After a lot persistence and MyChart messages we have a wean schedule for vigabatrin. This is the medication that we believe causes or contributes to Mack’s severe apnea, his feeding regression, breathing regression and delayed development. By august 26th vigabatrin will no longer be put into his body. For so long (8 months) we’ve had to give him this medication that feels like poison twice a day, and watch it wash away our son’s essential skills. I wouldn’t wish that on any parent. It will wear and tear at you to the point that you don’t know what is right. 

We also have Epidiolex being called in to replace vigabatrin. Epidiolex is prescription CBD oil and can be dosed more aggressively. We will continue with Haleighs Hope CBD too. Since starting halieghs hope CBD we have noticed the following improvements:

-less mouth breathing 

-playing with hair for comfort (just like uncle Clark 🥹)

-more eye contact 

-easily and more often turning head to the left 

-improved trunk and head control (with major assistance)

-improved fine motor skills with his hands arms and orally.

-brings hands to midline 

So we are so excited to implement epidiolex and see what it does for Mack 

We have also once again increased his keto ratio to get him into a deeper level of ketosis. 

Mack has been switched to plant based keto formula which has helped his reflux and is hopefully causing less inflammation in his body. Now our plan is to continue with all the new changes and see what happens. 

We have also started interviewing nurses through a home health service. This will be such a huge help and we are very happy with two candidates. I have been caring for basically a newborn for a year now. And there’s no end in sight. So, this will give Mack a couple new friends to spend time with him, do his therapies, and interact with him while I can take care of and focus on our marriage, myself and the house a couple times a week. 

Another thing that we need to talk about is my van. We found out that it had a blown head gasket which was unknown when we bought it. Before that was diagnosed we spent 981 dollars for a shop to replace the spark plugs and then the same issues happened 8 hrs later. Kelly and Kevin Kruft the owners of Wrench Works reached out and offered to take our van in and fix whatever the issue was and we were able to use a loaner while they had it all free of charge. They covered an almost $5,000 job for us.We are so moved and just speechless about this. 

God has introduced us to so many amazing people on this journey. He is so good to us and the village we have surrounding us has helped me realize we aren’t alone in this, even though we feel like it. We are seen and thought of and prayed for and blessed. And we will use all of the resources given to us to enrich and better Mack’s life to the best of our ability. 

Thank you Kevin and Kelly Kruft! The way you’ve helped us through your business will not ever be forgotten. 🤍