Appointment day

Bamming toys together - who knew that was considered PT?

We had 2 appointments today. We saw M's pediatrician. He has gained weight! He is now 14 lbs 14.5 oz which may sound tiny for an 8 month old but he is on the growth chart! He fell off months ago but is now in the 1st percentile. I couldn't be more proud! Of course my happy bubble popped when his ped mentioned something after stating she is happily amazed how well he is doing considering his HLHS. She said when she hears HLHS she always prepares families for the worst because out of 7 patients she had with HLHS only 2, Macsen and a little girl we've met named Lucy, are the only ones still alive. POP! Coincidentally, we are the only 2 that didn't go to UAB for our baby's surgeries but chose to go to a heart center with much higher surgical volume/experience. But hearing her say that, that her statistics with HLHS children in this area - being treated in this area- are so low -  less than 30%- made me want to pack our bags and fly to CHOP. It's now been almost 4 months since he's been seen by his team up there and I am feeling insecure now, like we'll miss something here. Families that live nearer to CHOP are commenting on their day long clinic visits with their neurocardiac teams and I am feeling like I could be doing more for Macsen to ensure he's getting the best care. I will email his card up there just to see if there are things we can check from here or if we need to consider another trip up north in the near future. I know he's growing - finally - and I should be happy.... I AM happy I just want that piece of mind I get when I know I have done everything I can to make sure he is ok. 

His PT went ok- he missed his morning nap since we had that earlier appt and he was cranky - he still smiled and worked really hard but he was so worn out after. She does a lot of chest stretches and scar massage and I almost feel like he was sore. He slept for a while on the way home but was so overly tired it was hard for him to fall asleep tonight. He was so unhappy I didn't want to put him through me leaving (it was my night to go to our awesome mixed martial arts class) - I know he would have cried until I got home so Aaron got to go instead - lucky. I love that class. M and I took a bath, put some soothing sleep inducing essential oils in our diffuser and he seems to be sleeping pretty well now. Phew. 

Last night he woke up and wouldn't go back to sleep.  After stopping the movie for the 10th time to soothe him I brought him out and he had his first late night movie date with mom and dad. It was funny - a zombie movie called "Warm bodies." M was entranced - thrilled to be up with the grownups past 7 :)