Big progress in milestones!

In August we had 16 appointments for Mack, ranging from reoccurring therapies, case management meetings, labs, a sleep study and  in person specialist appointments. In between all of that craziness I was still able to go to work and learn new things, have alone time, get away with my husband and friends and just be Mack’s mom. Praise God. 

We moved Mack’s room from upstairs to our downstairs office. Now he has his very own bathroom and it’s not such a hazard to put him to bed anymore with out the steps! I need to get some shelving so his clothes and DME supplies can come down to his new room too.

Mack got thousands of dollars worth of new special needs equipment delivered today ALL covered by his primary insurance- Cigna. We got a new stander. One that he can begin on his belly or his back. We got a new tomato chair with a wedge base and interactive catchup base and a new Otter bath seat. 

Mack is back in weekly physical therapy and will have speech and PT every Tuesday back to back again. At his PT eval last week he rolled over with the smallest amount of help we’ve ever offered. We were shocked! 

Mack is progressing in tolerance with tummy time and can do a whole 7 minutes without crying and he engages the whole time. He is very proud of himself after each work out and often smiles after he’s done protesting. 

We are waiting for a new seizure med to arrive which will then allow us to wean keto and the other 3 meds he’s on that we are done trying. Hopefully when he’s off of keto, his growth will kick back up again. There is a risk for his milestones to stall or regress without being in ketosis so I’m praying that will not happen. Keto has been causing terrible digestive issues since his adenoid surgery. 

In a couple weeks the only fundraiser we have planned is happening! 9/19 The Parade of Lights Truck Show at the Mount Hope event center beginning at 12. The parade with follow at 5pm and we will have Mack in our van towards the front to wave at all of our supporters. Mack may not be visible behind the windows  due to his intolerance for wind but he will be in there! And I will be crying. Haha I am so excited! We will be on the grounds the entire day. Mack will be comfortable in a hotel room on the event center campus and we will accept visitors if he’s doing well that day. 

Just some happy updates for everyone who follows along. I hope to see everyone at the event! 

-Mallory