Now Resting Peacefully James - 18 April 1996 to 10 Feb 2009

This is one of the hardest things I will ever have to do.

Our beautiful boy James Christopher, peacefully passed away on Tuesday morning at 12:35am.

It was very beautiful and peacefull and truly a blessing to have witnessed. On Monday night I was unable to sleep (nothing new here). James was resting well and sleeping. He had had an awake and alert day on Monday with times when he was gesturing to us different signals with his right hand. James' breathing was quite rattly and noisey. The Silver Chain nurse came out in the morning and set James up for the next 24 hours with his medication. By the late afternoon his chest and breathing was rather bad so I call Silver Chain and they came out again and gave James a new pump and more medication to help with his breathing. This then settled him down extremely well and he sleep until he passed away.

We as a family have been truely blessed by having James as ours. We feel extremely privleged to have been chosen by James to be his parents. He has taught us many things in life. How to be humble, create laughter, enjoy ourselves, ensure others are ok and many many more. Everyday he brought us wonderful blessings and joy. We will never forget you James, thank you for being with us for as long as you could. We just wish it could have been longer.

We would like to thank everyone that has helped our family on this rocky journey over the last 2 years and 3 weeks. We thank you for sticking by us and ensuring that we travelled well fed and supported us emotionally. We know that we could not have gotten this far without wonderful friends and family.

Thank you to the wonderful staff at PMH, you have truely been amazing and very helpful with advise, support and encouragement. Your jobs are most definately hard to do and you do them everyday with a smile and joy in your hearts, Thank you.

To the beautiful families that we have met from this horrible disease. We hope that your journey is safe and we will have you always in our hearts and minds. Travel safe and never give up hope.

Once again, thank you to everyone for being there for our family.

Please keep in touch.

Don't leave us now.

May our Beautiful Angel James

guide us and support us

Bringing us together as one.

James' Update

Well, this is the hard part. Over the last two weeks, James has slowly gone down hill. Firstly it started with his left side becoming weak. Then it progressed to the stage he could not walk any more. He was still eating and talking and making us laugh. I have managed to build up my muscles in my arms quite a bit now. It is like doing weight training every day. At this time his memory was shocking so he would forget he could not walk and try to get up, which resulted in a few falls. We then got to the stage were he could not get up, so this made it a little bit easier for us, that we did not have to worry every minute of the day and night if he was going to hurt himself. James has now got to the stage were he is incontinent. This was a bit hard at first for him but now he just accepts it, (I hope). We then went to not wanting to eat, but still drinking so we started supplimenting his drinks with Sustagen. This was working really good until Tuesday when he decided he didn't want that anymore either. So on Tuesday when the Silver Chain arrived we all decided it was time to put James on a pump to administer his medication for seizures and anti-nausea. By Wednesday he was having a lot of pain with regards to his hips and we then decided to place James on Morphine as well. This has resulted in James becoming more settled and restfull. He is no longer in any pain and seems to be more at peace. The Silver Chain nurses come everyday to ensure the pump is working and replace the medication for the next 24 hours. James is no longer talking. He does nod a little bit but is sleeping and resting most of the time now. We have been very lucky with the Silver Chain nurses, they have been wonderful in help and advise on what to do. Everyone has been very helpful and I have really appreciated the many visitors and phone calls I have received. They are keeping my spirits high. At the moment we are all taking it one day at a time and hoping that James stays as peaceful as possible with no pain. Keeps us in your thoughts and thank you for all your prayers and support, it really is appreciated.

"May the Angels above guide us with gentle hands."

Thomas Family Update!

Well, I can't believe it, time is certainly flying by. It has been awhile since I have updated the blog, so, sorry for the followers. We have had a pretty eventfull time over the last couple of weeks. I will start back in January and work forward.

James was laying in his bedroom, Liam and I came in to keep him company and we got out his camera and where looking at the photos he had taken back in April 2008 when he went to Broome. He got some beautiful photos of the sun setting, just amazing. We also had a bit of a fool around and took photos of us with him in bed. Lol.

Matthew, (James' best mate) came over two weeks ago and spent some time with James and Liam. I had a wonderful coffee and chat with Matthew's mum Sharon, it was lovely. James enjoyed see Matthew again before Matthew started High School. Hope all is going well, Matthew!

Also that weekend our beautiful friends the Lee Family and Garcia Family came over for dinner and games. It was a great night, with lots of laughs and the boys had fun drinking!

School started on Monday and the boys looked great on their first day back. Brent is now in the upper school white shirt and he looks very smart. Liam is cheeky as ever and very happy to be back with his mates at school. Liam has been asking to ride to school for the longest time and I have finally said yes. He went off to school on Tuesday very happy and excited to finally be riding to school.

Keeping us Laughing!! :)

Well as you can see James is still entertaining us! James has his down days but he always keeps us smiling. This was last Sunday morning and mum and dad were over for morning tea. We were just sitting chatting away when James decided to put his 'vomit' bowl on his head. Well we were all in stitches laughing. I had to take a photo. We have had yet another quite week. My Dad had his 79th Birthday last Wednesday and we went out to Chatters Restuarant to celebrate. Yes I forgot the camera or there would have been photos. James did so well that night but was tired for the next few days. We had a rough Saturday with James being out of it for most of the afternoon and night. Was a bit worried and did not get much sleep on Saturday night. As you can see Sunday was a lot better and James has continued along that way this week. James has been very unsteady on his feet of late so can't be left alone, as he forgets that he is unsteady so he has had a few falls over the past week. We now make sure someone is with him every minute of the day.

It was very sad on Friday as my Brother Phil and his boys Matthew and Jason left Perth for their respective homes, (Phil in Mt Isa, Matthew in Melbourne and Jason in Melbourne for a visit with his mum). It was fantastic having them stay over Christmas and New Year and they will be missed greatly.

On Monday night we had a lovely visitor come and have tea with us and James, Thank you Denise Bray, we had a great time. Although there was no chocolate spilt this time.

All is quiet on the Home Front

Well what a quiet start to 2009. We have had a very laid back start to this year. We have not been doing too much of anything over the past week.

We have been very lucky to have Phil down from Mt Isa, so have been doing lots of talking and catching up with him, Matthew, Jason and Lis. It has been wonderful to welcome Lis into our family, Congratulations to you both on your engagement. It was sad that Lis had to go home earlier than Phil, as she had to return to work. We will miss her, but am sure we will keep in touch. Even though we have been doing nothing it has been wonderful to have Phil and the boys here over the holidays.

James is travelling ok, we have had to increase his medication as the seizures returned. He also has weakness on his left side due to the pressure in his head. The Doctors tried James on steriods last week to see if it would help, but it did not do much at all this time. James' short term memory is really non-existent now. We have a good laugh about it with him, he is still very happy go lucky which is really helpful for us. We are living in the moment with James and enjoying the time we have.

We were very lucky to get some photos taken with Pixi in Midland. We picked them up just before Christmas and we have just got them on CD today. They are fantastic and we are very happy with them. Thank you Pixi Midland.

Stars Wars Lego.......Finished!

Well, James (and dad) have finished the Star Wars Lego Death Star II. James bought it when we were in America. It filled up one suitcase, and stumped the customs person at the airport to what was in the suitcase. Once we explained it was Lego, she laughed and said that Lego always gets her. Well it is Finished. James completed most of it, with dad giving a helping hand at the end. We are all very proud of how well James did. Now that it is together I still can't believe how big it really is. It stands 65cm high and 50 wide. We finally found a spot in James room to place it so that it doesn't get knocked or broken. (We hope!)

Our Christmas Day 2008

Well what a fantastic day. Liam woke not too early at 5:50am, had a quick look under the tree then came into bed with Shane and me and had a cuddle before we got James and Brent up to unwrap presents. Brent and Liam played santa all day passing out presents to everyone. They started with their own presents and made piles of presents for everyone in the family. They all seem to have sooo much, I think Santa spoilt them all! They had a wonderful time unwrapping and looking at the wonderful things they got. Lots of photos and video later, we sat down to a lovely breakfast. We then had a play of Guitar Hero World Tour, lots of drumming, guitar playing and singing was had by all. Lots of Fun! We then all got dressed and went over to my parents house to have Christmas lunch, yummy. We had Phil, Jason, Matthew and Phil's girlfriend Liz and Liz's parents, Heidi and Peter. Chris and Alana also came, so it made all the family together. It was the best part of the day. We had a wonderful lunch, lots of laughs and plenty of love for all. We came home for a nanna nap and then Sharon and Stu, Carlan and Reagan came over for leftover tea. Sharon bought most of it from her brunch. It was a lovely relaxing night. I think the kids have all recovered from the day. They all had a great time and received lots of lovely presents. It is amazing how quickly the day goes by, before you know it we will be looking at Christmas Eve 2009. Lets hope next year is better and brings us all a Miracle for 2009.