The Adventures of Rocky in OZ

We are still here.....

2011-04-19T02:31:00.000-07:00

Hi everyone, Hope you are fantastic! And yes, we are still here after a massive year. Sorry we haven't been online. I am not even sure anyone is still reading, but thought I'd get an update out there anyhow.

It's been a huge year. Rocky is now in Kindy and loving it. His health is great. He mainly spends time singing, dancing, drawing and 'youtubing' his favourite artists. He also tries to be Justin Bieber on occasion, dressing up and recording his own versions of 'Baby', "never say never' and "U Smile" on the iPhone, and has a particular eye for the ladies (Katy Perry, K$sha (gasp - I know! and the somewhat more socially acceptable, Taylor Swift.. I truly believe I am not at all biased when I say he can hold a tune rather impressively. He also makes up his own moves which is great (and funny).
Quite simply, he is just doing AWESOME. His best mate is Paige at school, his speech is coming along beautifully, so beautifully its sometimes a pleasure to see him go to sleep at night....You know what I mean ; ) ....and he has recently taken to telling me he loves me 'sooooooooo much' (without coercian!) which is just the most precious of moments. All you mum's out there are swooning right now, remember when your boys were in love with you? I am enjoying while it lasts. He also tells me off at the shops, how I'm 'naughty' when I don't come when he calls etc so it's not all rose coloured glasses. It's a challenge. It's delightful, it's just wonderful seeing Rocky enjoy his life so fully after everything he's been through. His rocky road is a distant memory now though, as we move into a much brighter part of life, leaving that well behind us.
For those reading, Happy Easter to you. Be safe and enjoy your families - they are so precious! ox

All The Single Ladies.....

2010-12-18T19:45:00.000-08:00

2010-06-30T16:22:00.000-07:00

Life has been very busy here since we arrived, although things are settling down a bit now. At the moment, we are enjoying school holidays! Rocky is loving kindy, we have all our hospital stuff organised and it's going along well. Being at kindy, Rocky has inevitably got every cold going around. I guess that's kids, but the nice thing for us (can't believe I'm saying a cold is nice!) is to see him recover well.

I know most of you have already experienced this, but now that Rocky is mixing with other children, we are getting some really assertive statements. I really do think prior to going to school, Rocky did not believe he could say no. Now he is making up for lost time. He has a real growl in his "NO". I hate to ask the obvious, but do I really sound like that?? LOL!! With statements like.... "Go away" ....and at the shops "I think I'll take this one home, Mum", "I can do it"...and when he doesn't want to "Mum's turn"....and my favourite order...."Hop out of the way". I have added some benign guidance like, "How about saying please?" Ahhhhh, I see my real work is beginning!! And I thought I had it tough before...Actually, to be honest we couldn't be prouder of our little man who is just embracing life so well, cheek and all : )

SpoonMan.....

2010-05-17T04:02:00.000-07:00

2010-05-16T18:40:00.000-07:00

Wow - what a month! It's been huge. We are starting to settle...it's been a challenge getting stuff up and running but we are getting there. Rocky is happily in kindy one morning a week, playgroup another day... and in between we are trying to fit Dr's appts etc.
I am pretty impressed (but also horrified) that Rocky has started giving me directions home from the back seat of the car. "This way Mum, then, turn here, this way" I am wondering what is coming next (maybe tell me I missed a spot
when I'm vaccuming?? LOL) Rocky continues to grow and grow and surprise us...like all kids I guess. And it's so much fun. He loves to call Brett & I by our first names, and although we tell him 'Mum and Dad to you!' ..we crack up. He thinks everyone's last name is Hohn.
The weather here at the moment is fantastic. Still warm enough to wear shorts and go for a walk to the supermarket or any of the shops so close by. Rocky has well and truly squared up the local Donut King and is really settling in well. Brett is loving his job and the place is awesome!
It was great to spend Mother's Day with our mother's and grandmothers this year. Very special.
We miss our dogs terribly but try to see them once a week or so....on Sunday we took them to the Million Paws Walk at Mount Tamborine which was fantastic. There must have been 400 dogs there. Iggy and Mia were in heaven!
Well, must run as (would you believe) there is still some more unpacking to do. And I have decided it needs doing this week !! Maybe Master Rocky in all his wisdom can miraculously find more space for me to put all our stuff in...I won't ask him, he probably would - clever little thing!
Have a great week!! : )
ps. To our dear friends in Melbourne, we miss you all so much!!

Feeling Hot! Hot! Hot!

2010-03-29T22:10:00.000-07:00

Rocky is already getting in the mood for sunny Queensland! Check out this video.... Not too sure he'll be happy with me for posting this very cute video with only his undies and a singlet on...still, it's not really that different from what we'll be wearing on the beach, surely?!

Rocky is doing great! I always thought he was never allowed to be immunised, but apparently he can receive 'dead' vaccines but never live ones. That means he had the joy of 4 catch up immunisations last week - he wasn't that happy with that! - however, and this may seem odd, I was so happy he was getting them! Rocky can be immunised against at least some things. I hope it means if he comes across it in his life he won't get as sick.

The move is all happening, and we will be at Surfers in the next week or so.

Happy Happy Easter to you all!

xoxoxoxo

Moving on up....to Queensland

2010-03-10T19:07:00.001-08:00

Hi everyone, WHAT A MONTH! phew....Feb was huge but namely because of 2 incidents.....Brett got a new job and we are moving to the Gold Coast at the end of the month. Rocky also spent a week in hospital with an infection....it was a harrowing week especially as there were initial conclusions that Rocky may have Type 1 Diabetes (now found not to be correct). However, it took about another 5 years off my life....and that was the week of my birthday so I spent it in hospital. In fact I had a great day as Rocky was feeling alot better - you can't ask for more than that!! For the first time Rocky was able to use his words and say to me on my birthday "Happy Birthday, Mum". It brought tears to my eyes.

Rocky is doing so well and growing up so fast. He talks at the rate of knots (more and more of it understandable), wakes up singing most days..I feel like his speech is improving alot. Since going to kindy, I think he has realised he can say "no" when he doesn't want to do something, and so of course, it has proven to be one of his favourite words! That, and since my sister's baby was born, he has taken alot of interest in babies. In the aisle the other day at the shops he was saying to another (very young) child at the top of his lungs "Hello Baby". In the most innocent way of course. LOL

We are excited about moving closer to both of our families, it will be great all round I think! Am a little bit apprehensive about moving hospitals, but I'm sure it will be absolutely fine. The services Rocky access' here have been so incredibly helpful in finding us new services in Qld, kindgergarten ...the lot. Such fantastic support!

The next time we blog could very well be when we have moved. For those reading, hope you are having a great start to the year, stay safe and well.
xoxox

Let's all B Cell - erbrating!!

2010-01-29T02:09:00.000-08:00

Heard late this afternoon that Rocky's B Cells are making very good responses to the vaccines and so no more IVIg! WOW!
WOW
WOW
WOW
WOW
WOW !!

Have a good weekend : )

More Xmas Pics Pt II

2010-01-27T17:04:00.000-08:00

More Xmas Pics!

2010-01-27T16:52:00.000-08:00

Onwards and Upwards

2010-01-27T15:47:00.001-08:00

Happy New Year!

Christmas with our family for the first time since Rocky was born was very special and wonderful! By a stroke of fantastic good luck, we also got to catch up with our very dear friends from Sydney, Slade, Lolly & Lola, who happened to be on the Coast for just a few days!

We had a great beach holiday for a few weeks before the shine was taken off just a smidge by a stint in hospital with Rocky - oh dear! - he is alright now though. One of our friends joked "Are you trying to check out every emergency room in the country" and although it is not our intention, it certainly feels that way sometimes. Life is really keeping us on our toes. But all is well that ends well. And it ended well. We got to spend a couple of extra days with our family too.

A trip to Beaudesert to see some family and an opportunity to visit some of Rocky's big supporters (The wonderful people @ Dream Centre @ Carrara) made our trip extra special too.

And so we roll into 2010.

Rocky starts 3 yo kinder next week. What a milestone!
His T Cell count is up and so he has come off the antibiotics permanently. Another milestone!
We got a babysitter and Brett and I went to the movies sans child. Another milestone!!

We are so excited for Rocky as he moves into another phase of his life. It still gives us so much pleasure to see him doing regular, everyday little kid things.

We are due to hear back this week about his B Cell function - if all normal no more IVIg. We are hoping the results are good.

Instead of promising to update the blog more in 2010 (which clearly didn't work for me in 2009) I am just going to promise to be in the moment this year, and enjoy each piece of our lives as it unfolds. Hope you do too and have a great year!

xox

Back To Reality...

2009-11-10T17:49:00.000-08:00

yes, it had to happen! One cannot, unfortunately, be on holiday permanently.

We are back safely (thank you God!) and soundly. We had an absolute BALL on our holiday, Rocky stayed well, had plenty of laughs and fun with Aunty PC and Uncle Pete and familyin beautiful Canada (the best part of the trip!) , Brett and I loved NYC and Hollywood on the way home was a real hoot!

We've been so busy since we arrived back, just routine hospital appts and Rocky has started a couple of classes ...a music class and some sport. We still have to be careful and Dr Markert said we can do the full on day care thing once his B Cell testing is complete (we hope by Jan). Rocky hasn't had an antibody transfusion (IVIg) since September. All part of the plan. He seems to be doing okay. It's so cool now - although we proceed with caution! - to let him out to play at the hospital and paint and draw with the other kids waiting in outpatients. It may not sound that exciting, but I still get a buzz just to watch him do that. Yesterday he was sitting, painting with some girls and he wanted them desperately to pay attention to his drawing, he kept making lots of noise to get them to do so, but they were playing hard to get LOL...but it didn't deter him. I like his spirit. I once read persistence counts for about 99% of success...if that is the case I think he will be very successful.

The weather here is hot and so we have also had a trip to the beach, the backyard pool, but unpacking my suitcase still hasn't received any kind of priority, except for clothes to be put out on the bed during the day, only to be put back in the suitcase at night with a promise "I'll do it tomorrow". It's good to be ambitious.

Hope this finds you fantastic! xoxox

Canada...

2009-10-19T08:23:00.000-07:00

It's warming up here (10 degrees!) yahoo...feels alot warmer than 10 degrees at home, which sounds weird, but it just is. I've said this to Priscilla and she totally understands what I mean..everyone else may think I'm mad. We are twins after all.

We stayed in Toronto over the weekend and Brett had his birthday too...we had a celebratory lunch with the Zilio family as there are a whole host of wedding anniversaries and birthdays we are celebrating this month. What a lovely weekend!

Next pics...NYC oh yeah.....

Rocky is great and we discovered Hi-5 here on telly, however....the programming is dodgy and so we are yet to see it! He had added to his reportoire of songs and now sings some Barney toons...

North America

2009-10-15T17:38:00.000-07:00

Hi everyone, Well, what a tour de force so far! We've seen Disneyland in LA, over to NC to see Dr Markert, which was truly wonderful, and now we are in Canada, where we have already experienced Thanksgiving, African Lion safari, had the joy of meeting the Zilio family, then a trip to Niagra Falls yesterday and off to Toronto tomorrow.

Brett and I will head off to NYC next week for a few days sans Rocky. That's gonna be hard! Time to break the cord....just a little bit! (maybe just stretch it!)

We have been really thrilled with the way Rocky has travelled, he has been an absolute gem. The jetlag got us all a bit by the time we arrived in NC, but now we are all doing really well and back into the swing of things. Rocky has pretty much been singing the whole trip, which is hilarious, except for when he is still singing at midnight. Oi....we are not getting any younger and need our beauty sleep!!

It is absolutely wonderful to be here. Canada is experiencing a colder than usual October, the upside being we are seeing the beauty of Fall.

Hope you are all doing well...post soon xoxoxoxoxoxo

North America Pt 1

2009-10-15T17:34:00.001-07:00

North America Pt 2

2009-10-15T17:23:00.000-07:00

Rocky....the new P!nk??

2009-09-30T17:59:00.000-07:00

Spring is here!

2009-09-17T23:20:00.000-07:00

Hi everyone, long time between blogs...what can I say...when you are busy out there living...who has time to update a blog?? LOL yes, the man is getting out more and more and we are loving it. A swim at the beach, a trip into the city on the train, drop over to Gabe and Mooshy's for a play session, why, is there time for anything else?

Rocky has been great! Things are going really well. In fact, he has just squeezed his way into the computer chair with me ( a one person chair - ouch!) and is getting quite crafty, devious and clever. It's an absolute joy.

Okay, the medical update is....hopefully he's had his last IVIg this month. RCH are leaving it for a few months with plans to immunise again and see how those B Cells work. Fingers crossed they do and that's it I think. If they don't respond very well, I believe it's another year of treatment. More teeth are coming!! We nearly cried. What a relief, please, let them keep coming. Our baby has had enough and no more painful procedures please.

3 years old is a wonderful age. Although Rocky is making many more sounds and noise, he is still not talking. But he is signing sentences like a champion and really getting into it all. He is really trying to talk and it's very cute. C'mon Rocky. All of our friends have heard this story (sorry, I'm about to tell it again!) of how our little man came home from the shops and got out his blocks and spelt ' BigW (a chain store here in Australia). We laughed so much! Sure, some kids say Mum/Dad, not ours. The first was LOVE, then PINK (we listen to her all the time!) The next one was 'Coles' the grocery store. The first time he spelled it 'Cols'. I told him it had an 'e'. He would not believe me or let me put in the 'e'. But he did go and check the docket and then came back and put the 'e' in. How cheeky! Already, he doubts that I know everything about the world (I thought that came later?!?!) Ahh...it's been too shortlived!.

Honestly, it is absolutely the most wonderful thing to go out as a family. We just sit there having a coffee, watching our man run around, taking in the world, and it feels beautiful. It feels so right.

Hope this finds you all wonderful! Next update will be after our trip overseas. We are heading back to NC just briefly to see Dr Markert, then off to Canada to see Peter and Priscilla (can't wait!) and hopefully somewhere in there we'll chuck in Disneyland and New York. Life is beautiful! xoxoxoxoxoxoxo

And again...Pt 4

2009-08-02T05:01:00.000-07:00

Travel....you get the picture...Pt 3

2009-08-02T04:52:00.000-07:00

and another one.....

Travel all over the countryside...Part 2

2009-08-02T04:48:00.001-07:00

Yes, this birthday celebration is so big, it needed another post....

Travel all over the country side....Birthday Bonanza goes interstate : )

2009-08-02T04:36:00.001-07:00

What a week! Our first trip home to Qld since the man was first diagnosed. The weather - TO DIE FOR!! 22-26 degrees pretty much every day. It was so nice to walk outside without feeling cold. We soaked it up!!

Rocky got to visit Nana & Poppa Hohn in their new house, visit Grandma and Pop Crawford in Beaudesert for the very first time (to Beaudesert that is!) and what a wonderful week spending time with our families, Shelly, Corteney, Brent, Michael, Melissa, Kylie, Priscilla..our Mums & Dads, Nanny Arthy, Pop Arthy, Rosie, Suz & Non, Libby & Don - thanks for making it such a wonderful trip! ....the pictures say it all. So do the 3 hour daily sleeps Rocky needs to recover from being such a social beast all week! For those wondering, yes I am indeed enjoying the afternoon nap too.... ; )

Happy 3rd Birthday Rocky!!

2009-07-18T23:17:00.000-07:00

What a month! Rocky turns 3 on Monday 20th and we have had enormous joy so far helping him celebrate! How wonderful that his Aunty Priscilla is here from Canada to help us celebrate (although, sadly, not his beloved Uncle Petey - but we will make up for it in October!) and we also head home to Queensland next week to celebrate with everyone there. Can't wait. It's also my Dad's 60th on the 21st, which will be very special.

News, news, news! Where do I start? Today Rocky had his first ever birthday party with some of our dear friends. It was lots of fun and quite emotional for Brett and I! It seems incredible sometimes, just how far we've come. But we are so 'there!' And how lucky to have such wonderful friends and family to celebrate with!

Last week Rocky was tested to see if he was making his own B Cells (antibodies - which is what IVIg basically is) He is! Can you believe that?? He is making his own - This is just SO fantastic. To cut a long story short, and I'm not even sure I understand the whole process, B Cells need T Cells to either produce or work properly. So now he has the T Cells, the B Cells are coming to the party. The next step is to see if they can work as well ie. Can they party hard?? LOL

We are waiting on confirmation from RCH on the plan forward, but please keep your fingers crossed that Rocky's B Cells are in nice working order! If this is the case, I think he comes off the IVIg. YAY!! Oh yeah, it's SO good to have some progress!

Other than that, Rocky has just been testing the boundaries, like every other cheeky 3 year old. And I, his mere mother, have tried not to laugh at the very many funny, but inappropriate cheeky acts (such as poking out his tongue at me). The one thing I know is I completely underestimate how much he has my number! Sometimes, I give him the benefit of the doubt, but he has it totally worked out!

With Lots of Love xoxoxoxo

A Visit From Grandma and Pop

2009-06-11T18:49:00.000-07:00

It's been a big few weeks with a long awaited visit from Grandma and Pop. We had a blast esp. Rocky who had playmates 24/7 and so much for a holiday for Mum Dad, I think they went home exhausted. They were in bed nearly every night before us and we were up before them!! Ha ha, yes, little boys wear you out. Unfortunately, during the course of the week I got sick and now Rocky has ended up with a little cold. It's kind of a double edged sword. The Dr's say although Rocky's T Cell count is only 25%, his function is normal, and so they think he'll be able to fight it off. We are keeping a very close eye on it and although it's worrying to see him have a cold, it will be exciting when (yes, I'm being optimistic!!) he eventually fights it off. All signs good so far with things not getting worse, no temps etc. Rocky has loved it as he been able to sleep with his Dad every night! If it wasn't for the cough, I'd say he's milking it a bit ; ) It's been very cold here, so we've stayed inside, not being very adventurous at all as we all want to get better.

Rocky still has stuff going on with his hearing, so he has finally been fitted with a bone conducting hearing aid and when you look at the pictures, you'll now know, it's not some funky new trend (altho he may end up being some kind of fashion muse), or some crazy mum deciding to put a headband on her son....it's his hearing aid tucked away in there. I have noticed people at the shops sort of looking, and I know they are thinking....I'm sure that's a boy, but he's wearing a headband. I suspect they are feeling the same fear of 'getting it wrong' as when someone asks you if your pregnant or not (and of course, you aren't!) ouch.... or maybe they aren't thinking anything at all, just looking at one very cute little boy...LOL

Grandma & Pop bought Rocky the microphone stand (he's had to use his hand before now, poor deprived child!) and I'm sure you'll agree, he's a natural!! I hope you enjoy the video as much as we did.

Just a quick note (if your reading!!) before we go to give a VERY HUGE CONGRATULATIONS to Brooks and Emily on the bith of their beautiful new daughter. We are all thrilled for you.

Keep smilin' everyone : )

With lots of love Amanda, Brett,Rocky xoxoxox

2009-05-14T18:21:00.000-07:00

Well, we have been very busy! The man has been on a tram, out to a fine dining restaurant (not recommended BTW LOL), playgrounds, shopping, the works!
Rocky is just soaking it all in and it's really joyful to watch him get into life. He is making alot more noise now as well, tho not talking yet, but often mouths the words to songs when he's dancing which looks very cute! He is picking up signs so well, and it's great to at least be able to communicate with him that way. I think it's a big relief for him too.
Now that he's out more, he's more adventurous at home. Rocky has always been a bit cautious when it comes to climbing etc, something that's served him well....but now....It seems like within 1 day, he learnt to climb up the stools at the breakfast bar, then up on the bench. Nothing is safe, I can't tell you! At the park, a walk that used to take us 10 minutes now takes about 30 because Rocky stops every couple of minutes to check out rocks, dirt, grass, trees. It's amazing, lots of fun and just really wonderful to see him being able to touch and feel things he couldn't before.

Everything else is just chugging along. Latest (May) T Cell tests still say 25% and we are waiting to hear back from RCH about what the 'ideal' range/expectancy is for Rocky considering his illness.

Hope you all have a great week!

A Brave New World

2009-04-30T23:08:00.000-07:00

Hi folks, Seems I should not make NY resolutions, but aren't they meant to be broken? LOL Yes, again, a while between updates. So much 'normal' stuff has been happening, which means we have been so busy just being out and about.
We've been checking out kindy's and enrolled Rocky for 3 yo kinder starting 2010. It's so exciting to be organising these things! I hope he isn't too overwhelmed but we are lucky enough in the meantime, to have been given some freedom by our Doctors, who say Rocky should be fine to get out a bit more in the world. And so we have had lots of play dates (even one at another house!), been shopping and eaten Spanish donuts at the local shopping centre, lots of me chasing him away from riding the escalators, watching him be in awe of people and thinking automatic doors are so much fun, it's wonderful to watch him be fascinated by the world. Last night we took him for his first ever grocery shop (uncovered) and he was pretty excited to be riding around in that trolley, but not nearly excited as when he spied the M&M's (then proceeded to grab as many as possible and throw them in the trolley). Hope ur having fun, whatever ur up to, Enjoy the pics!

Holidazzze...

2009-03-18T20:13:00.000-07:00

Well, what's been happening about the place? I already know I am not keeping my ny resolution of 'update blog more' but I will try to make up for it by jam packing this update with plenty of good news.
Okay, firstly we just heard back and Rocky's T Cells are up from Jan (19%) to Mar (25%) YAHOO....!
We also went on a holiday to the beach and pretty much everything about that was fantastic! It's not that busy with people so Rocky could get out and about a bit more and we had good weather too - doesn't get better than that! We could even venture out to a restaurant for dinner (no one else there) and Rocky pretty much spent the night running up and down the ramp they had there and weaving in between tables and chairs while Brett & I tensed every two seconds in fear of his head being cracked open. Rocky was occasionally stopping in for a bite to eat...now made easier by the fact he can eat whatever he wants. He seems to want to eat (hot) potato chips alot. LOL and who can blame him?
Rocky has been growing and although you may not be able to tell from the photos, he is definately taller and has lost some love handles around the midriff....I put some shorts on him the other day which fit only a couple of weeks ago and they are loose around the waist but getting shorter on the leg...all the cliches are just so true..they grow up too fast. What else? It's pretty cool watching Rocky spend Saturday night's watching Australia's funniest home videos, crash diving into the pillows on the floor in an effort to imitate all the stacks on TV. The more we laugh the more of a clown he becomes. Where does he get that from?? lol
Hope you are great and having a good week : )

The end is near......or should I say...the beginning of GREAT THINGS!

2009-02-15T13:49:00.000-08:00

Well, how VERY VERY exciting that I can report Rocky's latest tests show a good response to the tetanus immunization and so he is coming off the general antibiotic (used for general protection) he's been on since he was 8 weeks old. These latest results basically show he can mount a response to infection. This is terrific news. The plan, all things going well, is for him to finish his IVIG in October and then, a whole new world!!! He may even be able to get out a bit more prior to then, although we'll have to be really careful during winter still.
It seems surreal to be talking, I'm mean REALLY talking about the possibility of an existance where we will no longer worry about Rocky's survival and where he can enjoy everything life has to offer. For the first time since Rocky has been alive, we will be able to spend Christmas with our family in Queensland, take him to the beach and do all the other things that we have been dreaming of!! He will be allowed to have kisses from his Grandparents, Aunties, Uncles, cousins and friends! We are sooooooooooooooo excited for the man and sooooooooooooo excited for us too!! Brett and I are going to take Rocky shopping ALL DAY no matter how bored the man is (sorry Rocky)....we have missed that! We'll probably spend all our time in Toys'r'us anyhow, like we do now when we go shopping without him LOL.

Everything else is going really well. Rocky has also been able to come off his restricted diet which is a relief and a lot less work for Brett & I. This includes not having to sterilize drink containers and water. YAY! Plus, we all get to sit down and enjoy the same meal together at the table....Rocky had his first Roast Chicken the other day....with all the trimmings.......nice! Even ate roast garlic although I'm sure I saw him screw up his face at the one. Considering the eating hurdles in his life, he is embracing all sorts of foods with gusto which is just fabulous.

Aunty Melissa (my sister) visited last week which was wonderful! Each new visitor we get, Rocky takes less and less time to get used to them which is great. It's exciting to see him interact and learn from others. It's nice to sit back and watch him enjoying that contact. We had a great week together.

Gee, I could go on all day how good things are but I don't want to put the moz on it....so I'm going to sign off and say thank you to God for our many blessings, our dreams coming true & hope you all HAVE A GREAT DAY : ) xoxoxoxoxox Hope you are all well!

Playtime Pt II

2009-01-24T19:46:00.000-08:00

Well, it's been a fiesta of play dates and Rocky has been having a ball. I believe, sad but true, that his old mum is just a bit boring for him now ; )
January T Cell count was just 19%, so no real change from November (he is only getting tested bi-monthly now). To be honest it was disappointing but I'm not really sure what this means in terms of his recovery...if it's stalled or he's just having a slow couple of months. We are very disappointed but really, what can you do? Just hope the next test is much better. I'll seek a more detailed explanation from the Dr's at our next visit in a week or so.
Everything else is GREAT! It's pretty exciting to have Rocky playing with a couple of children at a time and remain well, no close calls, which is a really a big highlight (and relief) for us. We can't wait to do it more.
Last night was the first night in a bed (moving from the cot). You will notice from the sheets that we need new, single bed (and hopefully matching) sheets! LOL Rocky LOVES it so far and we thought he might get out and try to play with toys or get out of his room, but this morning he sat on his bed, enjoying the view from his window and didn't even come out when his Dad got up to get him. I kinda thought he'd come into our room at crack o' dawn and I'd open my eyes to see him standing next to our bed and then accidentally scare the pants off him when I screamed with surprise. Are you getting a sense of exaggerated drama from me? LOL i will stop now.
Those in Australia - enjoy your long weekend ! We love a day off here - bring it on!

It's............PLAYTIME!!

2009-01-12T03:19:00.000-08:00

It's been an absolute joy to watch Rocky have a few 'playdates'. He had moments of shyness at first, just kind of doing his own thing, but it has not taken long to move to show off mode. It's lots of fun. We are still being very careful but , touch wood, things have been and hopefully will continue to go well for the man. This week, his cousins Corteney and Brent are down from Queensland and it has been so much fun!
We hope to have the latest test results sometime this week. We are crossing our fingers they will be as good as the Nov results. Stay tuned....& Happy New Year!

Twas the Day B4 Christmas....

2008-12-23T18:07:00.000-08:00

and so in a mad rush I thought that I must update this blog! Phew....another year! (nearly) and what a fantastic one! Mostly ups with a few downs but Rocky has been so well.
Things are pretty stable here (hence the lack of updates!) that....and if I'm honest I haven't been so diligent about charging the camera batteries. So, what's the Man been up to???
Naive T Cell count testing will now be done bi-monthly, so no news for December but we will have some in January (let's hope he's going strong!). We are waiting on news from the last Tetanus shot - and how well his T Cell's responded. I spoke with the Immunopathologist a while ago and everything is great! When Rocky's T Cell's were tested for function, they showed a normal response. His amount of T Cell's may never be as high as a regular child, but the function is perfectly normal. So exciting!!!
So we've been slowly but surely getting out and about, braving the backyard (kids) pool, decorating Christmas trees and chasing our dogs (who escaped a couple of weeks ago and returned about 48 hours later - we were so relieved we didn't even punish them!) They slept for two days and it took them about a week to return to their normal, naughty selves.
If everything goes well (but we have both feet firmly on the ground just in case!) Rocky only has 3 more IVIG's and then he will be effectively ready for the world. It seems so surreal that we are even talking this way!!! How far he's come and we are so excited for him.
I'm not sure what else we've been up to, but we've been busy (this memory loss does happen as you get older LOL).

Wishing everyone reading a VERY Merry Christmas! We hope you had a great year. For those who kept the Man in their prayers, God Bless you and thank you so much.
With Lots of Love Brett & Amanda xoxox
ps. NY resolution - update blog more ; )

You Can Never Start Too Young....

2008-11-24T21:12:00.001-08:00

Some people say child labour is an outrage....I say you can never start 'em too young! Just kidding of course.....! At this stage, Rocky actually wants to help me with the washing, vaccuming, hosing the lawn, pretty much anything I'm doing he wants to do too....it's great fun! I am cherishing it as I know it does not last!

Today we took a trip to the park and were lucky enough to find a play gym with not a child in sight....and so we had a bit of fun in the sun : ) Enjoy

18% and counting....WOO HOO!

2008-11-20T19:50:00.002-08:00

What a month! Rocky has been a busy boy. After spending some of it in hospital, it kind of erased our memories to check for the latest T Cell count. But he's been growin' em alright!

Sept 30 test it was 13.3% then has increased alot to 18% for the November test. This is so exciting!!! Every now and then we wonder if Rocky will really be ready to hit the world at 2 yrs post transplant next March, there are no guarantees, but news like this really lifts our hopes!

Dr Markert said she was particularly happy that the 'bad' T Cells had dropped significantly in numbers in the last few months. She said she'll feel alot better when his T Cells respond better to the tetanus immunisation. Rocky had his 2nd tetanus injection last week and now we are just waiting for a few weeks before they test his response again.

In the meantime, I literally feel him getting heavier every time I pick him up, even pushing him in the pram he feels heavier. He's growing nicely up into the 80+ cm's and just eats non stop. He needs a lot of sustainence because he also dances non stop to Hi-5, it's very cute watching him try to keep up with all the actions (I tried doing it today and I couldn't either LOL what a sight!!)Rocky thought it was great, laughing too. I have not discounted the possiblity he was actually laughing AT me. And although he is not talking yet, he is singing along , making heaps of noise in his own way, to all the songs.

He's signing for help now which makes things alot better when he can't do something and wants us to give him a hand....and so much less frustrating for him. Other than that he really is enjoying a bit of cooking, moving chairs up to the stove to help me at every opportunity. Today he was cooking a mixing bowl full of pegs. Mmmm...tasty.

Every time we get good results I am reminded of the miracle that has happened to our baby. Have a great weekend. xo

You're Home, You're Safe, You're Alive!!

2008-11-02T19:49:00.001-08:00

Gladly, we returned home on Sunday and the fever is gone. We still don't know what caused it but are grateful that whatever it was, has passed. YIPPEE!
Thxs for all your prayers we know they help our little man. xox

UH O....

2008-10-31T04:30:00.000-07:00

On Wednesday night Rocky woke with a fever of 39.8. We headed into our usual (yes, some of the staff even recognise us now!) isolation room at RCH Emergency and Rocky was subsequently admitted to the hospital with IV antibiotic treatment : ( He has caught something, but RCH still do not know what.
So far, the blood cultures have remained negative for a bacterial infection. If it's a virus, there is not really much that can be done in the way of treatment.
Fortunately, his fever last spiked on late Thursday and has been in the normal range since. Hopefully this means that either the antibiotics have killed it off, or what he has of those little T Cells are fighting as best they can against a virus. We just don't know and because he is tested for the 'main' types of bacteria etc, we might not ever know what caused this.
If he remains fever free they will cease the antibiotics on Saturday and see how he goes. The plan is to come home Sunday all being well. I think it's fair to say he'll be okay, but we'll just see what happens following the cessation of the antibiotics. Our dear friends and family, Please keep him in your prayers if you can - thank you so much !! xox

12% and counting...

2008-10-28T22:54:00.000-07:00

Hi folks, I have been accused of being a bit slack on this blog...sorry! But the progress on the cells is still slow, albeit moving in the right direction, which we are grateful for. We are so lucky that Rocky's health has remained well.

September came back in the same fashion (overall increase % points 1.5%) to 12%.
We were disappointed to be told the test immunisation failed ie. His cells did not produce a reaction then multiply to fight it off. After my initial panic attack and some questions later to our doctors, we were relieved to discover that this doesn't mean Rocky's cells aren't working. It can take up to about 4 immunisations before the body produces an adequate response. PHEW! Another disaster averted! In my mind anyhow....I love this quote, so apt to this situation and for me, oh, so often...
" I have lived through some terrible things in my life, some of which have actually happened" Mark Twain LOL!! I always think of this when I feel tempted to run away with my thoughts...

Everything else is great with our baby seemingly overnight such a little boy. He is learning lots of signs and has been practising the EAT one non-stop. My fav has to be Rocky signing for something to eat, me producing a nice healthy snack, only to have him hand it back to me and proceed to ask for...you guessed it....more to eat. I guess that's his way of saying, don't think so Mum, I'll have the Smarties if you don't mind...

2008-10-13T04:55:00.000-07:00

Well....not much to report. Last lot of bloods taken in September, we are still waiting for results. Fingers crossed they are good...let's hope for 15%! I am feeling optimistic. There is something so great about 2 year olds. Rocky provides daily entertainment with mimicking and 'the smile'. We are working to make the 'smile' more fiendly....I mean friendly LOL!! I do not think it could be more fiendly...check it out!

It works much better when I actually don't ask him to smile....look at this little angel

2008-09-26T20:49:00.000-07:00

Well, life is cruising along pretty well here. It's spring in Australia and so we are enjoying the sunshine being able to get outside a bit more. It means lots of walks to the park with two dogs and one child that can't stand being in the pram - ....imagine them all in all directions and me trying to maintain some order. NO chance. People often say to me...Gee, you've got your hands full there....and I smile and think...you think so? Love to chat but gotta catch 2 dogs and a toddler....

Rocky scored the Wiggles showbag from his very cool friend, Mohamed, and is in heaven. Have you ever seen a happier kid?)

He could be a little artist in the making, he's so mad for drawing, which is great. Watching him be amused by things is probably the highlight of recent times. That, and watching him put his hand on his little chin while contemplating where something is. It's so grown up...and I guess he is doing just that!

2008-09-18T05:14:00.001-07:00

This month Rocky received his first 'test' immunisation to see how his T Cells function. We won't get results til next month. Everything else is stable and/or on the improve and so life is pretty darn good really! It looks like that rash is most likely just eczema after all - it's clearing up with some new treatment.
Brett and I are thinking of ways to black out Rocky's windows as Spring arrives here in Australia. So far we've been woken at about 6am every morning as the sun comes up....OUCH...

We're in Heaven....10.67

2008-09-01T00:29:00.001-07:00

That's right folks, we've hit double digits! Rocky's August test came back with 10.67% naive T Cells.....everything is really wonderful!

2008-08-21T16:36:00.000-07:00

Yay Hey Hey 9.5%!!!

2008-08-21T16:01:00.000-07:00

Hi everyone, Sorry it's been a while between blog bits. We found out about a week ago and we wept with relief and happiness that the July naive T Cell's were up quite a bit to 9.5% (up from 6.3% the month before). Still a way to go but this good news keeps us going strong! Thanks to everyone who continues to support Rocky and keep him in their prayers - we know it makes a difference.
As 2 y.o's do, Rocky has been doing some very funny things. For the longest time we have discouraged him kissing us because of the transfer of germs, but we are feeling a bit more confident so he can give his mum and dad a kiss (when we are well of course!) and he does very often lean over for a kiss and cuddle and it's beautiful. He's been experimenting with walking around with his eyes closed (lol!) and loving his shadow - or maybe it's just his profile he adores. At any rate, we are constantly waiting for him to collide with the wall checking out his shadow, rather than looking ahead. I think the piece de resistance must be, though, Brett, myself and my sister Priscilla (visiting from Canada) sitting at the table eating dinner, we hear this almighty roar of excitment and then Rocky tearing up the hallway at a million miles an hour with his car thingy and we all just sat terrified, as wheels lifted off the ground when he turned corners and took off again in the other direction. So if you see a few bruises in the pictures, just know that he cannot be stopped and that we are amazed they are all the bruises he has!
Everything is great.....his levels for just about everything have really stablised and after a very long battle with high Urea, it's finally coming down we are nearly in the normal range. RCH are pretty confident the rash is just eczema, but we will know for sure next week. But it's looking good which is such a relief. Teeth, which were once a concern in their absence, are now coming down thick and plenty (I think there are at least 5 on the go). Rocky tried to relieve the discomfort by attempting to nuzzle (bite!) me on the knee this morning. Everyone always said be careful what you wish for...
Have a great weekend : )

Rocky's Leaving Home...

2008-08-01T04:33:00.000-07:00

Well, not quite! but here is a vid of the little actor prentending to leave with suitcase in hand. It is one of very many adorable things Rocky's been doing lately (not a biased mother talking at all!!). It was so exciting this week as well, for the first time he put two signs together - he is learning signing to help him communicate as there will be speech delay. What he told me was he wanted more to eat. It was thrilling and we are so proud of him.

We are glad to hear from RCH this week that his 'bad' T Cells continue to drop in numbers. We are still waiting on the latest tests (done 22nd July) to find out what the good cell numbers are. Rocky has had a rash on his hands and feet which we have been unable to get rid of. It is becoming a bit concerning. We are trying to get to the bottom of it. Dr's say it's unlikely to be GVHD (graft vs host disease - where your body fights the transplant tissue) although he has not been formally checked for this just yet. It can be treated. Another idea is that is might be the 'bad' T Cells, what's left of them, reeking a bit of havoc. He's also had eczema, and without getting too much into it....the immune suppressant would have kept eczema in check but also the bad cells....so it's hard to know which could be playing up. We worry but are trying to keep an open (and sane!) mind until we hear anything for sure. Please keep the man in your prayers, he still has a way to go! Thank you and With lots of love xoxo

Happy 2nd Birthday Rocky !!

2008-07-19T20:47:00.000-07:00

Rocky is having a great birthday....starting out by being allowed to stay up late the night before We attempted to see the new Batman film, thinking he would fall asleep on the way there. He was still VERY wide awake when we arrived at the drive in. After a few beeps of the horn and flashing of the lights at the other patrons (by Rocky, not us!) , we realised there would not be nearly as much movie watching as we'd hoped. We still don't know what the film is about. Rocky finally fell asleep at 9.05 and the movie finished at 9.15pm. Way to go, Rocky. We know it's your birthday, but did you really have to rub it in.

Today he has relished all the new toys, clothes and being allowed to eat as much chocolate as he likes. It's wonderful and what a fantastic milestone that he is so well and healthy celebrating birthday number 2.....we have loved every minute !

2008-07-14T00:32:00.000-07:00

Get Going Yer Lazy T Cells...

2008-07-06T03:57:00.000-07:00

We received the latest results on Rocky’s immune function.
At last IVIg (24/6) the tests were done and show an increase of the naïve T Cells to 6% (from 5.5% at the end of April). It’s good there has been an increase, even though smaller than we were hoping, especially as he is coming off the immune suppressant.
Dr Markert said she was happy as long as it kept increasing, but did agree his cells are really taking a very long time to get there. Every child responds differently to the transplant and so we really just have to wait and see. It's hard sometimes as we are so worried for Rocky and just want to know he'll be okay.
We are not sure what the slow growth means for the future (esp in terms of timelines for Rocky to be out and about in the world). I know mentally I am preparing that 2 years post transplant will not be the date, that it will be longer. Brett is more optimistic and so I hope he is right. To give you some idea of the numbers, it was described to us that adults have 40% naive T Cells and 60% memory (the ones that remember diseases so they can fight them off in the future) T Cells. Children have less memory T Cells but they increase as they get older and as they catch more things. The Dr's said that they would like Rocky to have at least 20% naive T Cells before they think it's quite safe for him to be out in the world.
Things are otherwise great. The tube is still out and Rocky has been trying out all sorts of new foods (even stuff that's good for him! LOL.....) the best of all is some red meat. We hope this helps the issue of his ongoing iron deficiency.

Rocky is really loving climbing all over things at the moment and so we bought him a playgym for his birthday, which is in a couple of weeks. For us this was much more preferable than to continue have him climb on the TV cabinet and dance in front of the telly OMG I nearly died the first time I saw him there. But of course, he was so proud of his effort. Take care,

2008-06-22T21:53:00.000-07:00

Hi everyone, It's all pretty smooth sailing here at the moment which is so great.
Rocky has been without the naso gastric tube now for about a month and we hope it stays that way. It also appears some new fangs are on the way - FINALLY YAY!!!
and...It's 1 and bit weeks away from the final dose of the immune suppressant. We are expecting the results of the latest immune function tests in the next few days hopefully : ) Hope you are all well!

Gettin' Iggy With Ya!

2008-05-25T03:05:00.000-07:00

Hi everyone, The RockStar is great and back in action. He's spent the last week with his Nana & Poppa Hohn down from Queensland for a visit, which he loved. It was a great week.

We also have a new family member, Iggy. Iggy is our new siberian husky. We were lucky enough to find him online from a place near ACT that rehomes huskies. He has had a few homes before us. He likes to jump fences so he didn't last at the last few places. All is good so far as he has not escaped our 1.6 metre fences. He is so beautiful and fits right in. Sometimes we wonder if he is Kostya reincarnated as he tries to eat Mia's leftovers and doesn't come back at the park when you call him (actually, he's not too bad!). It seems so right to see Mia with a mate to keep her company and they chase each other around, we think they are going to be great together ; )

TKO after week long battle: Rocky "The RockStar" Hohn VS E. Coli (Bad Infection in Blood!)

2008-05-11T18:24:00.000-07:00

Hi everyone,
We spent the last week in hospital. Some nasty bugs got into Rocky's central line and went straight into his blood stream, causing septis and Rocky became very very ill. As it happens, we were at the hospital getting the monthly IVIG when it occurred. I came into his room at Day Medical Unit and he was freezing cold and shaking and crying. It was so terrifying. You could see he was in alot of pain. It is very serious for Rocky to get an infection of this nature. People with normal immune systems get very very ill if this happens to them. The medical emergency team were called and Rocky has been pumped full of antibiotics for the last week or so. He had fevers of about 40/41 at worst for the first few days. It was really awful. He had emergency surgery the following night to remove the infected line. With no line it was near impossible to get bloods and that was a huge stress for everyone (including poor people trying to get them) but especially our poor little man, who had already been having such a bad time. Once Rocky stablised (no temps etc) he had a new line put in, which he had done the following Wed. Must say the team at RCH were wonderful and very thorough and so Rocky was in good hands.
It absolutely shakes us to the core to know that if we had not been at RCH when it happened, Rocky might not have been so lucky. We are again reminded how fragile this whole situation is. The doctors have said that things went as well as they could have in terms of Rocky's recovery. He is still a bit tender where the new central line went in (it's called a port, and this time it's under the skin - see pic) Thank you to everyone who kept Rocky in their prayers over this time, we know the Man upstairs must be listening because Rocky has really been charmed and for the most part he is almost fully recovered. As for Brett and I, if next time you see us you notice a few more grey hairs, please refrain from telling us LOL!

2008-04-27T02:21:00.000-07:00

Things are going pretty well here. We are into week 3 of the immune suppressant weaning schedule and we can't wait until the end (last week of June). We had a bit of time without the tube but now it's back. It seems man,indeed, is not a camel. He cannot find the room for 1200mLs per day plus food.
Rocky has become our little helper, helping us dress him, close things and pack things up but best of all, alerting us when the TV is off. The last reminder I got was him tapping me on the shoulder and then pointing to the TV.
Today he had his hair cut. We cut it at home because he obviously can't go to the shops. The neighbours would not be blamed for thinking a murder was occuring upstairs in our house, such were the screams and tears of protest by Rocky. I know we are setting him up nicely for some poor hairdresser when the time finally comes. He he.
When the weather is warm enough, he's been cruising the pathways on our street, checking things out and trying to get on the road. He is a boy after all! And last but not least, we just adore the cuddles he gives us. Sure, sometimes it feels like a headbut but we take what we can get. He's already pushing us away when we try to kiss him OH DEAR! not even two yet...

Great Kodak Moments...

2008-04-12T05:05:00.001-07:00

#1 I think it's fair to say Rocky has mastered the 'What do you think you're doing' look. Or maybe "You're kidding, someone drew all over your walls with an orange pencil??"

#2 "Grandma, I'm going to ring Grandad and check on that...."

Well.....

2008-04-09T18:50:00.000-07:00

The tubelessness did not last : ( However some other good things like Rocky learning to put his shoes on, putting his cap on (albeit backwards!), eating with a fork and walking more and more is a real buzz.
I'll have to take a video of the pure excitement on his face when he sees us go into to, and come out of the pantry. All in the anticipation of chocolate. It's beautiful and so funny.

We're On A Roll....

2008-04-03T04:00:00.002-07:00

Fantastic news today from the US! Rocky's T Cells have hit the magic number and so we will begin weaning the immune suppressant over the course of the next 8 weeks. This is so exciting for us because it's the next step in his recovery. Once this is done, we can expect him to get a tetanus immunisation and hope his immune system can mount a satisfactory response to that and then a more complex immunisation is tried. This could take about 6 months.
For ages Rocky has refused the bottle, but today, when we least expect it after him ripping his tube out....we tried the bottle again....and he loves it! He cried when we took it off him! Go figure.....So we will see how it goes...sans tube.

Have a great weekend : )

A Tribute to a Little Man's Best Friend....

2008-03-25T02:30:00.007-07:00

Sadly, our much beloved male dog, Kostya, became sick and had to be put down this Easter weekend. We are absolutely devastated but know he has gone to some wildly fantastic doggy heaven where bones, dog chocolates and walks off the lead are a plenty. May he rest in peace. We will miss him so much.
We have had some good news, however, to brighten our hearts and that is that Rocky's March results show his T Cells are steadily on the rise.....yahoo....4.1% with the next test in a few weeks. Rocky is otherwise great. It's really nice to watch him grow up. Especially great for us is watching him laugh at something he finds funny. If I didn't know better I'd say there's an old man inside there! Take care xox

2008-03-20T18:37:00.000-07:00

Make a free ecard - it's easy!

Rockygate....

2008-03-18T14:50:00.011-07:00

Rocky thought the gate was a great toy at first, pushing and pulling on it til he realised it's stopping him getting up the stairs. See first pic of him cracking it : (

My brother Mike always said that McGyver (you know that TV show?) could build an atom bomb out of a Mars Bar. And I kind of think Brett is a bit like that. He responsible for building this mighty contraption to stop the man getting up our stairs.

On the medical front...... T Cell count from the Royal Children's testing in Melbourne are showing a little increase for March (so up from 3.8% in Feb) We have to wait another week for final results and numbers. The bloods getting sent to Duke are a bit problematic.......possibly the samples are getting damaged in transit so the Jan results from there showed a 0% T Cell count. This is obviously not good if they are correct, as it would mean Rocky's T Cell count has dropped. But we are hoping that it's really the problem of transit and not something else. It appears that's what is most likely, esp given RCH results. Following a week of filthy hot days, we are now enjoying much more gorgeous Autumn weather and so today, that will mean a bike ride and possible swings for the man with a much happier (and cooler), Mum. ; )

Rocky ....the Manly Man

2008-03-08T01:34:00.004-08:00

Well, Rocky is totally captivated by TV (aren't all kids?). The first pic I am getting 'the look' because I'm interrupting the Wiggles. As I tell him several times a day 'Uh Uh - no don't touch that' I am no longer afraid of the look. We are old friends.

The man is growing up slowly but surely in different little ways every day. It's really amazing to us (and to all parents I'm sure) how one week they seem to not really understand something and next week they are just older and wiser. (and looking at you like your a dork for something they found funny last week - nice.....)

Rocky has really discovered his belly button. I was most amused the other day when he saw his navel, then bunched up his belly to see it but then could not work out where it went. Made me laugh for ages. He thought it was funny too.

Lately, his Dad cracks him up singing the title song of that horribly sexist yet often amusing show "Two and a Half Men'. (Charlie Sheen) "Men, men, men, men, manly men men...." Rocky doesn't seem to think it's as funny when I try to sing it....guess it's a man thing....... ; )

Our funny little man is no baby anymore! : (

2008-03-05T21:00:00.004-08:00

Well, it just cracks us up when Rocky gives himself a round of applause for doing something (first vid). He is nearly walking and we are so excited for him. We hear from just about everyone that we probably should not be so excited for us - as life just gets more hectic chasing a toddler. We'll have to wait and see. It's been a tough road for our little man and we are so proud of him ,watching him conquer things despite all the hurdles in his life. He is now a whopping 11.1kg - not bad for someone a few months ago who wasn't even in the centiles.....Go Rocky!!

Preliminary Feb results show his naive T Cell count is up to 3.8%. More bloods were taken this week and we hope March could be it to hit the 5%. If you have been reading this blog for a while, you will know it's a long time coming. Fingers crossed this is it. We never give up hope ; ) Y'all have a great day.....

2008-02-24T02:44:00.003-08:00

It's been a very busy week with lots of Doctors appts and a visit from Grandma & Grandad Crawford this weekend. Sometimes we think that Rocky will be afraid of people as he doesn't really get to mix much with the outside world, but we stop worrying when we see how much he loves the company (and attention!) when we have visitors. It's great.

All the medical stuff is pretty stable and good. The T Cells are coming in slowly but surely which is great. In truth it's probably taking longer than we anticipated, but the main thing is that Rocky remains well. He is growing so fast now, every week it seems he hits a new milestone. He has taken a few steps on his own here and there from toy to toy, I keep thinking it can't be long til he's walking now. He's always so proud of himself, giving himself a clap when he's achieved it. It cracks us up ; )

Can't believe we are nearly a year post transplant.......WOW!

A Week @ Phillip Island

2008-02-14T19:59:00.006-08:00

Rocky really enjoyed having a new place to explore (ie. tear up! lol) and we all had a very relaxing week by the beach. Hope you enjoy the pics ; )

2008-02-01T01:44:00.001-08:00

Life here remains pretty straight forward and we are settling into a nice, relaxed routine. Brett & I have begun to return to some things, like playing sport etc, which we haven't done since the man was born. It's nice.

Rocky remains really really well, getting into absolutely everything and it's getting harder and harder to keep him inside. He loves the outdoors and we do what we can to let him out while the weather's good. Soon, summer will be gone : (

He's gradually been increasing the amount he's eating (by mouth) which is fantastic. His weight is also very stable and he's grown about 5 cm since the end of last year. Not bad, Rocky ; )

Life's Just Beachy!

2008-01-16T21:22:00.000-08:00

We stepped out for a spot of sunshine today. Enjoy ; )

How Goeth the T Cell Proliferation.....

2008-01-07T22:52:00.000-08:00

We found out today (from blood tests done in Nov) that Rocky's ''good'' T Cell count has not risen from a few months ago. On the up side the ''bad'' T Cells are dropping in numbers. He had his monthly IVIG today so more bloods are being sent to Duke and we hope the results this time are what we want to see so we can move him off the immune suppressant (are you getting a sense of deja vu ) Yes, we've been hoping this for some time.Oi, just when I think my patience has improved....LOL Reality check.
It feels like a set back and we are disappointed, but in truth, things are moving in the right direction. Dr Markert is happy with the progress and there are lots of other really good things happening as well. Rocky remains really well, is getting incredibly mobile (climbing stairs very quickly and stealthily, goes for a ride on his bike every day, plays on the swings) and is eating like a little champ and has now added popcorn, fish fingers, chicken nuggets, smarties and snack pack to the collection of things he'll eat. Still will not have a bottle but he'll drink from a cup a bit. So the tube remains for the time being. I am pretty confident if we chocolate coated everything he would have a taste of it. Certainly he is his mother's son. I can't even crack open a chocolate bar these days without sharing : ( And no such thing as trying to hide what you are eating, little eagle eye watching our every move and doesn't mind a bit of emotional blackmail to get it. Good one, Rocky! You are learning so fast. ; )

Christmas Cheer...

2007-12-27T14:36:00.000-08:00

Hope y'all had a great Christmas! We did (although would have dearly loved to be with our family in Qld) here in Melbourne. As you might imagine the tree was overwhelmed with pressies, I think one or two might have been Brett and mine and the rest....you guessed it - the man overwhelmed with goodies. The lounge area is a sea of toys. Well, you are only young once!

Bath Time Bonanza!

2007-12-13T00:19:00.000-08:00

Rocky loves a bath and here he is in action!

Everything is good here, Rocky remains well and so we are just waiting on results from Duke still before hopefully weaning the immune suppressant.

The Man is babbling alot more, is heaps more engaged in playing games, always trying to get our attention and attempting to stand on his own - it never stops - and as the saying goes 'they grow up sooo fast". So we just enjoy it as much as we can...

Life here is wonderful, hope it is for you too ; ) & Merry Christmas!

2007-12-02T14:15:00.000-08:00

Hi everyone, Everything is really good here : )

Just been enjoying life and Rocky is keeping us entertained. He gets in a mad mood just before bed every night, laughing at anything at all. Must be overtired! Still, we find it very amusing and a great source of entertainment.

He has learnt to climb our stairs, yesterday he tackled the whole lot. Occasionally, he loves to tinkle the ivorys, too.

My days of lazing on the couch are well over : ( - it's a matter of keeping up now Oi

Life Is Good!

2007-11-15T16:17:00.000-08:00

Rocky has been great, getting into everything and just generally 'peachy!'. And of course, so is life. He is getting more bloods sent to Duke in about a week and if his naive T Cells are over 5%, then we can start weaning the immune suppressant. We can't wait.
We saw physio today and they have basically said he should be okay, he's developing within the normal range. As you can imagine, we are ecstatic! One more tick in the box!
Have a great weekend : )

Walking The Dogs...& A New Do....

2007-11-10T15:00:00.003-08:00

All Good on the Rocky front...

2007-11-08T14:53:00.001-08:00

I'm am pleased to say there is not much news! All smooth sailing here at the moment . Grandma Crawford is visiting this week which is wonderful. Hope y'all well ...Happy Thanksgiving to our mates in the USA : )

Is This The Face of an Angel with T CELLS?!?!?

2007-10-28T17:38:00.000-07:00

Yes!!!!!!!!! They have started to come in! It's so exciting and so surreal. We are over the moon!

Rocky will still be immune suppressed for a while, until the cells get over a certain %, and then we have to speak with the doctors to find out if there is a further waiting period ie. the time it takes for the naive T Cells to go through the thymus to be educated. But another major hurdle passed and it feels wonderful! Thank you Dr Markert and all the team at Duke, without you it would not be possible to be feeling this GREAT!! 9.6kg today - there is no stopping him now! YAHOOOOOOOOOOOOOOO!!

Racing Now....!

2007-10-19T20:11:00.001-07:00

Spring Carnival fever is in the air, and with the Melbourne Cup only a few weeks away, Rocky tries out the favourite, Rocking Horse (excuse the pun). LOL
We also got out and about this morning for another bike ride. He enjoys the ride but he really doesn't like getting his sunglasses on. Rocky was tested again this week to see if the T Cells are in....we are just waiting to hear.

Tour de Rocky

2007-10-16T20:46:00.000-07:00

Rocky bought his dad a baby bike seat for his birthday. Of course, you have to get a helmut too. I can't help but think Rocky looks a little bit like Gazoo, from the Flintstones (for those of you that remember!).

We went for our first ride this afternoon and Rocky really loved it! Can't wait for more....

Rocky Beach Babe

2007-10-14T19:03:00.001-07:00

We had to take the opportunity in such beautiful weather, to step out for a bit of sunshine! Fresh air can make you sleepy.

Who's A Big Boy Then...?

2007-10-07T15:20:00.000-07:00

9.11kg today YAHOO!!!!!!!!!!!!!! We've broken through the 8kg barrier after 6 months....must be all that toast he's eating
; )

For his morning nap today he decided he couldn't wait.....collapsed in the chair, leaving even toast, behind!

2007-10-01T19:00:00.000-07:00

The Good Life...

2007-09-30T18:57:00.001-07:00

After a foul (weather) weekend, we have a beautiful sunny day today! We are making the most of it. Rocky and the dogs, Kostya and Mia, seem to be liking each other. Both parties are very interested in the other. But they'll have to keep their distance as it will be a while before the dogs and Rocky can share, dare I say it, probably their slobber and food. Rocky tried to pat them today, but I had to kill the joy. : (
The man is getting quite mobile, and such a sticky beak! We are trying not to take it personally but if we get in the road when Rocky is watching telly, he just moves his head to try and navigate around us to see. Ayyyy......TV monster.

Ready, Steady GO!!

2007-09-26T01:03:00.000-07:00

Rocky crawled for the first time a couple of days ago. He is so proud of himself, and we are so proud of him too!

Na na na na na na na.......

2007-09-23T17:17:00.000-07:00

Easy Rider....

2007-09-21T15:21:00.000-07:00

We now know why those long things where parents can stand, while pushing such contraptions, were made.

Oi........my lower back!

Or dare I say it....getting old : ( lol : )

Another Dry Month!

2007-09-20T02:03:00.000-07:00

Rocky was tested again this week and no T Cells again. I guess this practice will continue every month until they show their little faces. We are expecting anywhere from now til December really. Please keep your fingers crossed for the man.
He is otherwise great. Back to his old, cheeky self, really getting into everything and really happy : ) It's so nice.
ps. I think he will be a food monster. I can't wait ; )

No T Cells just yet

2007-09-16T20:44:00.000-07:00

We heard back from Duke and no T Cells just yet. Apparently it can take a little longer for DG kids who have HHV6 (Roseola virus) which Rocky does, and also if the kids are atypical complete digeorge, which Rocky is.

We are disappointed but hope within the next couple of months we will hear good news. The most important thing I guess is that it happens in the end.

We have been enjoying walking our dogs and just hanging out together as a family. Rocky has kept us busy with teething and other usual baby stuff, and funny things happening with his sodium and hydration - which we are still to get to the bottom of.

He is really getting into the food thing, this morning I was met with tears because I was not making his toast fast enough. I'm not good in the mornings (and clearly not good enough for him!) Ayyy what's a mother to do?

Nothing Pleases Like Maltesers...

2007-09-09T00:41:00.000-07:00

We are getting there with the eating thing. Volume of food is not so crash hot, but interest is peaking and it seems every bit of food that travels past Rocky, he wants a taste. We are really glad this is the case. His two front teeth have come in very handy for knawing muesli bars and other things. Today, he was especially thrilled with how Maltesers melt in his mouth. Finger foods are working well, but he will still refuse spoon and will not have the bottle. I guess it means we don't have to worry about him getting attached to a bottle later on. The binky (dummy) is another story. lol.

Rocky's levels are stable and the sodium/hydration issues are slowly correcting. No miracles but steady, and moving in the right direction which is a relief.

No news yet about the T Cells, still waiting to hear from Duke.The weather in Melbourne has been glorious and we can't wait to get out and about more in the sunshine as Spring gets well under way.

: ) Hope y'all well!

2007-09-02T20:29:00.000-07:00

Rocky is starting to taste a variety of foods again now, we've been having trouble getting him interested recently so it's great he is at least trying. The advice from our doctors is to let him feed himself as he is very wary about anyone else trying - I guess he thinks we are trying to shove something nasty down there - and in the past he would be correct. (That's one good thing about the tube, no tasting yukky meds.) Some good news since we've changed the feeding regime a bit, virtually no throwing up feeds which is great.

So he's tried toast (digging that), BBQ shapes, but his new found culinary joy is these French biscuits called Le Petit Ecolier (The Little Schoolboys). Today when I got one out to have with a cuppa, his face lit up and he tried to take it off me. A rival in the house for my chocolate. LOL

No news yet from Duke about his cells. We hope it will be soon.

Rocky has been very very cranky these last few weeks, I think other than the other issues with his calcium and sodium, that he could have a few teeth coming in. So we have our hands full being silly, trying to make him smile, only to be met with a stare that says - you're not very funny Mum LOL.

Grandma Crawford is visiting this week and here are some pics.

Back Home

2007-08-27T03:18:00.000-07:00

The Man's levels are all pretty good now - his sodium has dropped a bit again so he's now on supplements for a bit so we can manage it at home and we'll see how it goes. So we left hospital today and are home again YAY!

Back On Track....well...mostly

2007-08-25T00:25:00.000-07:00

The man is still in hospital but doing much better today after IV and oral sodium, he had a blood transfusion and is having the last iv calcium then coming off the iv saline tonight.
Rocky's mood has improved tremendously, his twitching has stopped (guess what I finally found out it's called TETANY) and he is clearly feeling a lot better.
They still don't know the cause of all the (sodium) upset but if he stablises, that will probably be the end of it. If he is doesn't, I guess they will keep searching for a cause.
The renal specialist was in today and said that his kidney function is fine and so no probs there which is a relief.
We said goodbye to Poppa & Nana Hohn today - I have attached some pics of Poppa and Nana and the Rockstar in the hospital. What a week - they might be afraid to come back! LOL. All illness aside it was a very lovely week we had catching up. Now we just need the little tacker to come home!

Never A Dull Moment....

2007-08-23T07:07:00.001-07:00

It's been a huge week so far.
Rocky has had his bloods taken and sent back to Duke and hopefully we'll know within a couple of weeks how those T Cells are looking.

Rocky was admitted to hospital tonight at about 8.30pm as a precautionary measure. His sodium is very low and they are concerned about why/how he is losing it. And of course it will need replacing. Also his calcium has been on the low side for a week now and we found out tonight his haemoglobin is low too. He has been VERY VERY irritable for the last week or so and this could explain it a bit I think. Very low and very high sodium levels can cause seizures.
Firstly, the plan is to find out why he is losing the sodium. They repeated bloods tonight to ensure that the results were correct (they are), will take urine tests and then start to identify the cause and then treat it. He will be in there for a couple of days.
The good news is that he is in one of the special filtered rooms in oncology ward and they have him on reverse isolation (they wear gowns and masks to protect him from them) so he is in the best place in the hospital he could possibly be.
Okay, hope you are all well, we will feel a bit better when we know what’s going on.

It's Showtime!

2007-08-15T01:33:00.000-07:00

It's been a while between updates...not much happening here. We have been keeping well away from people as the Flu here has killed about 5 people so far (mainly young kids and a few adults). Rocky will have bloods drawn in the next week or so which will be tested for those magic cells - let's hope they are doing what they are meant to be! Eating still an issue but otherwise, Rocky is great, getting quite mobile on his feet which is fantastic.

I do believe Captain Feathersword is his favourite Wiggle and my favourite is watching him tap to the music when it comes on. Magic (to me anyhow!).

Some pics of Rocky in his highchair getting a feed, he is usually great sitting there for nearly an hour without too much complaint - but sometimes I get the look when he's over it (check se cond pic). Rocky is about to enjoy a visit from Poppa & Nana Hohn next week which will be nice.Hope you are all well and we'll keep you posted!

The "Face", The Wave, The Fangs...and other precious Rocky Moments!

2007-08-04T03:50:00.000-07:00

It's toy city here following Rocky's birthday. He has taken a new liking to Bob the Builder and The Wiggles as well, as many children have before him. Brett & I now know finally, what the 'big red car' is, adore the Spud from Bob and won't be long before we are humming the tunes of both programs in the shower. It's not the end of the 'adult' world, the decline yes, but not the end LOL! We are loving it. Rocky is still immune deficient, we are hoping that towards the end of August we will know more about his T Cells starting to come in (which they hopefully will be by then). Once that happens he will slowly be weened off the immune suppressant (still being used to ensure the rogue T Cells do not attack the transplant) over approx. 3 months.

It is wonderful for us to be back in Australia, seeing our lovely family and friends and most of all, being together again as a family. xox

Family Getaway...

2007-07-29T21:57:00.000-07:00

My husband, the wonderful romantic, took me away for the weekend down to Phillip Island (ok, he took all of us - Rocky and our dogs too! LOL It would not have been the same without us all there - the family apart for so long. We had a very relaxing time and are now back home getting into the swing of things slowly but surely.

Thank you to everyone (haven't had quite the chance to thank you all personally yet!) who sent birthday wishes and also pressies for the Man's birthday. He is such a lucky boy to have y'all thinking of him! xox

A Current Affair Follow Up Story Airs Monday 23 July @ 6.30pm Channel 9

2007-07-22T04:14:00.001-07:00

More Rocky Birthday Moments....

2007-07-22T04:09:00.000-07:00

Rocky Birthday Madness!

2007-07-22T03:13:00.000-07:00

What a blessing - we were home to celebrate the man's birthday and although it was a small gathering, he was smothered with great pressies and lots of love. Grandma and Grandad were here to celebrate with us.

He has been a little unsettled, lots of changes for him including having his own room (used to sharing with his mum!) so we will just be readjusting for the next week or so.

It's great to be home!!

We're Home, We're Safe, We're Alive!!

2007-07-19T08:41:00.000-07:00

Hello all, So please to tell you that we arrived safely after a very long but good flight, at 11pm tonight.
Hope to be chatting to lots of you soon!

ps. Thank You to the wonderful flight crews who made our trip great!
pps. The stories of a freezing cold Melbourne are true.....brrrrrrrrrrrrrrr

xox

A Man on the Move..

2007-07-16T15:24:00.000-07:00

You leave him alone for 5 minutes...

somehow he got from over near the tv on the blanket, to under the coffee table ....

then over by the blinds....

Australia here we come....

2007-07-13T10:51:00.000-07:00

We have confirmation our flight is this coming Wednesday. At this stage, it looks like our ETA in Melbourne will be very late Thursday night. YAY!!

No News Yet....

2007-07-12T04:22:00.001-07:00

For those of you still reading, or, let's be honest,interested LOL......I am losing credibility, I know.

Ok, but we know the flights are still being organised. We know the wheels are definately in motion. We were hoping to hear for a flight maybe Friday or the weekend, but not sure now.

Brett leaves today (Thursday). He had extended his departure in the hope that we would hear word of our flight and he could help us do the final packup, but no such luck. Sooo, the man and I are just waiting to hear the details of the day/date and hopefully we'll be home soon. Take care and let's pray we are home for the man's birthday next week! xoxox

Father & Son....!

2007-07-08T18:56:00.001-07:00

Hi yáll, Brett arrived Saturday night, is here for a few days to help us with all the stuff back, so brought nice empty suitcases so Rocky's toys will make it home. Phew. Actually, he brought 2 suitcases, one empty the other half full with his stuff - they lost the one with his stuff in it LOL!!!!!!!!!!! However, it did turn up this morning so he only had to use my deodorant just the once, after I assured him it did not 'smell girly'. LOL We will likely be home toward the end of the week, Brett will leave on Wednesday so he is home in time to collect us from the airport. If we are lucky, we'll be travelling close to the same time or within a day or so of his departure.

: ) We are all smilin'' here, hope you are too!

YAHOO!!!!!!!

2007-07-06T13:24:00.000-07:00

We are absolutely thrilled with the news late yesterday that not only will we be coming home (most likely next week) that we will be travelling via Air Ambulance - the man will be safe!!! I cried my heart out with relief when we heard and then could not sleep til 3am - we got the news at midnight our time. I am so grateful and honestly, I still feel like crying now as I write this - I am just so thankful Rocky can be safe. My heart is absolutely rejoicing!!!!!!!! Lots of love and thanks for hanging in there with us. xoxo

Independance Day..

2007-07-04T08:03:00.001-07:00

Here is Rocky pretending to sleep but it didn't last long when I started making goofy enough sounds to wake anyone up. Scary. Well we know now it's going to be at least another couple of days before we find out when we come home, not today, like we expected (hoped). HO HUM.Happy Independance Day. Also a pic of the fireworks near us we saw tonight - beautiful breezy night!!

The Birthday Adventures of Rocky NC

2007-07-02T11:22:00.000-07:00

Hi yáll , hope you are well. No news yet about our trip home but we have good reason to think we'll hear something the next couple of days.

We took the opportunity when Peter and Priscilla were here to start Rocky's birthday celebrations across the globe, first stop NC. Rocky did not like it when we blew the candle out. He cried. So we re-lit it, and presto!! How to make a kid happy in 2 seconds or less.

Vomits and gastro continue but at least with the change in formula, Rocky's weight is stable. Calcium has been a bit haywire so been in at the hospital the last few days making sure all is okay. It is moving in the right direction now(UP) so that is good news.

Peter and Priscilla left today. We are sad : ( we know this is the last time for a while. But we had such a great weekend we will remind ourselves of that when we are feeling a bit teary.

Lots of love and heaps of missing ya xoxoxox