Eels Pictures - Finally !! Us and Harrison with the Eels players :)

I finally got the Eels Pictures downloaded - There they all are ..

This is the photo we are using for the fundraising. It reminds me every time I see it just how sick he was then and how careful we have to be not to get back to that. I also see how far he has come. He was sitting on my chest today while I laid on my back, and he was looking at me while I blew raspberries on his feet and then he'd crack up laughing. Such a gorgeous kid. How lucky I am to have him. And Scott has become so much more comfortable picking him up now too. He'll not worry so much about the central line anymore and grab him for a hug. I even got out a couple of times the last week - on my birthday no less!!

I am back off to hospital with Harrison this week. IVIG time again, and see the "cast of thousands" as I like to call it , when we get there. Harrison is doing pretty well, although I cannot keep food up to him , and seriously for the amount the little man has he should be at least double the size he is.

I started solids with him this week. Which makes no difference - except to the output of poos. They have increased too!!

I sat helping last weekend with our first fundraising raffle at the football. So many people there with babies in prams, and most of them bigger than Harrison yet half his age. I really thought he was holding his own in terms of looking his age, but I guess I am used to seeing what Harrison looks like now. He is still so little - my tiny man!! :)

But it makes me wonder at how much I took for granted before with the other kids. I put them in the pram walked around the streets and shops with them and never thought twice about it. Now it is careful planning or make a call to someone to get me something I am in short supply of. I cannot wait to be able to just go for a walk with Harrison in the pram and not worry that someone will sneeze on him and make him sick again.

and even though he has 10% of his cells showing as female cells there is no signs of immune function. He has been putting weight on at the expense of me feeding him 2 and a half hourly and it breaks my heart that I cannot take him with me every where I go - I hate leaving him behind. I also have found how bad I am at the moment emotionally. I find talking to strangers about him hard, and I really worry how he'll be long term. Those test results from the US have still got me in a knot. Luckily we do go back to hospital this week - I have a list of questions to ask the doctors when I get there.

Harrison will be six months old soon - and he is a little behind in his development. Being home may be driving me nuts - but I am thankful I am home. I have said bugger off to the housework - eventually the clothes will get put away - but for now I am enjoying the kids, and their new things they do - and them with Harrison, although they still want to pick him up, at least he is holding his head just slightly better which is enough that I can feel more comfy with them "having a turn" with Harrison ( or for those un-initiated with this "having a turn" it means having a cuddle). Such a great fight solver that one. All I say is who wants a turn of Harrison - Fighting all stops - well at least about the toy they were fighting over, because then its a tackle-a-thon to the lounge to see who gets a "turn" first!

Progress

I thought I'd add a cute pic of the kids - they have been so good this week, even with me being a cranky pants!!

Well this has been an interesting week. We saw the pediatrician on Monday, then the community nurse on Wednesday, by Thursday Harrison had developed a cold.
So he is ok, but has a runny nose and a cough. I called Westmead Childrens and spoke to Sam, (Dr Sam Mehr ) and they are happy to watch Harrison, but any development at all and I call back down to them and discuss.

As I said in the last blog Harrison now has a 10% count of Female cells which should mean he has something there that may fight off this virus he has. He already has Bactrim antibiotic which he takes daily to ward off any chest infections. So we will see how things go with this.

I also changed Harrison's central line dressing. I did it last week too - while it did the job it looked all wrinkly. This week- it looks so much better, I felt like a real pro!!!

Here's a pic of that too...

We also got told about some of the enzyme tests coming back from the USA that were done in line with the genetic testing they are doing for us too. This enzyme count confirmed what we already thought. Scott & I carry the rotten ADA gene!! Ella is a carrier (and so given Sterling's low counts of ADA enzyme he would be too) - but Marlie is not - her count is 1.6 aka perfectly normal and Harrison is ADA deficient.
They also tested the toxicity levels of Harrison, which is an indicator of sorts for how badly affected these kids are. Harrison's toxic count was quite high, and as much of the literature I have read indicates- it is these kids that then go on to have the neurological problems. So we knew this already with the eye problems and hearing loss, but this is a bit more of a complication - we will now have to wait and see exactly what Harrison has in stall for us!!

The cold will certainly give us a clue if things are moving though, as we hope he'll be able to fight it off. ( and we hope that its not some bacterial infection just starting!! )

Anyway that's about it this week. That and I had a chat to John Laws about Harrison praising the hospitals and staff that gave us such incredible care, and the difficulty we find ourselves in without much help from Centrelink. I was very nervous talking to him but I think it helped, and if in the long run it benefits Harrison then I would do it again in a heart beat.

Ciao

Reality

Forgive the dark nature of this post. I am struggling with life this week. The pressures of being at home full time are starting to mount. The only bright point in all of this is that Harrison's cell count at 30 days post transplant showed signs of female cells - about 10 % of his blood count in fact. This is pretty damn good, and means that the bone marrow is grafting- now we wait to see exactly how well this is.

The reality of life has hit home. Yesterday I went to see the pediatrician. Dr Buckmaster - a god in his own right, as far as I am concerned. He did such an amazing job with caring for Harrison and getting him transferred to Westmead. I really feel that he saved Harrison's life. I was really emotional about seeing him. At the end of my appointment with him I told him thank you - for all you did in saving Harrison's life and being so thorough, because he wouldn't be here now if you hadn't done what you did. I then cried all the way home. You see, Dr Buckmaster was quite real with me - and we talked about Occupational therapy and physiotherapy and setting up the things Harrison will need. Harrison's eyes are also doing a new side to side movement as well as the up and down stuff too now. I cry because I don't know why this is happening, and if this is going to be a serious problem in the future. I cry because at the moment life seems a little hopeless. I cry for the life I once had, without the massive burden we now face financially.

But it is not just that that I am emotional about. Giving up work is hard, not that I value work over the kids, but that work is my time, selfish - yes, but I value the time and space away from the kids, house and Scott to just be me. I miss not being out there and earning my income. Work has always been my tool for coping with life.

Whenever I got stressed out or had a problem - I'd work. Now that avenue is no longer an option. I have had to give up work, purely to care for Harrison. It seems strange that I should miss this so much, and it pales in comparison to being with my son but it was my outlet. That and I feel that I'm not contributing as much financially now, which I have always been able to do.

Scott's income alone is not enough to support us and when my maternity leave entitlements are done, well that's just it. No more help. Harrison has a few problems, yet he is not considered to be sick enough that we get Carer's Payment. However- he can't leave the house, has multiple little side issues and we have no other means of an income.

Further adding to my depressed state is the fact that we will have to sell the car. This puts us out of pocket just another couple of thousand dollars, that we also don't have - and leaves us without a car. They joy of the novated lease was great - while I was still working. No income means no money to pay off a car. But what do we do? And I am concerned that the fundraising that is happening won't quite be enough to cover Harrison's medical bills as time goes on.

I am so scared about the future. I don't want to lose our family home, but if interest rates keep rising and we have only 1 income we may well lose the house. No house, no car and a sick child.

It really sucks that if a person sticks a needle in their arm - the government bend over backwards to help them out, but those in genuine need? Not a hope.

Then add my stupid sister to this already difficult equation. She decides to run off the rails now. Why, probably cause the focus of attention is no longer on her. So instead of stepping up to the plate, she stuffs things up completely. And I feel guilty because Mum, while she is here helping me, then has Hope to deal with. Mum does so much for us - practically putting her life on hold to be here helping us, and I really love her being here and helping, yet I feel that I would happily throttle my sister right now for giving Mum so much extra stress. So instead of falling apart - like I truly want to do at the moment, I don't - Because Mum has enough to deal with right now.

There are days, where I wish that I could also choose my family as I can choose my friends. It would soooo make life much , much more simple.

Making Friends

We have been put in contact with another family in Queensland (QLD). The IDF of Australia are a foundation for parents and families to have contact with like families suffering the same disorders. Our Harrison as you know has ADA-SCID, while Harrison from QLD has 'IL7 Alpha Receptor Deficiency'. Another form of SCID and also a genetic inheritance.

We were lucky enough to meet and I have had the absolute pleasure of speaking to Tammy, Harrison's mum (Harrison is pictured left this is from around the time when he was diagnosed at around 11-12 months old. ) Strangely yes, he is a Harrison too.. and it gets even more coincidental that QLD Harrison's dad (Ivan) works for a telecommunications company as does Scott.

Our little friend left has had a BMT also, and was so much sicker than our Harrison, and really showed even on his sickest days strength and courage. He is smiling in just about every photo Tammy has sent me. I thought it would be great to put them on this site as encouragement. You see, this little boy went through an amazing time, and was critically ill for a time, but has pulled through remarkably well. He is now a 2 year old boy, who looks like any other, attending preschool too!! I am so excited by this - It gives me hope that our Harrison will do just as well.

To show you how well he is doing...















He's a picture of health here, playing and with his brothers.

What an inspiration and reminder what a lot of positivity can do to help along a situation.

I find it so comforting to have another family to speak to who have been through more than we have, but also through so much of the same experiences. What a lovely and amazing world we live in.

I look forward to a long and happy new friendship with little Harrison and his family and I wish them all the very best for the future.

Many thanks to Tammy who allowed me to pop a picture or two of Harrison on this site, such a valuable thing to do!!

Home... Sweet, Sweet, Home!!!

Home.. what a lovely place to be. The kids have been so well behaved and were so excited to see Harrison and myself as they walked through the door.

Harrison is very much not used to the chaos that goes with 3 children running around and making noise, but he is settling well. So far so good, no sniffles or disasters occurred in our first weekend. Harrison has taken to our old net bouncer, and I have a head roll under his head and shoulders to keep them forward so he is reaching in front of him. He is very happy to sit and kick, and has quickly learned to watch TV here when he's grumpy. As usual the Wiggles feature heavily in his TV viewing!! I still can't believe how little he is even now.

We had a couple of articles published this week to do with Harrison and his disorder. The local newspaper - The Express Advocate, and in the Saturday edition of the Sydney Morning Herald. The herald link is below ..
"A Rocky Start - but Harrison's Off Home "

It a lovely article and the picture is gorgeous.. I will eventually scan in teh picture for the site too.

There's no place like home ...

Well.. we didn't click our ruby slippers together, but we are home.

The amazing nursing staff... What does one say ? We were gifted with a bunch of amazing and talented people. Our small gifts and words of thanks will never be enough to really say thank you for all that was done for Harrison and our family.

It has been a very trying journey and this photo is representative of how far Harrison has come, having a picture near the nursing station with no gloves, gowns or masks in sight.

The Children's Hospital at Westmead have outstanding staff and facilities and we were just damn lucky to have been in the right place.

Home time was a very emotional time, Scott and I got very emotional saying our thanks, and I burst into tears after exiting to the hallway from the ward. 10 weeks of worry, stress and sleepless nights filled with questions swelled to overflowing and came out as tears. I remember saying I can't believe we are actually going home, and I am still as emotional today as I was the day we left. We are taking Harrison home, and there was a time where I thought that it may never happen.

Strange what you get used to - I became reliant on the nursing staff and have to say I am worried at being home and keeping Harrison germ free. But I know I have great people that I can call at a moments notice and ask.

The house looked so different. I felt like I was stepping for the first time into a new home again. Everything was so clean and tidy, not the house I remember leaving !!

Scott put up the ISOLATION sign at our front door. It's funny watching people who walk by read the sign, like we are in quarantine. But it's still so true, cause a bug will make him sick again and so we keep telling the kids to wash their hands, not go too near Harrison and cover their mouths if they cough, just in case.

The weekend will be different - I will be on my own with the kids most of the time, we'll see if I survive!!

When we came home there was so much stuff in our room , the car was full to the brim.. I still have to unpack all of it, scary how much you collect in 10 weeks!!

Reflections before home time

We are finally going home. I thought I'd do a little review...

Harrison before getting sick. 5 weeks old






Then Harrison gets sick and swells and needs oxygen.

Then he is off oxygen, still swollen and losing weight.

11-12 weeks old





IVIG and albumin help restore his system a little, skinny but looking a little better.

He learns to smile, he has the transplant and starts to gain weight.

16 - 17 weeks

Playing with the lumens of his central line .. his new in-built toy!! Its got the added advantage of keeping him still while weighing him :)

He develops new skills and enjoys tummy time. I think he forgot he is actually sick!!


20-21 weeks old



Little Peek- a - boo games start to appeal.. Plus he just looked damn cute there in his little bib!!

A Milestone is achieved. On 1/8/07 Harrison gets to leave his isolation room for the first time in 10 weeks. He is in his brand new pram that he used about 6 times pre-hospitalisation and it has a funky rain cover over it to keep him protected, but hey its freedom..

We had lots of photos today, with a video crew who came in for the hospital and captured this first milestone of leaving the room.


Then the local newspaper captured his image for a Jeans for Genes Day article to be published on 3rd August.

Then I took lots of photos and thought it would be lovely to include our wonderful "Ward Granny", Lyn - who looked after Harrison and showered him with love and attention.

Complications

I look at this photo and wonder to myself, what if I had taken Harrison to hospital a week earlier or even a day earlier. You see I was researching today meningitis and its complications. As we are reasonably sure Harrison suffered both Meningitis and PCP pneumonia, I thought, I wonder if he could have the hearing and vision problems because of that and not due to SCID. Either way the complications are a little daunting.

So many of Harrison's early symptoms seemed like he had the flu. We will have more testing in September and October for the complications that have cropped up.. But as a parent you can't help wondering - what if?

I also think look how far he has come, and am very proud of my brave little man and of how much of a fighter he is.