View Full Version : Good news and bad
12-06-2006, 05:37 PM
I just wanted everyone to know that Caty had her neruologist appointment. I am happy to say she has been ruled out for Craniosyntosis. I am not happy to say that they still say she has a "skull deformity." I hope this doesnt mean I dont have you guys support:( i know you guys probably will still allow me to stay. I am so confused. Caty still has to see a neurosurgen January 22nd. They say she will still need surgery. The explanation I got was that the back left plate of her skull never "rounded" out like it was suposed to. So they will still have to go in and do surgery to her skull. :( I am so afraid for her. I hope you guys still accept my family because we are still going to have to go through terrible times. Thanks alot for you guys support!
12-06-2006, 05:45 PM
Of course we'll still accept you! Granted, it's not a diagnosis of craniosynostosis, but she's still probably going to have to have a similar surgery to what our kids have been through, and you are still going to need the emotional support we can offer! So stick around and we'll help all we can!
12-06-2006, 06:30 PM
Of course you can stay! You know what the emotions are like going through a possible diagnosis, and that is beneficial to all new members.
Something to think about... My Ex's daughter's back plates never rounded out either. They were going to put her in a helmet, or, do surgery to round it out. Since they were evenly flat on both sides, they decided to do nothing. She is now 3 yrs and you can only tell she has a flat back of her head if you feel it or if she wears a pony tail, her hair covers the "imperfection".
Is a helmet not an option?
12-06-2006, 07:11 PM
Of course you are welcome. We will offer all the support we can, and the knowledge you learn from your diagnosis will probably help a future family! I'm assuming the surgery will be very similar to a cranio surgery (if not the same).
Good luck w/ your NS appointment, maybe then you can get more answers! :hugg
12-07-2006, 09:10 AM
yes, we want you to stay with us.
i agree, the surgery will most likely be the same as our children.
were here for you regardless.
12-07-2006, 12:58 PM
We are here. This is a wonderful site for support, no matter what the problem is. I wish you the best. Keep us informed.
12-07-2006, 02:00 PM
I am sure it is hard - if you are like me it's easy to feel like you are always getting a surprise or new/different information with each appt. I am so glad you will stick around and keep us posted. Take care!
12-07-2006, 02:09 PM
Please stick around! You are still facing possible surgery and I am sure the surgery is the same as cranio surgery too! Even if not, the emotions will be the same and you can vent here all you need! Take care and keep us posted.
12-08-2006, 05:57 PM
Well I took Caty to her Kidmed appointment thursday. They think that Caty is hearing impaired in her right ear. I AM GOING NUTS! my thing is I read that the left side of the brain controls the right side of the body. If that is true then could her head being flat in the back of the head have caused this? She also will be starting physical therapy. Caty will be 4 months old on the 16th and she still cant hold her head up. I know that all kids are different but I have that mom instinct that their is more wrong. Who knows i could be wrong. I just want her to be as healthy as she can be and if she has to be checked out for so many things then so be it. :icon_mrgr Everyone on here knows what i am talking about. we all have that insticnt when soemthing is wrong and a good parent makes sure that it gets checked out and fixed.
Powered by vBulletin® Version 4.1.4 Copyright © 2013 vBulletin Solutions, Inc. All rights reserved.