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Saturday 27th

Very excited to tell you all that we were discharged today. The new pain drug that Joshua has been put on 'gabapentin' has been pretty much like a miracle cure for Joshua's pain. It does have one nasty side effect of making him a bit grouchy and emotional, but I can manage that. His blood count dropped really rapidly this time and he needed blood today, but that's all expected the further we get in.

it was fabulous seeing Georgie woo and Daniel this afternoon, I missed them so much! Joshua was so excited and they have just played like crazy ever since we got home. 

Mum commented tonight that Joshua looks the best he has tonight, since the chemotherapy started. I agree, the gabapentin has literally changed his little world, it goes to show how much pain he was in, because the difference is night and day. He's tolerating his feed, we just had a rough start to the morning because he lost his feeding tube and it had to be replaced, which is always rough on us both.

But it's good to be home! I kind of start to walk the floor like a caged animal, up there. A lot of the Mums comment on their relationships with their kids and how it changes with the fact you are Mum/Nurse rolled in to one. Joshua does the I want you/go away! thing a lot. He had me in fits of laughter yesterday, but he was so mad at me!

It started with him waking from a nap, his body is constantly awash with IV fluids, so unless he sleeps with a nappy on he's bound to have a wet bed.  this is really hard on a wee boy who was totally nappy free before this. we kind of have two 'last bastion' issues, Joshua and I. The first is wearing nappies in bed, definitely a no go during the day and an issue of serious negotiation every night, often involving screaming, crying and some fisticuffs (none of which is me). The second is the all coveted truck tshirt which must be worn at all times!!! Wee on tshirt is not a reason for washing tshirt. Ever.

Unfortunately, Mummies have different ideas about these things. When Joshua awoke from his nap yesterday afternoon, there was win fact some wee on his tshirt. I steeled myself, 'Ill have to take him off and wash him Joshie woshie'. Truck tshirt is a him, and is spoken of like a family member. Fisticuffs, screaming, some wrenching ensued. I tried to negotiate, 'I'll just wash the wet bit' I tried. But no now I had Made Him wet. It was my fault and not the wee.

I wound up outside the room, cowering, afraid to suggest anything else. My friend Mandy came along. Joshua was quite audible. I explained the situation. Mandy hovered as I went back in for another go. By now Joshua had dragged himself and his pump into the bathroom and was trying to put his Tshirt on. He looked so comical, we couldn't help it, both mothers cracked up laughing. "don't laugh at me! " Joshua screeched. I was profusely apologising. But he pulled the door shut and the next thing I heard was...'I've put my tshirt in the toilet' and then "I've really done it now!!!". 

So what does mother do? Washes it by hand as I do everyday. Dry it over the afternoon and at 9pm he's sitting up in bed as sweet aspie, in his nappy and his tshirt!

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Annemarie | Reply 14.05.2013 21.40

Thanks Sandra, saw your big bald baby today, glad you guys had a nice time in the SI.

Sandra. Rohrlach | Reply 09.05.2013 09.06

Thinking of you al and the things that set you off.It happens a lot just keep your chin up.so pleased you are at home,hope things just get better for you all .

Becs | Reply 29.04.2013 12.40

You guys are such a crack up!!!! So glad to hear you are home and hooray for Gabapentin!!!! xxxx

Shirley Wilson | Reply 28.04.2013 19.55

Glad to hear things seem to be going better this time and that so far he has been better with Gabapentin, PTL. I can just visualize the T shirt incidence

Bridget | Reply 28.04.2013 09.22

You are such a great mum!!!!! I don't suppose you can find another Truck shirt anywhere? Hugs to you all....

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Latest comments

13.07 | 21:33

Hi Anne-Marie - I found out about all this following a link someone liked on FB. I think of you all often. You brightened my life xxxxxx to you all.

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04.06 | 18:38

That was and amazing story so pleased you are all doing well Kind Regards Sandra Rohrlach

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08.03 | 17:48

Well done to all. Annemarie I did send a friends request on FB for "Josh updates" a couple of days ago(Mike Wish) but no reply.
Cheers to all from WA

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25.09 | 20:01

We are staying at CCF Arrowtown, and we read about your family in the guestbook. You can read about our medullo journey at www.rorygardiner.co.nz. xox

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