General Chat

Linda and Tec have deserted us, Amanda. Linda must be waiting on her OH and I bet Tec has fallen asleep :-D

No snow here thank goodness

Do you think Tec has nodded off again :-D

That is exactly what I told my Granddaughter in a message two moments before her uncle walked in here covered in snow ! lol

It's not snowing here :-D

Hello Sue :-D

I'm sure the conference in Seattle will be very inspirational for you all Linda .
A good opportunity to find other families with understanding of the syndrome .

It is snowing here !

I think it would be great to be able to attend the conference and get as much info as possible.

We find that although there is much known about Downs Syndrome there are still misconceptions about how much children with DS can achieve. We were told that Aimee wouldn't be able to read or write. Nonsense. Although she is behind all the children in her class she still manages to do well. We are constantly amazed at what she can do as opposed to what she can't do. I hope that is the same for Esme. I'm sure she will surprise you all.

The main association and research is based in America. They have a large conference every two years, the last one was in Florida, but this time it is in Seattle in July, so a major family trip is being planned

Linda do you know if there is better understanding of Esme's condition in America?

Well it is good to know that Esme has escaped the terrible problems and I hope that nothing crops up in the future for her , it must be very difficult for the Drs that are trying to assist if they are unfamiliar with her syndrome .
I expect that your daughter and yourself will end up teaching the medical profession on the subject to some extent , as I don't doubt you are both researching it as much as you can .

Hello :-) All these gorgeous babies :-)

I said to Joel awhile back that my four grandchildren are all grown up and we don't have any babies anymore. He said "why don't you have a baby Grandma - Grandad would be very happy". I think OH would have a heart attack :-0

Linda - sorry to hear your OH is still poorly - best he stays tucked up in bed. I hope you don't catch the flu germs.

Yesterday we took it easy in the morning but the afternoon was so nice we decided to do a job in the garden we've wanted to do for awhile. Outside our back door door we have a small porch that leads down to a covered area. We don't do much with the porch so we tidied it up and put one of my chairs there and a small table. On a summer morning it's cooler to sit there as the sun shines straight into the covered area until about 11am.

Hello Diane!!

While it is a terrible syndrome, so far they are lucky because she doesn't have any of the terrible problems some of them have.. It changes ll the time though,so it is just one hospital appointment after another. It is so rare that non of the doctors have dealt with anyone with it before

They all learn at different paces anyway don't they , our Alice ( who will be three soon ) is still a bit hard to understand , I thought at one point that she was going in for a bad stammer but thankfully that has passed .
Our Isla is still wearing 18 months - 2 years clothes half the time and she is over 3 years .
I guess in Esme's case her body has difficulty absorbing the food ?

Hopefully she will talk, she is too little yet in any case, she is very vocal as she should be at this age. She is still tiny, she still mainly wears age 9-12 month clothes, although she has a few larger ones. she just doesn't put weight on despite having an incredible number of calories every day

It will be wonderful when she can communicate , not that I don't doubt she can't make her wishes know in her own way :-)

I have a friend , with a Grand daughter that is tube fed , the little girl is nine or ten now , the medical people did not think she would get this far in life , she is a beautiful girl with the most glorious smile ever :-)

She is cute, still fed through the tube, but she can sit up and she is learning to sign, she can do about three signs so far which is good as she is only eighteen months

Your not wrong there Linda :-)

How is Esme getting along ?

You get used to the wires Amanda, but the hard chairs in there are another thing

Hello Linda , it sounds as if bed is the best place for your OH , I hope he gets a good sleep and is feeling a bit better tomorrow and I'm glad that Eve is just getting in on the act ...lol

Hello Tec , yes the babies seem to be doing well , Orion has jaundice but a lot of new babies get that , he has been under the blue lamp today . They are both being a bit sicky and the neo natal staff are trying to sort their feeding out .
I'm looking forward to the day they are not attached to any monitors , it is un-nerving to hold a baby with wires and such like attached . Their Mum looks tired but all in all she is coping very well .

Hello Amanda,

You have had a busy day.
It was freezing here too, so I hid by the fire.

I hope the new arrivals are doing well, and their mum too.

Hello Amanda, I saw the photo, he is so cute

OH is back in bed, he has tried to get up a couple of times, but hasn't lasted on. I think Eve was just trying to get in on the act, she isn't that ill :-D