History

Thursday, December 24, 2009 7:38 AM CST

Well here I sit Christmas Eve reflecting on the year we had. On the most part Jordan's health has seemed to stabilise. Hence the lack of presence on this site this year.

No news is always good news and we live by that.

Jordan has still had his stomach episodes and this year saw him have a hospital stay and numerous tests to find out why.

To date there is no answer. This year also saw the first sign of varices. This means that his liver is starting to scar more and preventing blood into it. Over time this will lead us to transplant.

After the last endoscopy the other week Jordan's specialist feels there may be one last test he can look at to work out Jordan's episodes. My feelings are that this may happen early in the new year as just two nights ago we rushed him to hospital in the worst condition he has ever been in with these stomach complaints. It broke my heart and hopefully not my bank account as I sped to get him there, driving amidst tears. I vowed the next time I will try the ambulance.

4 = hours of pain he went through
3 = the hours of sleep we actually got albeit broken that evening
2 = the doses of morphine he was given via IV to help him
1 = doses of painstop and also Buscopan IV

Unfortunately though, although Jordan takes oral Buscopan the IV version sent him and us into a spin. His pulse went from 74 to 130 within seconds of receiving it and Jordan was delirious during the episode. His pulse stayed this high for about 5 minutes and alarmed the nurse so much she went back to her station and googled the effects. She came back and mentioned that if ever Jordan was to have this again we will need to be very careful as thankfully he stabilised otherwise they were going to need to intervene. It was horrible. It seems this form of the drug if not monitored carefully would have a very sad outcome.

So Christmas week started off interesting. The doctor who saw us wanted to keep him but had me promise that if this was to happen again we don't hesitate to take him back. Jordan was so close to tears when he thought he was to be staying in Hospital over Christmas.

It truly breaks me when he keeps saying "Why me all the time Mum?"

I shake my head - I have no explanations other than to cuddle him and tell him how special he really is.

So let's hope the posts on here remain few and far between.

From my family to yours have a wonderful Christmas 2009!

Monday, November 9, 2009 6:02 AM CST

Oh dear - all I can say is that if we haven't posted in a while then things aren't too bad.

More than anything this site is to keep you up to date with the happenings in our life and a way for me to express myself when the journey becomes a little difficult. For that I know and love that you stick with us and are happy to read my not so frequent posts at times.

So at present we are doing okay. We go back in a couple of weeks for another endoscopy to see how bad the situation inside is like. If it is similar to the last Endo then we don't need to do another for a year. If it is getting worse then another in 6 months or so.

The doctors have put Jord on some new medication which hopefully will slow down the varices they are looking for. It won't stop them but it will slow them down and that is great if they are doing their job.

So for now that is where we are at. Will keep you updated in the next week or so.

Take care...... love, thoughts & prayers..

Monday, July 27, 2009 9:42 AM CDT

No news is always good news and although annoyed at myself for not journalling more often am pleased so much to say that it is because things have been pretty good that I haven't anything exciting to say lol.

I do promise to write a better journal in the next week or so when it isn't so late at night for me and my head can wrap itself around what to write.

Just thought I should let you know that all is good and nothing bad to report from here.

Love, thoughts & prayers....

Monday, June 8, 2009 9:28 PM CDT

Well how slack was I last month? Still think we were shell shocked with everything but we are now back to being ourselves and living life to the fullest. I think both Jordan and I need to have a good cry to release the anxiousness we both have but we have been too scared to see the other cry I think lol....

Last week we had a scare - Jordan's bag was full of blood but thankfully it was just the stoma from where he scratched it rather than anything sinister - still it was our first "That phone call" so freaked us both out a little. Again sometime soon we will eventually crack, have a cry and all will be great again.

Thank you to everyone for your wonderful notes, love and support - it means the world to us. I am compiling this journal into a bound book which you can do through this website and it is part of Jordan's 10th Birthday present so he is helping me do it. It is great because all your comments will be included in the book.

Speaking of birthday our beautiful boys turned 10 a few weeks ago. I will find some time in the next few days to upload some pictures - they aren't great but they are piccies. The boys celebrated with a ten pin bowling party and had a ball. They each had four friends with them in their lane and they each had their own birthday cake (piccies to come). It was a lovely night as they went to the disco bowling where they turn the lights out and put the fluro glow in the dark lights on.

This weekend just gone we went to a lovely caravan park with friends and went camping. Albeit a little cold (being winter of course) it was a lovely weekend. They have a children's club which the boys loved, waterslides in their heated pool and you are a five minute walk from the beach - couldn't ask for more.

So for now that is about it.

Till next time - lotsa love.........

Sunday, April 26, 2009 5:07 AM CDT

It has taken me a week or two to be able to post this journal entry. A week or two to be able to finally wrap my head around the next part of our journey. The speed bump this time was a little more significant than the last and to date probably the hardest to take as it is starting to show us a detour that we had hoped not to take but knew was a possibility.

Jordan had an endoscopy (a small camera down his throat) a couple of weeks ago. They were looking for a condition which would show he had some food allergies causing him some discomfort when it came to eating due to a rash type thing in his throat called Eisonphilic Esophagitius (sp?). It has been suspected that he had this one other time too about three years ago. They were able to rule this out yet again but this time they found varices for the first time. The next paragraph I have taken from my favourite medical site - Mayo clinic - as it tells things in laymen's terms and probably describes this speed bump a little better....

Esophageal varices
Normally, blood from your intestine, spleen and pancreas enters your liver through a large blood vessel called the portal vein. But if scar tissue** blocks circulation through your liver, the blood backs up, leading to increased pressure within the portal vein (portal hypertension). This forces blood into smaller veins in your esophagus, stomach and occasionally your rectum. The excess blood causes these fragile, thin-walled veins to balloon outward and sometimes to rupture and bleed causing a life-threatening condition. Once varices develop, they continue to grow larger.

** Jordan's liver is becoming more scarred (part of what his condition can do) and this in turn is causing the portal hypertension **

So as you can see we now have to learn how to take this journey a little more carefully, the road being a little rougher. Rougher in the fact that where once we needed to keep an eye on a couple of things we now need to be a little more vigilant in the colours of output from the body. School too need to be more on their toes as well as anyone else who has Jordan in their care.

Thankfully the speed bump did not seem as high after our last liver clinic appointment. For now, we are at our best case scenario. The doctor's don't feel things will move quickly which for now gives us a little bit of a chance to take in the fresh air around us. We are just so thankful that Jordan's body obviously wanted us to discover these now hence the lay off his food and the decision to scope.

Where to from here? We continue along - three monthly clinic visits still and in six months we do another scope - if they seem to be the same we won't need to rescope till a year after that. If they appear worse they will either band them (where they put a small rubber band around them to tie them off and divert the blood elsewhere) as well as he may be put onto medication to help reduce them. He will also need to be rescoped three months after that.

I guess in a way it is like driving the journey with a time-bomb in the car - will it detonate? will it be a dud? will it create just a small explosion? or will it be a large one with an end we just can't comprehend? We just don't know - we do know that Transplant is now a little closer to the horizon than it once was. The drive toward that horizon - has just begun!

We are just so very very thankful that our journey is full of beautiful friends and family - people we could NEVER do this without.

Thank you everyone for your love, support & prayers - it means more than we could ever say.

All our love.......

Sunday, April 5, 2009 5:34 AM CDT

In the last almost 10 years since our AGS angel has been born and our journey started we have met some beautiful people. People that we would NEVER have met had it not been for AGS. Yes AGS can mean transplantation, itchiness, tiredness, low oxygen stats, heart issues, hospital stays - the list goes on but AGS can also mean beautiful friendships, kindred spirits, gorgeous people and family. AGS has made us a family - a family that we could not do without.

Crossing paths on our journey we have met some of our Aussie AGS family - Bayli in Melbourne, Noah in Bundaberg, Katey in Warrick, a couple at liver clinic in Brisbane who are not here on the board and just this week we were so privileged to meet Savanna from WA and her gorgeous family. Savanna got a wish from the Startlight Foundation. Her wish was to come to some of the animal parks here on our side of Australia and also to meet someone just like her. When they walked toward us at Underwater World I had tears in my eyes as I have done everytime I have met another part of our family. Not tears of sadness but tears of love and joy to know that they too understand what happens on our journey.

Jordan got to finally meet another AGS family member who is close in age to him. He and Savanna were given the opportunity to talk and find out from one another what living with AGS is like to each of them. Something Jordan hasn't been able to do cause the special family members he already has met have been little ones. Harrison (Jordan's twin) was able to also chat and find out from Savanna's sister (hope I get this spelling right) Gemilla what they like or more so dislike about having a sibling with AGS. Just the meeting of the children was so special for me because it has always been my dream for the boys to meet children their own age experiencing what they do. Which is why we hope to one day attend a Symposium.

Adrian and I had a great time too learning about Savanna's journey from Ralph and Helen as we have done with every other AGS parent we have met.

Savanna on her wish is also hoping to catch up with Noah and Bayli. It is a special time for them and we were just so pleased we were asked to meet with them.

Helen, Ralph, Savanna & Gemilla - thank you so much for allowing us to share and meet with you guys. It is a day we will always remember and we hope that in the next few years we AGS families here in Australia/NZ can have our own AGS get together.

To our friends and family - please keep us in your prayers in the next week or so as Jordan has a couple of hospital visits and tests. They are just looking to see why he has been off his food of late.

Love to you all............

P.S. Will add piccies here for everyone to see.

Friday, March 13, 2009 6:13 AM CDT

Wow I shouldn't be surprised should I? How long have we been living the Alagille's Dream?

Oh how so much can change in the space of a couple of weeks. About a week and a half ago Jordan became ill with a virus. He hadn't seemed himself for a few weeks - little things were happening but nothing too major but all that said and done I kept it in the back of my mind. Anyway the week he got the virus he was physically sick and having had an operation that prevents this happening alarmed me somewhat. It also alarmed Master 9 who is more Master 29 - he is too grown up for his age thanks to the dream. We both felt it was best to contact Liver Clinic and arrange to come in sooner.

We went in on Tuesday. Jordan had bloods drawn and the vitamin K boost. In the afternoon we found out that they want to do an endoscopy in the next few weeks to see if it is anything happening. We thankfully also have the allergist appointment the day after our next clinic appointment so hopefully by the end of April we hopefully will know what is happening.

It is so hard when there is no physical signs to show at Emergency but you know in your gut that something just isn't right. Thankfully we have a wonderful team supporting us at the hospital who believe us Mum's when we say that and stops us thinking we are neurotic.

So that at this stage is about it for us - in limbo once again - waiting, waiting, waiting as we do way too much. Perhaps god felt I wasn't patient enough or hadn't waited enough for things before giving me these two beautiful children? Ahhhh the master plan is so complex.

Till next time......... checking out for now - me!

Tuesday, February 3, 2009 7:13 AM CST

Please don't think I have been slack in updating but I have been holding out for Jordan's Liver Clinic appointment today. He got a pretty good bill of health. His doctor wants him to see an allergist to see why he is prone to sneezing, rashes & hayfever type symptoms. His LFT's (liver function tests) weren't too bad - quite normal for him - a couple are more elevated than normal but all the same he didn't seem alarmed.

We go back in April (school holidays) and at that visit will have a Vitamin K boost - this time through a canula as he refuses the needle.

We have had to change clinic to holidays now as Jordan is in Junior Band at school this year and their band practice day is a Tuesday - same of course as Liver Clinic. Lots happens on a Tuesday now lol.

Both boys are back at school and loving it. Jordan was a little sad cause his best mate has moved to another school so has been wandering amongst a number of other friends each lunch hour so far - nothing like being social. Harrison couldn't wait to get back to school to learn apparently. Both boys wish to be "A" grade students this year so time will tell. I am just so thrilled they are thinking that way.

They are in Grade 5 this year which is technically the starting level of Middle School so knuckle down time.

Anyway that is about all our news from here - bed is calling me so I thank you for reading our little piece of the wide world of internet and I bid you goodnight!

Thursday, January 1, 2009 5:13 AM CST

Happy New Year!

My boys wanted to do something special for you all to bring in the new year. Jordan had a slight hiccup on December 30/31 and spent the night in hospital with what appears to have been adhesions (scar tissue) inside his tummy causing a blockage. That said though, it didn't hold him down and here they are all three boys - just for you all the way from our house to yours... Welcome to 2009!!!

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Thursday, January 1, 2009 5:13 AM CST

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Thursday, December 4, 2008 6:15 AM CST

Well before you finish singing "We wish you a Merry Christmas" it is will be New Year. This year has been faster than lightning (and I know cause we have seen plenty of that lately!)

Just today I had a fruit bun and it reminded me of a hot cross bun and then I thought - wow it felt just like yesterday when I last had one of those. Crazy!

So in not too many sleeps the man in the red suit will once again grace us with his gifts and what wonderful gifts both he and the good lord above have given us this year. Apart from the odd cold, tummy issue or appendix we have been so fortunate this year on our journey of life with Alagille's. The speed bumps panned out to be merely ruts in the road which have allowed us some breathing space for a change.

In less than a week the boys will be finished Grade 4 and very much looking forward to bein in Grade 5. Jordan is hoping to pursue the school band next year in percussion and Harrison Rugby League. Jordan also announced this week that he is tired of gymnastics after only two months so next year is heading back to skipping. Which all in all isn't a bad thing cause he and Harrison were in the same class and Harry was tired of Jordan raining on his parade.

This weekend sees the start of our Christmas parties with our annual "Bate Christmas Bash" followed by work Christmas parties, school, care, and so and so. The silly season is definitely upon us.

So with that I will leave you guys and be sure to report to you our goings on sometime over this wonderful festive season 2008. We all have so much to be thankful for. Remember - everything happens for a reason and there will always, always, be someone that is struggling more than we are.

God bless................ "The Bate's"

Thursday, December 4, 2008 5:58 AM CST

Well before you finish singing "We wish you a Merry Christmas" it is will be New Year. This year has been faster than lightning (and I know cause we have seen plenty of that lately!)

Just today I had a fruit bun and it reminded me of a hot cross bun and then I thought - wow it felt just like yesterday when I last had one of those. Crazy!

So in not too many sleeps the man in the red suit will once again grace us with his gifts and what wonderful gifts both he and the good lord above have given us this year. Apart from the odd cold, tummy issue or appendix we have been so fortunate this year on our journey of life with Alagille's. The speed bumps panned out to be merely ruts in the road which have allowed us some breathing space for a change.

In less than a week the boys will be finished Grade 4 and very much looking forward to being in Grade 5. Jordan is hoping to pursue the school band next year in percussion and Harrison Rugby League. Jordan also announced this week that he is tired of gymnastics after only two months so next year is heading back to skipping. Which all in all isn't a bad thing cause he and Harrison were in the same class and Harry was tired of Jordan raining on his parade.

This weekend sees the start of our Christmas parties with our annual "Bate Christmas Bash" followed by work Christmas parties, school, care, and so and so. The silly season is definitely upon us.

So with that I will leave you guys and be sure to report to you our goings on sometime over this wonderful festive season 2008. We all have so much to be thankful for. Remember - everything happens for a reason and there will always, always, be someone that is struggling more than we are.

God bless................ "The Bate's"

Sunday, November 2, 2008 6:28 AM CST

Firstly I wanted to share this with all of you before the "Big Event" and thought this was the best way to do so - so nobody feels left out with our announcement - guess who is due within the next 2 months?

Santa you clown! What were YOU thinking?????

Anyways with that in mind we have some very busy times ahead. I don't think we have too many (if any) free weekends to breath between now and then.

The last month has seen us holidaying at our new "Fav" spot at Ballina. It is at this holiday park that we met a beautiful family who we will be keeping in touch with. Life brings so many special people into our lives - for which we are so grateful.

Last weekend we went camping with Adrian's cousin's family & their close friends. We had a lovely time and look forward to having more weekends like this. (I am hoping to post piccies of this & our Ballina holiday in the next week or so - so keep your eyes peeled lol).

This weekend saw the boys mudsliding on Scout Family Camp (we only did the day camp option), canoeing in the dam, playing in the mud and participating in the campfire. They had a wonderful day with some bruises and scrapes being their reminder of the time they had.

I will definately be having to keep this more updated over the next two months so I can keep you all abreast of our happenings as there is so much happening I will lose track myself lol.

I hope this journal finds you all well and gearing up for the festive season. We (touch wood) are all well. Jordan has a specialist appointment next week so will update when we know more.

So on that note - lots of love from our family to yours..... til next time!

Sunday, November 2, 2008 6:28 AM CST

Sunday, November 2, 2008 6:16 AM CST

Sunday, September 28, 2008 11:45 PM CDT

Well here we are on school holidays - Going to the movies, going to the club, going shopping, having friends sleepover, tidying the house, making my dining room table into a cubby house, preparing to visit friends, Adrian having his leave change unexpectedly, going to a show, re-preparing to visit with friends, seeing my cousin get married, visiting a friends newborn baby, Jordan getting chicken pox, cancelling visiting with friends, booking to go somewhere else just the four of us, chicken pox slowly looking a little better, now packing for four days at the beach..... life is never dull round here!

And that I think sums up the last week and a half - so till next time lol..... Just joking but seriously there isn't too much else to report.

Jordan's health hasn't been too bad - some unexplained nose bleeds (which I am recording), a fall on his back from the playground at school forcing us to head off to the hospital to check for no broken bones as he had very sore ribs, falling from his wheel shoes onto the bitumen road opening up his knee & now the mild case of chicken pox (or so the dr's believe) even though he has had the needle. He in himself hasn't been happy with things as he feels his illness keeps stopping him doing things. It can be so hard for him to understand that it isn't his doing - poor thing.

Life for the rest of us has been pretty good. We are all enjoying the break and when Adrian finally is on leave at the end of the week we are sure he will feel more relaxed too.

So until next time... that is about the news from here... take care, travel safe.............

Monday, September 1, 2008 5:42 AM CDT

Well to say it has been an interesting two weeks has been an understatement. As you know just on three months ago Jordan (who has already endured enough in his 9 years of life)had his appendix removed. To say he dealt with this experience better than me is so true.

Two weeks ago I was taken to our local Emergency room with suspected appendicitis. I was then transferred to a better equipped hospital where the lovely male surgeon felt I was just experiencing "Women's problems" kept me overnight then sent me home - still with pain of course.

I went to work on the Monday and then went to my GP who ordered ultrasounds which ruled out "women's problems" so I then had to have a CT scan which showed low grade appendicitus, and again was readmitted to our local hospital.

I have a naturally very low white blood cell count so they had to give me daily injections to boost my bodies white blood cells hoping my appendix wouldn't burst whilst doing so as they wanted them higher before operating.

Thankfully they didn't burst and upon laparoscopic (sp?) inspection found them in a ball attached to my abdomen wall.

Well to think Jordan makes it all look a breeze made me feel like a total weak person. The days following were so painful and hard on me and even now - a week later a trip to the shopping centre for groceries tires me out.

I have always loved and admired the strength Jordan and his hospital friends have but to have experienced it first hand makes me love and believe in these children even more. They are so brave and wonderful and I thank the lord for giving me the opportunity to raise one of these beautiful children - it has really taught me to appreciate life more than I would have.

Till next time............ Lots of love.....

Sunday, August 10, 2008 6:46 AM CDT

Okay as promised here is the latest update....

We attended Liver Clinic last Tuesday and I can officially say that it was the best ever visit. This was the very first one where I have had no issues with Jordan nor they with him. Dr Withers looked at me at the end of the appointment with his 'so when should we see you next look'. Before he spoke I said "Well see you in 6 months then hey?" he looked a little uneasy so I then said "I am more than happy if it is three monthly - I can handle four times a year". He looked much happier with that.

So the final decision was that we will see him in three months but a month before the next appointment we are having Jordan's vitamin levels checked to see if his liver is allowing his body to absorb them or not. Then at the next appointment if they need to top him up IV-wise with anything they can.

So that for us is basically it. Mum is sailing the seas near Singapore as I write this. She has been away for about four days now. Haven't heard from her so no news is good news and am sure she is having a ball.

As for the rest of us it is nothing out of the ordinary, eat, sleep, work, rest & play.

Two things though, that have tickled my fancy, over the last two weeks that I just could not 'not' share. Out of the mouths of babes..... Yesterday at my god daughters 5th party she was introducing people to her friend from care - her two cousins (my boys) were beside her and another friends daughter - she said "This is Jordan, this is Harrison and this is a 10 year old" lmao.

The other 'out of the mouths of babes chat' was with Jordan on the way to the hospital the other day. We were having a rather serious chat and he was talking (all nine years old of him) about the girls at his school not allowing him to choose which one to be his girlfriend - in his words "I'm sick of not being allowed to choose who I want mum 'they' have to always choose" lol... then he mentioned that one of the girls dropped him the other day (yep also a nine year old) and she said to him "Jordan I think you just need to get on with your life"... lol nine years old - he's lived so much of it already how could he ruin what is left lol... I had to turn my head to look out the car window so he couldn't see me laughing hysterically on the inside.

So everyone - that is about it. Keep your fingers crossed this will be an uneventful three months.

All our love, till next time and beyond..........

Sunday, August 10, 2008 6:46 AM CDT

Monday, July 28, 2008 6:38 AM CDT

I signed in here and updated this last night but it seems it didn't work - now to remember what I wrote lol.....

Yet again there isn't too much to report from our neck of the woods - which can only mean good things!

Jordan heads back to liver clinic next week and apart from little things he seems to be doing really well which is always a blessing and a chance to take a breather. These are the times I get to sit back and thank god for a truly wonderful life with a beautiful family.

Harrison and Adrian spent the weekend together. They flew to Mackay so Harry could check out the depot up there. Jordan and I had a nice quiet peaceful weekend without those two boofheads about. I wasn't all that well over the weekend so the tables were turned and I had little nurse Jordan tending to me and checking that I was okay. I didn't let him miss out on things we had said we would do so I managed to nap in between where I could.

We took in the movie "Mamma Mia" and Jordan is ready to head there again - if I had of let him we would have sat in the theatre and watched it again straightaway.

He loves Abba so knew the songs but now he is requesting that we get the movie when it is available lol. It will play as much as High School Musical does in his room.

This week sees us celebrating the first birthday of our gorgeous niece/cousin Emily. The boys love that little girl so much. They barely can walk past her without ruffling her hair and kissing her on the forehead - it is so beautiful to watch. I know I am biased but those two boys are going to grow up into wonderful sensitive men - which makes me so proud. They have their moments now - what boys don't? but honestly they have this side to them that is just so lovely to watch. Only problem for me is, they are growing too quickly!

Well that is about it from me for now. Am sure that in the next few weeks I will update you on the visit to Clinic.

Take care.... till next time.......

Sunday, June 29, 2008 9:29 PM CDT

Well how slack am I getting in updating this webpage? Or is it simply that life is getting too busy?

Either way it is no excuse, then again though there really isn't much to update you all on.

School has finished for another term here in Australia. The boys got their mid year report cards and both have shown improvements to last year which is always a blessing.

Jordan has come down with a horrible throat "thing" so he is coughing terribly of a night time and there isn't a lot we can do for it. Harrison sounds like he isn't far off getting it and I am hoping the tickle in my throat stays just as that!

We had a lovely night last week when Noah (also with AGS), Glenn & Michelle stayed over before they headed to the Alagille Symposium in the States. Noah is such a beautiful little man to wake up to. Everytime we see him he is getting more and more mobile and cuter by the minute! We are hoping they have a lovely time and bring us back lots of AGS information. We sent over a few aussie treats for the silent auction they have so hopefully they manage to get a little bit of money towards AGS Research.

Anyway that is about it from us - told you it wasn't going to be anything exciting. So until next time - be good and stay happy!

Sunday, June 29, 2008 9:29 PM CDT

Tuesday, May 27, 2008 6:20 AM CDT

Well here we are and a month has passed, the world has turned, the days have blended into nights and the boys have turned 9! Blinking just doesn't cut it these days cause it is too darn dangerous. I swear it was just a couple of years ago they were toddling about and being all cute - well okay they are still cute... at times..... but to think another year and I will be the mother of ten year old boys - unbelievable!

The last month has been quite a busy one. Firstly we had our trip to Gladstone to catch up with Noah and his family. We had a lovely weekend with them. They live as Shell puts it "In a Humpy in the Hills" and may I just say that "Humpy" has the best view in the world! You could easily lose yourself up there. You look out over the property past the train track, the highway and the hill in front to the Pacific Ocean. We left that weekend so relaxed and happy that we have already asked if we can come stay again lol.

The following weekend was Mother's day. I sent my mother a thankyou in a kleenex/mix fm radio/internet thankyou promotion. The week before mothers day I got a call to say that I was considered in their major prize draw and to listen on the Wednesday. Wednesday morning came and they rung mum and I so I could personally share my thankyou on the radio and our reward... a weekend in Sydney for Mother's Day attending a function on the Sunday with Bryan McFadden singing to us all.

So the Saturday morning was my "official" mother's day - the boys woke me nice and early with my beautiful gifts they had purchased from the stall at school and then we had breakfast at my sister's with mum, my aunty and my grandmother. Shortly after breakfast mum and I headed to the airport. We spent Saturday afternoon/evening shopping in Sydney, having dinner at a beautiful moroccan restaurant then catching the "Rocky Horror Show" at Star City Casino. The Sunday morning we got up early went and did more shopping, saw the Princess Dianna exhibition and then on to our private function with 200 other guests and Brian McFadden - it was such a lovely weekend.

The next weekend was quiet which is what we needed. Last Friday night wasn't quite so quiet as the boys, their friend Natasha and I headed to Big Brother's Friday Night Live recording. The boys squealed when they were meant to and tried their hardest to get onto the tv. They did manage a couple of tiny cameo's.

Then on Saturday of course was their birthday. Being an odd number year there was no party this year but next weekend they get to take a friend somewhere. So we are taking a friend of theirs each from school to Movieworld. Saturday though, the boys got to open their presents and play with them for a while then in the afternoon Harrison had a gymnastics carnival. After that we took them to dinner and then to Mt Coot-tha lookout to look at the lights of the city and have a hot chocolate. Sunday we had lunch at mum's house where of course there were more presents. They each received a siamese fighting fish from my sister. As Harrison loves holdens and his room is decorated as such he got a red one. Jordan of course is the Ford man (room the same) so his was blue. Harrison chose to call his new friend "V8" challenge Holden or "V8" for short. Jordan called his after the character Speed Racer so his is "Speed" Douglas Bate or "Speed" for short.

So that everyone is about our last month and the comings and goings.... stay tuned for further family updates in the coming weeks or so.

Lots of love........

P.S. Have added some new piccies for you to see.

Sunday, April 27, 2008 6:03 AM CDT

Well my apologies although it was just on a month ago, seemingly feels like a lifetime ago, Jordan is back on his feet and I have been remiss in updating his Journal.

So much happened that day but I will try to tell you the details (as promised) without boring you to tears. The morning started as any other - Jordan had some pains in the tummy but nothing unusual to normal. As he had been at work with me the day before cause he had had fever and nausea he was keen to get back to school. My mum dropped him to school as requested by him but within 15 minutes was in extreme pain and in the office. I knew at this point with the day before something was not right so I called for the ambulance to take him to hospital. I was 30 minutes from school and then from school to the hospital another 40 so I wanted him there soon as he could be.

I headed toward the hospital on the damp morning it was but on the way a car in front of me stopped suddenly and although I broke my car had no where to go but into her car. After exchanging details and from what it seemed little damage to my car bar a broken headlight I headed off again. About 10 minutes up the road the steam coming from my front end was enough to realise it was more serious. I abandoned the car and got a cab the rest of the way. I was relieved to have gotten to the hospital before the ambulance but wasn't expecting to wait another 10 minutes for them.

Well as always Jordan was the trooper that he is and the strongest person I know. From the medical staff he hid the severity of his pain. Being an almost 9 year old and having been under around 16 times for various operations and procedures Jordan knows what he does and doesn�t want. What he doesn�t want or like is being put under. There was no way he was letting any of us know how much pain he was really in cause he suspected it would lead to an operation. After a quiet word of love and support from me he opened up to let us know that the pain was not 5 out of 10 but 9 out of 10. A shot of morphine, an x-ray, an ultrasound and another shot of morphine later and we knew that by the night�s end Jordan would no longer have his appendix.

In the Surgery waiting room was where I first met the new Surgical Doctor who has taken over from our favourite Surgeon Dr Ong. It was here that we discovered he wanted to try keyhole surgery. His team thought open cut may have been the only option. So a little under 2 hours later we discovered all went well and three holes is all that remain. We were so thankful.

The next day appendix less, not as much pain, a fever (from the infection) and Jordan was on his way to getting out of hospital and hopefully free from one of the two normal pains he has experienced and lived with the last few years. Apart from the nasty fever lasting a couple of extra days � resulting in a few extra nights at the Hotel Herston (lol aka Royal Children�s Hospital) it really was text book appendicitis.

Since then Jordan hasn�t looked back. He had two weeks off school � one being a week off the other school holidays and is now back at school as though nothing had happened.

Both boys this last week participated in Anzac Day Celebrations. They sang in the school choir at the ceremony at School, Jordan participated in the drama presentation as well as laid the class wreath. They both then marched on Anzac Day at our local march. Jordan proudly wore my father�s Vietnam medals and Harrison proudly wore my grandmother�s WWII medals (check out the photo pages). To say we were gushing with pride when they marched past us was an understatement. Our boys remind us each and every day why we arise each morning and go to sleep each night � they are our world.

God bless��

P.S. Jordan finally got to lay claim to one of the pictures on Surf Ward. Frequent visitors to the hospital get to add their name to one of the pictures. Below is Jordan with his picture of which he is so proud of.

Sunday, April 27, 2008 6:03 AM CDT

Tuesday, April 1, 2008 6:36 AM CDT

Well what can I say April Fools Day and yet it has felt like it for five days now.

Who'd have thunk that the last five days has involved many phone calls, km's on the odometer, minutes waiting and waiting, a car accident, overheating so abandoning the car, a cab ride, an ambulance ride and that, by the way, was all within an hour.

I will in the next few days write more of the accounts of Friday but since Friday Jordan has been in a lot of pain, had his appendix removed, recovered, spent time in hospital and finally today returned home for more recovery.

To all of you that have been aware of our situation - thankyou so very much from the bottoms of our hearts for your love, thoughts and prayers. For those of you reading this for the first time - thankyou also for your support and love for coming to Jordan's journal and keeping up with his comings and goings. He just loves knowing people think of him.

So as I said - when I am more coherent with some more sleep I will update you of the great "Appendectomy" as well as Harrison and Jordan's first foray in the big wide world of Cub Scouts (plus share some piccies).

Lots and lots of love from our family to yours........

Sunday, March 16, 2008 8:10 AM CDT

Not a lot to share at the moment. The boys are doing well and enjoying school.

This week they get invested into Cub Scouts of which they are so excited about.

Will post more in the next few weeks and piccies from the investiture but for now I will leave you with this.

Superheros come in many shapes & forms......

Till next time - all our love...........

Sunday, February 17, 2008 4:39 AM CST

February came and we are now already half way through.

I have attached some pictures (as promised) from the boys christmas presents.

The boys are enjoying school for the most part. We have seen a huge change in Harrison. He is so enthusiastic and just loves his teacher. He has two teachers and one has been on leave since the start of the year so he will meet her in the next few weeks.

Jordan on the other hand is enthusiastic about his friends and the work just not so much about his authority figure. Hopefully things can be sorted out soon and he will be much happier with things.

Both boys have just started Cub Scouts on a Wednesday evening and love it. They have been two weeks now and within a month or so they will become invested. I promise to post photos when we get them.

They have both started back at their respective Friday afternoon sports and enjoy it.

So twice a week they have something extra curricular to school and I think that is plenty for kids of their age. They each are hoping to sing in the school choir this year so it certainly will round them off nicely.

We visited with Noah again last week at the hospital. It was so great catching up with him and his mum Michelle. Both the boys loved playing with him especially as he is now old enough to crawl over them and interact with them. Two weeks ago at clinic we also meet another Alagille girl who we had seen there before and thought had Alagille. She is 14 years old and lives not far from us. Jordan was so pleased to meet someone that can talk with him about how they feel having Alagille.

Jordan's liver specialists were very happy with him and we don't need to visit clinic again for another three months which is good. His blood results weren't through because there was a hold up in pathology but they were going to contact us if there had been a huge change in them. Considering we didn't get a call we are all assuming he is still cruising.

Well that is about it from this neck of the woods. Thanks so much for popping by to check out our comings and goings. Be sure to check the new piccies out and I will write again soon......

Lots of love.

Thursday, January 31, 2008 5:56 AM CST

Well here we are home from holidays and already January is gone!

The boys started back at school on Tuesday. Grade 4. Both very excited to be returning to school to see their friends. One of them wasn't too keen on the teacher they had so that was a little of a sore point as well as creating a slightly unbearable child at home from time to time the last few days and the other child is so excited he is requesting to do homework and being an angel - so unlike him. I won't name names but am sure that it wouldn't be all that hard to work out which is which.

I myself started back at work today and it was good. It was the boss' day off so I chose the perfect day to return and slide back into it.

Health wise we are all doing well. Jordan has a liver clinic appointment next Tuesday. Finally, for the third year, we think we have broken the Maroochydore curse. This was the first year that I have not had to fly back (without gaining a speeding ticket) to Brisbane to the Royal Children's Hospital with a child crying in pain due to stomach issues. It was so nice to finally have a full 2 weeks up there without that worry. It could be the antibiotics that his specialists have him on to try to stop these episodes but whatever it is we want to order a truckload of it.

The holiday was lovely and we all enjoyed the water, weather and simply doing not a lot. Mum and I wondered what our trick was the last few years - this holiday we didn't touch a book nor did we spend a lot of time out shopping or in front of the tv but the time went so quick. In years gone by we would be looking after much younger children, being able to read two or three books, shop heaps and have up to two swims a day plus have small cat naps - think whatever it was that we did we should have bottled, patented and sold it lol.

Anyway best be off. I do promise to post photos just as soon as my computer decides that it does in fact LIKE my camera and software and allow me to download the photos taken. The boys took heaps of piccies with their digital cameras so am sure there will be some interesting ones to share.

Lots of love to each of you and Happy Belated Australia Day! Bring on February.........

Wednesday, January 2, 2008 5:13 AM CST

Happy New Year 2008!!!!

May this find you enjoying the start of this year and may we all enjoy a year of peace, love, happiness & good health!

The boys had a wonderful christmas and were suitably happy with Santa's offerings. They each received a digital camera and have been happily snapping away. To watch the world from an 8 year old's perspective is truly amazing and inspirational. They also received way too much from all of us but are happily slowly re-discovering things they got on the day and working their way through each present.

We (being the boys, my mum & myself) are heading to the Sunshine Coast in a couple of weeks for a holiday. Adrian, my sister, brother-in-law and niece will pop in over the time we are away for a day or two's stay here and there. So we are praying and hoping the cyclonic weather of recent days will have well and truly passed.

Not too much happening here at the present which is always a lovely thing to say cause it means we are all well.

So on that note - will catch up with you all before we leave!

Lots of love...........

Thursday, December 13, 2007 5:31 AM CST

Just another two weeks and we will be putting bins of rubbish on the footpath full of wrapping paper, empty boxes and uneaten christmas lunch.... The year flies past so quickly doesn't it?

Last week saw Jordan hospitalised with a mystery stomach pain. Very different to his normal pain. They thought that perhaps he may even have had appendicitus. We only stayed overnight and the pain started subsiding so they decided to wait and see. Two days later he was in a lot of pain again so we spoke with the hospital and as no one had any idea of what it was his Gastro Doctor decided he should put him on an antibiotic that is designed to kill bad bacteria in the body. They think his body may just need a flush out.

Tuesday of this week we had our liver clinic follow up appointment. From all accounts his liver function tests and coag results look good. He has responded well to the Vitamin K injection from last time so it looks like these will be needed more in the future too. His doctor prescribed more of the antibiotic in the hope it keeps him well and out of hospital over the christmas period. They will review him again early February.

The rest of us are doing really well and looking forward to christmas and a break. The week between Christmas & New Year I will be off so the boys and I will have a great time together. We are yet to discover what Adrian is doing over that time. I then return to work for a week & a bit before the boys, my mum and I all head up the coast to the beach for 2 weeks. Bring on the holidays I say!

Sooooooooooooo if I don't get a chance to write again - have yourselves a safe, happy & healthy Christmas and an awesome start to 2008!

Lots of love.................

Sunday, November 25, 2007 6:08 AM CST

Well not a lot happening in this neck of the woods - which, mind you, is always nice.

We have a number of busy weekends from now until christmas. This weekend is the start of it all.

Friday night saw Jordan perform at the last skipping competition of the year. He has been aiming for overall skipping champion for his own age group all year. He wasn't aware it was an OPEN category so he was competing against girls that are much better than he is. So he was disappointed he missed out as he was the only boy all year that did what was requested and thought there was gender specific age trophies.

At the end of the ceremony they had the judge's encouragement award for the night (as they do each comp) but then they said there was a "Special" Trophy. It was for overall "Skipper of the year - 2007". Within minutes of hearing that Jordan became the inaugral "Skipper of the year". Below is a piccie of him proudly showing it to anyone that is willing to look!

So apart from the skipping we really have had a quiet time. The Christmas functions have just begun and our yearly Christmas Party here at home is on next weekend so it is busy, busy, busy and trying to catch even 20 minute naps so we can stay sane is a challenge.

So from us to you have a great week and we will catch up with you soon.

Lots of love............

Saturday, November 3, 2007 6:34 AM CDT

Well here we are in November. Just 4 short weeks till our Annual Bate Christmas Party and then just another 3 weeks and Christmas will be here.

Since our return from Perth we haven't slowed down. The first weekend home we visited Alma Park Zoo. The following weekend was our beautiful Emily's Christening. She looked gorgeous and was such a good baby. She smiled up at me from the font when she was having the water poured over her head. Last weekend saw us visiting the Performing Arts Complex to see David Strassman - of which we all enjoyed.

As most of you know also, a week ago Jordan farwelled a very dear friend of his. Samantha was an inspiration to us all and we adored her. For her short 4 years of life she brought so much joy to everyone around her. We are going to miss her terribly especially her beautiful smile as we entered Surf Ward (our second home). Jordan wrote Sam a beautiful goodbye letter and placed it on her (as he got it wrong) Coffee Table (least they are both made of wood and start with Cof lol). He was so brave and mature beyond his years. It breaks my heart - no child should have to experience the loss of a friend at such a young age nor should a child have to deal with what he does it too breaks my heart for my friends who no longer have their beautiful daughter by their side. The only consolation is that she has earnt her angel wings and looks down upon us as she runs and laughs through heaven. Looking over her friends and most importantly her family and her new baby sister who is just 8 weeks old. We love you Sammy and we will miss you......

So as we head into the next week having finally a nice quiet weekend at home (for a change) we have Jordan's cardiologist appointment on Thursday. Apart from that not much else is happening with us, which I might add is nice and won't last with christmas around the corner. I think every friday night and most weekends between now and then we have something booked. I promise I will keep you as best up to date as I can.

Enjoy the new piccies and we will see you all in the next few weeks....... lotsa love..............

Thursday, October 11, 2007 9:20 AM CDT

Well here we are home from Perth and all knowing that if we didn�t live in the beautiful state we live in then Perth could easily be called home. We all loved it there.

Here is our travel diary so grab yourself a cuppa, sit back and enjoy the large (I am not joking) post below:

Thursday we flew in and arrived at our hotel room at 2am. Might I say it didn�t take any of us long to go to sleep once our heads hit the pillows. We were thankful that although it WAS 2am in the morning for us thanks to the time differences it was 12pm at night so technically we managed 2 extra hours sleep without even trying. At 9am we were on a bus having a half day tour of Perth. We saw many of the highlights including Jutland Parade where the Millionaires of Perth live, Northbridge (home of streets & streets of restaurants), Kings Park (which overlooks the City) and Cottesloe Beach where a man a few years ago was bathing when he was taken by a Shark.

In the afternoon after our tour our driver left us (at our request) at the Perth Mint. We were all amazed to watch how they pour a real gold bar and also learn about what happened in the Mint all those years ago. That evening we had dinner at a lovely smorgasboard Swedish restaurant, walked it off through the Hay Street Mall � taking in London Court where my Grandmother walked & shopped back in the 40�s whilst serving for the Australian Armed Forces and then home for a well earnt rest.

Saturday we picked up our hire care and then meet up with our friends Peggy and Harry and headed down to Fremantle or �Freo� as the locals call it. Whilst Peggy and Harry took in a cuppa the Bate Family went on a tour of the submarine �Ovens� at the West Australian Maritime Museum. We all love getting away camping but to have over 60 men on that submarine for four weeks at a time � no thanks!

We headed then to Fremantle Jail. To think this Jail only shut down in the early 1990�s is just amazing � I must say none of us would like to live in Jail at the best of times but something as old as this would have been worse. Our guide Linda did however mention that prisoners that were there and have since moved to the new maximum security prison would prefer to be back in this prison � go figure! It was condemned in the early 1900�s yet it was still operational 90 years on! It was at this prison on our very tour that I ran into a lady I have known most of my life. She too is from Brisbane and was in Perth for a family funeral. She used to work as an officer with the Queensland Police Force taking prisoners to Boggo Road Jail. To be in the same spot on the exact same tour and only over there for a week was freaky!

The afternoon saw us peruse the Fremantle Markets before heading back to Peggy and Harry�s house in Bassendean for a lovely meal. The boys took in a swim in their pool and we all had a lovely time catching up.

Sunday morning yet another early one (these were starting to catch up on us all) had us at the Wellington Street Bus Rank waiting for a bus to take us on a �Wild Encounter�. Kez (our tour guide) drove us to Rockingham where we boarded a boat and had a two hour cruise of the bay. Here we saw dolphins playing around with our boat and swimming about the wash we were creating. From this boat we were back on the bus heading toward Sea Lions and Penguin Islands. We then boarded a glass bottom boat and saw the bay and it�s many residents. Sea Lions on their own little island looked like they were dead but simply were just sunbaking. Over on Penguin Island we disembarked and watch the Penguins being fed before ourselves having some lunch and then taking a walk of the island where we saw seagulls nesting, lizards and penguins. After this a ferry took us back to the mainland where Kez drove us in the bus back to Perth.

Sunday afternoon/evening we then headed into the Perth Hills to catch up with Drew and Jacqui. Drew used to work with Adrian and has now settled over there. We had a lovely barbeque meal before allowing the two who had to work in the morning a chance to have a sleep whilst we headed back to our own beds.

Monday was a welcome sleep in. After being on the go since we arrived we were pleased to have a lazyish day. Mid morning we headed North to Quinn Rocks to see our friends Peter & Jill. These guys are the proud parents of one little furry child � cat �Max� and two larger furry children � English Mastiffs �Eddie� (90kgs) & his little sister �Sophie� (70ish kgs � oops I forgot to pay attention). After checking out Quinn Rocks and having some lunch we headed back to Perth and on to Kings Park to take some pictures. Kings Park is such a wonderful avenue to overlook the entire city. After dinner at our hotel we headed back up to Kings Park to take in the City at night.

Tuesday we had breakfast, packed and said goodbye to our Hotel room. We then headed back out to Peter & Jill�s. Today we went to Hilary�s Boat Harbour. Here the boys played on some waterslides and a huge climbing mountain apparatus. They also jumped on some sommersault trampolines and played on some bumper cars with two older �BIG� boys whilst Jill and myself looked on. Dinner tonight was at the �Boat� Restaurant at Mindarie Marina just a few minutes from Peter & Jill�s. The boys had a ball here as it was �Kids� night where the restaurant bring in a group who facepaint, play computer games & do craft with the kids whilst the parents can mingle and watch their children playing. Children can come and go from the play area to the tables. Tonight we stayed with Peter & Jill.

Wednesday morning we had another sleep in only to find that overnight Peter had gotten quite sick with what appeared to be a flu like virus. He did however muster some strength and came with us to a Wagon Trail tour of the Swan Valley. The Swan Valley was established well before Margaret River but only really has taken off with tourists in the last 10 years. Our guide Ross was simply wonderful. We first visited an Aboriginal Art Gallery where we learnt about the different tools Aboriginal�s used. It was at this point that Peter became too unwell and unfortunately he and Jill headed home. We then moved onto a Winery which also specializes in Nougat � Jordan & Harrison were in heaven! Whilst we wine tasted they tucked into Nougat (one of their favourites). The Icecream shop was next. They make and produce their own onsite. Jordan isn�t all that mad keen on icecream unlike Harrison but he tried their Kiwifruit Sorbet and was wondering how we could get a tub back home here to Brisbane lol. From here we went through another vineyard before some more wine tasting. The trip finished around 5pm and then it was home to Peter & Jill�s to pack and head to the airport.

Although it wasn�t a long stay � timewise it wasn�t a rushed holiday (even if it sounds like it) and we thoroughly enjoyed it. Just as we drove away from Peter & Jill�s we received an sms to say our flight had been delayed. Instead of flying out at 12.05am we were to now fly out at 3.30am. Unfortunately our hire car had to be back at 10pm or we would have stayed longer at our friends. What was to be 3.30am ended up being 5am before we left and what should have been arriving here at 6.30am ended up being 11am. As we all had got up at 9am Wednesday morning (and apart from the boys [their dad included] grabbing a couple of hours whilst waiting we all crashed at 1pm today (Thursday) for 4 hours of much needed sleep. Quite a number of unfortunate weather & passenger issues held the flight before ours up and then subsequently ours with our own passenger issues.

Soooooooooooooooo that my friends was our much awaited and much enjoyed family holiday to Perth! Jordan did really well whilst we were away. We had chosen to save on luggage that he could be off his feeds for the week (which we have done before) but by the end of it we noticed drastically how much weight was dropping off him � bones were poking through all over the place so as I type this he is having his 2 litres worth of formula as he sleeps peacefully. Tomorrow they are back at school for one day before the weekend and they can�t wait to catch up with their friends and fill them in on their holiday.

Feel free to check out our piccies in the slideshow above and on the photo page.

Until next time�� lots of love��..Leisa!

Sunday, September 16, 2007 5:22 AM CDT

First and foremost - HAPPY BIRTHDAY NAN!!!! Even if she is in Thailand riding Elephants. We love you so much and hope you are enjoying your 61st Birthday. Here is a piccie of Nan from her 60th last year.

Well the countdown is on in our household. Just 2 and a half weeks till we go to Perth for our holiday. So to celebrate we have put together a slideshow of some of our favourite holiday snaps. Enjoy!!!

What a doctor week it has been for Jordan this week. Sunday night had him screaming in pain so at 10pm we were visiting the doctors. Yup a bad ear infection. Some antibiotics and drops later saw us heading home for a restless nights sleep. Monday the ear was rechecked to find that it was just shadowing the true infection in the OTHER ear. So drops in both ears was the verdict!

Tuesday was Hospital day. Jordan had his six monthly mickey button change then it was onto Liver Clinic. All of Jordan's bloods look really good and they have no real problems with him at all at present which (touch wood) is sooooooo good! The only issues were his vitamins. His body is still not processing them too well. They have increased his dosages of Vitamin E & D and Vitamin K is just not being absorbed at all it seems so another Vitamin K injection was needed. Poor Dr Lewindon was the worlds meanest person and Jordan showed him what for. He wouldn't look at him or talk to him. He did however, come around and was polite to him even if he couldn't look him in the eye. He has decided that as this can be given by either an injection straight into the leg muscle or by canula in his hand that next time the canula has it. He can handle them better than the injection. I hear you ask next time? Yep seems there may just be a lot of those....

Thankfully Wednesday and Thursday were Doctor free days (least for Jordan) Friday however was yet another ball game. Around 1pm Friday whilst playing happily at school Jordan copped a skipping rope handle blow to the mouth. I got a call from the school to come immediately as they told me in their words "We have never seen so much blood before". It was apparently coming out in globs of blood (yay the Vitamin K WAS working). By the time I got there it had stopped bleeding. The Doctor said not to do anything with it and that in the next few days it will seem worse but that is all part of the healing process. It is quite bruised and puffy but thankfully that is all it is.

So with a week like that you may ask - did ANYTHING go well for him? To his luck his favourite new little Alagille friend Noah was in town. They arrived at the hospital accommodation on Tuesday whilst we were at clinic so to help him get over the needle we paid them a little visit. Below is a video of him trying to get Noah to smile for him. As you can see he is one clucky little man!

Have a great week......... as our countdown continues.....
STOP PRESS!!!! We are less than 24 hours away and two lil men in this house are having troubles sleeping & staying on track - excitement is building. Talk with you all in a week (with piccies hopefully) STOP PRESS!!!!

Sunday, September 16, 2007 5:22 AM CDT

Friday, August 31, 2007 4:51 AM CDT

Two weeks have passed since the last post and here is the end of August.

So what has our family done in the last two weeks?

We had a lovely visit at Mum's house last week from Aunty Val, Karen, Conar, Ryan, Kim and baby Kira. It was so lovely to see them all. These guys all live in Wollongong so visits are few and far between due to the distance. Although they are our relatives anyone looking from the outside in would not believe that Conar, Ryan, Jordan and Harrison haven't ever really known each other (they were all way too small last time we saw them) and to watch the four boys together was as if they had seen them just yesterday. It was so lovely to see the beautiful connection the four boys had and how much they have in common.

We had lunch whilst at Mum's and we just loved meeting baby Kira (8-9 months old). She is such a happy little girl who was so content on sitting with the girls at the table and joining in. She was happy to check out her new baby cousin too as Aunty Kath and Emily joined us. Photos from our day can be found here on Jordan's photo page. If they lived closer I am sure we all would be enjoying more lovely days like last Friday.

This week we saw the Surgeons at the hospital about Jordan's stomach episodes he has. They pretty much told us what we have thought all along. These are being caused by the adhesions inside his stomach from the number of operations he has had in the past. There is obviously adhesions on the bowel and as it moves around inside our bodies the adhesions at times are causing Jordan's bowel's to kink forcing food to stop moving through his body and it them starts backing up. As the backed up food causes pressure - eventually that pressure is allowing the bowel to unkink and then it starts to move causing the pain to subside. If they were to open Jordan up and take out these adhesions it would solve the problem immediately but would only create new adhesions so there is no guarantees.

Watching Jordan go through these upsets us so much. The mild attacks are bearable but when they are really bad it is three or more hours of angst whilst all we can do is give him some panadol and a heat bag. The doctor believes that as he does have a high threshold for pain it is best whilst we are managing the pain to allow him to deal with them and do nothing. If it all gets way too much they would then consider the later option. So for now as I have mentioned we will do what we do best is sit and wait. Patience is our friend!

Today saw Jordan compete in the third and second last Start Skipping Competition for the year. Yet again our lil man was as the head coach said "Super Jordan" and he managed to earn himself gold in his team event and gold in his individual.

So at tonight's medal tally looking back over the last competitions he has 3 bronze, 1 silver & 5 gold now. He knows that he is well and truly in the running for the yearly trophy for boys in his age division and he can't wait. So he is now looking toward the next competion in November.

Above is a video of him doing his double unders - this is where the rope passes beneath the feet twice before the feet hit the ground. The key to this is to jump high and use fast hands for turning the rope. In the video below is Jordan doing speed skipping over the "Long" rope.

Enjoy!!!! Talk with you all soon..........

Wednesday, August 15, 2007 6:12 AM CDT

Well here we are yet again. Tomorrow is Aunty Kat's birthday. Happy Birthday Aunty Kat!

We have had a lovely couple of weeks. From sneaking cuddles with little Emily, visiting Movieworld (again), our Endocrinology appointment at the hospital to a meeting with the school to assess Jordan's needs.

Emily is coming along just beautifully. She is such a good little girl for her mummy and daddy. Evie (their dog) is always keeping an eye on the baby to check she is okay. It is so lovely to see their connection. The other day whilst nursing her she stuck her thumb in her mouth and started sucking it - it was so darn cute!

We also visited Movieworld again. Jordan or from this point forward to be known as Adrenalin Junkie or lets say AJ for short - rode the Batman Slingshot (the video from the other week) four times. The last time resulting in AJ, his dad and a very teary Harry (whom happened to be screaming before the ride took off) enjoy the time of their lives. Even the teary one got off and admitted he enjoyed it but all the same has now experienced it and won't be repeating the experience in a hurry. Having yearly passes is so good. We can just pop down for half a day or so - have some rides and come home.

Endocrinology went well. Jordan's bones seem to be improving. They are better than last scan and almost back to that of a normal child his age. It is so great to hear. I did however, get the doctor to check his bloods from the previous week (that we should be getting the results of early september) and it showed that his body is not absorbing some of his vitamins as good as they should (but we kinda knew that). She was a little concerned that Vitamin D which is the calcium one isn't absorbing too well and has increased his tablets now rather than wait till our next Liver Clinic. So that is a good thing as we don't wish his bones to fall backwards whilst waiting.

The school assessment went well too. It was just to go over basically if there is any assistance Jordan needs at school. We touched a little on watching him with PE and also at the moment he is having some issues with his peers in relation to curiosity (I knew this day would come at some point) but hopefully with the wonderful literature out there on AGS in children (directed at children) we should be able to handle this hurdle as well as others we have encountered along the way.

So for us that is about it. We are all getting excited about our trip to Perth in October and are scouring the internet for the best accommodation/car hire/activity prices. The boys are excited to be going on a plane. We have been preparing them to let them understand the flight is a little longer than others we have been on and hoping with our fingers crossed they will sleep on the way over - only adrenalin (AJ will be in fine form) may just stop them from doing exactly that. Are we there yet is already ringing in my ears!

So from us to you....... that is it for the moment. Will update again soon............ lots of love..... Us!

Tuesday, July 31, 2007 5:52 AM CDT

Well as you all may well be aware by now - yesterday at 12.52pm we welcomed a beautiful Niece/Cousin into this world. Emily Jane was born to Aunty Kat & Uncle Mat weighing 8pd 4ozs. She is simply gorgeous as you will all see from the photos attached on the photos page.

Both Mum, Bub & Dad are all doing well.

Today Jordan had liver clinic. I wasn't aware but it will be a couple of months before the vitamin test results are in. So we should know more in September. The total body composite showed us nothing we didn't know - he is lean and thin (go figure!!!). Next Monday we will know more about the bone density scan we had done today. Jordan is still having issues with the stomach cramps so today his liver doctor has decided that we will again call on the surgeon to rethink the situation and see what he may wish to do. There is a chance he will have a laporotomy sp???. As Jordan doesn't pass much wind at the end of one of these episodes there is a chance that they are partial bowel blockages that finally work their way through. So we will know more when we speak with the surgeon - whenever that may be?

So as we do all too well - as you all know - we just sit and wait and cuddle with our beautiful Emily in the meantime.

Check Jordan out - he is the cluckiest kid I know. He doesn't stop telling me (like I need to be told) how gorgeous she really is - but she IS mum lol. He spent about 3/4 hour today just settling her to allow his Aunty Kath a rest.

All our love..................

Monday, July 23, 2007 7:58 AM CDT

Well here we are the end of July already. Next week see's Jordan visiting the hospital for the first of two weeks of visits. Next Tuesday he has the blood tests to check his vitamin levels, his bone scan and then in the afternoon he has Liver clinic when we should learn the results of the vitamin blood tests as well as the TBK scan (total body composite) scan that he had done a few weeks ago. This scan looks at the muscles and organs in the body.

The following week we will see the Endocrinologist to find out the results from the bone scans. Will keep you posted on these.

Yesterday we had the wonderful privilege of meeting a little 6 week old man named "Noah". Noah and his mum and dad were down in Brisbane from near Bundaberg as Noah today was having a liver biopsy. Noah has four other brothers and sisters but he was the lucky little guy to be able to share his uniqueness with Jordan. Yes he too has Alagille Syndrome and let me just say that when we were holding him and talking to him he reminded us so much of Jordan as a baby. Jordan couldn't believe that he felt lighter to hold than a rock does lol. Noah and Jordan both weighed the exact same amount at birth - it was simply amazing. Here is a beautiful photo of Jordan and Noah sharing a special cuddle together at yesterday's visit.

So for now we are awaiting the impending birth of Aunty Kat's & Uncle Mat's baby. Twinges are happening and these two excited cousins can barely contain themselves. So perhaps by the time I let you know of Jordan's results next week there may be some other results to share.
*** STOP PRESS... STOP PRESS... Baby Emily Jane arrived today 8pd 4ozs at 12.52pm 30/7/07 - Mother, Baby and Daddy doing well - photos to follow in the next couple of days ***

Stay tuned............ same time....... same place..... till then - all our love............

Tuesday, June 26, 2007 6:10 AM CDT

Wow a month ago we were pirates - where does the time go?

We are currently on school holidays. What do you do with two eight year olds whilst you have to continue working? Well they get to do a lot of things. Monday saw them at Vacation Care at school, today was a hospital day (more shortly), Wednesday & Thursday they are with their Nan going to see "Fantastic Four" and participating in a program at the powerhouse in the city and Friday sees them back at Vacation Care. Next week they are learning my favourite "Belly Dancing", Tuesday we are going bikeriding with friends, Wednesday Vacation Care, Thursday something with Nan and Friday they will spend with their old Day Care Mum (both they and her just love spending the day together - she had them from 9 months of age till last year).

Sooooo a very fun and eventful holiday. As I mentioned earlier today was Hospital day. Jordan had bloods drawn this morning and then we had to use up some time before clinic this afternoon. I decided to take the kids ten pin bowling. They had a lovely time. They played two games and then went into the arcade games part and won some tickets and claimed their prizes. We then headed back to the hospital for clinic.

Jordan's biliruben is up slightly and you can see it looking at him. A few of his other liver levels were all over the place. His doctor is concerned that he is not processing his fat soluble vitamins. After a little discussion it was decided to increase his dosage and repeat bloods in 5 weeks time when we are next at the hospital for his bone density scan. So for now it is a wait and see game - something we do all too well. Jordan has been having a lot of pain in his legs and some nights can barely walk. He is subconsciously limping a lot too which is a little disturbing but I am trying to stay strong and hold out till we have the scan done and then see his specialist the week after that. His Doctor today mentioned of another type of scan that can be done to check his bone thickness and this may even be on the cards. He basically told his students today that he has to pretty much treat Jordan as he would a teenage girl who has anorexia - of which I fully understand when you are to look at him and his malnutrition.

So for us - we are waiting and seeing. Nothing we haven't done many times in the past. Apart from the lack of vitamin absorption and a few funny levels he is doing really well and that is something. In April he weighed 22.3 kgs and today he weighed 23.1 kgs so a gain is a gain!

On a brighter note.... Aunty Kat's baby shower went down well. She received some lovely gifts and now it is just less than 6 weeks before they receive their most precious gift of all. All our love, joy and prayers are with them on this last part of their journey to become Parents.

That in a long nutshell is our last month or so. Have yourselves a wonderful day and I will report again within the next month or so.

Lots of love...............

*** Please say a prayer for another Alagille Family that we have been following for a while now - their beautiful Natasha earnt her angel wings two days ago and is now flying free - we love you guys ***

And here for your viewing pleasure is our "Biggest" Daredevil ever!!! Adrian lined up with Jordan for this but then chickened out at the last minute. An 8 year old beating a 44 year old!

Then go to the pictures page for some new piccies of the boys with their baby girl lol.....

Tuesday, June 26, 2007 5:31 AM CDT

Sunday, May 27, 2007 6:50 AM CDT

Ahoy me maties!!!!!

The ship set sail at 1pm yesterday with a rather full crew. After the Capt'ns, mates & lassies filled their tummies with some hearty food & drink they completed a number of team bonding exercises & games.

After all their hard work the crew then began to get a little peckish again so out came the sweet stuff & cake. The Capt'ns sure like slicing into that poor pirate!

A little light music then rang across the decks whilst the crew partied on a bit.... not long after the ship struck land and the Capt'ns found a Pirate Treasure Cove full of plenty of goodies!

After they discovered their hidden treasures it was time for the Mates & Lassies to find their very own Treasure - so with the help of a Treasure Map they found their very own Treasure chest full of Gold Coins & Goodies!!!!!

Arrrrrghhhhhh may we thank each & everyone of ye for helping to make Capt'n J & Capt'n H's 8th Birthday an awesome one!

Oh and don't forget to check the piccies out in the picture section.

Wednesday, May 16, 2007 11:00 PM CDT

Well here we are post fete and what a fete it was! The boys had a wonderful time as did all the kids that were there. Thankfully (even though we ARE in a severe drought) the rain scheduled for the day did not eventuate. It's sister "wind" decided she was going to blow and blow hard she did! Still despite that the kids had a great day.

Today sees Harrison camping at school for the day. He was so excited this morning that I thought he was going to float to school on the high he was on. They are pitching a tent on the lower oval and having a picnic lunch provided for them.

He is also very excited as this weekend is the Truck & Machinery show at the exhibition showgrounds - only I am unsure as to who is more excited - him or his dad.

Jordan has been well apart from the horrendous bruises. I asked his liver team if we could run some bloods just to check him out. Turns out they are great - best they have been in years so as for these terrible lumps on his limbs with bruising we are unsure but all in all wonderful news for him. He wasn't too sure about his heart halter as he was frightened he wouldn't be able to sleep but in true Jordan style his head hit that pillow and he slept soundly till morning.

Jordan decided to tackle a BIG number for his "Be a musician" day at school on Tuesday - he sung "Memory" from the hit musical Cats to his fellow classmates. Tina whom I work with and I can see ourselves in years to come sitting in the fingers of the Lyric Theatre clapping and yelling "Bravo, Bravo!"

So what has the remainder of May got in store? Next week the boys have under 8's day on Wednesday 23rd - this is where they do various activities at school to celebrate under 8's week.

Thursday 24th sees them celebrating their 8th birthday. Where does the years go? I am sure I have asked that question before.

Saturday 26th has our house being turned into a deserted island complete with a Pirate Ship, Two Captn's and their crew, Pirate Treasure and a Pirate Cake. The boys have each chosen three games to play and to end the party we have treasure maps to find the hidden party loot!

So on that note Ahooooyyyyy!! Me maties.... Will catch ye soon with lotsa piccies of the day!

Below you will find a wonderful presentation created by a truly beautiful lady named Kristy to show the world just how truly lucky we are to have these gorgeous children. Kristy is a mum to Jiri another little AGS Wonder. Thank you so much for all your work on this Kristy.... it is an inspiration to you.... enjoy!!!

Photo and video editing at www.OneTrueMedia.com

Wednesday, May 16, 2007 10:27 PM CDT

Well here we are post fete and what a fete it was! The boys had a wonderful time as did all the kids that were there. Thankfully (even though we ARE in a severe drought) the rain scheduled for the day did not eventuate. It's sister wind decided she was going to blow and blow hard she did! Still despite the kids had a great day.

Today sees Harrison camping at school for the day. He was so excited this morning that I thought he was going to float to school on the high he was on. They are pitching a tent on the lower oval and having a picnic lunch provided for them.

He is also very excited as this weekend is the Truck & Machinery show at the exhibition showgrounds - only I am unsure as to who is more excited - him or his dad.

Jordan has been well apart from the horrendous bruises. I asked his liver team if we could run some bloods just to check him out. Turns out they are great - best they have been in years so as for these terrible lumps on his limbs with bruising we are unsure but all in all wonderful news for him. He wasn't too sure about his heart halter as he was frightened he wouldn't be able to sleep but in true Jordan style his head hit that pillow and he slept soundly till morning.

Jordan decided to tackle a BIG number for his "Be a musician" day at school on Tuesday - he sung "Memory" from the hit musical Cats to his fellow classmates. Tina whom I work with and I can see ourselves in years to come sitting in the fingers of the Lyric Theatre clapping and yelling "Bravo, Bravo!"

So what has the remainder of May got in store? Next week the boys have under 8's day on Wednesday 23rd - this is where they do various activities at school to celebrate under 8's week.

Thursday 24th sees them celebrating their 8th birthday. Where does the years go? I am sure I have asked that question before.

Saturday 26th has our house being turned into a deserted island complete with a Pirate Ship, Two Captn's and their crew, Pirate Treasure and a Pirate Cake. The boys have each chosen three games to play and to end the party we have treasure maps to find the hidden party loot!

So on that note Ahooooyyyyy!! Me maties.... Will catch ye soon with lotsa piccies of the day!

Wednesday, May 2, 2007 7:57 AM CDT

Well seeing as May is here thought we ought to update.

Not too much has been happening in our neck of the woods which is GREAT news!!! but all that is about to change....

May is a busy month for this family. The beginning of May Jordan is having a heart halter on to see what his heart does during a 24 hour period as he has been having some heart palpitations. He also has been having a little nerve issue which hopefully will be sorted soon enough too.

The day before Mother's day the boys have their school fete. It is all stations go. I am an official "Showbag Convenor" - it was the perfect job for me - order the boxes, open them, sell them - how hard could that be?

Mother's day sees us at my mum's house celebrating with my sister (soon to be a mum for the very first time), my grandma, my aunty and of course my mum. It should be a lovely day.

Harrison and Adrian will be at Harrison's refresher day of the course he did. He is a NEW child - of course we still have our days with him but nothing like we used to which is such a blessing and we know we did the right thing. "Friends for Life" run by Pathways comes highly recommended.

The following weekend we have a break before the BIG week in May that we seem to count down sleeps to. The boys will be turning 8 on 24th May and this year we are having a Paarrrtyyy! (said in my best pirate drawl) - that's right Ships ahoy and Shiver me timbers there will be pirates aplenty looking for treasure right in our backyard!

So should I not get the chance to update between now and after their party I promise to be back with plenty to talk about and plenty to show!

Have a great month everybody.... all our love....

Wednesday, May 2, 2007 7:57 AM CDT

Wednesday, April 4, 2007 7:38 AM CDT

Well here we are but days away from Easter! So firstly to each of you "Happy Easter"

As I heard someone today say - we are officially a quarter of the year over - only yesterday was Christmas - I'm sure it was! Does the Easter Bunny not understand that Santa's footsteps are still fresh in the snow?

With all that said tomorrow is the start of school holidays then just after the holidays will be Adrian's birthday, the boy's school fete, Mother's Day and then the boys will be celebrating their 8th birthday.

The boys are thoroughly enjoying their year at school and seem more and more grown up each day. This week saw them do cross country at school. Over this last term the boys have become so much more confident with their reading, writing, maths & spelling which is so good to see. They have enjoyed their class presentations from telling jokes, to speaking about their favourite animals, making craft to talk about and also talking about a friend and why they like them.

Ironically Jordan chose his little 4 year old liver friend Sam whom he just adores seeing. Sam has spent a great deal of her time in hospital since she has been born and has accomplished some amazing battles in her short 4 years. The day Jordan spoke about her to his class was the same day we heard that Sam is not doing so well so has gone home to spend time with her family in Mackay. So the very next day Jordan visited Sam in hospital and played with her as he has done on so many occasions. He gave her a huge hug. He loves her so much. Please say a prayer for Sam and her family.

Speaking of Friends Harrison has just finished his course titled "Friends for Life" and I must say we have ALL seen a wonderful change come over Harrison. He really has benefited from this self confidence boosting course and has allowed him the use of some really wonderful tools in his quest to enjoy life and everything about it.

Well that is about all from this little family for now. Please have yourselves a wonderfully safe easter and school holidays. Whatever you may be doing - Enjoy!

Happy Easter everybunny!

Friday, March 16, 2007 6:09 AM CDT

JORDAN GOES FOR GOLD!!!!!

That's right today Jordan participated in the Inaugral Start Skipping Competition with his normal friday afternoon group.

Jordan was in an 8's and unders mixed team. They had to race the clock to do speed skipping, double unders, double dutch, long rope & novelty event.

Jordan has really improved since last year and has mastered his speed skipping and his double unders. Double unders are where the rope passes twice beneath you in one jump. Anyway at the end of the night Jordan's team came first and won a gold medal.

Then it was the announcements of the Individual awards. 1st place in boys 8 years and under (drum roll please) Jordan! Wooohhhoooooo!!!!!

So you guessed it - here is Jordan with not one but TWO gold medals!

Congratulations sweetheart - we are as proud of you as you are of yourself (he couldn't stop saying how proud of himself he was and hasn't shut up yet and that was over 2 hours ago - lol).

He will sleep well tonight!

Wednesday, March 7, 2007 5:34 AM CST

Well here we are the 7/3/07. Today our newest addition made his mark on the world! Our niece Renee gave birth to Seth Allan Joyce born on his dad's birthday. Exactly 30 years ago on 7/3/77 Scott Allan Joyce was born. Of course we just had to go and meet him. He is simply adorable and on the photo page you can also see him (he looks almost like a mini-me of his father!)

You will notice a beautiful photo of our boys, then photos of Seth followed by a photo of our great niece Krystiana. So we now have a pigeon great pair - Seth & Krystiana!

A few months time and we will be celebrating again with my sister and her bub. Today they had their mid way scan and all was great and on schedule for July.

So are we all clucky - you bet!!!! Will we welcome a new bub in our house - no way!!!! We love them all to pieces but are all more than happy to kiss, hug and hand back.

Anyway healthwise we are all going marvellously still - which is a blessing for this family.

So we will sign off here and talk again real soon.... all our love, hugs and kisses!

Thursday, February 22, 2007 5:29 AM CST

Well here we are the first month of school all but over and christmas seems like a distant memory.

We are all doing well. Jordan visited with his Endocrinologist this week. They are happy with his bone progress and he will have full body bone scan in July to check how well he is progressing. Health wise he is doing the best he has for ever which is such a breath of fresh air!

Harrison has started his course and enjoying it immensely. He is learning a few new strategies to help him communicate and use when he is feeling things are too tough. He is coming along in leaps and bounds and we are so pleased with the results so far.

To be honest there really is nothing much more to report. Jordan is bursting at the seams as we go and see Cats on Saturday and he can't wait.

Well guys - from our family to yours - have a good one and catch you soon!

Thursday, February 22, 2007 5:11 AM CST

Monday, January 29, 2007 4:27 AM CST

Well here we are - all tired and exhausted from our first day back at school. The boys just love their new classes. Harrison has Ms Hyslop and Jordan has primarily Ms Batten. On a Friday he will have a different teacher of whom I am unsure at this stage.

We had a wonderful holiday apart from an early hiccup. Jordan became very ill on our second day there and ended up having one of his stomach episodes. 11.30pm that night as I was just winding down to go to bed I ended up in the car and driving back from Maroochydore to Brisbane. The car was headed for the Royal Children's Hospital. On the 1 1/2 hour drive home I hit Caloundra which is about 1/2 hour from where we were staying when Jordan was snoring in the back of the car. As these episodes tend to go I knew that it had more than likely passed but to be safe I kept heading toward Brisbane. I arrived at our house and put him to bed. I felt that if we were closer to the hospital if it had continued then it was better for him.

Thankfully the next day we resumed our holidays. We had a wonderful holiday from that point on we swam, visited underwater world, swam, went shopping, swam, meet some new friends, swam, watched dvd's, swam, relaxed, swam, went fishing, swam, had a picnic, swam, had their ears pierced oh and in case I forgot we swam. You can check out some of our piccies on the photo board.

Well that is about it from us here. The first week of the school year has begun. Time flies hey? The boys are in Grade 3! I remember when they were just born! Speaking of born we were all so pleased to find out this week that my sister is expecting. The boys are beside themselves that in July they will become cousins and that we will become an Aunty & Uncle to the new baby. Congratulations Kathy & Mat!

Take care everyone............

Sunday, January 14, 2007 7:10 AM CST

Well here I am typing this Journal when I should be finishing my packing.

Maroochydore or bust will be the sign on our car tomorrow!

Adrian will join us every now and again over the next two weeks. He is the official puppysitter. Jack and Candi will be enjoying two weeks together.

Anyway Jordan's biliruben level was higher than normal but not overly high so although he seems more jaundice to us liverwise it isn't too bad. His clotting agents in his blood also aren't as they should be hence the amount of bruises he has been experiencing. So a little tweaking of his tablets and he should be fine. We are also giving him a little more formula too as his weight has dropped over the last couple of months.

Well that is all the news from here. Bring on the sun, sand and surf I say!

See you in two weeks!

Sunday, January 14, 2007 7:10 AM CST

Friday, January 5, 2007 8:04 AM CST

This picture definately shows how Jordan and Harrison welcomed in the new year. Can I politely say that had they blown those lovely little whistles just one more time.........

Seriously - it was a quiet but lovely night for the boys and I seeing in 2007 whilst Dad stayed out at a friends and partied into the wee hours.

2007 has seen us enjoy the movie "Happy Feet". We all will not look at seals the same ever again though - once upon a time they were sooooooooooo darn cute.... least the ones at Seaworld still are when we see them.

The boys have spent their summer vacation jumping on their trampoline, riding their electric scooters, going to the movies seeing "Happy Feet", "Flushed Away" and "Night at the Musuem", jumping on the trampoline in the rain, riding their scooters, going to the shopping centre to watch the free entertainment, jumping in the rain, riding their scooters, oh did I mention jumping in the rain and riding their scooters?

At the local shopping centre the other day Jordan participated in a dance competition thing and out of the 30 kids participating Jordan was the winner of the only prize. A book on the entertainers that were performing. Apparently he did an awesome air guitar (according to Nan).

The boys have asked their Aunty Kath and Uncle Mat if they can stay with them one weekend so they are heading there for a day and night and very much looking forward to it.

In a week or so we head up to Maroochydore for 2 weeks in a unit at the beach with Nan. We are ALL looking forward to it. Fishing, swimming, relaxing and plain enjoying our holidays are all high on our agenda for the two weeks.

Just before we go Jordan goes to liver clinic. He has seemed quite jaundiced of late so will fill you in before our holidays (fingers crossed I get the chance.)

Take care and catch you all within the week.

Saturday, December 30, 2006 3:02 AM CST

From our family to yours.......

We hope you all have a wonderful 2007!

P.S. Don't forget to check out our New Piccies - Thank you Christmas!

Friday, January 5, 2007 7:42 AM CST

This picture definately shows how Jordan and Harrison welcomed in the new year. Can I politely say that had they blown those lovely little whistles just one more time.........

Seriously - it was a quiet but lovely night for the boys and I seeing in 2007 whilst Dad stayed out at a friends and partied into the wee hours.

2007 has seen us enjoy the movie "Happy Feet". We all will not look at seals the same ever again though - once upon a time they were sooooooooooo darn cute.... least the ones at Seaworld still are when we see them.

The boys have spent their summer vacation jumping on their trampoline, riding their electric scooters, going to the movies seeing "Happy Feet", "Flushed Away" and "Night at the Musuem", jumping on the trampoline in the rain, riding their scooters, going to the shopping centre to watch the free entertainment, jumping in the rain, riding their scooters, oh did I mention jumping in the rain and riding their scooters?

At the local shopping centre the other day Jordan participated in a dance competition thing and out of the 30 kids participating Jordan was the winner of the only prize. A book on the entertainers that were performing. Apparently he did an awesome air guitar (according to Nan).

The boys have asked their Aunty Kath and Uncle Mat if they can stay with them one weekend so they are heading there for a day and night and very much looking forward to it.

In a week or so we head up to Maroochydore for 2 weeks in a unit at the beach with Nan. We are ALL looking forward to it. Fishing, swimming, relaxing and plan enjoying our holidays are all high on our agenda for the two weeks.

Just before we go Jordan goes to liver clinic. He has seemed quite jaundiced of late so will fill you in before our holidays (fingers crossed I get the chance.)

Take care and catch you all within the week.

Saturday, December 30, 2006 3:02 AM CST

From our family to yours.......

We hope you all have a wonderful 2007!

P.S. Don't forget to check out our New Piccies - Thank you Christmas!

Monday, December 4, 2006 6:22 AM CST

December 2006 - I am sure it wasn't long before yesterday that we were wishing each other a Happy New Year 2006! Time sure does fly......

Saturday just gone saw us celebrate Christmas with our wonderful friends. We had our annual Christmas party here. Santa arrived with two little helpers this year (they still believe but they know that the man with the beard is too busy this time of the year so he needed a friend to help him out - so they helped him too). The boys are just wonderful with the little kids and also with Santa.

Well healthwise we have all been pretty good. Jordan is doing well and sees the liver team again early January. My specialist is happy with me so it will be another three months till that visit - I see the blood specialist next week but I know the results and they look good. Adrian is very well as is Harrison - which is a blessing for this family. God sure has been kind to us these last 6 months - which has been a lovely change on the last few years.

Both boys seem to be getting tired as the year end is nearing. With tiredness comes lack of patience and with lack of patience comes loss of control of emotions. Let's just say my number is on speed dial with school at the present. Thankfully I am aware we are not the only family who falls into that category which makes me feel more sane than I was lol.

We still have a few christmas parties coming up and then we will be spending Christmas morning with my family followed by Boxing Day with Adrian's.

Just in case I do not get a chance to write again before Christmas may our family wish yours a very Merry Christmas and a Safe and Happy New Year.

Lots of love................

Thursday, November 2, 2006 6:03 AM CST

Dang here I go again - how silly of me I accidentally hit the wrong button and lost all of my journal. Here's me praying I do it right this time!

Basically (cause I am too tired to try to remember it all word for word now) I covered that Jordan's health has been well. His LFT's are still high but his doctor is confident that he will be okay to have another visit in two months time. Two months is a good indicator that he is doing okay for now.

Harrison has been really well and although the occasional sign of the devil has surface he has been just wonderful in helping us around the house this last month. He scored an old motorcycle helmet that his dad use to have and now insists on wearing it almost 24/7.

We are all enjoying our beautiful baby girl. It is so lovely to have an active little puppy in our lives again - apart from the usual toilet training stuff that just isn't and never will be pleasant with a puppy the rest is simply wonderful.

You will also see attached some piccies from Halloween the other night. I must say I have never been a real Halloween person but when our friend Julia asked if the boys could go with her and her kids to trick or treat in our street we agreed. The looks on their faces as they skipped from house to house and then with their bags at the end was so well worth it.

Enjoy the piccies everyone and until next time.... lots of love and kisses to you all........... Us!

Tuesday, October 10, 2006 6:57 AM CDT

Today sees the Bate family with a gorgeous, fluffy, cute, adorable sometimes boisterous baby girl! Yep Candice has entered our family. She truly is lovely and such a joy for us all. For having not meet her until we purchased her we could not have picked the more most perfect puppy for our family and the same goes for mum/nan with her puppy - Jack is just as adorable as Candi but a lot more placid lol. He is the perfect puppy for mum.

I have attached up to date piccies of Candi to the photo page with more to come in the following weeks I am sure.

The boys just couldn't wait to take her to school today to show all their friends and teachers. We were lucky to get out of the office alive and with our baby - the amount of staff and teachers that were trying to see if she fitted in their handbags was amazing!

Today also saw Jordan quite badly behaved (two calls from school by morning tea helped me understand how bad) which as tradition seems to go with our little man something is not right with him medically. Thankfully we had a liver clinic appointment this afternoon.

Last week's Barium Test shows that his stomach is draining fine but if he continues to have the abdominal pain that he has experienced in the past few months or tries to be sick then we have to take him straight to emergency as it could be the start of something nasty. Also today it was noted that his Gamma GT levels were high and his biliruben has crept up a little. So although he looks well and appears well he doesn't really seem well (I know this sounds silly but it truly is the best description). This being the case we have to front liver clinic in two weeks to keep an eye on his levels or earlier if something nasty begins to happen. Judging by the behaviour I witnessed this afternoon I am hoping that nothing IS happening inside there.

So that is about it from the Bate family of 5. Will keep you all posted in the coming weeks and am sure there will be plenty of puppy stories to accompany the updates!

Have a great week...............

Monday, October 2, 2006 1:04 AM CDT

Well here we are the month of October.

Nan's birthday was wonderful. We had put together a compilation DVD of her 60 years. We put photos to music and went through her life from birth to now including her wedding, fashions over the years, family and friends. There wasn't a dry eye in the house as the DVD played on the big screen for all the guests to see. As everyone at the party featured somewhere in the DVD every guest got to take a copy home. Nan has played it that many times that it seems she will need a new copy before long due to wear marks!

The end of September and this week sees Jordan and Harrison on School Holidays. Last week they saw the barnyard movie and did a workshop at the local art gallery. This week they will be seeing "Monster House" and doing a walk from Wellington Point (just near here) to a small island just off from the point with the local council's vacation program.

Tuesday of last week we had a number of things planned but Jordan decided to make other plans for us instead. As I was having a lay in (as Dad had gone to work) Jordan and Harrison went into the backyard and played. By 7.30am I was ringing for an ambulance as Jordan had collided with a brick wall whilst on his scooter. Thankfully he listened to the constant nagging and was wearing his helmet only it didn't save his elbow and knee from a bashing. After three hours at the hospital we were cleared of any fractures and apart from some grazes and bruises all was good.

Today Jordan had his barium test done. Just have to wait till Liver clinic next Tuesday to find out what the team are thinking is going on as it appears there isn't a blockage in the stomach as first thought.

So that is really about all from here this week. Will have to check in again after we learn more next week (if we do).

Have yourselves a tremendous week, our new baby girl arrives this friday and the boys are counting the sleeps till then. We bought her a heap of toys today and a new collar last week - she is spoilt before we have her.

So until next week from a family of four (soon to be five woohhhooo)........ love, laughter and cheers!

Oh p.s. - on the photo pages check out Nan's 60th, the latest baby girl photo we have and also Jordanna and Harriet - soooooo beautiful!

Monday, September 18, 2006 5:34 AM CDT

Well firstly Happy 60th Mum/Nan. Nan received a small gift in the form of a DVD of her last 60 years of memories. It was played to her on the big screen and she thoroughly enjoyed it. All our guests also were able to take a copy home with them. We all had a wonderful time at the party.

As you all saw we said goodbye to our Forever Baby the other week. But as we had discussed before Travis got too sick we all agreed to find ourselves a new baby within a month or so. Not too quickly but in the right pace of time for us. Well find a new baby we did - I finally have my baby girl! We are purchasing a Lhatese - Lhasa Apsa x Maltese puppy who will be ready for us in the first week of October. As most of you know too Nan lost her Tom about a month before Travis and she just loved our girl so much that she is now purchasing one of her brothers. So Candice (the boys want to call her "Candi") and Jack will be moving to our homes at the same time and will be fortunate enough to grow up together. Their photos are on the photo page.

Harrison is still finding not having Travis around quite hard but slowly and surely he is working through his emotions with us. Adrian is fighting the flu at present and as most men is like a bear with a sore head. My health is pretty good for a change and Jordan had his endoscopy today.

Jordan's procedure was just routine to follow up on his from last year. It showed no sign of inflammation so it now appears that he may have no food allergies but his stomach hadn't processed his last meal of which it well and truly should have. He now has to have a Barium exam done to determine why the food was still there. This opens a can of worms for us in that it could mean nothing or it could mean he has a blockage somewhere. It is all one of our famous speed bumps that I talk about. One that you take with your eyes closed and hope that when you open them you have gone over the bump and it all still looks the same as the road you have just passed with no surprises in store.

Well basically that is about all from this household. Two weeks time is the test and then the week after our baby will have arrived woohhhooo!!!!

May you all have a lovely day.... talk with you soon!

Friday, September 8, 2006 8:55 AM CDT

Well Jordan has had a good couple of weeks since our hospital stay. His Endoscopy is scheduled for Monday week so fingers crossed all goes well.

Nan got a surprise when her good friend from Sydney visited unexpectedly last weekend. The boys enjoyed meeting Maureen and her husband Ron and Nan had a great time showing them her house & catching up with them.

Next weekend sees us celebrating Nan's 60th. We are having a party for Nan at Aunty Kath's & Uncle Mat's house. Parties are always a time to look forward to and that the boys are!

Last Friday night (as you will see from the piccies) we had our Inaugral CLDSG (Children's Liver Disease Support Group) Fundraising Event. Brandon's (Jordan's liver friend) mum Sarah has started the group and we had an Interactive Fawlthy Towers Comedy Dinner held at a local hotel. There was Sybill & Basil Fawlty with their sidekick Manuelle walking around us as we ate a 3 course meal. They performed some of the classic scenes from the show with us as the restaurant guests. After their performance the kids did a fashion parade in suits and then modelled the Logo merchandise for CLDSG. We all had a wonderful time and raised over $4,000.

Well what a week it has been here in Australia - the loss of Steve Irwin on Monday was just terrible. Children like Harrison and Jordan all over the world are wanting to know why? They have all grown up with his larrikan antics - Rest in Peace Steve. Then today the loss of another Australian - Racing Car Driver Peter Brock. Bathurst will never be the same again - rest in peace Peter.

As you can also see from our Poem above, today we said goodbye to our beautiful Boxer Travis. Adrian and I got him when he was just a year old and last month he turned 12. In recent years Harrison proudly proclaimed that he was now "His" boy and no one elses. Consequently this evening when we told the boys Harrison found it really hard. He wants to know that if we put his pocket money, Jordan's and our money together can we get another dog soon as he will be lonely without Travis. Rest in peace our "Forever Baby" we love you so very much.

Till next time..........

Tuesday, August 29, 2006 7:24 AM CDT

Well here we are clicking our fingers and waiting for the nasty bug to go away. Yep Jordan unfortunately picked up a new pet at last week's hospital liver clinic visit. It has the lovely name of Rotavirus and is a highly contagious gastro bug. We had everything controlled. Nan had Jordan for the day on Thursday whilst he did his thing and we went to work and school but then about dinner time when he was home with us he produced something the colour of the little smiley face clicking his fingers at the top of this page. Not exactly the colour that ones (sorry peeps) motions should be so a visit to the ER was where we went. Seems during the day Nan let him have a drink of blue cordial lol. We finally were admitted for the night though (or couple of hours by the time they got us up to the ward) to find out that he tested positive for the virus and so he stayed an extra day till Saturday so he could be monitored and have extra fluids as he was dehydrated.

Much to Jordan's disgust we are off school until things are all settled back to normal. We thought he may have been able to attend today but this morning there wasn't a good response from the bottom end of the body so we cried because the realisation that we were stuck home again sunk in for him. Personally I would enjoy the day off school but not Jordan - he adores it (which is such a good thing).

Whilst we were in hospital one of Jordan's closest little friend's 3 year old Samantha was having a very major operation. She happened to be in the room next to his so they blew kisses through the window at each other the day of her surgery. He was upset but understood that he couldn't cuddle and kiss her so blowing kisses was at least something. She is currently in ICU doing okay. Please remember her in your prayers though - we all pray for a speedy recovery!

I also ran into our good friends little Sarah Jane and her mum Chrissy in the hallways. I finally got to meet Sarah's little friend Hayley who she has met through her cancer clinic and her mother Bernie. They are such a lovely family and it was great to catch up with Sarah and Chrissy as I was too sick the other week to see them at Sarah's 4th Birthday party and help her celebrate her first year of clear scans.

At liver clinic last week Jordan was told that he will be having another endoscopy to see if there are any changes from last year's. This will be done sometime in the next month or so so hopefully once rota leaves us we shouldn't need to visit hospital until the endo. Jordan wasn't talking with Dr Withers when we left cause he knew he would have to go through a general anaesthetic and that is the only thing in the world this brave child fears. So he has a few weeks to think about it and try to get used to the idea.

I cried too though at last visit as Jordan told me he didn't need me to help him for his blood test. I used to hold his arm for him and help him but he sat in the chair all by himself with the one girl taking his bloods. He was so brave. My little man is growing up so fast. Soon he will be asking me to stay outside the room too.

Anyway Adrian and Harrison are doing well - they went to an antique truck show on the weekend of which both of them were in their element.

Well that is all from here - till next time... all our love, hugs and kisses.....

p.s. Still showing old but much loved photos.

Wednesday, August 16, 2006 6:02 AM CDT

Well here we are mid August and it is a great big happy birthday to Aunty Kath! Today is her birthday. We had lunch with Uncle Mat and Aunty Kath on Sunday to celebrate. Jordan chose a beautiful Passionfruit Spongecake for her birthday cake.

Friday Nan is due home. We all spoke with her on the phone this morning. She enjoyed her time in Russia and is currently in Singapore with something that is seldom seen here in drought stricken Brisbane - Rain! I believe her text message went something like - Rain, Rain and more Rain lol. Hopefully she brings some back with her to fill our dams - now that would be lovely!

Mid August sees the Bate household doing well. Healthwise - Adrian is having a couple of tests and then see his specialist next week, Leisa too has had a couple of hiccups with her treatments and is in consultation with a couple of specialists, Jordan is getting over a cold and ear infection and Harrison - well he is the healthy one of the lot. We all need a little of his magical touch and we will all be good.

The Ekka is in town (for those who don't know - that is our Royal Show). It brings lots of germs and bugs with it so this year we were pleased when the boys told us that their school were doing a Mini Ekka for the Grade 1 and 2s. On Tuesday the boys all had play money and were able to purchase a showbag, strawberry icecream (just like the ones at the ekka), have their faces painted and played games. They had a ball and Jordan was so pleased with himself that he had money left over at the end. It was so lovely to hear of the great day they had. Today the boys went to the local shops who also were doing their own Mini Ekka thing and again got another sample bag and saw Humphrey Bear on Stage which they loved.

Think for now these mini Ekka's are great for us. Some year soon though we will have to bite the bullet and take the boys to the real one. I keep saying when we are all well enough lol - time will tell I guess.

Well that is about all from here. Jordan sees his specialists next week so will update again soon. Enjoy more of some old photos...... till next time......

Tuesday, August 1, 2006 6:49 AM CDT

Well here we are in August - we are here and Nan has gone to the other side of the world to get away from us lol just joking. Nan (Sandra)is away on holiday so this household is back to their old routine of getting up early and going to our day care mum's house. We ALL miss Nan - Harry misses her so much that he had to ring her the other night to just hear her voice plus I think he also enjoys the fact that when she is here of a morning he can sleep in - he is our wombat that one. Jordan doesn't seem to miss now how does he say it "She is ALWAYS on my case!" but he still does miss her being around and trying to jump out and scare her as she passes through the door at 6am each morning. I miss my mum but then who doesn't and Adrian secretly misses "The Dragon" as she affectionately nicknamed herself.

But through it all we are soooooooooooo happy that she is having a great time with her sister who lives in Amsterdam. She rang us tonight and she is heading off to Russia in the morning. We were so pleased when she approached us to do the morning care of the boys so we could start work early but we were so much more happier that she hasn't given up her retirement happiness either. She still gets away when she wants and it just reminds us how beautiful she is and how much she is a wonderful part of our life - so ummm HURRY BACK mum! Just joking.

Health wise - Harrison is great, Jordan has a cold, Adrian has an appointment with a specialist in a couple of weeks and my thyroid has decided to do an about face and is now very underactive. It caused a minor panic with my endocrinologist - I think the call at 10.30am went something like "Yes Leisa, he would like to see you, can you come in about 12.30 - he needs to see you ASAP". Apparently he was trying to work out how he could get to me if I couldn't get to him lol. He has put me on medication that will end up being my lifetime buddies but at least this will straighten everything out once and for good.

Well not too much more to report on here. Will try to get back to you guys quicker next time. Nothing worse than clicking on a page waiting for the next installment lol - I know I am guilty of thinking that at times too. Damn life seems to get in the way all the time phpppt!

you all...............

P.S. Was going through some old photos the other day so thought I would share them. Enjoy!

Friday, July 7, 2006 6:02 AM CDT

Well July is upon us and but a year ago today Jordan's best little friend from Liver Clinic - Brandon received his gift of life. To think that a year ago we were concerned that his chances were not that great and now you can't stop him. Life certainly has been so wonderful to him and he is living it to the max! Some of our favourite photos of the boys with Brandon are on the photo page.

The boys are enjoying school holidays. They saw "Over the Hedge" and "Cars" in the first week of the school holidays as well as participated in the council events they were booked into. This week has seen them doing a vacation programme at the local Baptist Church entitled "I am Extreme". They look forward to this event every year and this year was as great as ever.

Next Tuesday sees the boys back at school for the third semester. Time flies when you are having fun hey?

My tests results came back very positive and at this stage things seem to be on the up and up which I am so pleased to report.

The next speed bump in our journey of life presented itself the day I got my results and as I managed to drive over my speed bump in this family car - Adrian now needs to have some tests done as he is having some kidney issues and a couple of other medical things. With the history of Alagille in this family and Adrian being the one with the dominant gene the next couple of months whilst we get to the bottom of this will be an interesting and challenging obstacle that we are ready to embrace with both hands.

People have asked how we cope with it all so well but to be honest I would be more worried if we were to look down our road of life to find no speed bumps as it would be more unsettling.

Well we are pulling the house apart this weekend decluttering so the clutter can be sold next weekend at our garage sale and then the markets the following day.

Best get back to it - take care everyone and talk with you really soon.

Lots of love...............

Thursday, June 22, 2006 7:03 AM CDT

Well here we are again. All is going really well here which is such a pleasant change. Jordan is doing really well since his stint in hospital the other week. The liver team are happy with him as are his surgeons. His bloods were slightly elevated this week but we just have to repeat them in four weeks and then if all goes well we don't need to return to clinic until mid August. Such a big gap in between visits is always promising that he is doing well and remaining positive there will be NO hiccups between now and then that will see us back there sooner.

Jordan received his new quilt two weeks ago and photos are available on the quilt4kids website. I have however, as you will have noticed posted one here at the top of the page for you all to see. We purchased one for Harrison also so he could have one as being a twin Harrison often misses out. We gave his to him on the same day as Jordan. You can see more piccies in the photo album in here of both quilts.

Once again a very BIG thankyou to all the beautiful ladies at Quilts4kids and also to Aunty Pat (Dad's Sister in Wollongong) for donating the postage money for the quilt to Linde from Quilts4kids so she could post Jordan's quilt. There are so many ways people help out these wonderful organisations that care about our beautiful children. Thank you again.

Well Harrison is going strong also and both boys are looking forward to school holidays starting tomorrow. They are seeing the movie "Cars" on Monday as well as doing some holiday activities with our local Council in the first week and the second week they will be doing Vacation Bible School. They did this last year and have been dying all year to be able to participate again.

On a me note - I see my specialist tomorrow but I am pretty sure that the Radioactive Iodine has done something and am hoping the results will be what my gut feeling is - that all is improving.

Well that is it from here. Please keep Sasha's family in your prayers this week as they prepare to say farewell to her and enjoy the precious new moments they are having with her baby sister Mia who was born just shy of 12 hours after Sasha earnt her wings.

All our love to you all..............

Monday, June 5, 2006 6:03 AM CDT

Well I guess we haven't seen the hospital ward for 6 months so Jordan's body decided it was his half yearly annual check up to visit his nurses. About two weeks ago Jordan had a terrible day temper wise which is VERY unlike him and I just knew something was not right. This has happened one other time and sure enough in over a couple of weeks (last time) he ended up in hospital.

Wednesday last week (exactly a week after his birthday) Jordan awoke with another blood nose and a sore neck. We thought it was just a kinked neck and Jordan wanted to go to school even though he knew he would only be there for two hours as we had a skin clinic appointment at the Royal Children's that day. When I picked Jordan up from school he looked terrible so I made a GP appointment for later in the day so we could look into the sore neck.

By the time I got to hospital he was lethargic and boiling. I happened to move his collar to see where the sore neck was and noticed the side of his neck swollen more than I have ever seen. We saw the skin doctor, cancelled the GP and headed to emergency. A scan and blood tests later and we were settling in for the night in our normal ward at the RCH.

It seems that Jordan's body was fighting an infection. It also seems it may have been in his lymph node. Two days later the other side started to come up but nothing like the other. Jordan responded well to the antibiotics and today Monday, we repeated the bloods and scans and they allowed us to come home.

As we usually do Jordan and I meet some lovely new faces whilst in hospital as well as mingled with our regular friends. Jordan meet a beautiful little 4 week old baby called Jennifer and shared a room with Tom & Krystal Ann and one of his liver friends Sam. He cried today cause he didn't want to leave. Who needs nightclubs and bars to socialise when you have hospital lol.

Harrison and his Dad had a terrific time together over the weekend together and Dad also spent two nights with Jordan during his visit this time which I must say was lovely. Harrison and I on Friday night at midnight (I know we were enjoying OUR time) were eating chocolate and drinking softdrink in my bed. Harrison went and got it whilst we were watching a movie. I know terrible mother letting him stay up late but he needed some time with me and we had only got home at 10.30pm.

Well that is about all from the family who never has a dull moment. You will see from the photos on the photo page that Harrison is not the only Bate twin who has brushed shoulders with an australian celeb in the last fortnight. Friday Jordan got to meet Kate Derauge (Australian Idol) at the hospital. She was so lovely.

Anyway till the next exciting chapter of living in our family have a wonderful week or two........ lots of love!

Here is a small video and pictures of Jordan's time at the Skipping Workshop he attended late May.

Wednesday, May 24, 2006 7:04 AM CDT

Happy Birthday to you,
Happy Birthday to you,
Has it really been 7 years seen we first met you?
Happy Birthday to you.

Where has the 7 years gone? So much has happened and I am sure it will be not too long we will be saying on their 14th - where did the last 7 years go?

Well following on from Jordan's last Journal we visited clinic. He had his mickey button changed and also had his bloods done. His levels all seem pretty good but his haemoglobin (sp?) is a little low so we have to keep an eye on any episodes of bleeding that he may be having so the nose bleed will have helped to the low count.

Apart from that though, he now weighs 20 kgs - something that seems like forever for us. I think an average 3 year old should weigh that so we are so pleased to see Jordan finally getting up there.

Well their 7th birthday. The boys have been spoilt. We took them to Movieworld on Monday and they had a ball. For a child afraid of going under anaesthetic (sp?) Jordan sure makes up for it when it comes to rollercoasters. I think he rode the various ones he could a dozen or more times and let me say they were hairy some of them. Harrison decided the more sedate was him. They met many characters and almost all the ones Jordan will have on his quilt that is being made by the lovely ladies at Quilt 4 Kids were there. As you will see if the photos attached they were happy to meet Batman.

The boys have had a few cakes - one for celebrations with family, one for their school class and one with our close friends. I hadn't made fluffy icing before but it was easier than I thought and I was pleased with the bat and icecream soda that I did.

Tomorrow sees Harrison and his Nan heading to Seaworld Nara Resort as part of a prize Nan won. On Friday they will spend the day with Grant Hackett so Harrison is very excited.

Sunday sees Jordan going to a skipping workshop with the club he belongs to so he is excited about that.

Well that is it from the house of the 7 year olds.

Till next time..............

Saturday, May 13, 2006 7:23 AM CDT

Well I am sure this person has seen Jordan, Harrison and Myself dancing lol...... we are legends in our own lunchboxes - Just ask us!

Ahhhhh middle of May. Mummy's day tomorrow woohhhoooo!!!! The boys are itching to give out presents to myself, their Nan and their Great Gran. Tomorrow can't come quick enough.

It is always great though to have some bright in the sometimes too constant dull. Since the last post I have been better but Harrison has been a sick little man. He had an horrendous temperature the Thursday week ago so 12.30am the doctor visited and antibiotics was the answer. Harry spent the day at work with me and slept almost the entire day - not a healthy boy. All became better and the week meandered along but then Friday morning down it all came again.

1am Harrison decided that the carpet required some decoration which awoke his father and Adrian had a lovely job to clean. I managed to settle Harrison back into bed and then Adrian and I fell into our bed. 3am came an all too familiar cry from Jordan's room - we heard "Ohhhhhhh my bag is leaking" so Adrian went in and it in fact was "ohhhhhhh my nose is bleeding" and bleed it did! For the next hour it decided to soak a tissue and then another and another (and you get the drift). When (sorry too much info here) a largish clot came out we went out - to the hospital. Finally (oh what a surprise) just after we arrived there it stopped. The doctor however, did do a blood test to check for his haemoglobin levels but we haven't heard anything so all is okay. I have however brought his liver clinic appointment ahead to next Tuesday as I would prefer to be safer than sorry.

6am I slowed down long enough to let Jordan out of the car so mum could get him ready for school whilst I headed to work. After work was our usual Friday routine - Harrison at Gymnastics from 3.30pm - 4.30pm and the Skipping for Jordan from 4.30pm - 5.30pm. Harrison wasn't too good through skipping so I figured that I hadn't been out long enough that day and hadn't visited enough waiting rooms and I headed to the doctor's. Turns out that due to the fact Harrison dislikes medicines and chewable tablets (only capsules please or I will show you how far down the drain they should be) his refusing the antibiotics from the week prior have caused his right tonsil to become so close to having an absys that the talk of hospitalisation and removal came into play - no thank you not for this little black duck! So now we are on even more meds but happy to report a very happy boy today - considering yesterday. 8pm I hit home and not long after was bed for all three of us.

Right now as I write this I can hear Jordan upstairs crying - he now has an horrendous fever and terrible pains - so as I am off on my continual merry-go-round I bid you all a very Happy Mother's Day whatever you may be doing.

Lots of love................

Thursday, April 20, 2006 7:31 AM CDT

here we are again and we hope you all had a very Happy Easter.

Easter for us was interesting. Good Friday I got quite sick and ended up spending the night in a hospital ward. The weekend wasn't much better for me but all the times I have spent in hospital with my Little Man have paid off. I couldn't walk all that well as I ended up with Vertigo but Jordan was beautiful - he would come in to me and stroke my head or leg and then if I did walk through the house he would hold onto me and guide me lol. As I have had to take the time off work this week as I cannot drive or still get good bearing Adrian and I decided I would have the treatment for my overactive thyroid too so am now home radioactive whilst the boys are enjoying four days with my mother and my sister in law.

As I couldn't get out this week Adrian took Jordan to Liver & Fracture Clinic. It seems Jordan may have in fact pinched his cartlidge so he is to return to Fracture Clinic in three weeks to see how he is getting on as he is still having troubles walking.

His Biliruben was up again at Liver Clinic but he is also at the start of a cold so they think it is counterbalancing that. Jordan has again lost a kilo in weight. His appetite is and always has been appalling. We have to try and increase his calorie intake. He really is so hard to get to eat and I was under the impression that by now it should be improving. We have had him off his pump to see if that increases the appetite but unfortunately not.

His liver team apart from the weight and bili are very happy with him so we don't need to return for another 6 weeks or so woohhhooo!

The boys are turning 7 in a month's time - where did the years go? But then when I look back on all that Jordan has been through I realise they have been an interesting 7 years.

Anyway must head up to bed whilst I have the house to myself and catch up on rest. Take care and all our love....

Sunday, April 9, 2006 6:44 AM CDT

Firstly may I say as we are into the beginning of April already (where does it go?) - thank you to all of you that have enquired after my health. The original medication isn't working so I need to have a stronger treatment. This is to be happening at the beginning of May. The four days that I can not have close contact with the boys and Adrian they will be living away from home. Although what will I do with four days all to myself? (hmmm the mind boggles).

Jordan has been going great. He is the best he has ever been. This afternoon he went with Harrison, his two friends and their father to the park to play. Within ten minutes Harrison was back telling us Jordan had fallen over. I took the car with me as falls with Jordan aren't simple. I scooped him up carefully when I got there and brought him home.

Yup the ambulance arrived and took him to our local hospital where he was xrayed to see if he had yet again fractured the same femur in his leg as a couple of years ago.

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The doctor couldn't find anything but Jordan is still in a lot of pain and limping so tomorrow we will take him back for a CT Scan. Hopefully this will show something.

So that is about it from here for now. Will update again in the next week to let you know where the little man is at!

Image hosted by TinyPic.com Take care - all our love............

Friday, March 24, 2006 5:40 AM CST

Well here we are peering into April.

For Jordan healthwise he is doing very well. It is nice for a change to have a breather from the merry go round. He did give us a scare last week when he decided to show our neighbours how he did a handstand and came down on his hand very hard. With his history of brittle bones off we went to the hospital for x-rays. Thankfully not broken or fractured but VERY bruised.

He was a little scared last week also when he sat at the big round table in the Deputy Principal's office with her, his teacher, one of the ladies that does his feeds and then I walked in. Jordan being so well at present and I imagine better than he EVER has, wanted to test the waters behaviour wise in regards to his feed times. He decided to be a little silly so we had to make him aware that fun is fun but sometimes we need to be serious. Reports so far say he is doing very well and behaving nicely.

Jordan's quilt that I have spoken about previously is coming along beautifully. He only has 4 people left to do squares for him and then it will be put together. He is so very happy and just adores the squares already on the site. As I have said he thinks it is amazing how people he doesn't even know have done such a beautiful thing for him. Here is the link if you want to check it out. http://www.quilts4kids.com/html/jordan_b.html Also whilst there check out Sarah M - she is a very close friend of ours her quilt is just starting and I am sure will be beautiful also.

Speaking of generosity Jordan wants to say thank you for the hugs he is receiving on the link above - thank you!

Well that is about the news from here. Have a wonderful week and catch up with you soon.

All our love....................

Thursday, March 2, 2006 6:27 AM CST

Well here we are again and it is March already. Why is it that the months fly by so much nowadays?

Jordan has been given the best news we have had in a few years. He is doing so well at present that we do not need to see his liver team for 8 weeks. We haven't been on 8 weekly visits for over three years. We are very happy.

Today Jordan saw his specialist. He too is very pleased with him. Jordan's diversion (the bag he wears) is the very first to have been performed here and his doctor is extremely happy with the results and will use this as a basis to try it with another child should they need it. Jordan is doing so well with it that his specialist does not wish to see him for (get this - woohhhooo) 4 months!

We are so pleased Jordan is doing so well as I have again been sick. Although I still have the low white blood cell count I now have a thyroid that has decided to become over-active. Hence I have been very unwell. I saw a specialist the other week and am now on 2 types of medication to help bring it back into order. I was scared there for a while as I didn't know why my body was doing what it was. There is a chance I may need a stronger type of treatment though as my white blood cell count comes into the equation with some medications but fingers crossed this all works.

It always seems that just as I get Jordan back to some sort of normality my body says - okay time for you to get sick so you can rest. I currently have another friend in the same type of situation as me (in a number of ways) and we both just laugh about it because if we didn't we both would become very sick and who needs that hey?

Well on a brighter note - Jordan's quilt that is being created by a wonderful group of beautiful people who we met through an friend online is coming along nicely. The Co-ordinater Linde needs 30 people to cross-stitch squares for Jordan in his theme. They currently have 21 squares being done for him and need just 9 more stitchers. The quilt is then sewn together and will be presented to Jordan mid May - just in time for his birthday. He is so excited as two of the squares on his page in their website and he can't believe how people who do not even know him can be so kind and generous. Quilt4kids are a lovely group giving children with lifelong conditions something they can have forever. If you want to check out the squares so far please click on the link further down on this front page of Jordan's site.

Anyway that is it for us this week. We will hopefully catch up again in the next fortnight.

Take care and all our love.................

Thursday, March 2, 2006 6:27 AM CST

Sunday, February 12, 2006 5:44 AM CST

Hey everyone!

Has it really been a fortnight since the last post?

We had our followup appointment with Jordan's Surgeon who still firmly has diagnosed that it was a case of cholongitis. The radiographer doctor still wasn't too happy that the surgeon did not remove his appendix as they were enlarged so our surgeon agreed for Jordan to have a repeat ultrasound in a couple of weeks. I firmly trust our surgeon and as he said Jordan would not be walking and running if it were appendicitus. So Tuesday 21st we will have bloods drawn, an ultrasound and then our regular liver clinic appointment.

Last week we discovered that the school the boys attend has dropped in numbers on their day 8 review they had to lose two teachers. So a mixed up week for us as Jordan's teacher was one that was leaving. It turns out that they have easily solved the problem and as of tomorrow Jordan will begin with a new teacher.

Last week was also a wonderful time for the Bate Family. Adrian & myself became GREAT Uncle & Aunt and the boys received their first new second cousin. Hence the first great grandchild for Edna & Charlie. Nikki - Adrian's niece gave birth to a beautiful baby girled name Krystiana. The boys were absolutely smitten with her and it was hard for Adrian and I to get a cuddle of her as the two clucky ones fought and grappled over her.

I have attached their piccies with the baby as well as Nikki, Krystiana and the boys.

That's it for now - have a great week and catch up with you all soon..... The Bate Family

Saturday, January 28, 2006 5:47 AM CST

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Well here we are. A little earlier than expected.

We had a lovely holiday.

The first week - Monday we settled in and then took a walk to the river to have a swim. The boys just loved it. On Tuesday it started to rain so we went to the movies to see "Nanny McPhee" of which the four of us enjoyed. The afternoon saw us swimming again. Wednesday we went fishing and as you will see from the photos the boys had a ball! Thursday saw us visiting the Ginger Factory. They have a new marionette type ride called "Overboard". You board a boat which takes you on the journey to find the gingerbread man as he escapes from the kitchen on board this ship. You travel through all countries and you have to find him. We were lucky enough to go around twice and we all loved it. Friday Nan went home and Dad joined us. We had a quiet day. Saturday was raining but we still decided to hire a boat and go fishing with the boys.

We returned home on Saturday night to prepare for school starting.

The second week - Monday and Tuesday saw the boys starting Grade 2. They both love their teachers for this year and I am sure they are going to have a great year!

Tuesday afternoon we returned to the coast to complete our holiday. As Thursday was Australia Day we decided to take the boys out for the rest of the week to finish our holiday.

Wednesday saw us visit the Markets at Eumundi and then morning tea and a swim with Jordan's Great Aunt & Uncle at Maleny.

Image hosting by TinyPic This smiley that you see is pretty much the way Jordan was on Wednesday as we did the things we had planned.

We returned to the unit after visiting and Jordan put himself to bed to sleep. I too selfishly slept instead on taking action which later I was grateful for. When we both awoke he was worse than he had been all day. He was doubled over in pain and earlier in the day was trying to be sick.

So we called in to see a doctor. Image hosting by TinyPic

He advised that I drive back to our normal hospital straight away for Jordan to have a stomach xray.

We got to the hospital about 7pm after setting out around 5pm and Jordan was taken into emergency. He had an xray done and was VERY tender to touch in the abdomen area. By 1am we were being taken to the ward (his second home) to be monitored and have an ultrasound done. Thursday morning - just 7 hours later after being on antibiotics he was bouncing off the walls. You would not and neither did the doctor that had seen him 7 hours prior believe he was the same boy. At 10am we went for an ultrasound to show a very enlarge appendix. Jordan's normal surgeon advised against operating as he has been inside him too many times. He wanted to wait and see how he would react to the antibiotics. His biliruben tripled what it normally is and they were now concerned that it had something to do with his liver and not the appendix as previously thought. More Bloods were drawn to try and work it out. Today we were reviewed again and as Jordan didn't look sick they decided that he had had enough Antibiotics through the drip so allowed us to come home with oral antibiotics. This morning his surgeon told us that is was in fact a case of Cholongitis.

Image hosting by TinyPic Here it is in technical terms - Cholangitis is a bacterial infection in the bile duct. In general, something must be abnormal for cholangitis to occur: either there is some sort of obstruction to bile flow, such as a gall stone lodged in the duct, or scarring of the duct due to an inflammatory disease (e.g. sclerosing cholangitis), or some other sort of blockage, or the biliary anatomy is abnormal due to previous surgery. Patients that have abnormal biliary anatomy because they have had a porto-enterostomy (Kasai) or an operation that includes a roux-en-y reconstruction of the bile duct (this is what Jordan kinda has with his bag he wears) can have cholangitis for no good reason. However, in patients that have had a Kasai (similar to Jordan's bag) operation, recurrent cholangitis is considered to be a sign of impending liver failure and is sometimes used as an indication for liver transplantation. The treatment is antibiotics, plus relief of the obstruction, if one exists.

So hopefully this is Jordan's first and LAST bout of it.

Sorry for such a long post but as you can see Jordan's body decided that he and I are not meant to holiday away from home or the hospital lol..... Harry on the other hand is having a great time. He stayed at the beach with Nan. Aunty Kath and Uncle Mat joined them on Thursday and Friday Night Adrian went up too. So as I write this they are out to dinner whilst Jordan and I have settled in for a quiet night at home with the "Fantastic Four".

So there you have it! Our exciting holiday. Hope you all are having a great start to the year as we watch the first month slip by.

All our love............... The Bate Family!

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Wednesday, January 11, 2006 6:28 AM CST

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Yep that's right - we are away next Monday for two weeks! Unfortunately Dad has to work but will join Mum and the boys during the weekends. Nan will be joining us for the two weeks and toward the end of the Holiday Aunty Kath & Uncle Mat will be joining us for Australia Day weekend.

During the second week of holidays we will be back home for two days so the boys can meet their new school teachers and their new classmates. As well as visit Jordan's surgeon to do a progress update.

Yesterday we visited Liver Clinic and apart from Jordan's weight they are extremely pleased with him. His liver levels have finally come back to his normal. I would have to say he is probably as good as he was three years ago. His appetite still has not picked up so his weight gain isn't great but hopefully things will improve this year.

So all in all we are heading into a great 2006.

A friend we have meet through Caringbridge pages referred us to a beautiful website where they create quilts for children who live with life conditions. They are making a beautiful quilt for Jordan with a superhero theme. He is so excited. It is due to be finished near his birthday. Please feel free to click on the links below to go to Jordan's page on Quilts4Kids.

Well until February this is the Bate Family signing out and heading for the beach!

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Sunday, January 1, 2006 6:35 AM CST

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We wish for you to be...
Together with your beloved family and cherished friends,
May you find the food better

May someone love you enough to forgive your faults,
be blind to your blemishes, and tell the world about your virtues.

And may we live in a world at peace and with the awareness
of God's love in every sunset, every flower's unfolding petals,
every baby's smile, every lover's kiss, and every wonderful,
astonishing, miraculous beat of our heart.

Happy New Year 2006 from our Family to yours!
May You Find Peace, Love, And Joy This Year

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Monday, December 26, 2005 4:49 AM CST

From our family to yours this Holiday Season - Merry Christmas and a Happy New Year.

See you in 2006!

Monday, December 19, 2005 2:03 AM CST

Well here we are but 6 days shy of Christmas. It is coming around so fast!

Things are going good here. Jordan has had a couple of restless nights with a bad cough and itching but all in all the operation this year has been a success.

We are all gearing up for the festive season having finished the last of the official parties yesterday with the boys attending a children's party at our local club. Saturday evening we did a little Christmas Light spotting as you will see from the photos.

So what is everyone doing this Christmas? - We will be lunching with friends on Christmas Eve and then attending Church. Christmas Day is lunch at my sister's and then an afternoon swim at my aunts house with the day finishing with friends by the sea for dinner.

Boxing Day will be spent with Adrian's family.

So all in all we are as ready as we can be for the big weekend. We all are looking forward to the rest as the last couple of months have been exhausting - if not for the boys of the house that think Christmas just happens it has been for me.

So from our family to yours - whatever you are doing this Christmas may love, peace and joy go with each of you and you have a safe time this festive season.

All our love........... Leisa, Adrian, Jordan and Harrison.

Thursday, December 1, 2005 7:15 AM CST

Welcome to December, 2005 - hasn't the year flown by!

Well Jordan is doing okay at the present. He saw the liver specialists the other week and they are currently happy with him.

Today we saw the surgeons and they too are happy. This past week or so Jordan has been have some minor issues but all the same worrying. He had bad cramping again all weekend and another episode yesterday that had him come home from school. We had him at emergency on Saturday but as per usual they could find nothing wrong. It is such a shame they can't see him in the middle of an episode. He is so good at hiding his pain from people that don't know him all that well - in a way that is great but in another quite frustrating.

Also on Sunday his stoma was bleeding a lot and was quite flat like he was dehydrated. After talking with the surgeon today it seems that this will be an indication of him being dehydrated so in a way that is a good thing.

The bleeding apparently is indication that there is some scar tissue growing inside the stoma. If the bleeding keeps happening then they will need to look inside and possibly burn the tissue to allow the stoma to flourish. Time will tell (story of our life lol).

We do not need to see both the surgeons and the liver team until January - although with a number of things that have been happening lately with Jordan I am keeping the transplant co-ordinators up to date so our file is current should something major happen.

Harrison is doing really well. Thoroughly enjoying riding through the bush behind our house with his dad. He is particularly enjoying the wet weather as it makes the dirt tracks moist and allows him to flick mud up his back as he goes through the puddles.

We are all gearing up for our annual Christmas Party with our friends this weekend. The house is taking shape and nearly all the christmas stuff is up. Our camera decided to play up a little so the photos attached were taken on my phone. Santa's little helpers after our efforts. I promise to put up better photos when I get the camera worked out.

Anyway have a great start to your December and I hope to catch you all again before Christmas!

Seasons greetings...............

Sunday, November 6, 2005 5:13 AM CST

Well here we are again and already in November - where has this year gone?

The tour of B105 was just terrific. The boys got to sit in the studio with the "Morning Crew" whilst they went to air. We also saw their HUGE wall of CD's of which is a smidgen on what they currently have on hard drives.

It was so great to see the workings of a radio station. I think the boys didn't realise there was so much that goes into what they listen to in the car.

Jordan has recently been back with the surgeons for his follow up. The night time itching is now pretty hit and miss so things are slowly settling down again. His liver functions still haven't returned to HIS normal but hopefully that is just a minor hiccup. The surgeons are happy with him and we go back in a month's time.

He has his liver specialists this week so hopefully some more good news. I think the itch that I was concerned about the other week is only minor now but when I wrote the last journal it was just so sad to think things were going back to normal but thankfully they aren't as bad as I first thought.

Harrison and Jordan are looking forward to swimming at school in the next few weeks. They will have 8 lessons over two weeks. The boys also found out this evening that Adrian and I have purchased them tickets to see the Wiggles as part of an early Christmas present so Adrian will take them on December 10.

Adrian is doing well, as am I - Travis is getting much slower these days so I think our time left with him will be limited. Harrison will be devastated cause Travis is now "His" dog. When we aren't looking he coaxes Trav onto his bed and they fall asleep together. We are a little lax with it as they both need each other and we are making Trav's days as comfortable as possible.

Well that is about all from us. We are currently gearing up for all the things this time of year brings.

Our love to each of you and thankyou for popping in and leaving Jordan messages - he thoroughly loves going through them with me.

Take care and talk soon...........

Monday, October 24, 2005 7:49 AM CDT

Well tomorrow is our visit to B105 to tour the station and see "Behind the scenes". Jordan has been waiting and asking every day lol.

Life hasn't been too bad a little upsetting - last week I wasn't coping to well with everything it is hard to see Jordan having some issues and ensuring that I am giving Harrison the right attention he needs.

Harrison was sick according to him last week but with a little investigation I soon realised he was just wanting HIS sick time with mum.

Last Tuesday night I cried myself to sleep. Jordan's itch is back. It sure was not a 100ure for the itch but it was a damn good shot at helping him to relieve it and allow him the chance of a good nights sleep. Tuesday last week he was awake at normal time (pre-op) itching and crying in his sleep. He has again been disturbing his night time nappy.

He also has been very alarmed with a few things drawing my attention to them in fact. Now that he is 6 he tends to do a lot of things I used to keep an eye on and he is so grown up and responsible for his age. Last Friday (sorry to be graphic) but his stools were not the normal colour they have been. They were the same as when he was a baby so it seems his liver MAY be playing up and not working properly. Friday I contacted our Liver Team and we are having bloods done tomorrow to determine if something is in fact happening. We will see the surgeons again next Wednesday unless the results have us being called up sooner.

Tonight he was again worried as his bag is not producing as much bile as it normally does. He mentioned it to myself and also to his father when I was out at dancing tonight. So the next few days (as I mentioned earlier) will be a test of time I think.

Anyway that is it from here - need to hit bed if we are to be in the City early tomorrow. Enjoy your week and I will catch up with you all again just as soon as I know some more.

All our love...............

Tuesday, October 11, 2005 7:37 AM CDT

Well here we are..... three weeks (almost) from our last major operation and what a three weeks it has been.

Jordan's surgeon was very pleased with his progress last week when we visited apart from his liver functions being high the rest of the visit was good - the stoma passed inspection. There was however a large blood clot beside the stoma but after a little help it is now just a large bruise. His bag is changed daily at present to help keep an eye on the bruising. He wasn't too thrilled with them trying to remove the stitches around the stoma so at present they are still staying firmly there till hopefully we can try again next Tuesday.

Early last week both myself and Charlie (Jordan's Grandpa, Adrian's father) had to have a couple of xrays done. Thankfully mine was normal but unfortunately we couldn't say the same results for Charlie. His was a chronic subdural hematoma (this occurs when blood vessels � usually veins � rupture between your brain and the outermost of three membrane layers that cover your brain (dura mater). The leaking blood forms a hematoma that compresses the brain tissue). Of course it is something that needed immediate attention and the next day he had it removed. We were very fortunate that he came through it all well and surprised us today when they allowed him home. The next three months will be a little hard on him as he isn't allowed to drive and he hates being a passenger but sometimes we do things we don't usually like to do.

Today we saw Jordan's Liver Specialists. I was concerned about the liver function results of the last week. Today's results had come down slightly but all the same they still worried me as I am not used to his levels being that high and I wasn't too sure what it all was meaning. Anyway his specialist said that although they are high and showing that there is something happening inside the liver she felt that it was mostly post operative and that we should just sit tight and wait to see. So for now our next appointment is in a month with them and the same with the Surgeons. We should know more then if things are going good.

So all in all Jordan is doing well. Still no itches and the more the days, weeks & months pass the more we will be certain we chose the right option for him. I sit in his bedroom doorway most nights and just watch him sleeping - such an amazing difference to three weeks ago - some nights it brings tears to my eyes to see how far we have come.

Today by luck Jordan and I ran into a lady from a radio station (B105) that we have gotten to know and she asked if we would like a tour of the station. So two weeks today we are hoping to take Harrison with us. Jordan is over the moon and Bec is just the loveliest person you could meet.

So there is a little fun to our days to look forward too changing those bags every day isn't too bad but some days it wears a little thin between us lol.

Again - thanks to each of you for your thoughts and prayers these last couple of months. They are very much appreciated.

All our love till next I write................

Wednesday, September 28, 2005 6:55 AM CDT

Well here we are - home a day later than we were originally told but a day earlier than we & the nurses really expected.

As you can see from the pictures Jordan had a little pain over the last week but he is just the most bravest boy in the world.

Friday 23rd was his operation. His doctor told us the operation would take about 3 hours. Whilst waiting to go into theatre the staff suggested it could take a little longer. All our preparations for "Going Under" were nearly squashed when Jordan kept telling us to wait till he settled down before they gave him the fluid in the canular to put him to sleep. The doctor ended up wanting to use the mask he so has a fear of but I promised him Jordan would go to sleep with the fluid. Thankfully he calmed enough to get himself off to sleep otherwise eight weeks of visits to the Occupational Therapist would have walked out the door and we would have been back to square one.

The next three hours went smoothly for us - we did a little shopping to keep our minds off the operation and returned in time for him to come out. It was then a further three hours where we sat watching the clock wondering if this was the hour they were going to call us.

His doctor finally emerged after the 6 hours to tell us that all had gone well and that they were pleased with him. The first of our two major hurdles was overcome.

The next few days Jordan slowly recovered from the Major Overhaul they had done inside of his body with the 6 procedures they did. The only hurdle for myself and Kristen (one of the nurses - she was the nurse we had last year when everything went wrong) was to see him pass a normal stool. That was to happen 3 days post op on Monday and again yesterday. He only started on solid food today but his doctor was so pleased with him and said there wasn't too much to do that I couldn't be doing here at home so we were discharged this afternoon. I have to keep an eye on him but hopefully he continues to travel well. Our next appointment is next Wednesday and if all goes well he will be able to return to school.

His biliruben levels are up so he is more jaundiced than when he started and one would imagine these would be down now that we are containing the bile in the bag rather than it travelling through his body. Apparently his body needs some time to allow the swelling inside the stomach area to return to normal. His liver functions are a little higher than normal too so these will be monitored again next week.

So for now it is slow baby steps but each step seems to be moving in the right direction.

Jordan of course kept everyone on their toes and laughing with his character. His latest two jokes that he HAD to tell the whole ward are:

Q - Why did the blonde put crumbs in the toilet?
A - To feed the Toilet Duck

Q - Why did Tigger look in the toilet?
A - He was trying to find poo

As always the nurses were very pleased with their little star.

Unfortunately I ended up back in DEM at the Adult Hospital yesterday as my Shingles from three weeks ago has once again flared up. So again - baby steps for myself as well. Some rest is what I think is the key to getting over this.

Anyway - we really need some sleep. Thank you to everyone who has sent their love and wishes to us through various channels. It has meant a lot to all of us.

All our love and wishes.......... The Bate Family.

Monday, September 19, 2005 5:49 AM CDT

Well this is the week. Thursday is our pre-surgery appointment with the Surgeon and then Friday is the BIG day.

Jordan is still quite anxious about going under so he and I are still going through our preparation routine of relaxation and helping him to get through it.

This afternoon I think Jordan felt he needed an earlier visit to the hospital as I caught him on the railing of our two storey house. Told me he was just pretending. My heart jumped outta my skin (not that it hasn't this week already nor are the nerves all that calm). I think it is moments like this week that make you question yourself. I know this is the right thing I have chosen for him to have done but all the same am very anxious about it. With the mishaps after the simple surgery last year it is making me a little more apprehensive than normal.

So anyway enough about us and our anxieties. The boys are on holidays this week so they have a fairly full agenda at the beginning of the week. They are going to a kids club for the first three days and also doing the shopping centre rounds of entertainment. Last week they did the shopping centres and the movies - "Sky High" and "Shark Boy and Lava Girl". They are very much enjoying the time at home and although they have their days seem to be getting on really well at the moment.

In closing we wish to thank you all so very much for your love, support and prayers over the last few months as we started this next part of our journey. Thank you also for the prayers and love I know you will be supplying us over the coming week.

So from all of us to all of you - thank you so very much - all our love and wishes............. The Bate Family!

Thursday, September 8, 2005 7:11 AM CDT

Well here we are again. Early September - just two week's till Jordan's Biliary Diversion.

He has been working really hard with his Occupational Therapist to be ready for the operation. He is still so scared of going under but hopefully we have done enough with him for him to get through it okay.

Not too much happening here at the moment. Guess I must be stressing more than I realised as I have ended up with Shingles. Hopefully that and Jordan's small cold he has will be gone within the next two weeks.

Harrison is excited - he will be having a sleep over at his day care mum's house for the first time the night before Jordan's operation. Jordan of course thinks that is unfair but at the age of 6 what isn't unfair? The two of them are certainly trying to vy for top dog these days lol.

Well this is the last week of school for this term. The boys are doing a ball game carnival so am looking forward to catching that for an hour or so on the final day of term.

They haven't much planned for the holidays but with all the good things that the local council and the shopping centres do I am sure they will find plenty to keep themselves busy.

Anyway I must hit bed. Love to you all and thank you for leaving Jordan messages - he just LOVES reading them and seeing who has visited his site.

P.S. Thank you also to everyone who has been praying for Jordan's little friends - Little Sarah still needs some prayers whilst she awaits her results, Brandon is home and doing well and William (his other liver friend) is having a tumour removed next week so please pray for him too. I think this year we have almost used up all our prayers - lucky God gives us an infinate amount!

Wednesday, August 10, 2005 6:28 AM CDT

Well here we are again. Today we visited with Jordan's Surgeon. Through our discussions about what is in the best interests for Jordan we have agreed to have the operation done. Friday September 23rd is the day that he will go into the Royal Children's Hospital (or Hotel Herston for us regular families).

Jordan will wear a stoma bag that will collect the bile (as I mentioned in the last journal). He also had the barium done and they have found his bowel isn't twisted but they have confirmed the gastro reflux.

So after all that we have gathered these last few months Jordan's doctor is going to perform the following procedures whilst in the operation. The operation will take at least three hours to complete.

1. First and foremost as last mentioned he will have the External Biliary Diversion done - to recap - A PEBD is a surgical technique which involves isolating a segment of intestine 10 cm long for use as a biliary conduit (a channel for the passage of bile) from the rest of the intestine. One end of the conduit is attached to the gallbladder and the other end is brought out to the skin to form a stoma (a surgically constructed opening to permit the passage of waste). Partial external biliary diversion may decrease the intensity of the itching and abnormally low levels of cholesterol in the blood.

2. Fundoplication has been the standard surgical method for treating gastro-esophageal reflux disease.

What happens during fundoplication?

During the fundoplication procedure, the part of the stomach that is closest to the entry of the esophagus (the fundus of the stomach) is gathered, wrapped, and sutured (sewn) around the lower end of the esophagus and the lower esophageal sphincter. (The gathering and suturing of one tissue to another is called plication.) This procedure increases the pressure at the lower end of the esophagus and thereby reduces acid reflux

3. Cholangiogram - A radiographic procedure where a contrast dye is injected into the bile duct to visualize it's course on x-ray. Used in the detection of gallstones which block the common bile duct.

4. Laparotomoy - The main reason for a laparotomy is to investigate abdominal pain. The abdominal organs include the digestive tract (such as the stomach, liver and intestines) and the organs of excretion (such as the kidneys and bladder). Your surgeon may need to operate to find out the exact cause of your complaint. For example, they may need to pinpoint the cause of internal bleeding in the digestive tract, or find out where your bowel may be perforated, before treatment can commence.

5. Sysis of Adhesions - This is where they will look inside Jordan's stomach for any adhesions from previous surgeries and remove them if needed.

6. Liver Biopsy - As the doctor will already be in there it has been decided that we do the biopsy to give his normal specialists the most concise look at how his liver is really going. This is far more affective than the ultrasounds he has.

So as you can see there is a lot that they will be doing. Yes there are many complications of which we have had explained to us but ultimately these procedures will hopefully help Jordan to live a more comfortable life that he currently is. He should be able to sleep throughout the night and possibly even feel like eating meals again.

So have your link to the lord open on this day and say a little prayer for us please.

Jordan will be in hospital for at least 4 days.

A little brightness to the medical side - The Brisbane Show or 'Ekka' is in town and side show alley is right beside the hospital hence the boys getting excited whenever we are there. The hospital foundation gave us an opportunity yesterday whilst we were at hospital to visit for an hour for a little of the fun the show will bring. As most of these children can't attend the show due to the many bugs around and now with our operation next month we won't be attending either they put on face painting, balloon sculpting, free showbags, fairy floss, toffee apples and drinks. It was great. Jordan and Adrian are booked to go on Sunday for an hour before it opens to enjoy some rides too. Harrison and I are going to be spending some very much needed time together just the two of us. Then the four of us are going with friends to the Science centre for the day.

So for us - that is about where we are at at present. Please remember to keep your prayer link open also for Jordan & Harrison's little friends Sarbear & Brandon whilst they continue with their medical journey.

All our love to you all in this second week of August. Will catch up with you again in the next few weeks.

All our love.....................

Wednesday, August 10, 2005 6:28 AM CDT

Sunday, July 31, 2005 7:53 AM CDT

Well here we are again - beginning of another beautiful week.

I managed to sleep almost the entire day today. This past week has been full of appointments and the mind is ticking over ten to the dozen.

Jordan had his endoscopy on Monday. They found his Esophagus is inflamed. His doctor took a biopsy and the results will be 100% conclusive in the next week or two. Also when he put the scope down he noticed it did not go in the right direction it should have which again makes them think his bowel may be twisted.

Wednesday we saw Dr Ong the surgeon. He is evaluating him for a Partial External Biliary Diversion as his itching is still very chronic and medication is not helping him. Winter he should be less itchy and he isn't. A PEBD is a surgical technique which involves isolating a segment of intestine 10 cm long for use as a biliary conduit (a channel for the passage of bile) from the rest of the intestine. One end of the conduit is attached to the gallbladder and the other end is brought out to the skin to form a stoma (a surgically constructed opening to permit the passage of waste). Partial external biliary diversion may decrease the intensity of the itching and abnormally low levels of cholesterol in the blood.

Upon reviewing his ultrasound he found that Jordan's gallbladder is excellent for this procedure. He is requesting that we have a barium done. This is where they will put some dye through his button and watch it travel through his bowel to see if it is in fact twisted. They will need to do this before they finish the evaluation for the diversion so that if it is in fact twisted they will fix it whilst there. This is one reason why he possibly could be having the stomach cramps. The barium is this week and then we see the surgeon again on Thursday week.

We then saw the dermatologist. He was looking at Jordan's very dry skin. Jordan seems to have eczema which won't be helping his itching. He gave us three different types of creams to put on him of a night time and we are to see him again in two months time.

The next appointment saw us with the Respiratory team at the hospital. Jordan's night time cough was a mystery to them. They sent him for an asthma test of which came back negative. Between this doctor and the surgeon earlier in the day they said that the biopsy shows that Jordan is borderline for a condition called Eosinophilic Esophagitis which is an Allergic Inflammatory Reaction of the Esophagus. This still isn't 100% confirmed and is still borderline if this is the correct diagnosis as he doesn't have all the symptoms but could well be the cause of many things happening with our little man. It can cause a skin rash, the cough at night due to the formula being pumped into his stomach coming up the Esophagus whilst sleeping, the abdominal cramps and also possibly his lack of wanting to eat.

With all this in mind and the negative asthma test the doctor has put him onto a puffer (seritide) at night to see if it settles his cough. We have also decided to angle his mattress to allow his head to be higher than his body in the hope the food stays where it should. We see the doctor for this again in 5 weeks.

So time will tell in the next few months where we are at with Jordan. The surgeon is going to talk more to us in two weeks about the operation and about the care of a stoma bag. He feels that if we are all in agreeance of this operation that it will happen before Summer of this year.

We did get to have a bit of fun on Wednesday as Woolworths were launching their new fundraising campaign for the hospital so they were having a teddy bear's picnic on the front lawn. We managed to catch up with many of Jordan's friends at this. We caught up with our friends Darren and Chrissy and their kids. Sarah (2 1/2) has cancer and is on the last of her chemo treatment. Our love and prayers are with them as they move through this tough time to see if all their hard work over the last 6 months will beat this nasty cancer. Christian (3) whom we met last year in hospital recently had his kidney transplant and is doing fantastic.

Brandon (4) Jordan's best mate wasn't able to come down from the ward but he still managed to catch up with him. Brandon had his liver transplant about a month ago and is having a couple of hiccups. Our love and prayers are with him and his mum Sarah as they follow their journey.

So as you can tell we have had a number of ups and downs this week. A very tiring week for us all.

Adrian has been wonderful - he has been having to leave work early to pick up Harrison and be Mr Mum a bit this week. He allowed me to rest a lot today. It is hard - it isn't physical work I am doing but mentally you get knocked about a bit. It helps when you have a very supportive family. My mother has also been a godsend to us this year. Our house moves much more freely thanks to her.

Although there is no clear results as to why I am not producing enough White blood cells my specialist (after seeing him for about 18 months) is quite happy for me to just continue as I do. If I get any bad infections my GP is to send my blood results to the specialist and he will monitor me that way. He feels that even though my results are lower than they should be they are still not in the CRITICAL stage of needing further treatment or tests. It is a real wait and see game. Story of the life of the Bate's but one I am beginning to learn to live with.

Harrison is great too - our forever Holden man. It is so hard on him having to see us leave each day for our hospital visits and I feel so bad I can't spend the time with him as I do with Jordan. He and I spend a lot of cuddle and love time as much as we can. He cares so much about us all. He drew Brandon a picture and insisted that he be taken up to see him so it can be put on his wall to look at. We had a friend of ours over from New Zealand last night and on the drive back to town he was amazed at the memory Harrison has and the knowledge of the make of cars. He even proves his father wrong on the types of cars as we approach them. I think in 20 years I will be saving lots of money on mechanical work lol.

Well that is the Bate update for this first week of August.

I will write again in a week or two with more from us.

All our love to you all and thank you for visiting Jordan's site and caring about us.

"The Bate's".

Sunday, July 17, 2005 6:22 AM CDT

Well as I write this Jordan is sleeping kinda peacefully upstairs.

What a week we have had. The occasional stomach cramps that he has been having have been regular daily episodes. Which in turn had us present him at emergency three times in four days. Why not everyday? Cause Tuesday 4am, Wednesday 5pm (after being sent home both times with no answers and a happy child) by Thursday 11pm I was over it. I just gave him panadol and he slept beside me.

So when it happened again just after his feed at school the girls in the office rang me VERY concerned as his breathing was very erratic also (as it has been with these pains). Thankfully Adrian was on leave this week so he took Jordan straight up to emergency about 2pm Friday. By 9.30pm Friday night Jordan and I had checked into Hotel Herston (yep Children's Hospital) for what was to be 2 days of clear tests, pain and fevers.

So why is he having these pains? First they thought it was the adhesions from last years surgery that was making his bowel stick (no test to conclusively prove this other than go back in which in turn will give him new adhesions (scar tissue)), then there was the thought it was gallstones - an ultrasound and blood test proved clear, then the thought of possible bowel being twisted - the test for this was being considered (dye put through his peg to check out the intestines), Urine tests taken - clear, more blood cultures - clear, stool samples - clear, chest xray - clear, snot sample - clear..... so all these tests and still no answers. The nurses thankfully could see the way he was breathing and were able to journal it but surprise surprise he did not really have another of the "Episodes" whilst being hospitalised.

Saturday he was pretty out of it and you could see he wasn't well - he spiked some high fevers and more blood cultures were taken but again - clear. This morning the fever broke and when his doctor came to see him he looked good. She asked if we wanted to come home as long as we go to liver clinic on Tuesday for a follow up. We chose this option. The pain seems to have subsided now. The only conclusion at this stage is that he may simply have been constipated. Hard to imagine as he is still doing his normal motions but apparently not uncommon. You can still be regular but also backed up.

We have now introduced metamucal into his daily routine to see if this will help him. Time will tell I guess.

So that is the events of the last week. So what next? This week clinic and the occupational Therapist. She is going to work with Jordan to get him over his fear of the oxygen mask and the anesthetic mask. Since his surgeries of last year he is petrified of them. I have no issue with him being put under by the needle and neither does he but if he ever needs oxygen we will have a terrible time. She is going to work with him weekly in the hope that by the endoscopy next month he will be able to deal with the oxygen mask when he comes out of the operation.

Next week we have the Surgeon appointment (for the biliary diversion), the Ear nose and throat specialist for the persistant cough, the occupational therapist and the dermatologist for his dry skin. Thankfully the hospital were kind and arranged all these appointments for the one day. It will be tiring but we should have some answers by the end of that day - so hopefully a rewarding day too.

The rest of the household have missed us the last few days. Adrian and Harrison have been little troopers doing bits around the house. The new flooring is now complete and the house looks beautiful. I will have to take some photos and post them when I can on the site.

Harrison has been helping his father heaps. He was so lovely - he just adores Jordan and brought all these special little toys up to the hospital for him to play with. Their little friend Brandon is in the hospital after his liver transplant and he drew him a lovely picture of the hospital with Brandon in his bed in ICU with us all around his bed. Harrison is the most beautiful natured child.

Well that is it from here - I'll finish boasting about my adorable children. I will write again next week after our appointments.

Love and hugs to you all.............. Leisa.

Saturday, July 2, 2005 0:07 AM CDT

Welcome to the middle of the year everyone - hasn't it flown!

This week we re-visited Jordan's specialists at liver clinic. Not much new to report from last month - he is still extremely itchy of a night time and having a terrible time sleeping. He is still having the occasional stomach pain. The cough he has had is still hanging with us but the positive this month is he has put on a kilo in weight - which for Jordan is excellent.

After speaking with his doctor we have decided to do the following over the next couple of months and then go from there. For his dry skin he will be seeing a dermatologist, for the cough he is seeing the ear nose and throat doctor as the cough has been persistent since February now, he is having his yearly liver ultrasound to check it all out, he will also be having his yearly endoscopy next month to see if all is okay down there.

We are being referred to the surgeons to discuss the External Biliary Diversion. At this stage of AGS he typically should be losing the persistent chronic itch but for us the first four years were a breeze to what he now experiences. There is two cures for this if we don't wish him to fall behind due to the lack of sleep and that is the external biliary diversion (which we are currently discussing) or transplant. We are hoping the surgeon is willing to try the diversion and see how we go. Of course there are no guarantees with everything but hopefully if all goes ahead it WILL work for him and we can all sleep more peacefully and achieve our full potentials.

So clinically that is where we are at at present. As a family we have had a topsy turvy month but as of this weekend we have all finished our face lifts lol - for the past month we have been having the interior of the upstairs of our house painted. It is so lovely to walk into a newly painted house. No more awful marks on the walls. It was interesting we stripped wallpaper in our hallway off ready for the painter only to find the most gorgeous (yes sarcasim plays a big part here) 70's style wallpaper. We had to live with it for a week. Jordan would welcome people to our house and say "Welcome to our Jungle" lol.

Over the next month we are replacing the flooring - new carpet and new vinyl. It will be so lovely when all complete.

So for now we are still living with the house kinda pulled apart but it will be extremely worth it in a month or so.

The boys have been on school holidays over the last two weeks and return to school this week. We have all had the dreaded lurgy (touch wood apart from Adrian). Poor nan wasn't too well either and one day there we sent her home to rest. She has ended up with no voice but hopefully after visiting the doctor on Friday we will be hearing her arrive on Monday lol.

Well not much else to report from here in Brisbane. I will write again in a month or so and keep you posted.

Happy half year everyone.... till next month............

Sunday, May 29, 2005 7:11 AM CDT

Well here we are again. The boys have celebrated their 6th birthday. Unfortunately at present my camera has decided to play silly games so I can't share the pictures from their party but just as soon as I work it all out I promise they WILL be displayed.

It has been a fun week - the boys had a clown here for their party on Sunday. It was one of the cruisiest parties I have ever held hire the entertainer is so easy. We parents got to sit and enjoy subs and a cheese platter in style.

The boys had cake at school on Tuesday for their birthday and the week finished with under 8's celebrations at school.

Tuesday saw Jordan walking around the hospital (it was his appointment day) like a royal king. The girls in bloods remembered it was his birthday and came running out to wish him a happy birthday. The Liver Transplant team gave him a lovely card and badge for his birthday. He ran into his favourite clown doctors which certainly made his day.

Thankfully this time we saw one of the other specialists and I walked out feeling much happier than our previous visit. Jordan will probably be seeing a dermatologist for his dry skin as this can be contributing to his itchiness but is by no means the sole reason for how itchy he is these days. His doctor is also questioning him having another endoscopy to check his throat as he may have an underlying problem in that region. Jordan's veins are quite prominent at present and this can be a sign that his liver is scarring more than previously. So sometime in the next few months we will most likely be having an ultrasound to see what is happening. There is also question too of Jordan travelling the line of having a Biliary Diversion done to help with his itch. The doctor's are going to keep an eye on how itchy he stays this winter (as winter is a time their itch should normally subside). If the itch remains as it is at present they will then most likely perform this procedure. There are two types of this procedure - Internal and External. His little mate Brandon has had the internal done and it wasn't successful. External is far more successful and would most likely be the doctor's recommendations for Jordan. Basically the external diversion will have Jordan wearing a bag similar to a colostomy bag that will collect the bile and help the liver out. So time will tell what path God will have us travelling.

Friday week ago Jordan also visited the Cardiologist in regards to the heart side of his condition. Although Jordan still has a unique heart murmur he couldn't find anything that alarmed him. Most children with Alagille's like Jordan their heart things like this that are quite mild tend to start fixing themselves up by this age. Jordan's isn't the case but again he still isn't too worried so we don't need to resee him until Jordan's 8th birthday or unless he is showing signs of heart problems. So thankfully something is still on our side!

Anyway have bored you enough already. Will write again in a couple of weeks.

Take care and god bless.................. Us!

Tuesday, May 3, 2005 7:09 AM CDT

Well today was finally THE day we were going to find out if Jordan's Bone Density results would allow him to venture into Gymnastics. After no results and a fax later we found out that although his bones are certainly not in the normal range they have stayed the same as a year ago and with no breakages it was decided he would be allowed to try. If we have a breakage then we will stop and he won't be travelling that road again. So a bit hit and miss but guess you can't wrap him in cotton wool forever.

He was very good today - today was the first day he didn't cry at all or laugh (yes laugh) whilst he had a blood test. The girls in blood just love him to pieces. He goes in sits on the chair (because he is a BIG boy now) has a couple of tears in anticipation of the needle and then laughs at them whilst wiping away tears until the draw is done. Today I was waiting for it especially as the girl hadn't got it in the vein completely and had to move it a little and then nothing - he was just so proud of himself at the end.

As I suspected his biliruben level has increased. Over the last few weeks he has started to look a little more yellow than he normally does. He also has had a persistent dry cough for almost 3 months now. He is having stomach pains as well and falling asleep at school. He is tired throughout the day and not sleeping too well at night. All in all there is a lot of little things that are happening which don't seem to add up. His doctor today wasn't so forthcoming with anything and basically told us to see him in a month. His bloods were elevated to his "normal" range. I did manage to talk to the head of the department as I was leaving and felt a little more comforted but guess time will tell if a mother's gut instinct is correct or not.

So not all that much more to report on Jordan. He is on antibiotics for the dry cough nasally thing he has so hopefully they start working for him.

The rest of us are travelling fine - finally I am returning to normal since being ill. Adrian is working hard as always and Harrison is enjoying school and helping around the house.

The boys are VERY excited about their birthday this month. We are hiring a clown for their birthday party. They were each allowed to invite 6 friends from their class at school. With both of them being in separate classes it was hard for them to decide exactly which 6 each so it kinda blew out to about 8 each. This party will be bigger than Ben Hur!

So May sees us gearing up for THE big 6th Birthday Party. 6 years have flown by so quickly since they were tiny babes in the special care nurseries. I decided seeing as I was going to reminisce that you guys could reminisce with me. As you will see in the piccies these are my beautiful babies.

Enjoy and catch you all soon.... take care..........

Saturday, April 16, 2005 8:13 AM CDT

Well this year has seen Jordan experiencing many things. His first year at school, continuing his swimming lessons and the loss of his first teeth, of which is the first thing he has accomplished before his somewhat younger yet boisterous twin brother who in infancy managed to have all the firsts before Jordan as he was ill and didn't achieve things as most babies do till later in his toddlerhood.

Jordan still is cheeky as always and our family clown, forever making you laugh.

Jordan's health has been good the last 6 months or so. His liver levels tend to go up and down but they still seem pretty good. He is having another bone scan in the next few weeks a) to see if they have improved, stayed the same or worsened b) (of which he is hoping for) if the situation has improved he will be allowed to start Gymnastics with Harrison.

Jordan is due to see his heart specialist in the next month. He will have a usual ECG and ultrasound to check all is going well with his mild pulmonary stenosis.

His weight is staying around the same and he is still continuing his feeds. His gastronomy button was changed this week and he was quite happy to hear that he did not need to be put under to allow this to happen.

Well that is about all from us for now. Thank you so much for visiting Jordan's Page and reading his inaugral journal. Please leave us a message in the guestbook and be sure to wander back every now and again to see some of his latest pictures and read up on how he is going. All our love and prayers to you all.........

Tuesday, April 12, 2005 6:28 AM CDT

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