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@spaniellove: wow, that sounds soo scary that he is having bradys and desats. It's good you took him to the hospital when you did!! Good luck!
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Thinking of you and praying that all works out well and baby boy is happy and healthy at home soon.
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@spaniellove: I'm just seeing this now. I'm so sorry you're going through all of this, after all you've already been through! I hope that being in the hospital will help you get J fast-tracked with all the specialists and tests he may need, so that you can get some answers.
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@spaniellove: hoping today is better. I wouldn't be so worried about the "floppy" comments unless they've seen him more than once, we heard everything under the sun (he's too floppy/he's too stiff)
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Thinking about you mama! Hand in there. -
Thinking of you
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How are things going today? Thinking of you.
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@spaniellove: Thinking of you!
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Thinking of you
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@spaniellove: hope things are looking up, thinking about you guys
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Sorry I haven't been able to update or thank anyone individually for the words of support! HB is blocked at the hospital. It helps so much to have you guys. Being here makes all the baby care at home seem like such a breeze.
Last night he did a 24-hour pneumogram (aka sleep study) with ph testing, so we're waiting for the results of that. But I did talk to cardiology and they think we can rule out one of the syndromes associated with deafness and SIDS. We've been working on his feeding issues especially since he's losing weight here and now starting to vomit again.
We have a roommate baby who I've become sort of responsible for watching over (long story) and she and J are magically connected. They always cry in unison and it's pretty obvious he can hear her. She makes me wish he had a twin!
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@spaniellove: I am so glad to see your update and thrilled J can her the roommate! But sorry that you have two crying babies in one room and that he is losing weight
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@spaniellove: I'm sorry things are tough! Can you ask for a GI consult? That's sweet about his first roommate
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Hugs, thinking of you and your sweet ds. Hang in there.
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@spaniellove: aw glad to hear an update and that certain things are being ruled out. I'm glad he has a little friend in there. I hope you are finding support too. Lots of love and prayers your way.
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@beaker: I guess they're trying to figure out first what the extent of the reflux is and then they may do more testing. They did give us a handout with a list of tests they may consider. Speech may come back and look at his feeding again and I talked to a nutritionist as well as someone else about why not try an elemental formula if they think he has milk allergy.
Ophthalmology came by tonight and decided he doesn't look like he has the visual component of Usher Syndrome so that's another one we can most likely check off the list.
I really just adore this other little girl! The two of them seriously make identical noises and are a week apart. At first I got frustrated when the two of them cried but I've learned that they're on the same sleep schedule and I can try to soothe both of them at the same time without holding her.
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@spaniellove: hope things keep improving
His little roomie sounds sweet. Nice of you to help with her... Is she there all alone?
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@spaniellove: sounds like you are getting very appropriate care. Are you at a large regional children's hospital?
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I just caught up on this entire thread and I have to say that you are a wonderful advocate for your son. You are amazing. All of this sounds so scary and I'm praying for answers and health for your LO.
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@spaniellove: glad they are ruling stuff out! Hope tonight's a good night. Are you going home at all for a break?
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@Mrs. Champagne: She is...I get that they had to do what was best for their situation. Just feel bad for her.
@Mrs. Jacks: Yes, we are at CHOP. We happened to have appointments coming up with a lot of these specialists so it just made sense to knock everything out at once.
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@beaker: I just finally sent DH home to do some laundry and get himself some clean clothes for work. After seeing how long they'll let little roomie cry I feel iffy about leaving J alone in the room, especially after he had his vomit episode today and a nurse who happened to be in the room warned me about aspiration risk.
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@spaniellove: I'm glad it looks like J is getting good care! Also, I wanted to say - you are a bit of a sweetheart for trying to help with J's roomie with all you have going on. She's lucky to have you for a time.
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@spaniellove: good updates! Just remember to give yourself a break, too! I hope that tomorrow brings more answers.
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@spaniellove: I could tell you were somewhere really good because all the tests you described were exactly the right ones. It always drives me batty when people try and diagnose reflux with an upper GI. You need a pH probe. (which you got). It's rare that I'm really pleased with the work up that a Bee is getting and I often get disappointed in my colleagues for giving less than optimal care to Hellobee folks. Mostly I just keep my mouth shut because I know that people need to trust their docs. Just know you are really in good hands and they are leaving no stone unturned.
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@spaniellove: I'm so excited to hear Usher's ruled out! Do they have any strong inklings? Pendred Syndrome is another that causes profound deafness (it also has an impact on thyroid, but that is fairly easily monitored these days and fairly easy to treat!) hopefully you get answers soon! You and J are in my prayers!
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@Mrs. Jacks: @spaniellove: Wow, a ringing endorsement, so glad you're getting great care! Hope today brings more answers.
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@Mrs. Jacks: @spaniellove: I'm so glad that you are exactly where you need to be. Still praying for answers. And that is cute about his roommate!
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@spaniellove: been off HB for a little bit, but catching up on your story and I'm so so sorry that you are going thru all of this with little J. Please know that you are all in my prayers. Hoping you get some answers soon!
Thinking about you mama! Hand in there. 
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