Well Gavin and Jace sure like their little brother Kai. Gavin wants to be the big helper and Jace wants to hold him all the time. The first thing that Jace did when he got out of bed this morning was to look at Kai in his crib, it was very cute! It was kind of a rough night with Kai. I barely got any sleep. He does feedings every 3 hours and his feedings take about 1 hour to do (about 1/2 hour to feed and then another 1/2 hour to vent his tube). He was a little on the fussy side and I'm not totally sure why. He seems to be a little bothered during his feedings. They have him on a 24 cal formula feeding. Levi called tonight and talked to one of the nurses and she suggested to go down to the 22 cal formula feeding and see if that makes a difference. Kai has a doctor's appointment tomorrow so we can ask about it then also. I'm hoping that tonight will be a better night. We are suppose to keep doing his wrist splints and hand rolls. He does not like his wrist splints and always wiggles his hands out of them, so it is hard to keep them on him. We are also suppose to work on some positioning things with him and some range of motion things, but we haven't gotten to those yet. We are just trying to get situated and figure out his feedings and cares first. For those who don't know ( I can't remember if I wrote in a previous blog about this or not...I have brain overload right now), Kai is no longer in his harness. They took it off when he had surgery and the orthopedic doctor said to keep it off since there was no progress. It sounds like he will have to have surgery on his hips and then will be in a body cast for 12 weeks. They want to wait until Kai gets bigger, stronger and more stable before they go ahead with surgery. We had talked to the genetics doctor on Monday and she really thinks that Kai has Type II Cutis Laxa (cutis laxa is latin for loose skin). This falls under Connective Tissue Disorder and is extremely rare. I don't remember all the scientific things about how it is tested and how long it will take to determine if he has it. She said that because it is so rare, it is hard to find enough information on it. I know that some people had mention Ehler's Danlos syndrome and she said that Kai does not fit under this. So we are still left with the question...what does Kai have? Kai has about a dozen doctors and specialists that are working with him. He has many follow up appointments. He will be starting early intervention and the follow along program. We do know at this time that he will pretty much be delayed in everything. Otherwise Kai is doing pretty good. I have been trying to bottle feed him a few times a day. He seems to take anywhere from 5-10 mls from the bottle (he takes 52 mls total each feeding) and then the rest is tube fed. Tonight he went in the swing here for the first time. He liked it for the first 5 minutes and then started to fuss. He really enjoys to be held! Well until the next post!