Emma Update........

[Guest tracey and emma]

Just quickly thought i would post and let you all know how we are getting on.

We have tried to go with out IV feeding and have increased the concentrate of emmas neocate instead.

Which there was no suprise........It did not work, she started retching, coughing, gaging, chocking on food screaming in pain, would not sleep.. and then to top it all off she was exposed to some gluten at the end of the week. So she has had no sleep in 2 weeks, bless her.

If nothing else it has confirmed that her reflux is back with force. After having the fundoplication 2 years ago we were questioning if she had silent reflux now, especially once the fundo turned out to have undone it´s self 2 mths ago.

so she is back on reflux medication which after 5 days seems to finally be taking effect and she slept right through last night.

still coughing and chocking today but not as badly. so fingers crossed meds will work. I do know they never completley solved her problems before, so we shall see if 2 years on they might just work.

thankyou eveyone here for being so supportive. sorry i am not around much i do read your post just don´t always have time to reply.

Tracey

[Guest nini]

{{{{{{{{{{{{{HUGS}}}}}}}}}}}}}}}}}}}}

I wish I had some suggestions for you, but I don't... hang in there

[mart]

Tracey, thank God you're so strong. You take excellent care of Emma. She's so lucky to have such a phenomenal mom.

[TCA]

You are so wonderful for Emma. She's so lucky to have you. So glad she's sleeping some now. We had one of those weeks and it will kill you! did you see the PM I sent you? There's an enteral formula called Compleat Pediatric that might work for Emma. We tried it for Megan without success (but she can't even handle the Neocate), but it's supposed to be gentle. I think of you so often! Keep us posted.

[Guest tracey and emma]

Hi and thanks did not realise i was being strong just being Mum, but feel quite oohhh thats nice to be told.... so thank you put a smile on my face to day.

Yes TCA i did sorry should have posted back i have E-mailed it to Emmas dietision because we are germany not sure if we can get it but she is going to look into it and whats in it and get back to me, once she has an opinion on it. hard for her to because she is swiss and reading English takes a while some times.

thanks and i will let you know.

One quick question i read soya (contained gluten) is this right? seemed a bit odd to me so i have avoided any packets that say soya on them and soya sauce. should i be? i have not looked at the other ingredients on the sauce as yet though.

you are all really wonderful and do great jobs your selfs. Have to say i have been a nursery nurse for over 16 years and thought i look after childern all the time, It would be so easy to have my own........

How wrong could you be i ended up with 2 sick kids, 7 year of hospitals never knew being a parent would be this tough and i am so hospital and needle phobic Emmas consultant has picked me up off the floor so many times and the first thing he say when some one knew comes in is "NO suprises Emmas mum is not great with ....." then looks at me and says "no test no needles"LOL Still would not change having both my kids.

[TCA]

You are definitately a great mom, even if they do have to pick you up off the floor from time to time.

Soya- I think something may be lost in translation. Soy sauce may be what you're talking about. If so, most varieties contain wheat, but some do not. It's a brown liquid sauce eaten mostly in Asian dishes. This may not be what you mean, but it's all I could think of. Maybe some others have a better idea.

Have a great day!