Holding Kai

Yesterday, with the aid of an RT (respitory therapist) I was able to hold Kai for the first time!  It was a very emotional experience for me.  Seeing Kai lying in the bed is one thing, but to actually hold him and feel how light he is, it really brings the reality of how frail he is home.  We finally got a weight conversion today; he is at 3 pounds 10 ounces, and that is up from where he had been after he lost the initial weight.  He is also up to 24 cc's every three hours, which is just about an ounce. 

Additionally, we also got partial results back from genetics today.  Nothing abnormal found.  Sounds like good news, which, in a sense it is, but at the same time it leaves us floundering for not only the cause of what is going on with Kai, but also treatment options.  At every turn we hear about waiting for the genetics tests to come back before we do anything.  Now they are turning to other sources.  His first metabolic tests came back normal, and we should receive the second set in the next couple of days.  They are going to look at how he processes carbohydrates, among a few other related things.

Today was a trying day for us all.  Zuri, who has been handling all the change really well, finally showed the strain.  She has been in temper tantrum mode since two this morning and has tried all of our patience to the max.  Part of it could be all the change, but another part of it is that she is completely off her schedule and has a cold and is tired.  Hopefully with some rest tonight and a good nap tomorrow, she will be back to her resilient self.