Tired Bunny....

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

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

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

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

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

Busy, Busy, Busy! (Still)

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

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

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

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

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

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

Naomi House

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

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

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

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

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