by Dawn (mom)
|
|
|
|
12-19-05
My daughter Erin was diagnosed with Moebius syndrome at 4 weeks old. She is
now 14 weeks old. She has talipes of her left foot and also she had feeding
problems which is how they were able to diagnose her.
Erin is a beautiful baby and so far isnt showing many signs of moebius. She
tries her best to smile and one side is stronger than the other. Her suck was
poor but now is as strong as any other baby though her lips dont close tight
round the teat so we support her cheeks whilst feeding her. Her tongue is
slightly turned to one side which makes it difficult for a dummy to stay in
her mouth. Other than that she isnt showing any other symptoms which i am so
thankful for.
Erin was in hospital for 2 weeks after her birth as she needed to be tube fed
until her suck strengthened. She is now taking small spoon feeds also which
she is managing quite well! She will need speech therapy soon but as yet no
therapies have begun.
Erin regularly gives us her wee smile and there is improvement in her general
facial expression every day! Whenever she was first diagnosed I was
absolutely distraught to put it mildly and it took about 2 months for me to be
brave enough to venture on to the net to find out about Moebius.
I have found it is important to not let it take over your mind so you can
enjoy your precious wee bundle and appreciate all the wonderful things they
do. So far I think we have been extremely lucky and that Erin is a mild case
of Moebius but the next few months will tell us more.
|
|
