Friday went well but Rylee is miserable. I know this will pass but for now it's no fun. I'm so tired of her always feeling like crap. James and I were talking about it this weekend and what's the worst part for us is that we feel like she probably has never had a day where she feels great. How awful that at 21 months old she has never not been sick. Please don't take things for granted especially this time of year. Cherish what you have, we do, and look what our lives are like. She now has a GJ tube with a tube going to her stomach to vent her when she starts to vomit. We talked about the whole swallowing issue. The thought is that it's a mitochondrial disease. We will know more when we see the neurologist. I guess if it was something simple or a gastro issue she would get better not worse. It usually becomes a neuro issue when there are signs and symptoms that worsen as they are in her case. She will most likely have to have a muscle biopsy, NOT FUN!!!!! I really don't want to have to do this, it is painful!! So this is where we are at. She probably won't be able to ever eat by mouth, not sure how I feel about this yet besides crushed. Drew went with us this time and he was so happy. It was comforting for him to be with us.
While we were away my Mom cleaned our house from top to bottom, THANK YOU!!! We lost
the best cleaning person/friend ever just about 2 years ago and have not been able to find anyone we are comfortable with since. We finally hired someone because there is no way I can do everything with 2 bad legs and she canceled, we miss Roxanne.
Have a great week everyone,
Janet
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Twilight ***Updated***
15 years ago
1 comment:
Thank you for updating Janet... I pray for Rylee and your family every day. I know what you mean when you say it is so hard to know that your baby feels so sick so much of the time. It is all just not right that these wonderful kids have to go through all of this. Stay strong mama!! You are all in my thoughts and prayers...
Love,
Chrissie
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