Well this sucks

Wednesday, February 22, 2017

So today sucked she had an appointment with her pediatrician and we're trying to figure out what it is that's going on with her stomach since every medicine hasn't worked all the formulas are not working either and so she has an appointment with a G.I. specialist next week so that he can see how she is digesting her formula and hopefully go from there she did say though that she may need a G-tube because what could be happening as her brain is not letting her digestive system know what to do so that's why she's having a hard time and if she does need one I'm going to be absolutely devastated because I thought we were in the clear after we left the Nicu Friday we have an appointment with the nutritionist in LA to go over this certain diet that she's gonna get put on and her pediatrician said that that can fix her acid reflex if that's the problem so I'm praying to God that that is all it is and that this formula is going to stop her seizures and her acid reflex I will literally consider that a miracle because I am petrified of her getting worse so that's what happened today at her appointment I finally broke down it's been a while I think I'm just so exhausted on putting the smile on my face and pretending everything is OK yes I'm grateful for her and yes things could be so much worse but this is also new to me and not being able to help your kid is absolutely horrible on the plus side if she does end up getting the G-tube and it does fix this this may be why she's unable to develop and learn for some things because she's constantly in pain and stuff so there's a Silverlining in there I don't know it's all hard it all sucks and I wish things were easier for us.  Tomorrow's a new day

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