Happy Halloween

Macsen had fun this Halloween. He would say "hee ho heet" (Trick or treat.) He was afraid of the scary houses and wouldn't get close to them but loved riding in the back of the truck, despite the sprinkle-y weather. His favorite candy is still the classic blue dumdum that turns his lips and tongue blue - yeesh! I hope everyone else had a wonderful time as well!

Was wop! Geen go!

"Wa wop! Geen go!" He says to his cars, sending them racing across the floor. Red stop, green go! So amazing to me when 2 months ago he couldn't string 2 words together. Now, I hear him trying to imitate our words and he picks up a new one almost every day.I attribute it to the increased oxygen he's getting and maybe the new supplements. In addition to the CoQ 10, multi vitamins, elderberry, magnesium, vitamins d/K2,  probiotics and iron I restarted his fermented cod liver oil and another food based powder to add to his milk called IQd. I have also been diffusing frankincense bc I read new studies have found it helps with recovery from brain injuries in addition to stimulating production of human growth hormone. Macsen is still not up to his presurgery weight of 30 lbs and hasn't grown taller either. I think another trip to the endocrinologist is in our near future.
He is still not eating food or sleeping more than 2 hours at night which is a big bummer. A really big one. I can't remember a time I wasn't functioning on a few hours of sleep. I long to be productive ... if he was waking to goof off I could put him in his own room to do that but bc he wakes crying - rubbing his legs, or feet, or bc he will finally drink some milk and take in some calories- last night he drank 3 bottles and needed 2 diaper changes in addition to sporadically crying that his legs hurt- I can't just let him cry himself to sleep in another room...

Slowly but surely

Macsen seems a little bit better every day. He chatters constantly now. On a 90 minute car trip he gabbled and chortled the whole way - seriously! The girls were all like "Macsen! Hush!" Giggling along with him. He has a few new words he uses consistently now - "whoa" for "no"- is one of his favorites. "Are you hungry Macsen?" "Whoa." "Do you want to go inside now?" "WHOA." "Are you ready for bed?" "WHOA!!!!!!"

1 month post op

Macsen's 1 month post op cardiology appointment went well. We got to stop the Lasix! Yay! No more giant wet diapers and we car seats. His function looks good too. and MAcsen was a champ - happily smiling the whole time. I was afraid he would be traumatized from surgery and experience PTSD like he did after his last open heart but he was calm and sweet as can be.

We had a great time camping at Gulf State park. they have wonderful biking trails and a huge pool that was a little too cool to use in October. Sadly, our "new" truck overheated on the way to his appointment and we had to wait on the side of I-10 for the truck to cool down. Not sure what the problem is but hopefully it is an easy fix.

New(ish) truck

Because this sight, although adorable, is getting too frequent on our old 2004 van.  Aaron's '99 Accord is sadly on it's last legs as well . We feel a little more confident making such a big purchase because  Macsen is finally POST FONTAN so we bit the bullet and got a new (to us) truck. We bought it locally at the large Chevrolet dealer - Enterprise Chevrolet. It should haul our camper well for all M's out of state appointments and Aaron just loves it.