new and need advice

[hellbennt]

hugs!!

I’m so sorry that you’re dealing w/ all of this! Prayers & positive thoughts headed your way!

Did you end up w/ a ped GI? if so, can you please post about her/him (good and bad)?

Looking for GI: https://www.infantreflux.org/forum/forum_posts.asp?TID=660

If not…well, thank you just the same & thank you for checking back in. You’re such an amazing mama, searching for information!

Here is another site- I don’t know if they can help you, but it’s a start…I am NOT telling you to leave or anything like that! I’m trying to help…

http://parent-2-parent.com/forums/forum.php

please know we’re here for you

~laura

hellbennt2011-07-13 16:25:49

[Anonymous]

oh goodness! I’m so sorry to hear that its been rough for additional reasons. I wanted to let you know, though, oddly enough, my husband had the same thing. I’ve never known anyone else with a child that had this, but he was also born with his skull fused and had surgery at about 7 weeks old. He’s 39, so it was probably done a bit differently then, but he’s led a completely normal life. He has a scar that’s probably a good 7 inches long along the middle top of his head and he would look pretty rough if he had his head shaved…but other than that, he is fine. He jokingly refers to the scar, which came together a bit unevenly, as the “mid-atlantic ridge” of his head. I had him just read your email and he said he’s never heard of him having to wear a helmet, maybe that’s why his scar healed unevenly! Of course in the early 70s, he said they had him suck on a pacifier soaked in brandy prior to surgery….can you imagine? That’s been his mother’s story ever since I’ve known the family. I’m really feeling for you!!!! hopefully once the trauma of surgery is over, it will be a smooth road to recovery. Hang in there!

[hellbennt]

veeeloova:

can you please post updates & your ped GI?

Looking

for GI: https://www.infantreflux.org/forum/forum_posts.asp?TID=660

there are recommendations for ped GIs in your area…

[Anonymous]

Ellie just had surgery this past week. i’ll update in a while when I get a chance. Hope you’re all well.

[hellbennt]

hugs! hang in there!!

[Author]

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