Wednesday night Tammy, mom and Robyn came to visit. We had a little party in Jaden's room. Mom thanks again for the wonderful presents. The color coordination was wonderful. We stayed until around 11pm or so. Jaden was not feeling that well and when we tried to leave he would cry so it made it really hard. We then raided the fridge at the RMH and then Robyn and Tammy had a sleep over. We did not get to bed until 12:30am. We all had fun. Robyn is spending the night again tonight. This does make my week go by a lot faster and it helps me to get my mind somewhere else.
These last 2 days have been a little difficult for me with Jaden. He has not been drinking hardly anything from his bottles. We have tried 3 different nipples and have been thickening the breast milk but have a really hard time because the protein in the breast milk does not allow the thickener to stick. So we are having some trouble with that.
They also want to send Ears Nose and Throat in tomorrow to do a scope of his vocal cords and folds.. They are worried since his voice is still so soft and he is not eating well that maybe he has some damage done to his vocal folds. So we have hit a new set back as not only does Jaden need his milk thickened, the breast milk not adapting to the thickener, him having a hard time figuring out how to use the bottle, but now also his throat stuff. I have asked for somewhat of a time frame until we might get to leave and they said a minimum of 2 weeks. (I had to ask many people before even getting this answer, so I am thinking that might mean longer then shorter). Of course they are not sure how long until we can get everything figured out but it will be awhile. They said that if nothing major is wrong with his vocal stuff, that it could take up to 6 months for him to have it all normal and be able to hear him well. Of course this means possibly 6 months before he may be able to eat normal. I will let you know the details tomorrow from the test.
I also have a cool surprise I am working on for the blog. It will probably take me a few days but keep checking back. I am hoping it works and it will be really cool for you all. Lets just say that it may help you feel like you are able to experience Jaden better. I know this is a teaser but it is something exciting for me to work on and keep my mind on other things.
Hope you all have had a good week so far and I will write more tomorrow. Love you all, Steph