Happy 1st Birthday Patrick!!

Hiya, just a really quick one to say a big thank you for all the lovelly cards and gifts for Patrick's birthday, we had a great day on the farm. Thankfully Patrick had a good day with only 2-3 fits which was great (I wonder if they knew?). He seemed to like all his new toys and deffinately seems to have a taste for birthday cake!

Busy, Busy, Busy

Hiya, been a hectic couple of weeks with appointments all over the place.
We took Patrick to see a rep' over at the Child Development Centre to have a look at a new 'early activity system' from a company called Squiggle. It's pretty hard to explain but it's basically a play mat that has additional support, it's easier to post the link than to try and describe it! http://www.leckey.com/template.asp?parent=96&pid=293 We also looked at a couple of standing frames for him but neither were a perfect fit for him, apparently there's hundreds of different ones on the market to try so it might be a while until he gets one of those.
We then had to take him to the Wheelchair clinic to see a couple of 'special needs buggies'. Patrick has been fitted for a special buggy called a Phoenix, it's amazing what they can do these days as at first glance you wouldn't know that the pushchair was any different to a normal one but it's full of extra support and it will be fantastic for Patrick. At the moment he doesn't have proper support in his pushchair and has to stay reclined or he'd just 'flop' forward. In the Phoenix however it gives him the support to sit upright and he'll have the freedom to move his arms and legs properly. One thing we did want is for the buggy to be rear facing so we can see him properly, as we need to be able monitor his fits. Patrick's fits can be hard to spot so if he was facing away from us we'd miss them. Anyway, the company that makes the buggy are actually going to custom build it for Patrick rearward facing with a bit of a tilt so we can recline him if he's sleeping. We should get it in about 6 weeks. Thank goodness for NHS as these pushchairs cost thousands, we're very lucky to get such a great one, it's so new on the market it's not even on the internet so I can't post a link!

As you may have seen from the e-mail thats been sent round with some photo's, Patrick had his first pre-school session at Julia's House. This went really well and Patrick was really relaxed there and let his carer Pam look after him without a fuss. He was able to spend time in the sensory room which he seemed to love and he even did a painting! We stayed with him for his first session but next time we go we might slip out for a coffee which would be nice.

I finished the 6 week Parents course I was doing. I really enjoyed escaping once a week to attend the sessions and will miss it, it was a great group of parents, all with different experiences but we all got on well and had quite a laugh, hopefully we'll keep in touch as it is nice to talk to other Mums who really understand.

Thursday was hectic as we had a Portage session with a Speach and Language therapist at 9am followed by his development review at Christchurch hospital at 10:30. The speach and language therapist was quite pleased with him. She was able to hear him making a bit of noise before he fell asleep and she seemed to agree with what we've been saying, he's deffinately making progress as he is making a good variety of sounds, but he seems to be about 4 months behind. He has a lot of work to do but she was impressed with him really, he has just learnt how to do pat-a-cake, you have to bring his arms forward for him but he can just about clap his hands together. During the session we did pat-a-cake and when we stopped he gave us a deffinate look that said 'again' and kept clapping which was fantastic, he can't vocalise what he wants but if you look carefully you can see he's trying to communicate in his own way. We've been given lots of homework and ideas to try with Patrick, we're going to look at using sign language with him as well.

Patrick's development review went quite well although we wont get their report for a few weeks. Patrick was seen by his paediatrition and physio who both had a good look at him and could see a big difference from 8 months ago which is great. There is still an awful lot that's not right but the last time they assessed him properly he litterally couldn't do anything, he just layed on the floor and couldn't even see them, now he's rolling over, laughing, looking around the room and is responsive, all things that we didn't know would be possible for him.

I managed to speak to Fiona, Patrick's neurologist on Monday. We have been given a clinic appoinment on 28th Feb and she is putting in a request for another MRI. They are still waiting on some results but have had some back that are fine.

For some reason Patricks in-built alarm clock is playing up at the moment and he has been waking up at 3:30am! Nothing seems to settle him back to sleep, he's just wide awake and noisy from 3:30 onwards so as you can imagine, Martin and I are shattered. It's half term now so we don't have any medical appointments for a change. We're planning a nice day out on the farm for Patrick's birthday so hopefully the weather will stay nice.

Anyway, I realise that this post is dragging on now, I blame my tiredness for my ramblings! Hope everyone is well, I'll update with some birthday pics' later in the week.

Lots of Love, Gemma xxx

Julia's House

Hiya, Just wanted to update as we had a such fab day yesterday. I've mentioned before about a hospice called Julia's House that are going to be giving some respite care at home for Patrick. Well, I took Patrick over to the hospice itself for the first time yesterday as they held a parent and toddler group. Mum came with us and I have to say what a wonderful place Julia's House is and what a positive experience it was. I was quite nervous about going there if I'm honest as the image I had in my head is one of a clinical environment full of very poorly children and sad parents. I couldn't have been more wrong. As soon as we walked in we were greated by countless smiley faces and we instantly felt as ease. We were given a tour of the hospice that has amazing decor, all based on a beach theme and not a bit clinical or hospital like. The toddler group itself was great fun with about 6 children all with various types of disabilities, it was so nice to be able to take Patrick to a group with other children without him sticking out like a sore thumb, he blended in nicely. Patrick actually found the whole experience pretty exhausting and promptly fell asleep leaving me and Mum on our own to join in with the group sing-song, tamborines in hand, with so many enthusiastic carers around it was easy to go along with it and we sang 'Old McDonald and Row the boat' with gusto! When Patrick finally woke up we took him into the play room where they had lots of painting things out. Patrick was a bit quiet in his new surroundings so just sat and played with some sensory toys while we were able pick the brains of the staff and get some ideas. All the staff were so fantastic and new exactly how to handle all the children, the place has such an amazing positive energy that deffinately rubs off on you as you leave.

I've actually booked Patrick in for a pre-school session next Tuesday, I was that impressed. We can basically leave him in the very capable hands of Pam, his carer and she will look after him and do activities and play with him, they have a well equiped sensory room even take the children out for walks in good weather. Martin and I will stay with him for the first few sessions but they have a big conservatory overlooking their sensory garden that's set aside for parents to 'chill' in while the children are kept busy.

Patrick's carer Pam came out to see us at home today for a couple of hours and she seems great, really easy going and got stuck in with feeding Patrick and had a good cuddle which he didn't seem to mind at all. I've been told that Pam is a bit of an expert when it comes to children with epilepsy so if we do finally pluck up the courage to leave him with her I'm sure he'll be in good hands.

Anyway, that was it really, I have rung the hospital today and am waiting for a call back so will update if and when we get any more news. I have posted a couple of links on the blog, one is to the Julia's House website which has a virtual tour on it so you can see what I'm going on about, there is also a link to a site that sells sensory toys (Rompa) incase anyone is looking for ideas for Patrick's birthday. There are a couple of larger pieces of play equipment that I would like to get for Patrick so if anyone would just like to send him some pennies for his birthday that would be fine.

I have attached a photo of Patrick lying on his front demonstrating his strong neck, and how he can lift his head unaided (a very big deal for him).

Take care, love you lots, Gemma xx

Nothing to report

Hiya, sorry, no news to report just thought I'd better touch base.

Patrick's seizures or 'jerks' are still fairly stable, he's still having around 6 a day but he's tolerating them well, they're not too strong and they don't seem to be on the increase at the moment. We've had to put him on anti-biotics to try and help clear his chest. He's had a really bad chest for a few weeks now and at worst his caughing fits make him vomit so it's not nice for him. We've still not heard from the hospital about any more test results or when his next scan will be, I'm gonna try and get it touch with someone this week and find out when we're likely to get an appointment. I had hoped to have some news before his first birthday but that is looking unlikely.

The last couple of weeks have been hectic. We've had people coming and going every day which is a good thing really as we now have a social worker in place to help us who has been gathering information, also a carer called Pam from Julia's House Hospice is now on board so she'll be spending a few hours with us a couple of times over the next few weeks to get to know Patrick properly so she can then look after him at home for us if we want to go out and do anything.

Patrick had another Portage session this week as well which was encouraging. The good thing about Portage is that they focus on the positives and record what Patrick can do, not what he can't. We went through his record sheets and looked back to when he started last October and he has actually made a lot of progress in most areas. Sometimes the progress might be so small that it goes un-noticed until you sit down and go over these forms that ask simple things like 'can Patrick hold eye contact for 5 seconds or more?' Back in October the answer was a definate 'no' but now he has really good eye contact. Also, back in October he couldn't move off of his back, even with a helping hand, now he is always rolling over onto his side and can make almost make it right over, and before if you laid him on his front he couldn't move, he'd stay face down and would suffocate if you weren't there to lift his head, now laid on his front he can lift his head up and move it from side to side. He doesn't really like it on his front but it's part of his physio reigeme so he has to put up with it.

We're so proud of him for all he's achieved considering the year he's had, it's his 1st birthday on the 19th February which is unbelievable, it's been such a long year.

Anyway, as always I've got carried away, this was only supposed to be a quick one!

Hope everyone is doing ok, I would like to send best wishes to my friend Karen who has a son Luke with a similar condition to Patrick. Unfortunatley Luke has not been so good and has been in hospital since boxing day while the Dr's have struggled to get his seizures under control. They just took him home today though so hopefully things will improve quickly for them. Love to you all xxx