At home update

I will not be updating as often about McKay's health status. However I have had lots of people ask for updates and I want it for journaling purposes, so I will still be doing shorter updates.

Wednesday March 17th- McKay had his first time out of the house today! I know it shouldn't be a big first but it was. He had his doctor's appointment. If I can pass on one word of advice to any mothers or mothers to be... LOVE your pediatrician! And I love mine!!! We met with the doctor and went over EVERYTHING. We started at the beginning and went through every thing he had had, had been through, had tested, and what was still concerning. It took us over an hour. The doctor was still concerned about a few things. He agreed with the hospital on everything for his feedings. He does about 4 breast feedings a day and the rest are in his tube. He is hopeful he will not have it in very long, and wants to be aggressive about it. He also is keeping his oxygen the same, he said we will evaluate the oxygen use next week. He also was concerned about head size and muscle control, chest size and a few other things. We told him about the syndrome they thought he might have and was fascinated. He wants him to get to the geneticist as soon as he can. He wants to keep everything as we are and see us again in a week. He wants to watch him EXTRA careful until many of the issues are resolved. He is also going to be watching him developmentally extra careful as well. Poor McKay was not too happy to be poked and proded again. He also was not happy to get his 2 months shots (He just cried and whimpered the rest of the night when you touched his legs). But he did well and we were very happy with the doctors appointment.
Wednesday March 24th-Good news, the feeding tube is coming out!!! He has gained some weight (not a ton, and not quite what the doctor wants, but still enough He was at 10.4 last week and was at 10.65 this week). So we are taking the tube out. He thinks his feedings should be better with it out. It should help them be better and will help not make his acid refulx as bad. The doctor felt like he had improved a lot in the last week. He is holding his head a little better, had better color, and is now tracking. All very good things! He did want to keep his oxygen where it is at though. The home health nurse came and tested his stats while he was eating this week and he did got down a little bit. The doctor said if he was going down while eating then he most likely was going down when he was in a really deep sleep (periodic breathing). He said he looked quite a bit better overall, so we were very happy to hear that. He wants to see him again in a week, to fully look him over again and weigh him as well. Luckily I have the scale at home so I can track his feedings. If his feedings do dip down, there is a chance we will have to put the tube back in. But we all felt like it would be a good idea to take it out and give it a try. We also set up a new feeding plan, and changed things a little.