A year since my dd's diagnosis

[marieangela]

It's hard to believe that it has been a year already since we found out the diagnosis of cri-du-chat for our baby girl. I'm just getting ready to make a bunch of appointments for her. Heart and eyes need checked again, and back to the genetic specialist and the diagnostic referral dr. I am amazed at how well she is doing after my initial google search of the syndrome when we first found out. At this point, no one that I haven't told knows that she is anything but an average neurotypical baby. At fourteen months, she doesn't "talk" much and she is not yet walking on her own, but she does interact with people and walk while holding onto things. As she gets older, if she is still delayed in speech and not walking, I'm sure I'll get all the questions. It is a bit strange to know that I have a sn child and have therapists come to my house weekly, and then hang out after school at the playground with parents of my first grader who have no idea. I just didn't feel the need to tell casual acquaintances. Not sure what I really want to say. Just rambling a bit.

[aydinsmama]

Google can be so so scary, can't it? My daughter is almost 5 and was diagnosed with a chromosome deletion as well.. when she was 8 weeks old. All the what-ifs and possibilities of issues were so overwhelming and scary when we first found out.
I like gathering as much info as possible, but I think I sometimes drive her doctors mad saying things like "well, I googled and read that others say this worked for them..." LOL

I am glad to hear she is doing well! I hope all your appointments go well and are easy enough for her.

[2boyzmama]

I also have been guilty of over using Dr Google

It's such a fine line between hope and reality. I'm so happy that she's doing so well!!!

[askew]

I am glad to hear you made it through the first year. I remember when you posted about your DD. I was pregnant at the time and they were wondering about issues with my DD, who also ended up having a deletion. I am so glad she is doing well. My DD had a set back at 6 months and is now clearly behind her peers, and it is hard to navigate the whole other people thing. I often want to lie when they ask me how old she is. I hope that your DD continues to amaze you!