Hungry, Grumpy Gus

So this is what it's been like it our house the past few weeks...  Poor Connor just isn't happy.  It's the side effects from his medications.  They make him grumpy and HUNGRY!  And did I mention grumpy?!  Poor kid.  The only happiness he has these days are those quick moments when he knows the bottle is going in his mouth.  He chugs eight ounces in 2.35 minutes and then begs for more. 

I really miss my sweet, smiling Connor.  He was a pretty fussy baby with his reflex and everything but that was only at night before bed.  Now it is a constant stream of fussiness and frustration.  It's difficult for all of us.  The only times he is happy are the 2.35 minutes when he's drinking a bottle and when he's asleep (which is getting less and less these days).

If you can't tell from the video, he's putting on weight too!  He gained 2 lbs. in a week and a half.  He weighed 20 lbs. when we were admitted to the hospital and now he weighs 23 lbs.  So we have to restrict his eating even more than we were trying to before.  Mason came up with a genius plan to give him half strength bottles, which really does work great because he feels more full, but at the same time, we have to give him twice the amount of bottles that we once did.  I'm not complaining - you get what you get and you don't throw a fit - I'm just documenting this time in our lives.  :)

We did get some good news today... NO MORE PREDNISONE!!  For now at least, he won't be taking the Prednisone and the ACTH (the injections are going quite well) at the same time.  Hopefully that will help his side effects somewhat although the ACTH is a hormone too so it will mess with him as well but at least he won't be on both at the same time.  He is still having a few spasm clusters... none today or yesterday but Saturday, Sunday and Monday he did. 

We're getting settled and attempting to unpack but we've fallen into somewhat of a routine and that feels good.  Even though these are difficult times for us in many respects, we're happy!  My mantra for the moment:  Come what may and love it!  My trust is in the Lord and my eternal perspective keeps me going.