CT Scan and Diagnosis

[laurensmom]

Hello Everyone, Lauren got her CT Scan last Wednesday (the 18th) and we still haven't heard from the doctor. Is this normal? I tried calling today and got nowhere. She is diagnosed with right unicoronal syntosis with related deformities creating plagiocephaly.

She is having right fronto-orbital advancement and inferior repositioning with compensatory left frontal recessing. Whatever that means. Her surgery is scheduled for August 14th and i'm getting very nervous and depressed about it.

Please pray for us. I just want it over with. She will definetly need a second surgery to close the bones when she's 7. Anyone else with this situation? I cant sleep at night thinking something may go wrong..it's coming too fast.

Thanks for listening..just needed to vent a little...

[Jennifer]

:hugg's to you. This is such a scary time. Did she do okay during the CT? If you already have surgery scheduled, I wouldn't be suprised if they didn't call you. Our CT was done just for the NS/PS to see exactly what they were getting into- not for diagnosis or anything (she stated upon first visit exactly what she had) We did ask for a copy of the films for ourselves and at her pre-op appointment (about 2 weeks before surgery?) I asked and she just said that it confirmed what she knew and that there were no suprises on the CT.....
As for "She is having right fronto-orbital advancement and inferior repositioning with compensatory left frontal recessing. Whatever that means."
In 'real person' terms- my understanding is: For the eye that is flatter around the eyebrow- they will be 'pushing' that out to make it appear 'normal' along with round out the side of the forehead that is flat. The other side that is 'bulging' a bit they will be smoothing down (recessing) it so that her forehead is pretty and even.... Does that make any sense?

I am curious on why they are sure they will have to go in at 7 to close them up??? Did they explain that at all?

I know the dread and fear and horrible what-if's that you are feeling right now and it really sucks that we have to go through it. Please try to remember how strong our babies are and how truely amazing the whole process is. I have no doubt that on the evening of the 14th you will feel so much joy and awe of your daughter and her team of doctors. THere will still be a few more sometimes rough days ahead, but it will be mostly over. I will say many prayers for you all...for the docters, for you and for Lauren!
:hugg, :hugg

(Oh yeah- continue to vent away- we're here to support you and totally understand how you need to get it out! )

[Jennifer]

Okay, just reread my post-- can't spell apparently but to lazy to go in and correct! :giggle

[Mom2William]

This is a very scary time for you. Your worries are normal. You will get through this and I can tell you that Lauren will recover and handle it so much better that mom and dad. You will be amazed at how quickly she will be back to normal and you will not be ready for it!! William was climbing and running WAY too fast for my concerned heart, within two weeks of his surgery!!

While this is very major surgery. It is still safe. One of the other mom's on another site that I joined said she had been on for 6 years and there has never been a death or anything serious that caused permanent problems for the child from the surgery. I hope you can take some reassurance from that. I too was sleepless and anxious and fearful. All the up/down emotions. My mind thought of all the problems, but I was peaceful during the surgery. I cried of course, but overall, I knew she was in God's hands and he would be with him and the surgeons.
My prayers are with you. I pray that you will have some peace about this. This was really the most difficult time for me the "before" the surgery, and after I could focus on my little boy.

Best wishes and just vent all you need !!!:hugg

[mom2mykidos3]

Good luck to you and you WILL be in our prayers. I hope all goes well with the surgery. Miriam's surgery isn't until October, but we start all the doctor appointments in August. I feel your anxiety ( ok I don't know how to spell). Let us know how it goes. I was glad you asked what all the fancy words are because I was wondering what they were going to do for my daughters forhead as well. The pulling a pushing does make sense. Good luck.:hugg

[laurensmom]

I wanna thank all of you..you don't know what this support group has done for me. You guys are my salvation and sanity. It's just so wonderful to have someone who understands your pain and worries. Everyone has been so kind and wonderful and I just cant thank you enough.

I will be praying for Miraim and if there is anything I can ever do for any of you please do not hesitate to ask me. Jennifer, thank you for explaining things to me! It makes so much more sense when you say it that way! And thank you Kim for the statistic (if that's spelled right) about death and serious problems. That is my biggest fear. I will keep everyone posted and God bless you all!

You're the best!!!

[Matthews Mommy]

Matthew is having the surgery to close off bone in September he is 4, and 4yrs post-op this October. I was completely terrified on the day matt had his first surgery, when all was said and done I bought his NS a guardian angel plack with a very religious card...he asked me why did I give him this and I said my son is alive....that is how fearful I was. I want you to know we all know how you feel and will be here for you through this all the way:hugg.