Saturday, June 21, 2014

It was wonderful to see the rest of my family yesterday. Jonah was also so happy to be home. The first thing he did was get out every riding toy out of our garage and test them all out. I am so thankful that we have our boy back. Even if he does talk a little different or has a few side effects from the medications he's on. To see him happy and running around is more than words can say. 

I can't say thank you enough for all of your continued support during this difficult time. 

I can't explain the terrible feeling when your very smart 3 year old who has passed if not exceeded all of the developmental milestones suddenly starts having seizure after seizure until the seizures just won't stop. Then your child stops talking and literally can't talk or walk or tell us when he has to go to the bathroom so he just goes because he can't tell anyone. His EEG was so bad they couldn't tell when his seizures stopped and new ones started. Then to watch the doctors give him medication after medication while you sit there helplessly and watch his hand shake from the mediation or him hating having wires on his head or an IV in his arm. It is so hard to sit around and trust the doctors, as someone else said, hope they care as much as you do. It's hard to let go and let God be in control. 

I'm not sure at this point what is working if it be the increased  Keppra, maxed out Depakote, the ketogenic diet or the IVIg. But Jonah hasn't has a seizure, not even one in 2 days. Praise God for that! Often with Jonah's syndrome kids have what they call honeymoon phases where they change a medication or something  and have great seizure control for a few weeks or so then the start going back down hill. 

It really blows me away that people care so much about Jonah and our family that they would reach out and offer to mow our lawn, make Jonah his special meals or visit us at the hospital 2 hours away, open their house for us, donate on our blog so we can make sure Jonah is taken care of, praying for us, making birthday cards, taking care of our other kids, cleaning.. 

Some random photo since we've been back:

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