Wednesday, January 04, 2006

December Sylvie photos

Once again I have too many photos to fit on one page so there are two sets for last month here and here. As you already know from the previous post, the holiday this year was not the best but up until the whole hospital "adventure" Sylvie had a pretty good month, playing with her pal Sara, breaking in her new winter hat and mittens, sitting on her own for longer and longer periods (although she still needs help to get into a sitting position), and learning to wave AND clap. Theron and I are trying to teach her to blow kisses but so far she seems content to just alternate waving and clapping every few minutes. In the last few days, she's started making a new noise that cracks me up; kind of a Marge Simpson-esque growl of disapproval sound, but she usually makes it when she's intent on something. She'll also mimick me mimicking her so we'll be growling back and forth at each other, both grinning broadly the whole time.

Sylvie had her evaluation with Early Intervention and we should have a therapist calling us soon to set up day and time for her therapy sessions which will be an hour or so once a week. We're also hoping to get into a play group hosted by EI which contains "normal" as well as "special needs" kids which I think is great. Tomorrow morning, we're scheduled to see a gastroenterolgist to see if Sylvie's extremely slow growth is possibly due to problems absorbing nutrients and we have another appointment with a nutritionist on Monday. I've joined an online Noonan Syndrome support group and hope to help my friend Marla (Sara's mom) start up a local group as well. There was a long thread recently on slow growth and weight gain and I was reading it and thinking to myself, "EXACTLY." It really helps to be able to to talk to people who have Noonan or who have kids with Noonan.

So that's us right now. I'll try not to let such a long time go between now and my next post!


Noonie said...

hi its me again sorry to post so quickly again

but... i am trying to find your posts to the TNSSG LIstSerc on my e-mail

I am also part of TNSSG (joined in 97)

Welcome to the group and thanks for writing this blog

Noonie said...

thanks so much for writing - as i said to M is LOVELY to know people are actually reading my rubbish on this site LOL - or should i say musings from a mad noonie??!!

Please do introduce yourself on the list - it doesnt always have to be when we have a question - we also have a chitchat list for 'non-noonie' related stuff - check the website for more info)

thanks so so so much for writing!!!!

i am so sorry with your recent ER experiences with Sylvie - how scary that must have been. I am glad that she is out of hospital now. I had terrible probs with constipation - partly due to the fact that i HATED drinking fluids LOL.

better dash late here in the UK - thanks SO SO Much again and hugs to your beautiful little noonie and the family!

M xx
25 NS, Nr London , United Kingdom