Too much time has passed now since my last time writing.  I can't even believe that it's been 2 years since we began this journey with Gianluca.  March 5th marked his 2nd birthday.  He weighed in at 18lbs 2oz, approximately 28 inches tall.  Still small but he impresses everyone he runs passed.  Yes, I said runs.  He is on the move and never stops.  Once he began walking he just kept progressing at full speed.  He's crawling up stairs and loving walking up stairs with assistance of a hand.  He thinks he's big enough to walk down, them also.  We are trying to encourage him to turn around and crawl down backwards but to him it's not as fun.  I think it will be a while yet before he's walking up and down stairs on his own.  His legs are still a little short for that.


We've been working on feedings a lot.  Gianluca is doing great.  He eats 3 meals a day now, sometimes four.  We bumped up his feedings so that he talks more in eat feeding.  We realized that we were still just working on the one jar which made sense for his size.  The we realized for him to really get a boost we should make our way to doubling his meal sizes.  Now he eats the equivalent of 2 jars of food, typically a total of 7-8oz.  He does well with it.  He's eating at a stage 2 into stage 3 style baby food consistency.  He will not put anything else in his mouth.  We've tried the toddlers snacks and he just has no interest.  We figured as long as we're able to spoon food the other we're doing pretty well.  


About a little over a month or more ago we began giving him all his meds in his meals.  This way we do not use his feeding tube at all.  We have a visit to the feeding team at Children's Hospital later in March.  I have been requesting to have the tube removed but the overall answer is wait until the feeding team appointment since they are a part of the GI clinic.  At this point if they tell us we need to keep I will need to take matters in my own hands.  I really would hate for the clinic to put me in that position.  


Some of our goals now are to work on potty training and moving over to a sippy cup.  Gianluca is so set with his bottle he will not accept anything else.  It's a challenge that is hard to battle.  We really can't take the bottle away because we need him to still be taking his formula but on the other hand we need him to eventually move away from the bottle as he's getting older. Pick your battles, I guess.  As for potty training we starting about a week ago just getting Gianluca on the potty after he wakes up in the morning and after naps. He doesn't seem to mind.  I usually put him right in front of a mirror while he sits so he can play with the baby.  I think by now he realizes the baby is him.  


An update on Gianluca's O2 needs, we are supposed to still give him O2 at night.  Unfortunately, he's too smart even when he's asleep.  He doesn't keep it on for very long.  He so smart in fact he pulls if off and wakes up crying for our attention.  We were having so many sleepless nights that we reverted back to the playpen being back in our bedroom for him to sleep there.  Many a times he lands in our bed in the early morning shoving us to the edge and nearly right off the bed.  Master of his castle.  


My favorite time with Gianluca is just having him sit and talk to me in my lap.  He will sit content with a toy talking to me about it.  The funny thing is when he sees my cleavage.  It's a story I'm sure he will hate when he's older that I published it on the internet.  When he sees my cleavage he thinks, maybe something is in there so he sticks his finger in.  I'm not exactly sure why he finds it so curious.  


I find it so amazing how he can calm me so simply.  When I'm holding him he's finally gotten to hugging.  He will wrap his tiny arms around my neck and grasp on to my shirt as tight as he can.  His ear down to my shoulder and his legs wrap around me.  It immediately warms me from head to toe.  I don't think there is any better feeling that that tight hug from him.  It not only comforts him but it makes me forget all the tension and stress in my life for that moment.  


Thinking back to 2 years ago when he was just so tiny fighting for his chance to walk and laugh and play.  You'd never know looking at him that he had to fight for this life.  In honor of his 2nd birthday we visited the NICU in Waukesha.  It was so nice to see the couple of nurses that were on duty and to thank them for saving his life so many times.