Wednesday 28 May 2008

Thanks xx



Hiya,




Just wanted to say a massive thank you to all those who have sponsored me for 'Race for Life' this Sunday, hopefully the rain will hold off and we'll have a great day.


Just to update, Patrick is over his chesty cold and for the last 2 days has been on top form, really alert and happy and only having the odd mild fit. This further proves what a difference it makes to his seizures when he's a bit under the weather, last week his fits were strong and long. We have been reducing his vigabatrin and he's now only on 3.5m twice a day so I think it's safe to say that the reduction isn't having a negative effect. I'm taking him in for his chicken pox vaccination tomorrow, they couldn't do it last week as he was too poorly but I got him some anti-biotics that have helped clear his chest.


We're still having trouble getting his new wheels, he was supposed to get them last Friday but yet again we were told his buggy hadn't arrived, the assessor is off this week so we have to wait until Monday to find out when we can have it.


After a visit from Patrick's social services OT last week we are now having re-submit our application for housing. The OT has had to close Patrick's file as we haven't got room for any more equipment which is frustrating, she sent a letter to the housing dept who have told us we have to fill in a whole lot of new forms and give more details about Patrick's needs and then they might give our file to a medical panel who would decide if we could get put at the top of the list to be re-housed. The whole process just adds more time to the wait and we're starting to really struggle now, Patrick is just getting bigger and heavier and more difficult to handle.


I had a really nice e-mail from across the globe yesterday, a woman got in touch who has a nephew called Bryce who is 10 months old and has epilepsy and loss of white matter, very similar to Patrick. It's always nice to hear from other families with special children, it always amazes me how our story can reach so many people and touch so many lives.


Anyway, lots to do, no time to do it!

Take care, lots of love


Gemma xx

Wednesday 21 May 2008

A busy few weeks


Sorry it's been a while since the last post, the last few weeks have been pretty hectic, nice hectic though I'm pleased to say. The weekend before last we had a visit from Martin's sisters, Mary and Angela and Martin's nephew Dan and his gorgeous daughter Honey. The weather was fabulous so we made good use of it and had a day out at the local food festival followed by fish and chips on the beach, good old fashioned family time, lovely. We were also able to set up Patrick's new 'Waterway' pool in the garden for the first time. It took him a few minutes to get over the initial shock of being plunged in the water on his own but then he seemed to relax and just laid back and floated in the water, pushing himself off the side every so often. The pool is supposed to help him build up his muscles and encourage movement, I think if he uses it regularly enough it should work but unfortunately he's been full of a cold since that weekend so we've not put him in it again yet.

Patrick had another good physio session last Thursday, he saw his physio and OT who are both pleased with his progress. They said that his sitting position is good and he's showing much more potential than they had previously thought he might. However, they are worried about his elbows as they are really tight and need a lot of work to loosen them up; we have to stretch his arms right out several times a day which is quite uncomfortable for him but if we can't improve them with the exercises he may end up needing splints which wouldn't be nice. Patrick has now been given a standing frame to use at home. They have managed to hunt out one that can be folded away which is better as we are so limited on space at home. He should be using the frame for about an hour a day, at the moment he manages about 20 mins before getting the hump so we'll build him up to an hour over time. We had a visit from Anne, Patrick's new social services OT, yesterday who has had to close his file for now because although she could get us extra equipment for Patrick, we just don't have the space to accommodate any more.


The weekend just gone was an extra special one as we went to Warwick for my Dad and Allison's wedding. We made a weekend of it and went up on the Friday. It was a bit of a nightmare with everything we had to take; we took Patrick's Bee chair and his pushchair and he had one little suitcase just for his meds! Anyone seeing us arrive would have thought we were there for the week! Anyway, we had an amazing weekend, the wedding was fabulous and both Patrick and Isaac were on best behaviour - Isaac was a ring bearer with his cousin Owen and they did a smashing job. The only downside to the whole weekend was the fact that due to his cough and teething Patrick's epilepsy was quite bad, during the wedding service he actually had a seizure that lasted 10 mins, so we were a little on edge the rest of the day but he was OK.
On the Sunday after the wedding we went to visit our friends Karen and Gordon who only live about 30 mins from Warwick. They have just built their son Luke a little sensory room so Patrick was able to try it out which was great.

This week has been fairly quiet so far, Patrick was supposed to have his chicken pox vaccine on Monday but because his chest is still bad they wont do it so we've re-scheduled for next Thursday. We have Martins Dad coming down tomorrow for a few days, it's half term next week, we've not got anything planned but hopefully the weather will stay nice and we'll be able to give Patrick's new buggy a good run out (we should be picking it up this Friday). We are going to visit Naomi House next Friday as we finally got the news that Patrick has been accepted by them. We get 14 days pro-rata to use over the course of the year, Naomi house is in Winchester and does overnight respite care where we can leave Patrick in a room with the carers while we have use of a family room upstairs so it's not like we're leaving him completely and at least we might finally be able to get a couple of nights sleep. I'll let you know more after we've been there.

Anyway, I think that's about it for now, sorry it's been a long post.

Hope everyone is well and thank you all for your continued support and good wishes.

Lots of Love xxx

Friday 9 May 2008

Patrick's New Buggy


Had a really frustrating few weeks trying to get hold of Patrick's new pushchair. We should have had it by the end of March but were told the manufacturers were holding things up. We then found the buggy had been delivered to the wheelchair clinic two weeks ago but had to be assessed and yesterday we were told that the buggy was no good and they wouldn't let us have it! You can imagine our frustration, especially as Patrick has seriously outgrown his normal pushchair and it's getting harder and harder to take him out.

Anyway, they invited us down to the clinic today to check out a different buggy called a 'Bug' (pictured above). It's not quite as flashy and 'normal' looking as the one he was getting but this new one is actually much better. The whole seat looks much more comfy and supportive and it just looks like a more sophisticated, expensive bit of kit. We're a bit annoyed that we weren't offered this one originally but at least he's getting one now and it should only take 2 weeks to come through. We've been lent an old one in the meantime which is a bit 80's looking and has obviously had a lot of use but it's only for a couple of weeks so we'll put up with that.

Friday 2 May 2008

The morning after...

It's been a strange 24hrs, yesterday was such a roller coaster of emotions. I spent the morning visiting my late Grandma's grave to place flowers. I shed some tears and said some prayers for some good news but didn't get my hopes up. As we made our way to the hospital for the results I felt physically sick all the way, I have no finger nails left at all! I wouldn't say I was pessimistic but I was ready to hear some bad news. When the Dr said those magical words 'he hasn't lost any more white matter' it took a few seconds to process the news, when she went on to say that unusually it seemed that his brain was desperately trying to repair itself I nearly cried. I have never felt so relieved in all my life, I also felt so proud of our special, strong, amazing little boy. He is such a fighter and just an inspiration.

It was a strange evening, although we are obviously all thrilled with the news it was almost an anti-climax. That may sound strange but I suppose trying to analyse it, we have always been very positive and happy, even with the thought of losing Patrick in the back our minds, and now we still feel positive and happy. So not a lot had changed.

Today I woke up with a renewed energy, I feel 'up for it' (whatever 'it' is?!). As I walked Isaac to school the sun wash shining and I had a spring in my step, I looked at Isaac with a smile as one thing that has gone is the fear of having to explain to Isaac why his brother was dieing. That sounds horrible but throughout all of this, as soon as we were told originally that Patrick's condition was terminal that has been my biggest fear, Isaac adores Patrick and I had no idea how I would deal with Isaac if Patrick did deteriorate. For now I don't have to worry.

As I'm writing this I'm welling up and the sense of relief is growing stronger, I guess the good news is slowly still sinking in. I haven't told anyone this but over the last 6 months I have had many nightmares of having to plan and attend Patrick's funeral, morbid as it may seem that has been our reality. That reality has gone and that is the most wonderful feeling. I have always been too scared to look to the future, choosing instead to live each day at a time, now I can look to the future and still see Patrick in it, smiling away. That's done it, the tears are out! I think I need a good cry anyway.

I don't think we will ever lose our fears completely, Patrick still has a long hard journey ahead of him, without knowing more about the damage to his brain controlling movement, we don't know how well he might progress and his epilepsy is still a danger but instead of looking for a sign he's losing skills I can relax and look at signs he's gaining them.

Martin and I have both said this morning that however relieved and happy we are at our news, we both feel a sense of guilt for all the other parents we are in contact with who are waiting for some good news themselves. With any luck their good news will come, I was thrilled to read Jude's blog this morning to see that he had smiled, twice!

Anyway, I'd better put this renewed energy to some good use and go and do the washing up, I'm not sure how long it will last!

Thursday 1 May 2008

News just in...............


Hi Everyone


We have just got home from the Hospital and have got Patrick's MRI results. Guess what - he passed!


The short answer is that it is good news basically.


There is no sign of further loss of white matter that they can see which is brilliant news for us as you can imagine. It also looks like the brain is trying to regenerate some areas where there has been loss and generally his brain has matured and grown. That is also very good news.


The ratio of grey to white matter is still not as it should be but again, no signs of it worsening and they have now been able to identify that the area responsible for his limbs (motor and nerves) is lacking in growth and structure. While this is an area of concern it is also good that it has shown on the MRI as investigations can continue in that area now. The part of the brain that links both sides has shown great progress in growth and structure/maturity too. This also controls or has an affect on his co-ordination.


The structure of the outside of Patrick's brain is also showing great improvement and has all of the characteristics that is expected. All of the bumps, hills and valleys as it were, so we are really pleased about that too.


All in all, a great result for Patrick and wonderful news for us, his family. We still don't know what that means for his future but we see that future as being far less bleak and a lot less scary.


We are on cloud nine at the moment and are trying to take in the news fully but rest assured - we are very happy bunnies right now. What a great kick-bum day we are having!


Love to everyone from Patrick and his roadies

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