The Monday night of my last post was a disaster. It took me about 2 hours to get Anna to sleep and then she woke up at 1am and stayed up until about 5. Of course, Kenneth was on duty. By the end of our non-slumber party I was in tears, so tired and frustrated with the lack of sleep that has been my life for almost 2 years now. The more I cried the more Anna laughed. Keep in mind that 1. the Gtube was supposed to help fix the sleeping problem and 2. She takes 50mg of trazodone and 4 mg of Valium before bed. All of this was enough to make me resolve to do whatever I had to do to fix this problem. I called the neurologist's office on Tuesday and received a phone call back not to long after from a new neuro in the group who was covering for our neuro. Yes, he personally called me (pick your jaw up off of the floor). He said he just had some questions about Anna's sleeping, or lack thereof, and wanted to talk to me about it. We talked for about 20 minutes and his solution was simple. It was this...stop rocking her to sleep, put her to sleep awake, and make her sleep in her own bed. I explained to him that she was getting feeds at night and that I was afraid to put her in her own bed because she gets tangled up in the tubing. He said that I needed to talk to GI then and restructure her feeds or move her bed into our room but that she absolutely had to have her own space. He said we needed to make the Gtube work for us He was kind but very matter of fact about what we needed to do. He did not offer more drugs. Kenneth and I talked about it and just restructured the feeds ourselves. It is terribly difficult to get answers from the GI clinic and when it comes down to it we have to find a solution that works for us. So we now give Anna 250 ml at about 2pm and then 250 ml at bedtime. Each bolus goes over an hour. She is tolerating it for the most part. The best part...ANNA IS SLEEPING ALL NIGHT IN HER OWN BED!!!!!! She usually wakes once about 4:15am but we go lay her back down and she goes right back to sleep. We are new people. I did not realize how bad things really were until now when we are sleeping. I mean, I know I griped a lot about it but I did not really realize all that 2 years of sleep deprivation had done to us. So Anna is getting her calories and we are all getting sleep. She is off of the Valium but still getting trazodone. We will begin weaning the trazodone soon as well. Things are falling into place and reaffirming our decision to get the gtube. Anna is getting her calories therefore Anna is sleeping and will hopefully be off meds soon. Those were our reasons for getting the tube. Praise God that it is working out!! Last night we decorated our Christmas tree and then woke up this morning to beautiful snow. I am excited about Christmas this year. Last year things were still too crazy and fresh and painful but we are in such a different place this year and for that I am so grateful!! I am blessed beyond measure!