Macsen is 3

We had a small, family only 3rd birthday party for Macsen. He is still on sternal precautions so we thought it best to keep it small this year. He had a wonderful cake featuring his favorite character Baymax. It was made by a very special baker who donates her time and talent through a charity called Icing Smiles. I think Stephanie, from Tanta's Treats in /Ozark, Al went above and beyond - she even made a tiny Super Macsen. We loved the whole thing. He loved his new cars - our house resembles a giant Hot Wheels garage now. I gave him all his favorite foods to chew up and spit out and we played kick ball outside. It was a good day.

New member of the family

Meet our new dog! I found him on FB and after talking to his current owner (she kept him for a friend who moved overseas) we wanted to see if he and Macsen might make a good pair. He is so gentle and sweet and not super high energy. The kids are calling him "Hiro" today (he's had several names already) but this one suits him and is from one of M's favorite movies Big Hero 6. He's not house trained so that's the first thing we are working on but he sure has adorable, cuddly and sweet nailed. 

 Macsen has been doing really well. He is 3.5 weeks post op.  He is running all over the place. He has been enjoying all his cars and trains - mainly green ones this week. He says "Geen!" He is starting to play chase again and wants you to chase and tickle him. And he jibber jabbers all the time which I love to hear. 

He's still not eating and today started vomiting again,  not just retching. I was hoping that was over :( he has completely stopped eating any solids. I will probably restart his periactin that helped him a lot with vomiting and helped him gain weight. 

He's still in pain - especially at night and we have thankfully finally found a flavor of Tylenol he'll tolerate - bubblegum chewables we dissolve in a syringe. This is the 4th or 5th kind we e tried - he spits all others out, cries and fights. 

He cries and tosses a lot in his sleep - all night, every night . Tylenol definitely helps so I think it's pain vs night terrors or hunger, though he still drinks the majority of his calories overnight while he's asleep. He seems in less pain during the day though. He's playing harder and saying "ow" less. 

He turns 3 (!!!) 1 week from tomorrow!its surreal to me that we are here! With every milestone it's impossible for me to not remember the Drs giving us such poor odds for him, the suggestion to terminate our pregnancy or bring him home and let him pass away. His life so far may not have been all sunshine and rainbows but he has proven every second of his life that he deserves to be, and wants to be, here with us. No one deserves those rainbows more than him. I am excited to celebrate his little, yet mighty, miraculous self

Home!!!!!!!

Home!!!!!Feeling incredibly blessed, lucky, grateful, overwhelmed by the prayers, texts, calls, and thoughtful gifts. Pilots for Christ arranged for our flight home which is more than amazing. My sister took more time off work to bring us to the airport. Macsen was a sweet little cherub on both flights. And it is so, so, so good to see the girls. We have missed them like crazy. My house was beautiful and neat thanks to my sweet mother in law.

Macsen mostly played with his sisters (his YaYas) but did visit his train table too. He is sleeping soundly now in his own bed. I can't believe we are home and post Fontan. 

Now to get on with the rest of our lives.  Thank you everyone who helped us get here - we couldn't have made this journey alone