Macsen is 6!!!

We had such a fun trip to Gulf state park for Macsen’s birthday ❤️ We love that place - the beach, the pool and miles of bike trails. He loves Lambert’s restaurant - their thrown rolls and endless fried okra- so we ate there for lunch Saturday. Other birthday requests we were able to fulfill - night crab hunting, soggy nachos by the pool,bike rides, kids "champagne" and  ice cream cake (he was not a fan of the cake lol.) We saw 2 snakes - one slithered over his sisters foot in the shower 😳 I feel so blessed we were able to celebrate his 6th birthday together doing things we love. 6 years ago we weren't sure if we would get a moment to hold him, if we would ever hear his voice or know his favorite color. If we would ever know if he was a cuddler or preferred his space (he is entirely the former.) We have had 6 precious years full of firsts, full of miracles, full of prayers and tears and fear and stress and magic and love. Every moment so much more precious because we never knew if we would have any time with him and conscious that we don't want to forget anything because memories of these moments may have to  sustain us if he leaves us too soon. 

First day of Kindergarten

Macsen’s first day of kindergarten! He woke up at 6:30, sat up and said “What’s today? Monday? First day of school day?” He ate a big bowl of curry and rice (his food of choice for the past few weeks) and was ready to go. We are starting off slow to see how well he tolerates it.
Update : He did really well and came home singing " skinny ma rink a dink ee doo." I think it's going to be a good year  

Macsen met his classmates

Mac’s fever never came back last night and he slept pretty well with no other symptoms. Maybe he was just exhausted from his Birmingham appointments?
He picked out his outfit - he really wanted to wear his Lightning tie from Lisa and Cemaia ❤️ And he made it to school to have his picture taken and meet his classmates. He only lasted about an hour before he said he was “ezzausted” but hopefully his stamina will increase as he settles into their routine. I meet tomorrow to help hash out the particulars of him going to back to school officially.

Time for some cheering up

We all needed some cheering up before heading home so we went for a walk to the McWane Science center. The kids love this place

Transplant clinic appointment today

Mac is not happy we aren’t done yet 😞 Transplant clinic is over and now we are on to pacemaker check and X-ray. I am feeling so discouraged that his labs looked worse and his doctor felt we need to list him for transplant soon. I was hoping for improvements and wasn’t expecting him to be worse then his appointment a few weeks ago.