Faith woke up today and her head was straight! She's been doing good while sleeping in a neutral position but usually as soon as she wakes up she tilts it down and to her left and is in some amount of pain. Today she kept it straight all day (although holding it still and not turning yet) and was in no pain most of the day!!
1 comment:
I hope you can see this comment :)
I have a 5½ month old daughter called Brá wil Goldenhar Syndrome, And her right side is effected. She has survived the most incredible and we are so lucky to have her today! She do also have a tracheostomy, and it realy saved her life. We live in a small country between Iceland and Norway called Faroe Island. She is the only one in the country that have GH. I would be so glad if you could contact me on Bjort-Jensen@hotmail.com because we don't know anyone with the same syndrome and we don't know what to expect in the future, so it would be so nice if you could write to me :)
All good wishes from us in Faroe Island !!
Post a Comment