Pulling Tube

Today was a rough day in the Marcus residence. Aryssa has figured out how to pull her tube out without us knowing it. She is so quick at doing it now. She has pulled it out 3 times today. It is so horrible putting it in constantly. I hate this tube. I curse the tube. It is becoming very clear that she is going to have to have a mickey button put in. It is becoming too dangerous for her to continue having the NG tube in. It makes us so mad that it has even come to this due to lack of proper care from ALL the doctors we have seen in the last few months. She is doing very well in therapy so hopefully, she will not have to have the mickey button for long. I am not sure how I am going to handle my baby having to go in for surgery. I almost lost it when she had to be knocked out for the MRI. I do not wish this upon ANYONE.

I know there are people out there that have way worse problems than we do, however our problems could have been avoided if we would of had the proper medical attention. As a mother I feel the blame due to lack of confidence in myself. I keep myself up at nights with all the "what ifs". I want the best for Aryssa and I am so afraid of her being behind and how this will affect her future. Well that is all for tonight. Hopefully we will have a better day tomorrow. Aryssa and I will be having lunch with her Grandma Katie. YAY!