Progress...

Hiya,

Just thought I'd touch base and let you know how things are. Still no more news regarding test results, we'll let you know as soon as we know anything.

The last couple of weeks have been hectic but fairly positive. We have been busy with appointments with various agencies. Social services have responded to our complaint and apologised for their mistakes and fully accepted that Patrick does meet their criteria so that's good. We're just waiting to be allocated a social worker who can start planning what help we can receive.
We had a visit from one of Patrick's Occupational Therapist's who has fitted him out for his very own special seating system. It will replace the hi-lo chair that he has been using and it's very smart.

Patrick has had a great week in terms of his development. He has been really alert over the past few days and is more smiley than usual. Usually it's really difficult to get a smile from him and it takes a lot of hands on stimulation like tickling to get a reaction but for the last day or so he's been smiling at everything. I only have to look at him and he gives me one of his gorgeous cheeky grins and he's also started smiling at certain toys which is brilliant. He's making different sounds too and has managed a 'Ma' sound which is great. It also seems he is showing signs of trying to communicate, in particular when he's lost his dummy, he'll 'click' his tongue to show he wants it which is just brilliant.
Patrick actually managed to stay awake for a whole Portage session last week which was an achievement in itself! He's not too keen on anything like that, he doesn't really like other people trying to work with him and will only participate if I'm in his line of sight, but he did really well and was looking at himself in the mirror which sounds like an easy task but for Patrick it's good progress as before he's not even looked at the mirror, let alone been able to look at his reflection. I've also caught him watching the TV a couple of times as well, again, this is progress as he's never shown any interest before and even when I've sat him right in front to see if he'll watch he'd just look anywhere but at the screen.

So, at the moment we're encouraged, he's starting off the year well so let's hope these small signs of progress continue. Of course for Patrick though it can never be all good news, as unfortunately he's really 'jerky' at the moment. I'm not sure which medication is not quite right but he had a few days when he was only having one or two very mild jerks and now all of a sudden that's increased and he seems to have a bad hour when he'll have up to 6 lots of jerks. This happens a few times a day and again at night so we're keeping a close eye on that and will speak to Fiona next week.
Night times are a bit of a nightmare at the moment as Patrick seems to have developed an in-built alarm clock that wakes him up at 3:30 every night. He's quite happy to just lie there in his bed wide awake and singing to himself and grinning at me when I'm try to convince him he needs to sleep. This can go on for 2 hours until he does fall asleep again only to re-awake at 7am. So as you can imagine, we're pretty knackered!

I've started my six week 'supportive parenting course'. The first lesson went really well once I got past the introductions. It seems that I'm able to talk about Patrick to anyone in a matter of fact way without feeling upset until I'm put on the spot. When it was my turn to introduce myself and tell the others why I was there I fell to pieces and found it really difficult to even say Patrick's name let alone talk about his condition. I just burst into tears which was really quite embarrassing but also pretty normal I suppose, the others were great and once I was able to explain our situation they were all understanding which helped. Anyway, the course covers things like, dealing with fatigue and stress, time management and learning to deal with emotions which, judging by my outburst, I could really do with!

So, that's where we are at the moment, I'm feeling quite positive and am looking forward to a week of celebrations as it's my nephew Owen's birthday on Tuesday, followed by mine on Wednesday and my brother Alec's the day after!

Hope everyone is well and enjoying the new year.
Lots of Love, Gemma

P.S I will try and get some good video of Patrick being smiley and happy to post on here soon.

Still no answers...

Hiya,

Just a quick one to say we had an appointment with Fiona, Patrick's neurologist today to get the results of the extensive load of blood tests etc

There are still a couple of results outstanding but so far everything has come back normal.

I suppose this is good news as they are able to rule a lot out but it would be nice to know what we're dealing with.

So, it's another waiting game now. They're waiting on a couple of the genetic test results to come back which could take another month. By the time they come back it will be time to do another MRI scan and then we'll see if there's been any more loss of tissue.

If these other tests come back normal and they draw a blank on everything then it will be time to speak to Great Ormond Street. Hopefully we'd be able to just send his notes up rather than have to go up ourselves as I think the disruption that would cause would be a nightmare. Anyway, we'll cross that bridge if and when we have to.

In general though Fiona was really pleased with Patrick. He looks well and was fairly alert when she saw him so she was able to see that he responds well to people and behaves appropriately, rubbing his eyes when he's tired, moaning if you take his dummy away, simple things like that are all positive things. At the moment we can safely say that he's not losing any skills, he's not necessarily progressing much either but Fiona repeated what she'd said when we first got the scan results, she can't believe from looking at him that the results were so bad, it just doesn't make sense.

Anyway, I guess time will tell.

For now we're back to carrying on as normal, with that said I have a hungry Patrick to feed.

Lots of Love

xxxxxx

Happy New Year 2008 xxx

Well, 2008 is here and by the look of my diary already I just know it's gonna be a hectic one!

We had a really nice family Christmas, lots of love and laughter all the way. Patrick (bless him) was pretty overwhelmed by it all and was very quiet for a few days but as things have settled down a bit, he's coming back to being his normal, happy, noisy self. His seizures increased in intensity over xmas and boxing day but after speaking to Fiona and putting him back on the carbemazepine they have settled again and he is only having one or two a day.

Sorry, I'm just gonna interrupt myself to let you know what is going on around me. Patrick is asleep on my lap and Isaac is getting dressed but he has only got as far as his new 'big boy boxer shorts'. He is now trying to get my attention to show me his 'special super punching moves'. Isaac thinks that if he wears his boxers it means he is a 'boxer' and must practise his technique. I just love the way his 5yr old brain works!

I would just like to say a big thank you to all those who gave us so many lovely gifts for Christmas and Isaac's birthday. I had the good intentions of sending out thank you cards but realistically I know that it's doubtful I'll find the time but you know that we are very grateful for everything. Isaac got everything on his wish list and is working his way through all his new toys. Patrick is taking his time, too many new things freak him out a bit so we introduce new things slowly.

As I said at the start, my diary is pretty full for the next few weeks, we're off to Southampton to get Patrick's test results tomorrow, Thursday we have social services coming round to discuss how they can help us (after they refused us help and we had to put a formal complaint in). Then next week we have visits from Homestart and Portage and Patrick is getting fitted for a new chair. I am off to college next Wednesday to start a 6 week course to learn all about parenting a child with disabilities so that should be helpful. Apparently they teach you ways to cope with stress and sleep deprivation so that will be useful.

So that is how 2008 will be for us, non stop from the start. It felt strange sitting up waiting for the new year to kick in, I felt quite sad as I sat watching Patrick sleeping, he's so blissfully unaware of what lies in store. I felt a bit jealous watching people on TV enjoying themselves wishing each other a happy new year, full of good cheer and high expectations for the year ahead, while we're sat waiting for the unknown, unable to make plans and unsure ourselves of what lies ahead. We know we're gonna have some tough times ahead and it's all out of our control. I think I was asleep by about 00:05 and woke up this morning feeling much better.

2008 bring it on! We can deal with anything, bad or good, with love and laughter in our hearts we'll be just fine. Yes we will have days ahead that will be difficult but we'll pack a lot of smiles into the rest and I'm sure by this time next year we'll have plenty of fond memories to look back on.

So, happy new year to all of you, I hope that 2008 brings you many happy days.

Take care, Love Gemma xxxx

Christmas Wishes xxx

Hiya,

It has been a strange and eventful year for us as you all know. I can't quite believe how quickly this year has flown by. When you look back to the beginning of this blog and see all that has happened, it's quite unbelievable how we've packed it all in. We've certainly had plenty of tough times but plenty of smiles along the way.

I would like to take this opportunity to say a big thank you to all those involved in any way with Patrick's care. Without the support from special people like Fiona (Patrick's Neurologist) and Janet (our support worker) and the many others that help us along the way, we really wouldn't be able to cope.

I would also like to give a massive thank you to my Mum, Jackie who has been a huge support to us all from the start. Mum, I love you loads, thanks a million.

2007 has been a crazy year and 2008 looks set to be just as busy, who knows what lies ahead. All we can say is that we will continue to stay strong and keep smiling no matter what.

As always we will continue to up date you as and when we have any news, we get Patrick's latest blood results on 3rd January so look out for info soon after. Today Patrick is stable, his seizures aren't too bad although it looks like he is having 'facial' seizures again since we got him off the carbemazepine. We will speak to Fiona when we can and try and get these under control again.

Isaac had a fab 5th birthday yesterday, he has been an absolute star throughout the year and is really looking forward to Christmas.

So, with all that said, have a fabulous Christmas and a wonderful new year!

Welcome to Holland

Hiya,

Found this on the internet and thought it summed it all up pretty well...

"Welcome to Holland"
By Emily Perl Kingsley, 1987. All rights reserved.

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very very significant loss. But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Poorly Boys

Hiya,

I am fed up this week! Both Patrick and Isaac have been really poorly for the last couple of weeks. Isaac has missed loads of school, first with a tummy bug and now he has a stinking cold with a killer cough that at it's worst makes him vomit, poor thing.
Patrick is suffering with the same illness, he's had a tummy bug for over a week now and has also got a really bad cold and he also has some kind of eye infection as well! He's really feeling sorry for himself as his seizures have been quite bad again over the last week. I guess as he has diarrhea he's not able to absorb his meds properly. We're a bit worried really but have been in touch with someone at Southampton who said just to keep a close eye on him and use the medazalam if we need to (emergency anti-convulsant). If his tummy bug doesn't clear up soon we may have to consider taking him into hospital so they can give him his meds another way.
We're hoping to send Isaac back in to school tomorrow as he has his nativity on Thursday and he's missed loads of rehearsals already. He also has his birthday party to look forward to on Saturday so hopefully he'll be feeling much better by then.

Anyway, we're generally enjoying the festive season and have all our decs up and got the Christmas shopping sorted.
Hope everyone else is fine and not struck down with the lurgy like we are!

Merry Christmas, Lots of Love, Gemma xxx

Here is a special clip of our clever little boy feeding himself for the very first time. This is a major achievement for him as he usually cannot hold anything or make coordinated movements so we were both in tears and very proud. He's a little bit shaky and unfortunately took too big a bite and threw up but we can work on portion control another day!