Where we're going

I can't say that blogging is my talent.  Our lives have been so busy I just forget to write it down.  I truly and thankful for writing as much down as I have in the past because I realize how much I forgot as we move forward.  Daily, we are reminded that Gianluca is 2 years old.  He may wear 3-6 month pants but his terrible 2 attitude is expressed in everything he does. 

The latest on his weight is that he still hasn't quite hit 19lbs.  He's getting taller, about 30 inches.  He is just too smart when we go to the doctor now.  He knows immediately when we arrive and he knows what's going to happen. His death grip comes out and he cries.  We have to stand on the scale with him to get his weight.  I recall one visit to the doctor where we got his weight and height in the midst of his screams and when we said "all done" he sniffled and looked at the nurse and said, very loudly and clearly through his sniffles, "BYE".  Gianluca is a very tough little man.  It was the same strength and attitude we viewed while only days old in the NICU.

This week's visit was to Pulmonary Hypertension and to have a swallow study.  His heart meds were increased with his weight.  I have to say the side effects of that make me wonder about the long term effects.  We've been waiting on the swallow study for some time.  We had out visit to the feeding clinic about a month back.  My request was to increase the variety of his foods and to remove the g-tube.  Once the swallow study was scheduled I scheduled ahead for the g-tube to be removed.  It was not easy to do.  The nurses fight you when you don't have a doctor asking for the appointment.  I just knew it would be difficult to get the appointment if I didn't plan early.  As far as the results of the swallow study, we have no more aspiration.  We couldn't get Gianluca to cooperate much during the appointment, but we got some spoon fulls in with a few different textures.  Everything went down cleanly.  Even juice fed with a spoon.  To me that means the g-tube is coming out.  To the doctors, we'll have to wait and see.

Aside from the couple routine visits to the doctor we haven;t had any hospital visits.  HOWEVER, my husband did land our son in the emergency room.  I can't blame him for worrying but I am thankful for insurance. He ended of calling an ambulance one night thinking Gianluca was really sick.  What he didn't realize is that when Gianluca gets sick he gets very tired early in the evening which to him meant lethargic.  So when I returned home to find the ambulance, as any good mother would, I banged on the door to get in.  I compromised to let them take him to Waukesha.  Three hours and a chest x-ray later, Gianluca had an ear infection.  The silly part was that my husband took him to the pediatrician the day before for a bad diaper rash.  Had the doctor done a quick check-up the visit would've been prevented.  Oh, well.  I just hope I don't have to go through that mess again.

After all the drama, we do have a pretty average day to day with Gianluca.  He is so into cars right now.  He hasn't gotten into the crashing and destruction stage yet.  He is all about the wheels and pulling his rolling toys behind him, rolling cars across the hard floor, playing with the wheels on the stroller, etc.  My mother thought she lost him until she she figured out one of his favorite spots is in our room, behind the curtain, watching the cars go by.  If we walk through the garage or parking lot and a car is moving he is stuck like glue in that spot watching.  I love that he has an interest.

We're still dealing with Gianluca waking up occasionally through the night.  In my idea to give him more freedom and help him sleep I transitioned him to his toddler bed.  I bought these great inflatable rails that fit under the sheet so once I took the one side off the crib he would still have this little hump to keep him from rolling out.  It's done it's job there, however, he still stand up and waits for us to come or he just sits and cries for us.  We've showed him how to crawl over them but I think at night he's just too sleepy.  He ends up in our bed in the morning or out watching sesame street since he'll wake up while I'm getting ready for work. My husband isn't thrilled with needing to be up so early but there are the days Gianluca sleeps until 9am. 

This summer is going to be a great one for us, as a family.  Later this month we are taking our first official family vacation.  We are driving to Savannah and then to Myrtle Beach.  It will be a long journey but I think it will be well worth it.  We are still worried about putting him on a plane with his lungs so we just prefer to avoid it for now.  Llazar's mother is coming for a visit this month.  She will be coming with us on our vacation and staying for the summer.  It will be the first time Gianluca is meeting his Nana.   I can definitely say that this summer is just the beginning of many more busy summers.  It's very rewarding to finally feel "normal".