Amelies second opinion and our visit to the hospice

October 9, 2006

Yay Les!

That's news we like to hear! Way to go! That exhaustion is probably tension

release-and lots of it! LOL.

in Ma. (, 21 yrs)

October 9, 2006

Hi all

FANTASTIC DAY ON FRIDAY!!!!!!

Well first and most important Darren took Amelie to see the surgeon at Alder

Hey, he was surprised that Amelie was even suggested for dissociation,

reasons being, she is very well thriving nutritionally (on a diet as we

speak) even though she is being fed in her jejunum, he said she was clearly

very happy and not in any discomfort or pain, her tummy was soft to palpate,

and he said the operation is a last resort in his opinion, he said he has

performed 30 gastric dissociation and 5 have died, he also said at this

present time he would not even consider re doing her nissen, he said 'why

rock the boat' and that we should take a chance with winter and see how she

performs, he reckoned that she was being medically managed with her

lansoprazole, and to try and avoid surgery. felt like bloody rejoicing when

Daz phoned me, there is no doubt now that we should go with his opinion

although we are waiting to speak with Amelie's paed consultant who referred

us to him, she too must have felt the same way. He did suggest maybe when

the lung situation improves to go to theatre for a mic-key button straight

into her jejunum, said this would only take 20 minutes, to be fair this

first surgeon suggested dissocaition when she had just had the pulmonary

arrests, but what I dont understand is why he didnt change his mind when he

saw us last knowing she has been home 6 months!!

Isn't this fantastic news for a change!!!!!!!

Francis house Hospice was incredible, they even arranged care for our other

three girls, they loved every minute and didn't want to come home today! and

as for Darren and I, we did nothing for three days and nights, strangely we

feel exhausted, but its was just the tonic after no respite in over a year,

we go back again in December and we are already counting the days down.

hugs to you all missed the weekend action on here will try and catch up this

week.

love Les, life is just bloody brilliant today!!

October 9, 2006

So so so so happy for you - get the breaks when you can and go with your gut

(sorry for the pun) when it comes to the surgeries...

Hugs,

>

> Hi all

>

> FANTASTIC DAY ON FRIDAY!!!!!!

>

> Well first and most important Darren took Amelie to see the surgeon at

> Alder

> Hey, he was surprised that Amelie was even suggested for dissociation,

> reasons being, she is very well thriving nutritionally (on a diet as we

> speak) even though she is being fed in her jejunum, he said she was

> clearly

> very happy and not in any discomfort or pain, her tummy was soft to

> palpate,

> and he said the operation is a last resort in his opinion, he said he has

> performed 30 gastric dissociation and 5 have died, he also said at this

> present time he would not even consider re doing her nissen, he said 'why

> rock the boat' and that we should take a chance with winter and see how

> she

> performs, he reckoned that she was being medically managed with her

> lansoprazole, and to try and avoid surgery. felt like bloody rejoicing

> when

> Daz phoned me, there is no doubt now that we should go with his opinion

> although we are waiting to speak with Amelie's paed consultant who

> referred

> us to him, she too must have felt the same way. He did suggest maybe when

> the lung situation improves to go to theatre for a mic-key button straight

> into her jejunum, said this would only take 20 minutes, to be fair this

> first surgeon suggested dissocaition when she had just had the pulmonary

> arrests, but what I dont understand is why he didnt change his mind when

> he

> saw us last knowing she has been home 6 months!!

>

> Isn't this fantastic news for a change!!!!!!!

>

> Francis house Hospice was incredible, they even arranged care for our

> other

> three girls, they loved every minute and didn't want to come home today!

> and

> as for Darren and I, we did nothing for three days and nights, strangely

> we

> feel exhausted, but its was just the tonic after no respite in over a

> year,

> we go back again in December and we are already counting the days down.

>

> hugs to you all missed the weekend action on here will try and catch up

> this

> week.

> love Les, life is just bloody brilliant today!!

>

October 9, 2006

Lesley-

I could cry joyful tears for you!!!!!!!!!!! What a wonderful weekend

complete with good news and respite! Of course you know we'll all be

praying that Amelie stays healthy this winter. Perhaps she's rounded that

last winding corner to finally see the light at the end of the tunnel :-)

Michele W

Aubrie's mom

October 9, 2006

I am so happy for all of you!!!

pam