Hello all. Paul has asked that I post this for him, as he has been very busy as you will read. He also asked that I keep the Champ's real name a secret until Paul is able to update with his God given name and some unveiled pics.....
Tracy

Regarding the neuro forum, I simply haven't at the moment got time to post, but I will try to soon. Could you please assure everyone that we are all well. I am quite happy if you post this message, but please still keep Champ's name as the CHAMP want to be the first to let everyone know his real name .


The Champ's NEWS

Champ continues to be a champion; well you knew that He really is in pretty good health you know. The nasty seizures are about normal = one every 10-12 days.

IMPLANT

The vagal nerve implant is now at the full voltage. It has taken some years to get there, and we are there. The VNS proff, isn't that interested in increasing the frequency, but she might consider it if the champ got into a pickle with his seizures.

TRANSITION

The transition over to the local hospital is going very well. We saw the generalist surgeon for the second time a short while ago. He is more than happy overseeing the Champ at the hospital if Champ was in status and having problems. He referred us to a gastro doc at the local hospital. We saw the gastro doc a few weeks back. He asked for a full/full/ very full blood test and Champ has had that. We haven't heard anything, so we assume that Champ's blood is healthy and doing all the right things in the arteries and veins The gastro doc also wants to do a scope so that he knows Champ's situation thoroughly. The doc is quite friendly and gets about a 9 1/2 out of 10, so that isn't too bad at all. As a bonus he 'bulk bills', which means the visit doesn't cost us a cent!

FUNDING CHALLENGES

We have met three times now with folk from the department who have come up with an amount of funds for the yearly management of The Champ. About a month ago a senior person from the Department came out with Champ's Department social worker (new person) and presented the amount of money that is being offered.

We have stressed and stressed and stressed that we need to have Paraldehyde carers for Champ. To not have a trained carer has the potential of being a disaster. Imagine the outcry if we didn't have a trained carer and Champ suffocated because of gagging and couldn't be suctioned. The VNS proff wrote a great letter saying that Champ's situation without a trained carer could be life threatening.

Last week Champ's foster agency social worker and the department social worker came out to present the budget. The foster agency social worker has zero input with the budget; she was there for support.

Included in the budget plan is that we give up the foster agency support at the end of the year. This represents a $15,000 saving for the year. To be honest the foster agency really don't do that much now, just manage the Paraldehyde carer time tables and order in the nappies and ready wipes etc. All fairly simple stuff that we should be able to manage on our own. However giving up the foster agency would be a very big step as they have been involved since Champ was only two years old.

With the budget, we would get $5,000 less per year, which is to do with one of the funds stopping as Champ has turned 18. We are not happy with that at all, and do not accept that outcome. So we have written to the two department folk telling them that we know that extra funds can be found. We are not pulling the big guns out yet. We will see what their response is. Fortunately we do have a lot of support. The local member of parliament (in opposition) is 100% supportive of us. State elections are only a couple of months away. It couldn't be a better time to get an opposition member of parliament involved, if the need arose. The local paper editor, who produced the article about Champ's birthday, is also 100% supportive. Some years back we wrote to and meat the Departments senior person, who was 100% supportive of an issue at the time. We do have people we can contact for support.

We are quietly confident that there will be an increase in the funding.

PARALDEHYHE TRAINED CARERS CHALLENGES

The budget allows for a continuation of 20 hours a week for trained carers, BUT because they need to be reviewed each year, the only way that will work is if they are willing to join another agency. They could join the agency and just do work with Champ. This is a little bit complex. The two workers we have are absolutely wonderful with Champ. They have been assisting for over two years now. Bronwyn, who is only a year older than Champ is an absolute gem; she is a lovely Christian girl and gets 10/10 from us. The other carer Rhyll is a lovely Christian also, and very good with Champ in a different sort of way. We are waiting to find out what the other agency pays, and then we will approach Bronwyn and Rhyll to see if they are happy joining another agency so that they can continue to care for Champ. We hope and pray that they will.

GUARDIANSHIP

It seems, but is not yet 100% definite that we will be able to become Champ's guardians and still receive financial support from the government. We have to look into the situation a bit more, but guardianship is looking like it will be a possibility

ALICIA'S NEWS

Alicia continues to be very happy with her new boyfriend Tim. She always tells us how thoughtful he is Alicia is now working full time at the winery/restaurant/resort and is the 'Front of House' manager. "She loves the work. There is so much potential there for her. Her other news is that she is in a grand final for a karaoke competition. Last week Alison went along to the semi-final. Tim's parents went along as well and so did Tim's two sisters who are nurses. Alison said that Tim's family are very nice people

ALISON'S NEWS

Alison continues to be a great teacher. She is working very hard on her Master's Of Christian Education. She believes that she has two more units to go and then she will get her degree.

MY NEWS

I have now been offered the opportunity to increase my lulu work to 23 hours a week, being 21 hours in 'live help' and tickets, and 2 hours of just tickets. I am slowly starting to enjoy the work. If I get a question that I don't know the answer to and I am the only live help person online, then I can create a ticket and refer the problem to someone who knows the answer.

You will find these two chats amusing. One chatter asked if the pages would fall out of a book that he published, if he guillotined the book down the binding edge (glued edge). Well of course the pages would fall out! DUH!

Another chatter came online today and asked for advice as he had a dog that he desperately wanted to get rid of. Not exactly a lulu publishing question at all!

LUCY'S NEWS

Lucy is now almost completely blind because of the diabetes. However she is happy and loves going for a walk, even though sometimes the walk might just be outside for a smell and wander around the garden. However, she does still go for a long walk sometimes. She is happy and that is the main thing.

Thanks for that update! I'm glad to know that all is well with the Champ and his family!

Tracy, thanks for the update. I've been wondering (and praying that nothing bad was going on). So glad the Champ is staying in championship mode.