Wow, lots going on but only going to do a quick update. Disney started off with a morning trip the doc in a box for Drew. He also had an E-infection. A little late but never the less we hit the road. We were so excited to get away for a bit, we needed a break. The first day was ok but then we found out my FIL was in the hospital in renal failure. We toyed with idea of heading back but after talking about it, we thought for Drew we needed to all stay and there was not much we could do anyway. After a week and a half in the hospital he is home and doing much better. It was a crazy 2 weeks. Rylee did well the first day and that was it, she was pretty miserable. The food they had her on was not doing well with her system. Yet again we had to switch her. We saw neuro on that Friday and we were told to see Gastro again and then they would talk. Her weight is up a little and that's great. Since the conversion she has gained and hopefully with the right food she will continue. I know she is no where on the charts but I will be happy if she at least follows her own curve. Basically at this point we have to decide how much further we want to take this. Lot's for James and I to talk about. I'm a need to know person. We are busy getting ready for the holidays in between all the hospital visits, Dr's, therapy etc... I really want to get into the x-mas spirit it's just not always easy. As a kid I loved the time leading up to x-mas, now, It's after when I have time to sit and relax and enjoy it.
I know this is brief and I'm leaving large chunks of what's going on out but this is all I can write now.
Janet
1 comment:
Hi, sorry to post this here but I did not know how else to get in contact with you. I just wanted you to know that I just got to check the comments on my blog. I did not see it until after the posts back and forth about the tube. My girlfriend who commented Anonymously was just looking out for me. When we were told that Sebastian had cancer so many folks tried to comfort us by telling us about someone they knew who had it and was ultimatly fine...it was hard to hear at that time and she knew that. She was bothered by the person who posted AFTER you. I was not offended by yor comment and appreciate your input. I know you have gone though quite a bit yourself. Thank you for caring about us :)
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