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MerinSun


Forum: June 2013 Playroom

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  #1  
September 5th, 2013, 05:23 PM
MamaSkunk's Avatar Mega Super Mommy
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Can we get an update on Rowan please? Been worried about the little guy.
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  #2  
September 6th, 2013, 03:32 AM
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Sorry! I was going to wait until tonight after I spoke with the GI RN again Rowan is definitely chunking up but I don't know how much he weighs now. I do a weight check this afternoon.

He is a SUPER happy and friendly baby. Oh my gosh, so sweet!

We had occupational therapy again and she said that his motor skills are picking up fast but he needs a lot more guided practice to get caught up. He is able to lift his head up while on his tummy often to look at toys and is getting better at keeping it up for a few seconds but he isn't bringing in his elbows like he should. She thinks it's all about practice and not because of any serious issues. She also wants to see him start trying to pass a toy between his hands, bring it to his middle, etc. Basically, a lot more guided play.

The REALLY GOOD thing about yesterday's OT was that she told me she took another look at his swallow test and noticed a note about a slight bit of aspiration of fluid in his nasal passage. I nearly hit the roof. No one mentioned this to me! You can HEAR him suck the fluid into his nose and choke ALL THE TIME. As he was on his back he choked twice on his own spit and then while she watched him on the bottle he aspirated really bad, almost threw up.

She said that she talked to an ENT specialist earlier this week and they felt that Rowan was a candidate for taking something called the FEES test, that's where they take a small camera and feed it through the nose and look at the structures of the nose, mouth, throat, etc. But he has to be put under for it. So, today my job is to update the RN on his weight but to also demand the test. I have to push for it, though. They don't want to do any invasive testing that means putting him under until he is older. Which I understand. But I'm worried that he is going to develop pneumonia!

So I'm really hopeful that he'll get this test SOON and that is shows something! It's not a strength thing, it's not a coordination thing...I honestly think it is his throat! I've said it for months now. If the test comes back normal I'm going to just sink through the floor and die. This is SO frustrating!
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  #3  
September 6th, 2013, 07:11 AM
MamaSkunk's Avatar Mega Super Mommy
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Aww poor guy. I really hope they figure something out. I'd say it sounds like his throat also. I am glad he seems to be gaining
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  #4  
September 6th, 2013, 12:14 PM
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He is 10lb 9.5oz. He's gaining but much more slowly than they would like :\ No news yet on the FEES test.
MamaSkunk likes this.
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  #5  
September 6th, 2013, 04:11 PM
QueenCrafty's Avatar Courtney
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I hope you can get that test! I am glad he is making some progress though
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  #6  
September 6th, 2013, 08:09 PM
dmreed32's Avatar Veteran
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I hope you can get that test! Camden has no interest in toys yet, he sure wouldn't pass one from one hand to another
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  #7  
September 6th, 2013, 11:42 PM
navywifey2003's Avatar Home Birth Mama
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Huge hugs Hun! Going through feeding issues with Everett now I couldn't imagine going through it as an infant. Hang in there you are doing great! I hope you are able to get that test!
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  #8  
September 7th, 2013, 04:53 PM
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Sounds like a great OT, I hope you can get that test and figure this out once and for all!! KUP!
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  #9  
September 8th, 2013, 07:02 AM
hilachu's Avatar Mega Super Mommy
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Quote:
Originally Posted by dmreed32 View Post
I hope you can get that test! Camden has no interest in toys yet, he sure wouldn't pass one from one hand to another
yeah Emerson likes some toys but couldn't pass them back and forth
and the weight thing, she's probably that weight as well
im surprised those are things they are worried about
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  #10  
September 9th, 2013, 03:56 PM
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They're going to talk to the ENT this week and get an appointment scheduled If the ENTs agree that something must be done then in as short a time as a couple weeks he'll be in for the FEES study We're going to record Rowan eating at several feedings and make a little video to give a better idea of how he eats. Because you know that when I take him in he'll do fine, lol. Well, his version of fine, anyway.
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  #11  
September 10th, 2013, 12:24 PM
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WHOA! WE GOT AN APPT. FOR THE FEES STUDY! No, evaluation necessary! The ENT group looked at all his tests and decided based on that that he needed it done. October 3rd is the date :-). At the same time the GI team will scope his innards and find out why he can't eat more at one time. This is it! We're gonna find out SOMETHING!
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  #12  
September 10th, 2013, 01:00 PM
navywifey2003's Avatar Home Birth Mama
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That's wonderful news!!
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  #13  
September 10th, 2013, 02:49 PM
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Woohoo!
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  #14  
September 10th, 2013, 04:31 PM
QueenCrafty's Avatar Courtney
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So glad!!
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  #15  
October 3rd, 2013, 12:35 PM
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Wooooo...we found out nothing Everything with his throat is normal and working fine. We're running out of testing
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  #16  
October 3rd, 2013, 04:01 PM
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*hugs* I'm sorry you didn't get any answers.
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  #17  
October 3rd, 2013, 06:00 PM
navywifey2003's Avatar Home Birth Mama
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I am so sorry hun!
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  #18  
October 3rd, 2013, 07:05 PM
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Ugh. That should be good news (that everything is fine) but I know you must be going nuts with wondering!
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