Picked Up Xrays Today

[momforthe1sttime]

Okay, so I picked up Trenton's xray pics today b/c we need them on the 18th when we go to NS. Now, looking at these pics, and I am no dr, but the whole pic is black where the skull is. To me it seems that maybe these shots are inaccurate. My dad looked at them too and saw the same strange thing. He has had a million xrays done everywhere on his body. Even where Trenton's face is, it just seems weird the way the shots were taken. I definately want a 3D Ct to confirm this diagnosis of cranio. I also had a dr. appt today and my little man came with me. It was with my obgyn, whom delivered my little guy. He said that Trenton looks awesome and his head looks wonderful. He said he grew into his head and that he looks like a "normal" little boy. Coming from a dr who delivers babies each and everyday, that made me feel good. However, we are still going to see the NS to make sure. I do not want to be ignorant about this whole ordeal, I just want confirmation. Looking at his xrays though, it makes me wonder. If all sutures were fused in my son's head, I think there would be many facial and/or body abnormalities. I am so frustrated. The 18th can not come quick enough!:crazy

[Katie]

Ugh, the waiting part of Craniosynostosis is so fricking hard! I know just how you feel. I'm sure that if all the sutures were fused, you would definitely know it. It doesn't seem like his head would be able to grow and his development would be severely delayed. All fused sutures is called Cloverleaf skull (can't remember the German medical name for it) and they have very distinctive features (one being a head shaped like a clover leaf). I hope that the 18th rolls around very fast, and a CT shows little Trenton is just fine. Either way, we are all here for you :hugg

[vancesmommy]

I agree with Katie, I am sure if all sutures were fused you would know! I will be praying for good news!! Again, we are all here for you!

[momforthe1sttime]

I just want everyone to know how much the support means to me. I am really struggling on a daily basis with this whole thing b/c of the waiting involved. I just want my son to be okay and I scared to death of what his future holds.
I do agree with Katie also. My son has no delays as of right now. Almost 3 months old and he seems to be moving right along. He's my little champ. I just wish I could come to grips with this. I thought I was doing well last week and now have fallen apart again this week. It's a nightmarish roller coaster ride!
Thanks again for all of your kind words and support. I really need it right now. My hubby thinks something is going on with his sutures, but doesn't believe it like I do. So, that makes it even harder! UGH!:mad:

[Jennifer]

:hugg 's to you. This is such a trying time for everyone- and everyone handle's it so differently. My husband (who really is the sweetest guy!) didn't feel the need to talk about it. Once at diagnosis and then right before the surgery- but the 2 or so months inbetween he didn't really want to talk about it- "let's just not worry about it and go on with life for now"- I HAD to talk about it and learn more. This site was my lifesaver. The only time he even looked at these sites was to see post-op pictures.....
Less than 2 weeks till the 18th. We're here for you! :hugg

[momforthe1sttime]

Jennifer - That is basically what I am going thru with my husband. If it wasn't for this group of mothers here, I don't know where I would be. I need to talk about it. My family just keeps saying, "Don't worry about it, he's fine." That does not help me at all. I need to vent and have ppl have true input and insight and understanding as to what I am feeling. Thank you so much. At least I am not feeling alone as I continue to chat with ppl at this site.

[Matthews Mommy]

You definately would be having more medical complications for all sutures like hydrocephalus, eye bulging, irritability....they would move quicker if they were certain it was all sutures involved, they usually operate immediately with those cases. We are all here for you :hugg waiting is the worst I remember how hard it was, before you know it the appt. will arrive and you can get your answers.

[momforthe1sttime]

I would hope they would move quickly if they were all fused. But according to the xray there are 3 that are fused. I really don't feel they are all fused considering he is having zero problems. He eats just fine (7 oz every 3 - 4 hrs), and developmentally he seems to be on target and beyond. I know that the NS has the xray report and didn't want to see him until this month. That was sent to him immediately in May. I was very concerned when I was given the date of July to see him. So who knows.....answers will hopefully become more clearn this month.

[mom2mykidos3]

I am hoping and praying for the best news for you. I do agree that it is strange that he isn't showing any facial signs of CS. I was just wondering if he has any ridges on this skull? I think men are men. My husband is the same way. He just kept saying it isn't that bad. Then I decided to show him this site. Now, he is a little better. Just showing him that I was baseing my opinion of what Miriam will need on actual facts. It has been better. Just give them time. Keep us posted. We love to be of support. I need someone to talk to too. This is my life saver. Women need to talk about the problems. I am here anytime.