Well I cannot firstly believe it has been two months between posts. I am so busy running kids around, doing physio and speech therapy with Harrison, taking the kids to school and gymnastics that i hardly have time to sleep!
Things are ok at the moment. Harrison is still having Intragam every month and his cell counts are still - well frankly - crap. His lymphocytes are steadily dropping point by bloody point - I was sort of hoping that a year into this we'd at least be seeing some positive improvement, immune wise, but NOOOOOOOOO.... We have the next lot of big blood testing to be done at Westmead Kids on 29th July, and on the same day Harrison sees the eye Dr. to find out how his vision is going.
Harrison has recently seen the neurologist who is arranging an overnight stay in September for a video EEG to be done, to see if these movements of his hands and feet are truly epilepsy or something else. We are otherwise happy with his progress.
On 22nd August we have the D day - as far as I am concerned anyway, that is the 1 year post transplant review and find out all the blood test results and see if this transplant is actually working and how long it will take, if it is, to gain some sort of normal immune function.
Harrison the last few weeks has really come along leaps and bounds in terms of his physical development - he now walks - although it rather looks like a very drunk man, and he takes as many sideways and backwards steps as he does forward, but nonetheless he is walking - a major step for him - just shy of hitting the 16 month old mark. He also talks - mostly babble but there are some definite words... in order of when they first made their appearance are :
"Dora", "Map", Mum, dad and Nan all at the same time and now he says Yep and No - although no comes out as NAAAAAA. Pretty impressive hey - can you tell he LOVES Dora the Explorer? He also dances and gives huge wet and slightly toothy kisses. Dancing happens at any time he hears any kind of music, and looks more like he is doing a set of squats but its also very cute as he bops even when sitting down too ! He gets too shy to let me film it though, so my mission this week is to catch him dancing on the sly for you all to see.
Our friend Ella in Singapore had a BMT ( from cord blood ) the same day as Harrison - and with some pretty big complications to get over has now got a fantastic lymphocyte count of 2.8 - so once they cycle her down off the immune suppressing and anti rejection drugs she will be normal and I think this is something we fan now aspire to! Well Done Ella, Narelle and Fergal, you made it this far :)
On a note re our car situation we were very lucky to come across a 7 seater car, that the Trust fund purchased for our family, BUT.. there's always a BUT... we were promised by another very large foundation help to assist in the purchase of this car, and at the last second - and after buying the car on their word they'd send funds in compensation - they reneged, and the trust has worn the entire cost of the car for our family. So I am extremely grateful and thankful that we did all that fundraising in order to be able to help out for this sort of thing, but as the receiving family I also feel incredibly guilty that the trust has had to do this too.. I cannot get into my head just how bad our situation is - and still feel that we don't need this car - even though in truth it is a blessing to have.
So the next fundraiser we do will be super special to me as I really want to be able to ensure at least some of the car funds are replenished.
What else, my sister had a baby 6 weeks ago, a bubba called Seth - he was only 5 pound born but is now a boomba at 9 pounds and mum and bub are well - my first nephew! YAY :)
Also and i don't know how else to write this down, and it has been ongoing for some time, but Scott and I are separated, and I don't know what else to say about it - except I am very sad that our relationship was not strong enough to survive all of what we have been going through. Not only in terms of Harrison's illness but the financial burden, relationship stress we were already under( and the like) that the whole child-being-sick situation brings with it. I guess life has to go on, for the kids sake at least as they don't need me falling apart at the drop of a hat when I get down about things, and so like every day of the last 12 months I put on a happy face and keep on pressing on.
Lately the way Harrison's blood counts have been I find it so much harder to keep smiling and find once the kids are in bed and I am alone I sit and try to clear my head and make sense of how everything has panned out. Lucky for me I have a girlfriend who is awake in the middle of the night my time, so I can call her and lose the plot for a time and get on with things again as normal. I don't want the kids to see me too upset as they think it is them I am upset with, and they have had enough to deal with this last 12 months.
My biggest worry now is that things are not going as well as planned for Harrison and maybe he may need a second bone marrow transplant - who knows 22nd of August is too far away right now - and I probably will get little sleep til that day is over.
Until then, physio for Harrison and intragam and Dr's reviews.. and gymnastics for the 3 big kids will continue on as normal, or as normal as things can be when you have four very crazy kids!
I will update pictures soon, all in the other computer which has decided to have a moment - for a week now :)
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I haven't checked on Harrison in a little while because I have been so busy with Katlyn. From what I'm reading, it seems as though he's doing excellent. Just to let you know. I feel as though our children are extremely special. They have to endure so much more than everyone else, but still continue to put a smile on their face and amaze us.
Your right. Having a sick child is very hard on a relationship. My hubby and I have had it out many times over the past couple of years. It really isn't easy. I think the hardest part for the two of us was that it was always so hard to talk about how we felt and how scared we were with anyone else but eachother. We wanted to protect everyone else. So we honestly took everything out on eachother. At times everything just seemed so overwhelming and while one of us was strong the other was weak. We were very lucky one of us was always strong. If we were both at a weak point, I don't know what would have happened.
I guess what I need to say to you is that we are all human. It really is okay for both of you to be upset, angry fustrated....whatever you may feel from time to time. It really is a rollar coaster.
Having a sick child has to be one of the hardest things in the world. Don't lose yourselves. Be strong. All of this will pass and we will all be able to look back on these days with a sigh of breath and be relieved that everything is okay. But like I said just try not to lose yourselves.
Harrison is going to be okay. You need to know that. Wheather he has a new transplant or not. He's a fighter.
I'm sending good vibes your way. Hopefully the separation is only temporary. At the very least I hope both of you try your best to support the other....as well as have outside support.
Stay strong. We are thinking of you guys
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