Though he brings grief, he will show compassion, so great is his unfailing love. - Lamentations 3:32
Saturday, March 14, 2009
Evan had a good day yesterday. We got to hold him a lot, maybe too much. He was overstimulated last night. He won't open his eyes, they are still pretty swollen, so it is hard to tell if he is awake. Sean was teaching him how to play video games to prepare him for Garrett and Grace coming to visit today and we also put some clothes on him. He did not like getting dressed, but he looked so cute afterwards. The docs have given us some more information about Trisomy 13. The test results we received was a rapid test and we are still waiting for a more indepth results. He can be full Trisomy 13 which means every cell in his body has an extra 13th chromosome, partial trisomy 13 means every cell in his body has a partial 3rd 13th chromosome, or mosaic which means random cells in his body has an extra 13th chromosome. The results of that test will determine how he does so please continue to pray for these test results. Right now we are trying to wean him off the vent. It has been at its lowest setting since yesterday morning. He had a good day, the vent will only take over if he holds his breath or is not breathing enough breaths per minute. He did it all on his own yesterday. Last night after we left he had to be sedated and he relied on the vent a few times. That was probably because of the overstimulation yesterday. He was pretty agitated before we left and he was having to be suctioned quite a bit and he really hates that. The goal right now is to get him off the vent and the lines out of his belly button so he can start eating. Thank you for the prayers, calls and emails. This has all been so overwhelming and the messages have really helped keep us going.