q22? Please help

[snowymommy]

Hi I have a 3 week old daughter that I suspect has this.  We  just sent her blood for a FISH q22 test and should receive results on Tuesday.  This wait is killing me.  The issues she has are recessed jaw, wide spaced eyes, double hair whorls, feeding issues, large space between big toe and next one, widely spaced nipples, low tone in neck, trunk and shoulders, etc.  But those are the just the ones I have noticed.  Oh and she is overly sleepy!  I know I shouldn't complain, but it is excessive and worries me. 

I have been reading through old posts and saw a few from momtotwoboys and momtoalexissarah...I think?  Does anyone know if they are still around?  Or are there other parents who have traveled this road?

I am sick with worry and falling apart.  How did this happen?  We went from being ecstatic to devastated in just a couple weeks. The anxiety is almost unbearable. 

Thank you for your time.

[snowymommy]

I guess I mean 22q.

[sere234]

How are you doing? I have no experience with Q22 but do know how awful it is to wait for an answer about the health of your baby. I hope your wait goes quickly!

[askew]

Hi, try this site.

http://www.rarechromo.org/html/home.asp

Under information they have disorder leaflets. It's hard when you don't know exactly what is going on- but you can look at the 22Q stuff. 

Also try not to panic. Just love your baby and wait for the results. My dd has a deletion on chromosome 9. 3 years ago we were totally panicked and reading lots of disheartening information. She has written her own story and a lot of what we read does not apply to her. Even if your daughter has a chromosome error, there is no way to predict how it will effect her. 

Congratulations on your new baby!

[snowymommy]

Thank you for the replies. Anyone have any tips on coping with the fear and anxiety? Feel like I am drowning. ...

[sere234]

Stay busy! Don't let yourself think about it. If you can, find nurses or doctors to talk to about this disorder. Information seemed to help me wait more patiently. There's really nothing else you can do to keep away the anxiety

[snowymommy]

Yes researching and naking appointments has made me feel a little bit better. Being proactive always feels better than being reactive. I am naturally a bit of a worrier...so this has taken on a li fe of its own.

[askew]

Originally Posted by snowymommy 

Thank you for the replies. Anyone have any tips on coping with the fear and anxiety? Feel like I am drowning. ...

For me it was being proactive. Getting in therapy right away. I also found this organization early on. They made a huge difference for us. Having a home therapy program for me to do really made me feel like I was making a contribution to my child. As a natural born "fixer" it was so so great for me- and for her too! 

http://nacd.org/labels/genetic_disorders.php

[hdirks]

momtotwoboys doesn't get on here anymore, but she gave me her permission to give you her email and send you to her facebook if you would like to ask her some questions! I will PM you her info.