~As for me and my house,we will serve the Lord~Joshua 24:15

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Dec 28, 2018

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 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 came back almost instantly! 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. He is still on 3 seizure meds, but that is better than 4! 

Recently, We found out that Blaze also 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.

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. 

Over all, he is feeling so much better and doing very well! Even his DHH teacher said that her sweet little Blaze was finally back! Up until Nov, he had only been able to stay at school a few days and the rest of the days they sent him home or to the ER. Since Dec, they haven't sent home not even one seizure report from the school and we were getting them every day and sometimes up to 20 or 30 in a day. That's how much he has improved! I think we have finally found a good combination and that's why he is doing so well!

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! 

Dec 25, 2018

I think they made the GOOD list...

This little dude woke up at 2 AM!
I read him the story,
"The Night Before Christmas" at bedtime
and tried to explain to him how Santa 
comes when you are sleeping and that
he would be coming that night.
I think he finally understood how 
this Santa stuff goes,
because he woke me up at 2 and 
signed "Santa" and "Come on"!
How could I tell him no??

Trying out big brother's skateboard.

This little girl has been so much fun this Christmas!
She is at such a sweet age now.
Well all ages are sweet but she has really
enjoyed getting ready for Christmas
with all of the Christmas music, decorations, etc

This little sweetheart is to precious for words.
He woke up a little after 6 and he brought me 
the gifts that he bought me from the 
 school store beforehe even opened his gifts.
He has the sweetest heart ever! 

The baby was last to wake (7 AM).
She was still half asleep and in shock...lol
She didn't know what to open first. 

These babies bring so
 much joy to my life!
I am blessed to be their mom. 

Dec 24, 2018

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