Mack is going to be off of vigabatrin on 8/28. As the wean progresses we are seeing amazing things happen and the best one is that he is requiring less oxygen supplementation. At one point he needed 1 1/2 liter 24/7. Now he's back down to 1/2 liter 24/7 where he started at the end of April!! Mack is coming alive it seems and we are seeing all of the benefits of the wean progress each day.

It took over 5 hours of phone conversations from 8/4-8/15 and reporting to a couple agencies including the Ohio Board of Pharmacy to finally receive Mack's Epidiolex prescription from his specialty pharmacy. Not because of insurance or the cost of it but because the specialty pharmacy was unable to do their jobs all the way around, in multiple departments and warehouses. That was such a stressful week and a half for me and I've been decompressing the last couple days. But thank the lord that we have it and please pray that we will be able to receive his refills in a timely manner because missing doses of seizure medications is very dangerous especially for the developing mind of a baby.

Speech therapy is going very well and his therapist is confident we can get him to eat orally from a bottle in the future. His eating skills should improve as he weans from vigabatrin. there is nothing physical causing his dysphasia like tongue ties. and we know he can eat safely with his cleft palate because up until 4/30/2025 he did so. There was just a neurological regression caused by his seizure medication so he just needs to gain those skills back.

We are pretty settled in with our two amazing nurses! Melissa has a whole career under belt of pediatric nursing, most in the Amish community and Savannah is a NICU nurse. They have both provided relief and new perspective on Mack's progress. They notice things on their shifts that are new from their previous shifts and that is really helpful because it is easy to over look since I'm with him all the time. Some things they have pointed out are: 
-He mimics our mouths with his mouth and our sounds with his sounds 
-His eyes continue to be more open, coordinated and he continues to study faces and track people 
-He is gaining strength in his legs and is very close to discovering his feet.
They have been with us for a handful of weeks and these are just some of the things Mack has improved on!


Coming up we have the consultation in September with Neuro Solutions to discuss what they think about Mack's situation, how they can help and what treatment plan will look like. 

As far as donations go, everything that we get goes straight to our savings account for when we have a treatment plan with a facility, or when we need to buy Mack's cbd oil. We have been so blessed with generosity and we feel so secure having that money waiting to be used to run after and fight for the best life we can give Mack.

before I end this post, I thought it best to share here: I would love to have a custom oxygen tank bag made for Mack while he still needs it. If there are any skilled seamstresses reading this or if you know of anyone able to do this job could you please send them my way? Oxygen tank bags take a lot of wear and tear so it will need to hold up to that.

Thank you to everyone who takes the time to read, send cards, send checks/ donations, share our story and all the other ways we are shown support. We are so grateful and we cant wait to share the rest of the miracles God gives us through Mack, with you. -Mallory

(picture of Mack with my sister Denise at his 1st birthday party)