Jaw Distraction

Hello to Everyone, Paul and I brought Namine in to see Dr. Denni this past Monday to find out when she will be able to have her jaw distraction done, so we can remove the trac and g-tube. It was mostly bad news but some good news. We have to ween her faster off of the vent then we have been doing. She needs to be off of the vent completely for two months. When that is finished then they will run a series of tests to find out if the jaw distraction is what she needs and if it will help. The good news we have been pushing Namine a little harder to come off of the vent and […]


Hello Everyone, I just wanted to quickly update everyone.  We had to bring Namine in on Sunday to the Hospital.  She was having crazy heart rates.  They still don’t know what was causing it and they sent us home today.  If I get a video of her laughing and talking then I will have Paul post it tonight.  She is just so happy to be home. Back to her heart rates.  It was over 200 Friday morning and she had a fever so we brought her to the ER and she was fine, no fever nothing.  We got home she puked and pooped all over and we changed her trac and she puked again.  So we called the hospital to […]


Well it has been a crazy weekend and a crazy week ahead. Namine doesn’t have any appointments this week, but starting next Friday I think we have one every day for the next couple of weeks. I will try and take a whole bunch of pictures and put them up for everyone. I shouldn’t say i will do it, Paul will do it because I really don’t know how. I am not a PC and I am 29 years old. :) Just a little update. Namine is doing great. She is growing and getting stronger she is not liking the vent a little more each day, but she is having a harder time breathing with allergies and what not that […]

YAY for equipment changes.

Man oh man. If everyone were trained to make changes that would be exciting for us. We had a couple of doctors visits this past week and they made some vent changes. The first changes I could do myself, but the other changes neither Paul or myself could change so we have to wait for home care medical to come and change things, only they were supposed to come on Friday and never did. Now we have to change the vents around and that is a just a pain in the but. On the Topic of Namine, though, the reason you come to the site, she is doing fabulous. And I can’t remember if I told you that if she […]