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Posts by gsmom

Hugs to you mama.  You have a beautiful boy.  Waiting and wondering is the worst for me.  Dr. Google is dangerous ;-)   In the end your little dude will still be who he is, regardless of what diagnosis he may or may not get.  He is yours (the same as he was before all this worry and testing) and he is beautiful and he is exactly who he needs to be.      I know the waiting and researching and wondering and worrying is unbearable.   There is so much grieving that...
Hugs to you mama.  I am sorry things are so difficult right now.  Sending peace and light your way.
Hugs to you mama.  What a journey!  I couldn't read your story and not say welcome.  Welcome.  I hope you find some good connections here.  
In our NICU we use the Dr. Brown preemie nipples (you can get them at Babies R Us or on-line).  We find that these are slower than the yellow ringed Similac? nipples that are often used.  There is no research supporting the labeling of nipples as slow flow, fast flow, etc, but the nipples are named based upon the size/number/shape of the hole that the fluid comes out.   Does she suck on a pacifier?  Can you try some liquids from a spoon, this is often how I will...
Sounds like you are doing some cool stuff.  I would keep just offering him things and letting him try them.  Have you tried carrot sticks or celery (obviously supervised) which don't break apart as easily.  It's cool that he is trying things himself.   I would encourage you to push a little bit with the pediatrician.  Some grimacing with new textures and even a little bit of gagging at first is normal, but what your kiddo is doing sounds more extreme than that.     I...
Could you just use something like applesauce or yogurt to thicken liquids?     My son is on the ketogenic diet and our dietician recommended guar gum when he was still eating orally.  We tried it and it worked after several trials to figure out how much to use.   
Hugs to you mama.  It is not an easy road to walk.  I hope that the medication helps and you are able to keep the seizure monster at bay.    
First of all, hugs to you mama.  It sounds like your DS has had a busy journey already ;-).  I think when it comes to medicating our children, it is always a challenge to feel okay with that.  Something does not seem right about putting chemicals into these little bodies.  My littlest was supposed to be my "natural child" and when we got his medical diagnosis he became everything but that.  I totally understand the hesitancy to start medications based upon the side...
We use our flexible benefits for it, but my son has significant special needs, so it was deemed "medically necessary" by our ped.  We had our doctor fill out a form that "prescribed" the CST (the flex ben company had a specific form) and now we can claim it.  
Sending many hugs to you, mama.
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