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 :-(

Latest scan results.

Hiya, we had the results of Patrick's latest MRI scan today and have some great news to share.

Since his last scan in March 2008 Patrick's brain has continued to develop and grow and the myeline (white matter) is developing too. This news confirms that he doesn't have a degenerative dissorder, which of course is great news. There are still questions surrounding the area of the brain that controls his functional movement, this area still isn't developing normally but we had anticipated that really as we know he's not made much progress physically in the last year. It would seem that there is damage to the white matter in that area and so his brain isn't able to send clear enough signals to control his movements. As this area is tiny and his brain is still very small it is difficult to get a clear enough picture to see the extent of the damage, we may get a clearer picture in the future.
This scan has also shown that the damage to his brain is consistent with massive trauma, or "'a catastrophic explosion" as his neuro put it! This sounds alarming but is the same as would be seen in a child with cerebral palsy who had been starved of oxygen at some point. This puts further weight on our theory that his episode in 'Status' is what has caused the long term damage rather than any kind of genetic or metabolic dissorder.

So, basically we can relax and be sure that Patrick's condition isn't going to get any worse over time, all the signs are there that he will keep making progress, he may not ever be very physically able but hopefully his communication skills etc will develop and improve with time and hard work.

His main problem now is his epilepsy and keeping that under control. He is still taking 4 strong anti-epileptic drugs but he is relatively seizure free, his last seizure was 4 weeks ago and that was a mild one. We will be weaning him off one of his drugs over the next 6 weeks (his Vigabatrin) as it isn't good for him to be on so many, hopefully with no nasty consiquences.

I hope I've explained all that in a way that makes sence, I'm a bit emotionally shattered today so may be talking gobbledygook!

Hiya, the last month has been a bit up and down. Patrick is still stable but he has had a few more mild seizures. He's also had trouble with what seems to be leg spasms/cramp. About a month ago he was having quite frequent episodes of this, he would suddenly start really crying in pain and he would draw up his right leg which would be tense and shaky. This lasted for around 10-15 mins with him really distraught and then he'd relax and calm down. We struggled to find a cause or a trigger for the episodes as it came on so suddenly, we were worried he was having some kind of seizure as we've seen seizures before that looked like stomach cramp. Anyway, he was wearing his orthotic boots a lot and I wondered if they might be a little tight so stopped him wearing them, since then he's not really had the cramp so I'm hoping that was all it was. We have spoken to his neurologist who said it could well be seizure related, he wouldn't be surprised given Patrick's history but without hard evidence and catching an episode on EEG it's impossible to say for sure. We'll just have to keep an eye on it and if it starts happening again look more into it. He doesn't need to wear the boots anymore anyway as they weren't doing enough for him, instead he's having some special foot splints made to keep his feet in a better position and hopefully stop his toes curling under.
Patrick has been given a back brace and new arm braces now to help with his posture and help prevent his elbows seizing up, he's taken to them quite well bless him, with his leg splints and foot splints he's got no chance of escaping!
He was due to have his annual MRI scan last week but unfortunately he caught a virus, just a cold really but it hit him hard and he's not been able to eat properly for a week without throwing up and he's got no energy so I had to cancel his scan and wait until they send out a new appointment. He was also due to see his paediatrician as well but it's all had to go on hold until he's well again.

May was quite an eventful month, lots of family stuff going on, in particular my sister Sharon's wedding. As it was local it was a bit less stressful than other occasions, the weather was fab and the hotel really looked after Patrick's needs well. My sister had arranged with the chef for them to give Patrick the same meal as everyone else but for them to puree it for him, well, the chef really went to town and produced an amazing plate of pureed lamb presented on a dinner plate in a pretty pattern with garnish etc.. I've never seen anything like it! It kinda put my pureed slop in a bowl to shame! It was a fantastic day, a sensory feast for Patrick with bubble machines everywhere and he loved the disco, all the noise and lights and his Grandma whizzing him round the dance floor in his chair, he's definitely a bit of a party animal, when he's awake that is!

We're still trying to find the right balance of drugs to keep him awake, we have dropped his carbemazapine down a bit but can't really tell if that's done the trick because he's been so poorly. We're seeing his neurologist next month so will discuss it further then.

We had some good news regarding Patrick's standing frame. At last the NHS had a change of heart and decided they could fund it for him, as far as I know the order has been placed and he should receive it soon.

That's about it for now, thankfully things have been pretty uneventful, or maybe we're just a lot more chilled out these days. I do feel we are a lot more relaxed around Patrick now and we try to just take everything in our stride. Things are that much better that I've made the decision to go back to work at last. I worked a few nights a week as a youth worker before I had Patrick but never went back after my maternity leave. They left the door open for me if I ever wanted to return and I think the time is right now. I'm only going back one evening a week and on a volunteer basis to start with to see how it goes. I'm really looking forward to it though as it will give me a bit of time away from Patrick so I can be 'Me' again. I'll be working at Somerford Youth Centre, just waiting for my criminal records check then I can start. I'm also looking at joining a choir. For anyone who doesn't know me from before Patrick I used to sing lead vocals in various bournemouth based bands but again, haven't felt able to since having Patrick. Anyway, I found a local choir called 'The Funky Choir co.' who do all contemporary stuff that I like so I'll be able to sing which I love and is a massive stress reliever but without the pressure of being out front.

So that's about it for now, I'll update again when we have some more news following his hospital appointments.

Lots of Love
Gemma xx

Hiya, I realised it's been a while since I updated the blog so thought I'd better get my finger out!

It's been 13 weeks now since Patrick's seizures stopped. He did have one a few weeks ago on Good Friday though, he'd just gone to sleep but woke up suddenly and went a bit spaced out. His right leg was jerking rhythmically and with every jerk he grinned. It was all very mild but went on for a good few minutes. It was very upsetting at the time as he'd gone for so long without having any and it caught us off guard a bit. Thankfully he hasn't had any more since then and continues to be more alert which is great.

At a recent physio assessment his therapist wasn't too happy with his progress. It seems his arms and legs have got tighter over time in spite of me doing his exercises regularly. He will be getting new arm splints fitted to try and loosen his arm muscles and stop him keeping them bent at the elbows. They are also getting him a corset like back brace. He tends to lean over to the right a lot and can't sit up straight unaided so they hope that the brace will help correct his posture a bit and help support him when sitting. When he sits up straight his head control is a lot better so having the back brace will help with that too. Bless him, he already has braces for his legs, he's gonna end up looking like the tin man at this rate!

He's getting on really well with his glasses, they don't bother him at all really. He can't take them off as they're hooked right over his ears but somehow he manages to knock them off his nose and into his mouth and he chews them!

The change in Patrick's medication regime has made little difference really. For the first few days it seemed it was working as he was awake nearly all day and slept all night but after about a week he was back to sleeping all morning, right through lunch until 3pm on some days. Now he seems to have a few good days where he's awake all day followed by a few really sleepy days. I'm going to speak to his neurologist soon and see if we can reduce at least one of the meds a bit to see if that helps.

We had a great Easter holidays, thanks to the weather the boys were able to get out on the trampoline a lot (Patrick loves it) and we caught up with lots of family and friends.
We're off to Naomi House on Sunday for a few days, our first break since January so we're really looking forward to that.

That's about it for now, not a lot to report I'm afraid but I suppose that's good news really. We're just plodding along nicely all healthy and happy, long may it continue!

I did it!!!

Hiya,

Thank you so much to all those who sponsored me to abseil off the tower, as you can see from the big grin on my face I loved it! I raised nearly £250 for Julia's House and Help a local child and had a fab day xxx