Appointment tomorrow

[madsmaseve]

Hi Ladies,

I'm so happy it is finally here. We have our first appointment with the Craniofacial department at the Childrens Hospital tomorrow. Hopefully we will get some answers & this worry that has taken over my life atm with subside. Not knowing is so hard. We are taking the kids to Disneyland next week (all the way from Australia) and I am so unorganized because this is ALL I can focus on . I feel like I am obsessed.

My previous post is here . http://www.craniokids.org/support/showthread.php?t=10134

Anyway the strange thing is that the side of her face that was pushed in seems to be popping out. I thought I was going crazy cause my DH said she looks the same to him but then my sister walked in the other day, looked at her at said "OMG her face isn't as pushed in today" I hadn't mentioned anything to her. AND she has been SOOOO much happier the last week. So that's good news. Hopefully it means no cranio.

BUT I am still concerned with how skinny her head is at the front compared to the back. The best way to describe it is like a pear shape. The width of her forhead is smaller than my 4 month old neices & Evie is 22 months. Her face bends around the side too quickly I think or is this just a normal variation of faces?? It's hard to see it in 2d photos but you can kind of see it in this one.
http://img.photobucket.com/albums/v519/tiny-trends/IMG_7603.jpg


She also had huge bumps at the sides above her ears, which kind of show up in this one.
http://img.photobucket.com/albums/v519/tiny-trends/IMG_8094.jpg


Oh and I found some pics of when she was born on my old computor. I knew her shape was bad but side on she looks like an alien!!

http://img.photobucket.com/albums/v519/tiny-trends/Evelynn6thAugust-10thAugust07025cop.jpg

http://img.photobucket.com/albums/v519/tiny-trends/Evelynn6thAugust-10thAugust07187.jpg

Anyway I will let you know how I go, I am excited and I feel really silly saying that but I am. I am also worried that they will also dismiss my concerns & not do a 3d CTscan. I will think of all of you wonderful mothers who have fought for your babies & I will do what I can to get one. I don't think I can let it go without knowing for sure that everything is ok.
Thanks so much for your support ladies.
Melissa

[Sophia's_mom]

Good luck tomorrow, Melissa. I'll say a prayer for you, hopefully no Cranio. But it'll be nice just to have answers. And a vacation afterwards sounds wonderful!! Keep us posted.

[dannlark]

Good luck tomorrow!!!! I'm praying that you FINALLY get some solid answers. Don't take no for an answer and really push for the 3-D CT. Especially if they are pushing off your concerns. You need to know, one way or the other. Keep us posted!!!!!

[evergreenmom]

Best of luck and definately insist on a CT scan!! Way to go momma for finding CK and looking for answers!!

[*jules*]

good luck at the appt tomorrow :)

[kking]

Good luck! Let us know what you find out...

And have a GREAT time at Disney, no matter how tomorrow turns out.

[charliesmummy]

Good luck Melissa ill be thinking of you. I love the piccy's you posted by the way, you can really see her head shape & pinched temples in the baby piccy's. Anyway, please let us know how you get on xx

[mckennasmum]

best of luck, let us know how it goes!

[Zara's mum]

Hi, just wondering how you got on yesterday ? xx

[*jules*]

how was your appt? hoping everything went well :)

[madsmaseve]

Sorry I haven't responded. My oldest daughter turned 6 today & had her cousins sleep over last night & friends over tonight.

Well we saw the craniofacial surgeon, he just kept looking at her xrays saying that all the sutures look like they are open. He hardly felt her head because she just screamed & fought him whenever he came near her. She wouldn't even let him look at her thumbs(she has trigger thumb) He wants the neurosurgeon to see her & decide whether or not to do a cat scan. He didn't want to order it before the neurosurgeon has seen her because he said she would need to be put under a general anesthetic to have it done.
He said that looking at the xrays everything looks fine and that the brain pushes the skull out & that there may be an underlying reason why the brain isn't growing in the front.
So now we are waiting to hear from the neurosurgeon for an appointment.

I do understand the reasoning behind not wanting her to be put through the risks of a general if she doesn't need it but I also wonder how much it has to do with cost and how much they have to justify the need for a CT. In Australia we have a public system which is free to anyone (which is what we went through) and a private system for those with health insurance- there is usually an out of pocket expense with private. So I do wonder if I went private whether they would be more willing to order a CT scan. Anyway if I feel I am not getting answers after we see the neurosurgeon I will go private & see if there is any difference.

Thanks for all your support, the difference it makes is tremendous. I am truley grateful for this forum & the wonderful ladies on here. I will keep you updated.

Also I thought I would share a pic of my big girl Madalyn on her birthday today.

http://img.photobucket.com/albums/v519/tiny-trends/IMG_8255-1.jpg

Thanks
Melissa

[Zara's mum]

Oh Melissa, I am so sorry you didnt get any solid answers at your appointment. I hope that the neurosurgeon decideds soon whether a ct is necessary, I am not sure about the accuracy of an xray in diagnosing sutures etc, i know it showed the harlequin eye common in coronal cranio on Zara, but don't know if the sutures were that visable. Keep pushing girl, you are doing a great job. I know there is a huge difference between public/private here in Ireland, I do hope you don't end up having to go private to get proper treatment. Your eldest girl is adorable....xx

[*jules*]

sorry your appt was a bust! hopefully the neuro can give you some more answers. I don't have any experience w/diagnosing cranio, but I believe it's hard to get an accurate picture of the sutures with only an x-ray. hoping someone who knows more about this will jump in to help. thanks for the update and let us know when you see the neurosurgeon.
BTW, both your girls are beauties! Wish the 6yr old a belated birthday from me (I have a 6yr old son...they would make a gorgeous couple, lol)

[iamkc]

I'm so sorry that you didn't get the answers you were seeking! When would you be able to make a private appointment if you decided to go that route?

Your girls are both beauties!!! Happy birthday!