View Full Version : Hello.....
10-22-2007, 12:33 PM
Hello Everyone! I am SOOOO excited to find other parents with Cranio Kids! It is a very comforting thought to know that I can talk to someone who knows what we are going through.
Let me tell you a little about our family. We have 2 daughters and the youngest is our cranio kid. Kenley Grace was diagnosed with saggital before she was born and then it was confirmed shortly after she was born on March 30. She had surgery on June 13 and it went extremely well!
I wish that I had found this site earlier in this process but better late than never I suppose.
I was wondering if I could hear from some parents who are in the post surgery phase. Kenley's head is starting to feel a little bumpy and I'm not sure what to think. I'm hoping that I am just being hyper sensitive but I just don't know.
10-22-2007, 01:16 PM
Welcome to Cranio Kids! there are several recently post-op parents here so I'm sure that you can get a lot of experiences. I can tell you that even though Dillon is almost 3 years post op, I still notice lumps and bumps changing on his head. :hugg
10-22-2007, 02:03 PM
hi there and welcome to craniokids, im sure everything will be alright i think us as parents have the right to hyper sensitive with our babes, and im sure like katie said youll get lots of advice xx
10-22-2007, 02:05 PM
My son just had surgery on September 7 for sagittal (he was 3 months old) and he had the extended strip craniectomy (sp?) his head has developed some lumps and everything but the NS told me it would happen, he also explained that when the bone grows back it doesn't grow in one piece, he said it kind of grows like little islands so I would feel these things. :) Hope this helps
10-22-2007, 03:57 PM
:welcome to craniokids im really glad you've found us. My son Charlie had Metopic surgery 6 weeks ago and already i notice little bumps apearing where his scull is healing back together. We were told that he would get little lumps & bumbs so im not shocked by them really. I look forward to hearing more about your family & maybe see some photo's. Take care xx
10-22-2007, 04:06 PM
Hi there and welcome to Cranio Kids! My son had his surgery on July 7th. He had a strip craniectomy and is quite bumpy. Within 6 weeks of surgery, he had what are called bony islands (completely normal) which is where the bone begins to grow back in little spots. It's really amazing how the body works. Now, everything is mostly solid but there are still "openings" and many lumpy spots. I don't know what kind of surgery your daughter had (cvr, craniectomy, etc..) but from what everyone seems to say, all of the lumps and bumps are completely normal. If you're concerned at all don't hesitate at all to call your doctor. :)
10-22-2007, 05:48 PM
:welcometo cranio kids!!! Glad you found us, my baby Fiona had metopic surgery almost 1 month ago. I'm noticing bumps everywhere....I was scared about them until she had her follow up and we were told it was totally normal.
10-22-2007, 08:10 PM
Thank you all so very much for such a warm welcome! All of your children are absolutely beautiful!! Kenley had a strip craniectomy on June 13th. They bounce back so fast, I couldn't believe it! As soon as I figure out how to post a photo I will post one of our angel. Also, her scar has faded a lot but there are still 2 red marks behind her ears. Any suggestions on what might help it fade? I know it will fade on its own but I'm not known for my patience. Thanks again!
10-22-2007, 08:42 PM
Andrew's scar is pretty wide and red on the sides. I bought Mederma for kids but the instructions inside the box said not to give to children under 2. So...I'm not sure if it's safe for the little ones. My mother-in-law says I should use Vitamin E but I haven't tried it yet.
10-22-2007, 09:06 PM
i had surgery 27 and a half years ago and i still have bumps on my head and as far as the doctors say i am normal
"my wife wants a second opinion" lol
10-22-2007, 09:25 PM
Will beats my story! Matthew is almost 6 years post op and he still has lumps and bumps. His NS said he always will but if it becomes a problem for him they can be shaved down with a much less invasive surgery. That will be his call when he's an adult.
10-22-2007, 10:12 PM
Hi. Welcome to CranioKids! I can't comment on the lumps and bumps discussion (Gavin hasn't had surgery yet) but I just wanted to welcome you to CranioKids!
10-22-2007, 10:27 PM
Hello everyone. I just added a photo of Kenley Grace. This was taken 3 1/2 months post op.
:colors Hi and welcome I like Will had surgery 27 years ago and I still have bumps too. I wouldn't say I am normal but the bumps are lol.
10-23-2007, 12:44 AM
:welcome to cranio kids. We are glad to have another great family here. I love to meet new people. My daugter Miriam still has bumps on her head. Everytime I go in they tell me that they are normal. I am starting to really wonder though. We go and see our new PS and NS next month so you can bet it is something I am going to ask. I think everyone here has this though. So, it must be common.
10-23-2007, 06:07 AM
She's beautiful, really is a little angel xx
10-23-2007, 09:31 AM
my son also has redness behind his ears, this is mainly because that is where he claws the most! :) He also has some stitches that havent dissolved yet either so that may play into it. :) I would ask the NS but I know he told me to put neosporin on my sons :)
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