Garage sale for Emily! read on...

Hi all,
Saturday night and Emily is finally off to sleep, She usually goes down around 9 - 9.30, wish I could get her to go to sleep earlier, but I can't complain, she sleeps all night ( unless she is woken by a nurse taking her obs......).
Emily has had another trying week, she has ok days and bad days, today she was a bit happier.

But I feel that Emily is regressing a bit in hospital, the early intervention therapy  that she can have at the moment is limited compared to what we were doing before hospital, (especially being stuck in one small room), and it makes a difference.
Emily cannot crawl yet, but is happy sitting, and playing with my help.
I keep trying to think -'what does it matter anyway, she will be the way she is going to be, as long as she is happy it dosent matter', but I still stress about it.

I am a wee bit concerend now as Emily has not eaten any solids for a week now and living on breastmilk, her weight is dropping. She only weighs 7.5 kilos now.
She is having night feeds through her nasal gastric tube, they were breastmilk but I cannot express any extra now and so tonight she has started on night time formula feeds, with a suppliment added to give her extra calories.I hope this helps.
I don't think she has the mucusitis anymore so it must be that her tastebuds have all changed from the chemo - that and probably just feeling lousy, must make her not want to eat.
All I have to do is put the bib on and she gets upset.

Emily had another blood transfusion today as her haemoglobin was low, and she is very neutropeanic at the moment (this is normal, it is the chemo doing what it ought to). Hopefully her bloods will recover from here and she will feel like eating again soon.

Dad is going home to Dunedin to work tomorrow morning so I will be by myself for the week. We will miss him. - not looking forward to it at all, but hopefully the week will go fast and I will have company again soon.

To all my friends - yes you!
Brendan's work friend is having a garage sale just for Emily!
And Brendan's auntie has kindly offered to help out too, If any of you have anything lying around that you would like to donate, please ring
Gail - 03 487 9441 (evenings)
The garage sale will be held on Emily's birthday, saturday 13th november.
more information can be found on flyers at warehouse stationary and lighting direct, Dunedin, and i am sure the garage sale will be advertised in the odt.
just wish I could be there to be part of it...feel a bit helpless stuck up here in chch

Thanks so much guys, for helping us out

mucusitis, morphine and ... teeth!

It has been a full-on week with Emily, she has been up and down, giving us a scare and then a surpise ( as she seems to have been doing lately).
Emily had the rest of her chemo (it had been postponed due to her bowel op) on monday, tues, and then the chemo injection on weds, as well as another nasal gastric tube put down. Wasnt pretty, poor Emi, Im sure I wouldnt like having a tube shoved down my nose into my stomach either!, then a nasty jab in the thigh to finish it off, talk about scream!
Needless to say Emily didnt eat while on chemo, and wasnt all that happy, but still drank well, untill weds afternoon it all went downhill.
Emily started to refuse to drink, and by thursday morning she was so upset, I could see her mouth was sore, she wouldnt even move her tounge or swallow.
Emily has a common side effect of the chemo, mucusitis - where the lining of the mouth, throat, gut and intestine can all be affected, and ulcers form, can be very cruel so I am told.
Emily was beside herself, I think it is the worst I have seen her and it was quite upsetting. Emily was sent for another xray just to check things out, but everything was fine,
So out came the morphine infusion and nasal feeds, and finally she was comfortable.
Yesterday ( friday) things started to look better and the rate of morphine was lowered, as the day went on she got much better, and started eating again!
Emily had so much food I was amazed! I think her operation is making a difference already.
Then I was rubbing Emily's gums and noticed a tooth! yay! finally, her first tooth just stsrting to cut through. And here I was thinking Emily would be one year old and still have no teeth.  Good girl Emily!
(made me wonder tho if the teething contributed to her lousy few days.....but I told her she cant have morphine every time she cuts a tooth, wee madam.)
So this morning they stopped the morphine infusion, Emi is asleep at the mo so will be interesting to see if she still happy and ok to eat when she wakes up.
I am told she probably will get mucusitis again once the effects of the chemo that she has just finished sets in, but at least they can make her comfortable.
Looks like a nice day outside, I wish I could take Emily for a walk, I was hoping I can take her out on her birthday but have been advised probably not, She has to stay in her filtered room... man, think I am gettin cabin fever, they dont call it protective isolation for nothing do they!

daddy's girl

Emily is amazing

Emily's bowel operation went well, and it is now four days since she had it done, she is now off the morphine ( although had to have a small amount tonight as she was in a little pain, poor girl),she is still nil by mouth ( including milk) and is coping so well. I hope she can start drinking tomorrow, she really wants to, it has been a week since she has eaten or drank anything.

Here is Emily the day after her operation, sitting up! strong wee girl.

Dad had to go home that day back to work so that was sad, but it has to be done.
Emily was allowed to go back to her room in the cancer ward yesterday, feels more like home, much better than hdu (no offence, the nurses there were great).
So Emily's chemo will resume again next week so I am told. Her system has already reacted to the first two days worth, and Emily had to have a platelet transfusion this morning and more neutrophil injections.
Emily has a larger nasal gastric tube in at the moment to monitor the amount of bile is coming up, today they took it off free drainage to see if the gases in her tummy will work the other way - so she will use her bowels!, as they have gone on strike since the op, -thats why we are still not allowed to feed her, she needs to pass wind!
It was dress up as disney character day today, so Emily was a fairy princess - or maybe tinkerbell?

I can't believe how well Emily is coping with everything that is going on all the time, she really is a wee trooper, It is so cruel for a wee babe to go through so much, but she tries to keep smiling, dear wee soul. She is an angel.

 

Hit hard by chemo, and more problems arising!

Poor wee Emily, what a horrible few days we have had, this dose of chemo knocked her for six, she was very lethargic, almost like in a coma for two days, vomiting all the time, but there was another problem.
I have had my concerns about her tummy since she was born, with violent vomiting, then as she got older very smelly burping and fermented smelling vomit, I kept expressing my concerns with the doctor and paeds, but they were not concerned, put it down to reflux. ( I was not convinced).
So after the chch doctors getting a wee bit concerend about Emily's reaction to this lot of chemo, they sent her off for an xray, and sure enough, there was someting funny going on.
Duodenal web, almost always discovered at birth, and a problem found in down syndrome babies.
It basically means, the top of her intestine, near the bottom of her stomach, is too narrow, so food cannot pass through properly. Emily has developed a ball of old food that is sitting in her tummy with nowhere to go, ( might explain some of the feeding problems I have been having before chemo as well).
It will get more severe with time too, so Emily is to have an operation on friday.
She has to fast, as her tummy needs to be competely empty for op, so she is finding it hard, and is not happy with me at all, just wants booby. I feel so mean wish I could comfort her.
She is not allowed to eat or drink at all untill quite a few days after op too so not looking forward to that, poor wee bubba. (luckly they give her vitamins and minerals through her iv tube).
Other than that Emily is coping quite well considering, she has been sitting up again today and playing a wee bit, she is a wee fighter.
So I am off to the maternity ward again now to express some more milk,  will keep you posted.

Still waiting for neutrophils to rise....

Hi,
Ended up Emily didnt start her chemo last week, as her neutrophils ( cells that fight infection) were too low, they needed to be 1 before you can start chemo and hers were 0.5, went in for bloods today and they 0.8, so another test tomorrow and all going well, Emi should start on Monday morning.

The canterbury rugby team came to ronald mcdonald house on thursday and cooked everyone breakfast, Emily was fasting as she had to have a bone marrow sample, (that why she looks unimpressed...or it it because she would rather have seen otago players?....) anyway the food was great, a big thankyou to them.

also we would lke to thank the following lovely people,
Sarah Nolan, Cassidy and Nikita, S. Rusch, K J Harihari, Asha Norman, Ashton Lahood, Mark Jackson, McDowel family, Grae family and Sheree Honan,  thankyou all so much for your support.

Emily is doing really well at the moment and started putting weight back on, so in a way it is good that the chemo has been postponed a wee bit so she is more prepaired. For the meantime we will keep on making the most of the nice weather and enjoy the walks and picnics in the park.