Sponsored Walk Update...

Well it seems an age ago now but we had a really successful fundraising day back in August when a team of about 20 of us hit the promenade and walked for 5 miles to raise money for new equipment for Patrick. It amazed me at the time the amount of support we got on the day as the wind and rain decided to join us but we marched on, kids in tow without a moan from any of them. I've never seen the beach so empty as it was that day in August which made it all the easier for us. Now that all the sponsor money has been collected I can happily announce that we raised around £1250 which has enabled us to buy Patrick an amazing off-road buggy making walks in the country and down the beach or anywhere on grass accessible to him which is just brilliant. We've also just ordered him a p-pod bean bag seat which will give him some comfort at home rather than being plonked on the floor all the time! We have enough funds spare to help sort out his bedroom which we hope to have done in a few weeks time (he currently shares with us). We'll be able to construct a change table for him and make it a great space for a growing boy.

With all that said I have to say a massive thanks to all those who sponsored us and gave there time and energy on the day, I am humbled and honoured that we have so many great friends and family.

Loving Life

WoW what a mad mad start to the Summer! We had a fab time in Gran Canaria, got stuck out there amidst the volcano crisis but Thomas Cook were excellent and looked after us really well. Patrick travelled really well, he was a bit more sleepy than usual during the days as it was so hot out there but he came alive in the evenings and we all had a really nice, relaxed family break.We've been back for a while now and Patrick's been going to playgroup twice a week which he loves! He gets really excited on school days and always comes out smiling and laughing. He's only been there for a term and has his last day there on Monday but he starts big school nursery in September which will be brilliant for him. He's got a place at our first choice of schools, Linwood School which I'm sure he'll do really well at.
It's hard to believe we've reached this point, there have deffinately been times over the past fews years where I wondered if he'd ever make it but I'm so happy to say that he's doing so well, so happy and healthy it really is amazing how far he's come. His epilepsy is well controlled again after a slight downward turn as we weaned one of his meds off. We've since put him back on the drug and he's not really having any seizures. Physically he's grown again (he really is a big boy) and his head control and trunk are getting stronger all the time.
We're at the start of the summer holidays now and have many fun packed days planned. We're starting with a trip to Naomi House though for some quality time and then we're off to London for a few days to visit friends and relatives and at the end of August we're off down to Devon for a week in a big country pad with 23 of our relatives, so loads of magical memories to be made in the weeks ahead!

One thing we're also doing in August is a sponsored walk to raise some money to buy Patrick a special comfy seat and an 'all-terrain' buggy. We are determined that Patrick will get to experience as much of life as possible and feel that he would really benefit from these items, especially the buggy as we'll be able to take him into the forest and down to the beach which will be fun for him and Isaac. The walk will be held on the 14th August and will be 5 miles long from Hengistbury Head to Bournemouth Peir. We are looking for volunteers who wouldn't mind walking with us and getting friends and family to sponsor them. If you would be interested please let me know asap and I will send you a sponsor form. If you can't do the walk but would like to sponsor me and Isaac then you can do so easily by using Paypal, we have a special donation page that you can use to donate.

Pennies for Patrick

Thanks to all those who are already signed up for the walk, we're looking forward to it.

Well, it's been a good start to 2010 so far. Patrick had been having a few seizures over xmas and new year but after a consultation with his neurologist and a tweak of his meds he's doing better.
We're in the process of starting his statement at the moment, should have been sorted last year but there weren't any educational psychologists to do the assessments! As part of the process we've been getting reports from all the professionals that work with Patrick and surprisingly it's been quite positive. There is lots of focus on what he can't do, obviously they have to concentrate on these to make sure he gets the best support at school but there has also been a lot of really positive comments made about what a happy little boy he is and how much he has progressed over the past year, much more than is expected of him really. We've seen a big improvement in his awareness, he can associate object with activities now e.g if I show him his headphones he gets excited as he loves his music. When I get back from dropping Isaac at school he hears me set the car alarm (it beeps) and looks to the door for me coming in. Both these skills are really important and is a good sign for his future communication.
It's been interesting getting these reports as for the first time we have it in writing what Patrick's diagnosis is. It's a mixture of a few things and isn't straight forward but will make it easier to introduce him to people.
1) Epileptic Encephalopathy - loss of skills in all domains of functioning including cognitive, behavioural, communication and motor that occurs with epilepsy and appears to be caused by epilepsy.
2) Cerebral Palsy - a group of permanent disorders of the development of movement and posture, causing activity limitation, that are attributed to non progressive disturbances that occurred in the developing fetal or infant brain. The motor disorders of cerebral palsy are often accompanied by disturbances of sensation, perception, cognition, communication, and behaviour, by epilepsy, and by secondary musculoskeletal problems.
3) Cerebral Atrophy - a common feature of many of the diseases that affect the brain. Atrophy of any tissue means loss of cells. In brain tissue, atrophy describes a loss of neurons and the connections between them. Atrophy can be generalized, which means that all of the brain has shrunk; or it can be focal, affecting only a limited area of the brain and resulting in a decrease of the functions that area of the brain controls.
4) Epilepsy

It's good to have these 'labels' for him but none of these can tell us how or why his seizures were triggered in the first place. Epileptic Encephalopathy is usually linked to certain syndromes which thankfully Patrick doesn't have so we're none the wiser really which suits us fine.
Patrick had his 3rd birthday a few weeks ago, I can't believe how fast the time has gone! He had a great weekend with lots of family and friends. I made him a special sensory tent by converting a pop-up play tent which he loves and he got lots of money towards play equipment.

I'd just like to mention the Variety club charity who recently funded Patrick's new super-duper supportive car seat, make sure you all buy one of their gold heart pin badges!
We're off to Gran Canaria for the Easter holidays which will be our first time abroad with Patrick, lots of organising and panicking to be done over the next 3 weeks but I can't wait to get a bit of sun!
I'll hopefully have loads of good photo's to upload after that so look out for the next post!

HO HO HO Merry Christmas!!

Just wanted to wish everyone a very Merry Christmas and a fab new year, hope 2010 is a good one!! Patrick has gone 21 weeks without any seizures now which is amazing, he's loving the xmas season with all the lights and tinsel, it's a sensory overload! We're all really looking forward to a hectic week ahead with Isaac's 7th birthday on 22nd and then everyone at ours for Christmas day then up to London for boxing day with family there. We have managed to book a few days at Naomi House in between xmas and new year just to relax and recover which will be well needed by then.

I hope you like my little snowmen, they dressed up for the Julia's House Christmas party last weekend, I don't think Patrick was too impressed!

Lots of love to everyone and thanks for all your support in 2009 xxxx

Found this beautiful song by Mark Schultz, just click on the title and it will take you to the you tube video.

He's My Son

A NOTE TO NEW FOLLOWERS

I know that other Mums and Dads out there have come accross Patrick's blog as they desperately search for answers and hope for their own children (you know who you are). I know it is really important to find other people who understand that you can talk to, please feel free to e-mail me directly at gemconyard@yahoo.co.uk or check out Patrick's Facebook group Patrick's Progress

Wow, didn't realise it had been so long since my last post! Really sorry for the long gap in between news, I know there are some followers of the blog that look forward to seeing how well Patrick is doing and at the moment he is doing very well.

A lot has happened over the past few months so I'll try and fit it all in, Patrick has been seizure free for 16 weeks now, his best run yet. He still has the odd 'jerk' and little spaced out episodes but very few and far between and always very brief. He has settled into a good routine and is sleeping much better, from 9pm - 6am with usually a 2hr nap before lunch then he's wide awake, alert and playful for the rest of the day. He is getting much stronger and his head control has really improved over the last few months, he only loses it when he is tired. He is much more interested in his toys these days. I made a few adaptions to his buggy out of frustration that he couldn't reach his toys without help and I couldn't get a play arch to fit it, I managed to rig a couple of hooks to the sides so I could hang some toys in his line of sight and close enough so he could reach them and it seemed to work wonders. When we're out and about now I hang his favourite tambourine for him and he bashes away all around the shops, much to the annoyance of everyone else but I love it!
I've been keeping really busy and have been getting creative with my new toy, my sewing machine. I was getting so frustrated at the cost of special needs clothing, bibs etc that I've now started a dressmaking course and have set up a website selling bandanna style bibs and hope to be making and selling vests and sleepsuits in bigger children's sizes once I've finished the course. www.littlegreenfrog.net is the web address and all proceeds from the sales go towards stuff for Patrick.
With my new found creativity I've gone a bit gadget crazy, since I've made Patrick some support cushions for his buggy that help bring his arms forward and another one for his positional chair, it makes me mad that his equipment costs at least £2000 but still none of his seats etc have been right for him and he would always sit with bent arms, hands in the air, unless I put his splints on. Now with his new support cushions his physio has already noticed an improvement in his arms, they aren't as tight as they used to be which is great. I've also made him a special support for his bed as one of the problems we have is that he wriggles around in his bed and slips under the covers, as he can't then pull himself out it's always a worry for us that he'll suffocate so I spend all night adjusting him and pulling him back up the bed. With his new support he stays where he's put all night which helps him and me sleep better.

We've finally managed to get the educational psyhcologist round to get the ball rolling on his statement process which couldn't come sooner. We went to visit Linwood School recently and were really impressed. I think it's likely that the council will offer him a place at Linwood and we're more than happy with that. We got on really well with the teacher there and she even invited me along to a teacher training day about switches and switch adapted toys as I'd been speaking to Patrick's OT about them. With the money made from bibs sales and some very generous donations from Patrick's Grandparents we've managed to buy Patrick a selection of switches and switch devices which we hope will start him on the road to communication. The link I've added is to a you tube clip of another little boy playing with a switch similar to Patrick's, just to show you what a switch is, I will try and get some good video footage of Patrick soon.We've just returned from our holiday at Centre Parcs which was brilliant. Patrick was on top form all week and as you can see from the photo's, he had a really great time. As ever we made sure Patrick was included in everything we did. We took him swimming, the pools are really warm there and the disabled facilities are great which makes life a lot easier. We went ten-pin bowling and with Isaac's help Patrick knocked them all down! He joined us for a round of mini golf and even helped me with on the driving game in the arcade!
We have a mad schedule over the coming weeks, it's always hectic this time of year but even more so as I'm going into hospital for a few days to have my wisdom teeth out (would usually be done in a day but I have a blood dissorder so need extra treatment). I'm really not looking forward to it as I hate the idea that I'm going to be away from my babies and out of action for a few days, I'm sure they'll all cope without me, not sure I'll cope well without them though :-(