yesterday (Sat) and were allowed to take Patrick out for a walk in his buggy. It made us feel quite 'normal'. Yippeeeee!

Patrick was absolutely over the moon and was cooing away as he was able to see the different lights on the ceilings of the corridors and the sunshine when we went outside. It was a magical moment for us. Then it got cold and we went in again! We were also able to go to the restaurant together and eat with Patrick next to us, something else we take for granted but was special yesterday too.

Gemma nipped out and bought a new cot which will be delivered this week, as we need to get things straight for Patrick's release. (Time off for good behaviour I think) We seem to be on track for him being allowed home this week and there is no point putting him back into his Moses basket when he has been in such a big cot for the past four weeks. It just hit me then that it IS 4 weeks today since this whole episode started. Seems so much longer somehow!

Anyway, Gemma and Isaac nipping to Southampton proper, gave me a nice afternoon alone with Paddy. I was able to feed him (which in itself is a whole routine because he has to be sat with his head forward to avoid him choking) and I got to change his nappy (a bit of planning on Gemma's art, methinks)and then a lot of play too. At one point, we both nodded off while having a cuddle on Gem's 'Z' bed, which was lovely too.

Patrick was obviously tired from getting out in the fresh air and Gemma bathed him before settling him with a bottle. He had his 6 o'clock meds a bit early because once he is asleep it is very hard to wake him and it was clear that he was about to sleep.

I got home with Isaac and got him ready for bed and then got a text at about half eight from Gemma - The Hospital Pharmacy had run out of the Pyradoxil medication which Patrick was due to have at eight!

They eventually located some - at Gt Ormond Street - and it was being delivered asap. I assume that Peter Pan was busy as it arrived by taxi at some time after 12 I think it was. The hardest part about this is that this is the medication that is NOT being reduced or cut out because this is the one they think is actually stopping his seizures. So important is it that it was allowed to run out! Anyway, they have had to write out incident reports and such like so I hope someone gets their knuckles rapped. I was all for going up there and pointing out the error of their ways (Gently, of course) but my wife being the sensible one, calmed me down.

Anyway, all is well that ends well and all that malarkey and he got his meds eventually. In fairness to the Nurses, they did all they could do to locate the Pyrodoxil and contacted the Neurologist at home etc to ensure that he was safe. (Patrick, not the Neurologist!)

I am going to go back to the Hospital soon and will update the blog again later with any news etc.

Love to all from
Martin, Gemma, Ashley, Billy, Isaac and Patrick
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The Changing Man..........

Hello to all of Paddy's fans! We had some encouraging news today so I thought I should share it with you. The Neurologist came along this afternoon and I causally asked if there was any idea of how much longer Patrick was to be in Hospital. I was quite surprised when she said that she hoped he would be out at the end of next week!

She also said that she hoped that he would be OFF the medication in time for that to be possible. As you can imagine, I asked her to repeat what she had said, she did and I then asked her to explain cos I was sure that I was getting this wrong. It seems that the current plan is to wean him off of the Vigabtrin completely by Tuesday if possible and then the same with the Phinabarbetone (spl?) by the end of the week.

As pleased as I was, I still wasn't sure that I had got it right and then the senior on call Neurologist stopped by and said pretty much the same except that she was hoping that Patrick would be able to come home sometime around Wednesday. It seem that they are not convinced that it is not a vitamin problem and he will be staying on the supplements for that but will be taken off the other two mentioned above.

I have asked Gemma to confirm all of this with them over the weekend in case I have got it wrong but I am sure I have got it right so watch this space.

Love from
Martin, Gemma, Ash, Billy, Isaac and Paddy
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Easy does it

Today has been another positive day. Patrick's first night on the lower dose of Vigabatrin gave him more awareness and made him more active. It also made him more awake which meant Gemma was also more awake. Most of the night in fact!

We are hoping that if the meds are reduced even more, Patrick will be more like his old self soon. He still hasn't cried, which must sound an awful thing to wish for but for us it is one of the signs of normality that will mark his recovery.

So, not much else to report just yet but at least there is nothing negative.

Love from
Martin, Gemma, Ashley, Billy, Isaac and Patrick

(Look out for the upcoming Patrick brand merchandise available for summer. Avilable in all good stores and some rubbish ones too.)

Same wit - different day

Welcome back. Patrick has been seen by a Neuro again today and she felt happy that he was progressing OK. The decision has been taken to reduce his medication from this evening and having just spoken to Gemma, he seems to be more active with the lower dose.

Gemma managed to escape today and went to Southampton with her Mum, Auntie Sue and Isaac. I actually felt quite sorry for the poor unsuspecting people of Southampton and settled down to finishing Patrick's bottle. He is feeding quite well when he is in his chair and he had a good guzzle.

Once he had finished his bottle,we had some serious cuddles and he got much kissing from Daddy. About an hour later, the Physio came along and put him through his paces with movement exercises to try to increase his muscle tone. This has dropped a bit due to him being so immobile during his comas and he just has to be encouraged to move his arms, legs and head fully. At the moment, his legs are not too bad but his arms stay out from his body and slightly raised so she wants us to make him bring his arms across his chest more. Another thing that she wants us to keep an eye on is that he favours his right side with his head. Basically he lays with his head to his right and looks off into the distance. If you approach him from that side, he will track you with his eyes but he tends to just swivel his eyes in your general direction if you approach from his left. The Physio has asked us to avoid coming towards him from his right side so that he has to start moving his head to the left in order to engage with us. I noticed that he will do this eventually but he is a bit lazy with it just now and turns his eyes as far as he can and then obviously decides we are not that interesting. When I rattle one of his noisy toys from that side, he will put more effort into it! Says something about us I guess haha.
For the Medics amongst us, he currently has just one cannula in his left hand and I am guessing this is for quick access for meds if the reduction does not have the desired effect. Other than that, he just has the pulse/Oxygen Saturation monitor probes on his foot. I am not sure which med(s) has/have been reduced and to be honest, I am not entirely sure which ones he is on currently. (Gemma does all the shopping so she probably knows!)

So.... the next few days will hopefully show an improvement in Patrick's awareness and control of his body without a slip back into the seizure activity. Keep your fingers crossed and we will speak to you soon, hopefully with good news.

Love to all from
Martin, Gemma, Ash, Billy, Isaac and Paddy
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Tuesday's News

Well today brought the results of the EEG that was carried out yesterday. The Neurologist found them to be hopeful but there is still background activity going on that show signs of ' a potential for seizure' although no direct seizure activity was evident.

Promising stuff but it means that there is still an underlying problem that is as yet unresolved but baby steps before running and all that. The Neuro, Dr Thomas now wants to adjust Patrick's medication to see if we can get to a level where he has near normal response but still protection from the seizures. At present we are hopeful that Paddy can have any degree of normality and a minimum risk of seizure, whether this can be achieved - only time will tell really.

Because he is so young, I think it is going to be a case of waiting to see how he develops to see if any developmental problems arise. It looks likely that there will be problems but as to how severe or how often etc, we can't say. All we can say is that whatever the challenge, Patrick will have the top support available - US! (And you all too, no doubt.) The hardest part of all of this is that he just looks like such a (I hate this word) Normal.

I watched some film that I took of Patrick prior to his illness and showed it to Gemma. There are some possibly odd little movements that he makes and we now wonder whether symptoms were presenting themselves but we just hadn't seen them for what they were, or maybe we are now just trying too hard to see where, when and how it all started. I am sure we will never really know and maybe it isn't important to see how it started, we just need to work out where we go from here, now that we know about it.

On a more upbeat note, Patrick was visited and checked over by a nice Speech and Language therapist today. She watched as Gemma fed him and listened to his swallow and suck reflex with a stethoscope. He seems to have secretions pooling in his throat which are causing him some irritation but is otherwise coping well with bottle feeds. The physio terrorist (my little joke) also looked in and suggested putting him in his chair when feeding him as this allows his head to move forward better and so aids his swallowing. Gemma put him in the chair and this did indeed seem to make a difference. I think the speech therapist was looking towards having his tube put back in to err on the side of caution but changed her mind when she saw the improvement the chair made. We were both happy about that as so far we have seen Patrick moving forward, little by little and re-fitting his tube would have felt like a step backwards.

We mentioned to the speech lady about the fact that Patrick doesn't cry - (he didn't even cry when a cannula was inserted into his hand last night after we thought he may have been having very subtle seizures. We appear to be wrong though thank God)but she said it is quite possible that his voice box may be a bit bruised as a result of the ventilator being used during his comas. She has asked that one of the respiratory Doctors to check his larynx, just to be on the safe side. We will update you on that too as and when.

Again - a bit more upbeat - Gem was able to give him a bath while I was there and I joined in too. Isaac was trying to spur him on to splash me and for one very surreal moment you could almost imagine us being at home and having a normal bath time with the nippers. Very strange feeling for a minute! It is funny how little things that are taken for granted mean so much when they are given back to you after a period without them.

Any hoooo, I am going to leave it there for now. I will probably come back to this and revise parts or add more but this will probably be in the morning now as I am a bit tired and the old head is drifting.

Thanks for all the good wishes and love that is being sent.
Love from
Martin, Gemma, Ashley, Billy, Isaac and Patrick
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Photos from Monday

As promised, here are a couple of pics of the big fella!

a bit of a delay with this post

Hi all
sorry for the delay in this post but there wasn't much to report until yesterday and neither of us had the energy to update before now.

Patrick had a good weekend really. He became more aware with each day and was happy to have a play when we took him out of his cot.

Yesterday was the best day for a long while and early on Gemma noticed that he was both willing and able to suck on her finger! Straight away she asked the staff if would be okay for her to try him on a bottle and was given the go ahead.

He took longer than usual but he did manage to drain the lot, much to Mummy's extreme pleasure. I think that the loss of feeding Patrick was one of those things that Gemma had really mourned, so she was over the moon. He ended up feeding from then on and continues to do so. Gem was also able to give him a proper bath too and during his towell down, his gastric tube came out. Pure accident but the staff decided that because he was feeding normally, he didn't really need it in anymore so it was left out. That was another little milestone too as it was the last invasive tubing that was left. He now just has a stick on probe for his pulse and oxygen saturation monitor now.

One thing that has become evident is that whatever routine we had at home with Patrick is now long gone and he has been entertaining Gemma through the night and allowing her to have very peaceful days while he sleeps. How kind he is! I think that will change as soon as Gemma can make it!

I have not been able to get to the hospital as much as I would like because I have had a serious bout of 'boy - flu' as Gemma sympathetically calls it. While Patrick was in the High Dependency Unit, we felt it would be very selfish for me to go in and risk passing any infection to the other kiddies there. Patrick was being filled with anti biotics for his chest infection so he would not have been at risk but we didn't know the status of the other poorly ones.

Anyway, all back to normal now and Martyr that I am, I can resume my proper visiting.

I have added a couple of pictures of our little fighter so you can all see how ell he looks now. All we are waiting for is the EEG result so we can find out the next stage of the plan.

Keep checking in with us here for updates which I hope to get done a bit more frequently. Love to everyone,
from the Conyard mob
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My 2 Pence!

Just to add to what Martin said really, the reason for the EEG being put back was purely because no-one had organised it in time for Friday! I think it was a bit of miss-communication among Neurologists, never mind.
Patrick had a stable night, although the little munchkin needs to re-set his body clock as he was awake until 1am! I don't know, there's just no pleasing me, it was only a few days ago I was sat by his bed pleading with him to wake up, last night I was back to pleading with him to go to sleep! When he finally drifted off he snored like a trooper (he's still a bit chesty and I don't suppose the tube down his nose helps) so I had quite a restless night. When I did wake up this morning the nurse told me that Patrick had been awake a few times during the night but just sits quietly looking around so I hadn't noticed. One of the things that concerns me a bit is that I haven't heard him cry since this whole fiasco began. It's not that I want my baby to be upset it's just strange as even the best behaved babies cry sometimes. Another thing that isn't quite right is that although he is able to focus on your face or a toy, he won't hold that focus for more than a couple of seconds, he continuously looks around him. I have voiced my concerns with the Neurologist who isn't too worried as it can take a long time for people to get 'back to normal' after being so poorly. A friend of mine at the hospital has a 3yr old boy in the same ward who was admitted around the same time as Patrick having suffered from a massive seizure himself. When he came round he had totally lost the ability to speak, walk or do anything really, he has had to re-learn all these things again and he is doing really well but is still obviously not right. I guess I'm thankful that Patrick is so young and so hasn't got all these things to re-learn. How well is able to do all these things in the future, only time will tell.

Anyway, Martin is on the day shift so I can spend some time with Isaac and he is nagging me to play 'Guess Who?' with him, I love it, nothing like a game of guess who to take your mind off your troubles!

The Magical Mystery Tour......

Well, Patrick had hardly unpacked his bags from yesterday when it was decided that he would now be allowed to re-join the outside world in the General Ward! (The world outside special care that is.)

He is now on ward G1 which is a normal Paediatric care ward and it means that Isaac can get to see him again, which he did, in fact, today. Isaac is especially pleased because there is a play room with loads of toys and games and seeing as Paddy is too small/ill etc................. well, it would be rude of Isaac not to play with it all for him!

This move is great news in terms of Patrick's road to recovery and both Gemma and I are obviously very happy that he is responding so well to the treatment but the other side of this coin is that the level (not quality) of care reduces too. In intensive care he had a nurse sat at the end of his bed, 24/7. Not the same nurse obviously as they take it in turns! In High Dependency, there are two Nurses looking after 4 beds. In the general ward 1 nurse looks after a number of kids who are in small rooms and separate from each other. Pretty much.

So because we are worrying parents, we have decided that one of us needs (wants) to be there 24/7. (like the nurses, we take it in turns, silly.) There is no reason to our worrying as the staff are wonderful but we want one of us to be there if Patrick wakes up so at least he isn't just amongst strangers.

When I left this evening he was just about waking up and Gemma was just about ready to doze off so I imagine her blog entry tomorrow may have some rude words in it.

He has still not taken any food from a bottle so they are feeding him via his tube but we hope that the speech and language person will come and assess him on Monday. He is still having his meds orally too which is nice because he doesn't have to have a cannula in place. Poor little man has bruises on top of bruises where they have had to try so many different places to get blood out or medication in. These bruises should now clear up at least.

The Neurologist came by and was really chuffed with Patrick's appearance and has now decided to have the EEG done on Monday. As I think we mentioned, it was due for today but this has been postponed. I am not sure what the reasoning for that was but I trust him to know his job, so we will wait and see how that goes.

Paddy is sounding better and looking so much better than even yesterday and is still not displaying any fits. Again, whilst we are encouraged by this, it still remains to be seen what the EEG shows us before we can start whooping from the roof. (I am currently half way up the ladder, standing by for that bit of good news!)

I can't really think of anything more to say right now but have no doubt that this whole post will be edited by my lovely wife (of 5 years, today incidentally) because she writes so much better than I do and takes more notice of what actually goes on in the Hospital.

So, nighty night everyone. Keep the prayers going for my little fighter and thank you all for such loving and strong support. I tell no lies when I say that your strength has kept us all going.

Nunight Paddy and Mummy from
Daddy, Ashley, Billy and Isaac
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Out of Intensive Care!!

Hiya, Patrick has had another good day today, still no fits!
He has been wide awake and enjoying lots of cuddles all day. He was moved out of Intensive Care at around 2:30pm. He is now back on high dependancy, which is 2 nurses to 4 beds so he is still in very safe hands, recieving lots of special attention. He still has his feeding tube, I did try and give him a bottle this afternoon but he didn't really take to it, wasn't sucking at all. He has been reffered to a speech and language therapist who will assess whether he is able to swallow properly and hopefully she'll be able to help get him back on the bottle. He will have another EEG tomorrow so fingers crossed that comes back with a slightly better result than before. He's still very rattly and sounds a bit like Darth Vader at the moment but he is coughing well and clearing his chest so hopefully that will clear up soon.

Anyway, it will be a long day tomorrow but hopefully another good one. We are taking Isaac in to see his little brother so he's really excited as he's missed him loads.

Thanks again for all your support and good wishes.

A camera? Already Dad? Are you kidding?

Our little fighter, awake at last!

Lots of reasons to smile today as our strong baby boy has done so well in the last 48hrs. He had started to show signs of waking yesterday but nothing could prepare us for seeing him wake up properly this afternoon. We were told by the nurses when we got to the hospital that he had been awake a couple of times in the morning but when we got there at lunchtime he was sound asleep just as he has been for over a week. After about an hour there, and with no warning Patrick woke up! It was magic to see him open his big blue eyes and look right at us. He looks so much better than he did 2 days ago, we are really thrilled with the progress he is making. Not only did our baby wake up today which was enough to cheer us up, but at 2 o'clock, his Dr decided he was strong enough to take him off the ventilator! He is now awake and breathing for himself and has had no physical fits in the last 48hrs.
I was able to to give Patrick a proper cuddle this afternoon, without the restrictions that all the tubes and wires bring, I was able to hold him right in close and sit him up, pat his back and give him lots of kisses! What's brilliant as well is that his physiotherapist has said that cuddles are really good for his recovery so to give him lots.
When they first took him off the ventilator they gave him an oxygen mask but by 5pm they took that away as well as he was doing so well. He stayed awake for hours while I washed him and changed him (the lactulose finally seems to be working!), he's still a little spacey but that's not surprising with the amount of drugs he's on. He's able to follow you with his eyes and responds well to sounds as well which is good. He's still got a bit of a dodgy chest so was coughing a lot and continuously dribbling but they use a long suction tube down his throat to clear him out and they also gave him a nebuliser for a little while to help him get comfortable enough to sleep.
Dr Thomas came round briefly this afternoon as was also really pleased that he seems to be responding well to the treatment. We probably won't get a clear picture of just how well he's doing until the end of the week when he will hopefully get another EEG but all the signs are encouraging.

I've just had a fright as the phone rang and I saw the hospital number come up, it was just his nurse Fran phoning to say she's just starting her shift and can't believe how well he looks and how great he's doing! The staff are as excited and as pleased as we are at his progress which is great. He's getting quite a following now as the nurses in every ward he's been on are all phoning for up-dates, even the nurses at Poole hospital have phoned several times to check on his progress.
Another thing that Fran just mentioned is that tomorrow I might be able to feed him! They're probably going to turn off his feeding tube for a few hours to make him hungry and see how he reacts and whether he can feed properly. I can't wait!

Well, it's been a long and emotional day and no doubt now that Patrick is not in a permanent slumber and we can do a lot more for him, the days ahead will be even longer and more hectic. So, I am going to do the sensible thing and get an early night, hopefully I'll sleep a lot better knowing that at the moment, things are looking up.