Welcome to Holland

[Baby~amore`]

LouLou I too am wondering how you have been and Lily ... please drop us a note to say how you are going.

Yes , I have read this before ... it is touching.

[loopylulu]

LouLou I too am wondering how you have been and Lily ... please drop us a note to say how you are going.

Hi, I am Loulou (couldn't remember my login name so registered again as loopylulu).

We are doing okay. Some days are better than others TBH. I am tying to be brave at the moment and "suck it up" (my new mantra) as I was finding it too easy to lay in bed bawling Easy but extremely unproductive.

Lily is good. She is starting to sit on her own a little and eating solids and she will crawl at hydrotherapy in the pool so knows what to do, just needs to strength to do it. She is very smiley and lovable. She came off the ng tube very quickly and came off oxygen in March.

I have noticed that not many people name the syndrome/condition their child has. Is that out of privacy/fear of being judged/something else? Lily has a syndrome that has been getting a lot of bad media (you know the story, if they are going to show someone with a conditon on tv it has to be the worst case sceanrio and sensationalised) so I am not that keen to name it just yet.

Thanks for thinking of us Am enjoying getting back into the forum