Update on Blaze...

It's been a while since I've done an update on Blaze. I am happy to say that he is doing well! He was recently weaned off of one of his seizure meds and he has handled it so good! We have tried several times over the last 2 years to come off of this med because it made him feel so bad and changed his personality. The neuro decided this time that we would wean him very slowly over several weeks (3 months) and we finally got him off of it! His sweet happy personality is back! He did have to start a new med in its place but he has had much better seizure control. It's actually been almost a month since he has had a seizure! He was having them daily and sometimes several times daily. 

Recently, We found out that Blaze has a carnitine deficiency. They started him on a medication for that. This type of deficiency can also cause him to feel bad and be tired. Since starting it, he is not nearly as tired or irritable.

He just seems to feel so much better! 

We also started a new formula, Nestle Compleat, and he has tolerated it so much better than he did the pediasure. He feeds 6 times daily through his g-tube. His energy and health have really turned around since he's gone through all of these changes. 

2018, has been a tough year for Blaze and he had some major regression this year... which we are sure is probably due to sickness and so many seizures. However, I believe we are finally at a turning point and hopefully, things will be better from here. We look forward and praying for a better and healthier 2019 for our Blaze! 

This little boy continues to amaze us every day. He is for sure my lil superhero. I love my Blazer!