So... Do you ever have those days as a mom where you feel like defeated? Where you feel like you want to fix every problem in your childs life and be the one to handle issues so you dont have to watch your child endure all that they do?? That is today. Today I am sad for Addie... I am sad for many things that she misses out on and family time around the table that I have always wanted for us. That time is a wonderful bonding time that is only uncomfortable and miserable for her. With that being said I am grateful that she is dealing with this problem and not worse today. Adilynn is no longer in the intensive feeding program. This is so hard for me to write because we were so hopefully that soon she would be enjoying a meal with the family. After a swallow study today she is no longer cleared for food at all. She has silent aspiration which means there are zero signs and she doesnt protect her airway. The clinic has been so supportive and what amazing women who run it! She will be now trying something called vitastem and back to the aero digestive clinic. She doesnt have an automatic response to food in her throat. It isnt something they can teach so unfortunately she can no longer have even tastes of the food she loves so much. This doesnt sound like much to most people but it is devastating to us. She wants to eat so bad and food is the center of everything in life. She gets so upset when she cant try something so this will be difficult but we have to do what is safe for her. Sorry this post sounds so negative, it isnt meant to be. We are changing routes now and going down a different path. Addie has amazing doctors on board and she is now in TGEN which is a blessing! Tomorrow will be a better day. Thank you for all of the support.
Posted on: Wed, 14 Jan 2015 00:32:57 +0000
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