18 months old

Macsen is 18 months old today! He has a cold so was a  little crabby but he picked out a GIANT Elmo balloon. He loves Elmo - it is one of the few words he says. "Elmo, Uh Oh, Apple, Off and On, and HOT!" You know, only the necessary words :) You can make some interesting sentences with those words! He's cruising pretty well from leg to leg - or table to chair. He had therapy yesterday and his PT thinks he's still a little wobbly/weak to be walking anytime soon. But he likes to walk by holding your fingers and tries to make me walk him to the door all day so we can go outside. He loves it outside - he wants to ride his spring horse, ride in his little push car, or sit on the trampoline while his sisters gently (and not so gently) bounce him. He laughs the whole time he is falling on his face.
Today at the Publix Deli counter I was buying sandwich stuff and our favorite Publix employee- Ms Donna - gave me some cheddar to try. I haven't had cheese in ... over 18 months so I handed it to Kissy. Macsen wanted it so badly I decided to tempt the Dairy Intolerance Gods that have plagued him his whole life and I gave him a nibble. He ATE IT!!!A nibble at a time but he ate it - only spitting it out if I gave him too big of a nibble. He ate maybe an 1/8 of the slice as we shopped for the rest of our stuff. He didn't puke and other than the extra crankiness I think he tolerated it ok. We'll try again another day but I would love to be able to give him cheese! All those calories. He's almost 19.5 lbs
We are gearing up for our next trip to Philadelphia. Check-ups and testing. Maybe we'll get more of an idea for his next surgery. He also has a cardio appt coming up in Pensacola on Monday. No matter how many times we do this I still feel myself tensing up the closer we get to looking at his heart. I feel the stress like a shadow - I don't know it's there until I look for it and then I realize it's been following me all day/everyday and I just can't shake it.
It will be good to get all these appointments over with. I'm hoping we get lots of reassurance/good news/ and a vague surgery date for somewhere more than 12 months away so we can enjoy this age - this 18 months -2.5. I love this age. Macsen woke me up the other day giving me bug "SWAK" kisses all over my face interspersed with gentle Eskimo kisses. It was truly one of the best mornings of my life - despite the fact that he woke up his normal 5+ times to eat overnight (still taking in over 1/2 his calories overnight) and it was still dark outside. He's a loving baby boy who's hugs are a gift to everyone he bestows them upon.
We just got back from a Medical Conference in Pensacola for Heart Families where we met other CHD survivors and their families. We also met a charismatic 20 something double heart transplant survivor named Bill Coons who spoke about his journey. We all had fun and Macsen actually spent a little time away from Aaron and I in their nursery. He loved it and charmed the women volunteering in the room.
 I keep forgetting to post a link to the Heart Walk we are participating in. It is in Atlanta Mother's Day Weekend and we are raising money for the Children's Heart foundation. They are a wonderful organizarion that funds a lot of research in the CHD world. http://www.childrensheartfoundation.org/research/chf-funded-research
Please consider donating to our walk. We appreciate every single donation - be it $1, $10 or more. We are trying to raise $1000 in Macsen's name.
Miracle for Macsen Heart Walk

Macsen's first Ball

M had a great time at the Cinderella ball. We go every year (though Aaron and I missed it last year b/c we w were in Phillly w/ Macsen getting his 2nd surgery.) I could hardly keep the girls still long enough to take a picture before we went in. Macsen bopped his head - very Night at the Roxbury in his shiny grey suit dancing only with his head. We danced all night and all had a wonderful time

17 months old!