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

Play time with Patrick

Another clip just to show you how happy and smiley Patrick can be! xx

All is well...

Hiya, Just a quick note to let you know that things are still fairly calm and that Patrick is still doing really well. He is still having these 'jerks' about 2-3 episodes a day but they are not distressing for him or harmful.

His development is still coming along nicely and he is always rolling around the floor now, he can now roll all the way from his back onto his front which is amazing. We just need to work on building up his arm muscles as they are still too weak for him to hold his weight. He is extremely vocal and getting louder and louder, he is currently laying on the floor screaming at the top of his voice, he's not unhappy, far from it, he's just making sure we know he's here.

Patrick's physio session went well last week and both the Physio therapist and Occupational therapist could see a definite improvement since before Xmas. They managed to get him strapped into a 'stander' which was a strange contraption that actually takes all his weight and holds him upright in a standing position. This was pretty strange as I'm only used to seeing Patrick laying down or sitting, for 11 months old he's actually really tall. Hopefully after he's had a few more practises in the stander at his physio sessions we might be able to have one at home for him.

We had a great week last week, we went for a meal out for my birthday. It was the first time we'd all been out as a family (my Mum and Step dad Ian came too). We took Patrick's hi-lo chair with us so he could join us at the table (he can't use a standard high chair) and had a really nice time.

On Friday night we actually had my Mum babysit and Martin and I went out for dinner with Martin's brother John and his wife Lesley. This was a milestone for us as we've never left Patrick before but as he is the most stable he's been and my Mum has been so involved with Patrick anyway we were able to relax and have a nice evening. (in fact the last time we went out without the kids was my birthday last year!)

Isaac's schedule has got a lot more hectic as we've booked him a course of swimming lessons and he's joined the Bransgore Under 6 football team so he's pleased about that.

That's about it for now really I'm gonna post a load of photo's that I've taken on my new camera, and hopefully some video of Patrick if I can get it to work.

Take Care, Hope every one is well.

ps. I would just like to point out that although it may look like I am bouncing his face on the floor, it is in fact a padded mat and he isn't actually touching it very much. No Patricks were hurt during the making of this video. Please also excuse the TV volume in the background. Martin (Director - available for Weddings, Bar Mitzvahs and happy slappings)

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