[ Post a Response | Trisomy 22 and Misc. 22 Interest Board ]
Posted by Beth Helfrick on 7/16/2008, 9:55 am, in reply to "5 month old Daughter with partial 22 trisomy, looking for others with same situation"
68.81.35.109
I am not sure of where I should be at on this page .But I have a son that was at 35 weeks and he to was born with digeorge syndrome and has many problems. He had heart surgery at 4 days and he has lung problems and now on a vent , he has feeding tube and is still in Hershey medical center.Hoping to bring him home July 23 but scared to death. He still has many heart problems and has had trouble gaining weight . I also have for other children and I feel like life is spinning out of controlI wont do what is best for my son but I feel very alone. The doctors dont tell us much and we feel like they keep things from us . Not understanding how very special Samuel is to us and how much we love him. So if any could talk with us we would be more than gald to hear what you have to say .email me at daisy29@comcast.net
--Previous Message--
: Hi there,
:
: My 5 month old daughter was recently
: diagnosed with Partial 22 Trisomy, and
: I am looking for resources to expand
: my knowledge and families to share my
: experiences with.
:
: She is 11 lbs and 20.5 inches long.
: She hasn't grown much since she was 2
: months old. She is a reflux baby and
: we are getting a g tube put in and a
: fundalplacation in the next few weeks.
: She was born at 35 Weeks at about 30
: weeks gestation. She has a weird echo
: on her liver, but otherwise she is OK
: so far. The Doctors say she is unique
: and we really don't have any case
: studies to go off of yet...
:
: I hope to connect with someone who has
: experience with this.
: Sincerely,
: Jayme Southard
:
Visit our home page, http://www.nt.net/~a815/chr22.htm
