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Old 05-01-2006, 10:43 AM   #1
Cog
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Unhappy Please pray/ think of us, Miss Coglette isn't well **UPDATE AT BOTTOM**

Hey Everyone, wanted to apologize for not getting back to you sooner than today. I haven't been on much and I won't be able to be for a while.

DH took a promotion (congrats DH !!) which of course means more hours, but we've also got to move closer to the shop he's working at. We are looking for a place to move into now. This is great financially and of course personally for DH but....


Onto the reasons I can't be here.
Miss Coglette has a few things going on. She has torticolis in her neck, it's a tightening of the muscles. She'll have physical therapy to help this, but right now she can turn her head to one side, but barely the other and its painful. Secondly, she has to go for an eye exam because her vision doesn't seem to be what it should at this point. Third and most scary, she has a condition of her skull which is causing the back plate/ bone to actually pertrude from her skull. The pressure inside her head prevents it from going to its normal place. While her head has been round since birth (never got a cone head) its just now within the last couple weeks that the plates have actually begun to shift. If the plate fuses prematurely, it'll stop her brain from growing, if it dones't fuse, or fuses the way it is now, she'll require surgery to correct it. Premature fusion will require surgery to remove the bone and they can put a steel plate in or she can wear a helmet until her brain is finished growing.

She cries almost unconsolably for most of the day/ night until we go to bed. She lays next to me and seems ok, but if I move or move her, she cries. She's very uncomfortable and there is basically nothing I can do for her. We go back Wednesday morning and they'll decide if they want a brain scan now or wait to see what's happening.

Basically I am BEYOND upset as I feel SO terrible that I can't do anything for her. I am SO mad that these issues are a direct result of the PG/ birth (the skull condition we'll see about, it may or may not be) What's more, I am SO tired of "wait and see" DO SOMETHING for her already !! My poor little girl is in pain and they do nothing !!

Lots of you have my e-mail, I should be able to check that more often.
I am going to the PO today or tomorrow to ship everything I have here.
I will finish the Summer Swap, as I said I would, but I think that's it for me for a while.
I will update when I know more and as I can.
Thank you everyone.

Last edited by Cog; 05-12-2006 at 09:59 AM.
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Old 05-01-2006, 10:46 AM   #2
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Re: Please pray/ think of us, Miss Coglette isn't well

- lots of prayers for you guys!
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Old 05-09-2006, 04:43 PM   #3
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Re: Please pray/ think of us, Miss Coglette isn't well

Oh Shannyn, I'm so sorry for your poor little baby! I hope she gets better soon...at least for the pain to stop. Sweet little thing!(((HUGS)))
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Old 05-09-2006, 05:29 PM   #4
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Re: Please pray/ think of us, Miss Coglette isn't well

Good luck Thursday
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Old 05-12-2006, 09:58 AM   #5
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Re: Please pray/ think of us, Miss Coglette isn't well

We went to Shriner's yesterday. We got there for our 11 appointment and left at 3:45....LONG day to say the least.

She had to have X-Rays of her neck done, it of course, showed the toritcolis and a slight curve in her spine due to the torticolis.
She had a ultra sound of her hips and luckily the torticolis seems to not be effecting her hips or legs yet, so that's great news.
She is presenting with torticolis on both sides, which the therapist said "people think it can't happen and it does" it makes it a little harder for PT, but its not something that we can't work to help her correct.
We see the neuro surgeon the 26th at 10:15 am and a minimum of 45 minutes of PT after that appointment. She may have to have a CT scan that day, depending on what the surgeon says.

She goes for a follow up with the orthopedic surgeon September 13th.
A follow up with the PT after her neuro surgeon appointment and after the vision screening, which I have to schedule today.

Thank you everyone, your support means the world.
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Old 05-12-2006, 10:23 AM   #6
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Re: Please pray/ think of us, Miss Coglette isn't well **UPDATE AT BOTTOM**

I am so sorry you are going thru all of this. I pray things get better and you get some great news from the neuro. Poor Coggette going thru all of this...
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Old 05-01-2006, 10:59 AM   #7
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Re: Please pray/ think of us, Miss Coglette isn't well

If you are at all into alternative medicine please check out cranial sacral therapy. I think it would help you out quite a bit. It is very gentel and would not interfere with anything the doctors would be having you do. here is a link with a little more info, and there is a ton more on the internet if you want to look into it.

http://www.geobaby.com/articles/baby...y-for-infants/

I will say lots of prayers!

Shannon
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Old 05-01-2006, 11:08 AM   #8
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Re: Please pray/ think of us, Miss Coglette isn't well

I'm so sorry to hear what's going on with your little one! That is so traumatic for everyone involved. I pray that things start to look more positive.

I have a friend with a daughter with torticollis and she has done therapy and has done remarkably well.

I myself know how the worry about vision problems is. My son has some slight vision problems but people make comments all the time about it. It's really rather annoying and it hurts my feelings but I just try and keep in mind that he's extra special because of his eyes. There are some really great pediatric ophthalmologists out there and I hope and pray you are blessed with the best and also with a really really good neurosurgeon. Keeping you and your little one in my thoughts and prayers.

These times are rough and our little ones sure do pull at our heart strings. Please try and take it one day at a time.
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Old 05-01-2006, 11:28 AM   #9
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Re: Please pray/ think of us, Miss Coglette isn't well

and lots of good, healing
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Old 05-01-2006, 11:44 AM   #10
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Re: Please pray/ think of us, Miss Coglette isn't well

Oh my! This sounds scary! I hope it goes well. Please keep us posted as much as you possibly can.

You will all be in my thoughts and prayers!!!

PS...soooooo happy to hear about DH's new job! That's wonderful news!
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