Our Brody is finally home!! — The Bump
Special Needs

Our Brody is finally home!!

So he is beatiful and so very sweet. We knew he was going to have a heart defect and club feet but when he was born he had so much more wrong with him. There are too many to list but we are working with a geneticist and while he was still in the NICU they found out that he has the chromosome defect called DiGeorge syndrome. Has anyone heard of it? I know we have been blessed with this sweet baby but its been hard b/c no one in our family has been through something like this and they try to give us advice like he is a normal baby and they dont understand he has special needs. How are all of you dealing with those relatives that just dont understand? Thanks for your help.

 

Re: Our Brody is finally home!!

  • There are a few of us on this board that have babies with 22q deletion or DiGeorge syndrome. Know that you are not alone! I don't know how to deal with family members yet once he is home, as our son was just born a week ago and just had his heart surgery yesterday. We are looking forward to his homecoming and we hope that our families are not too overbearing.
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  • Welcome to the DiGeorge club.  I'm with PP, my little man is still in the hospital recovering so we have been able to fend off the hoards of family.  So glad to hear that you are just living and loving Brody.  As far as dealing with family, we tried very hard to prepare them for what was to come so that they would not try to do the "pretend he's normal" routine with us.  I know the situation is different, as far as knowing about the DiGeorge, but you did know about some of his issues so work from that.  Use the information you get from the Dr's and specialists to educate everyone.  I know for us that has made all the difference in stopping the endless stream of 'we're so sorry' and 'omg, how are you holding up'.   As far as we're concerned our Matthew is perfect, has been since the moment we knew about him (I suspect we all felt this way) and no dx, surgery or otherwise is ever going to change that.

    Keep us posted!

    ~Michelle

    JMA 2/26/09-9/28/09 MMA 11/22/10
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  • Congrats on Brody and being able to bring him home.

    Obviously this board will have lots of support and a DiGeorge family for you. As far as family goes, you just have to set up some ground rules and stick to them. While DS issues are different than Brody's, we don't allow a lot of visitors or anyone who has been sick into our home, it's in the best intrest of our family and Cash. We did have some family and friends that insist he will be fine and is happy and healthy, after awhile they have made their way out of our lives. It took awhile to educate those that stuck around. Try and give them as many informative sites and info that you can. We actually made a photo book explaining Cash and his disorder. It has been passed around a few times and was fun for me to make.

    Congrats again, I saw your pictures and Brody is beautiful!

  • Congratulations on your little one coming home.  Where are the pictures?
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