Another hospital visit and some difficult news - Page 2 - Mothering Forums

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Old 03-11-2009, 06:26 PM
 
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My thoughts are with your DS!

Tofie ~ mama to DD1, DD2 and Pookie v3 debuting December 2011
Oh my God....women are the COWS of PEOPLE!! --Reese, Malcolm in the Middle
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Old 03-11-2009, 07:16 PM
 
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Taryn-31 Crunchy Conservative Catholic SAHM with DH-32
DS 7.5, DD 5 (vbac), DD 2.5 (vbac), and DD 12/30/13 (vbac)

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Old 03-11-2009, 09:53 PM
 
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I hope everything went well today. You and Lucius are in my thoughts

Mama to my charming little boy, born at home January '09
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Old 03-11-2009, 10:19 PM
 
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I hope the MRI had good news. I am thinking of you and your family.

Proud Mama to DS 04/23/06reading.gif DD 02/18/09 modifiedartist.gif, 2 dog2.gif, and wife to wonderfuldh_malesling.GIF and adding another baby.gif. Here's my blog: http://nessabean.blogspot.ca/
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Old 03-11-2009, 11:04 PM
 
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"If you keep doing the same things you've always done, you'll keep getting the same results you've always gotten."

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Old 03-12-2009, 01:01 AM - Thread Starter
 
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Well it took him longer to recover from the anesthesia than we expected, but otherwise everything went great. We're home now and I'll know the results within 2-3 business days so probably Friday or Monday. We have an EEG tomorrow, and the combination of the two will help us to have a better idea of how his brain is functioning and what, if anything, is wrong.
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Old 03-12-2009, 12:41 PM
 
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Not in your DDC (this time), but I wanted to send you prayer and .

Mama to my beautiful Ana Carolina (2/07), Isabel Cristina (6/10), and #3 on the way in August 2013!

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Old 03-12-2009, 09:56 PM
 
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DiD, I've been thinking of you and Lucius. Keep us posted on the results.

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Old 03-12-2009, 10:09 PM - Thread Starter
 
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The EEG went smoothly today. We expect to have results soon. Thanks for your prayers and support!
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Old 03-12-2009, 10:19 PM
 
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Quote:
Originally Posted by DreamsInDigital View Post
God this is so hard to write.
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Old 03-14-2009, 10:27 PM
 
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I'm so sorry. I will be praying!

Happy Wife  partners.gif since 12/31/05 ~ Blessed Mama to stillheart.gif 2/8/09 and stillheart.gif 6/11/11, with stillheart.gif on the way due 2/24/14

 

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Old 03-14-2009, 11:53 PM
 
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DID, I just saw this and am sending you prayers and good thoughts.


SAHM to Guinevere (04/05/06) and Eowyn (02/13/09)
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Old 03-21-2009, 12:46 PM
 
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DiD, I'm so sorry you are going through this. I AM glad to see that he beat that RSV so quickly!!

My son had craniosynostosis, the same version that you're worried about. It's more commonly called scaphocephaly. I spent countless hours researching it and would be glad to discuss my research with you. I know it's scary, but there is a fantastic option that is not nearly so invasive as the standard surgery. My son's surgery was 57 minutes long and he was released from the hospital the next morning. There's SO much to say. We can take this to PM if you want, or I'll PM you my phone number and we can talk. Or, I have unlimited long distance and can call you. Between my son and DD, I don't get much chance to type...the phone works a lot faster, IYWIM?

The most important things to know:
The only way to diagnose cranio is by a 3D CT Scan. Do not waste the money, time and radiation on xrays, MRIs or standard CT scans. They will not give the right picture to confirm the info you need.
www.craniosynostosis.net These folks are the "Gods of Cranio." They invented the endoscopic surgery that we used. People fly in, from literally all over the world, to use these doctors. We flew from PA to San Antonio for them ourselves. I can go over their procedure and the really awesome set-up they have for non-local patients. They have it layed out REALLY well for you to fly in, be treated, be comfortable, even do some touristy stuff and head home. That tourist part sounds outlandish, but it's true and it works....though I couldn't believe it beforehand.

posting so i don't lose this...computer is flaky. will edit to continue my thoughts.....

Crap....I didn't realize you've already done the MRI. Perhaps that is helpful anyway with your other concerns about him. I looked at his photo, he's ADORABLE!! If he has cranionsynostosis, it's certainly not very severe, which is wonderful. Correction is really very simple in the mild cases. DS was kinda in the middle with his AND he wasn't in surgery until 5 months old, which is somewhat later than usual. Nevertheless, his results are great.

Anyway, I'll PM you.

SAHPilot Mama to a 5yoson, a 17 mo old daughter, and wife to .
Worried about your baby's head shape? PM me for craniosynostosis info!
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