Busy, Busy, Busy! (Still)

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

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

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

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

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

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

Naomi House

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

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

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

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

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

Patrick's world...

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



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

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

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



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

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

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

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


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

Note from Martin

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

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

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

A frustrating week

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

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

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

Hope everyone is well, Love you lots, Gem xxx

We did it!!!

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

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

New Drug

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

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

Update

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

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

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

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

Lots of Love xxx

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