December 9, 2015

Big Day - Field Trip to Bass Pro & Easter Seals Family Night at the Playhouse Children's Museum!

Ethan was so tired tonight. He had a busy day at school, which also included a field trip to Bass Pro to meet Santa and to go bowling, and then this evening we had our first visit to the Playhouse Children's Museum.


More importantly though, here's a quick medical update:
  • We are thankful to report that for the last two days no one has seen any seizures, so we are hoping and praying that this most recent increase in his medications might be making a difference.
  • Our current neurologist (the one who is 2 hours away) called in a stronger dose for the diazepam. Ethan had been prescribed a 2.5 mg dose by the neurologist who saw him when he was hospitalized last month, but since it has not stopped the seizures the last 2 times it was administered, our neurologist calculated that a 7.5 mg dose is more appropriate for his weight.  So our hope is that the new dose will stop the cluster seizures, if they occur again. Obviously, the goal is to not have a need to use the rescue medication and to find a way to keep the seizures under control for good, however having the diazepam stop the cluster seizures allows for us to care for Ethan at home, unless there is a change in his breathing, etc., without needing to go to the hospital. A dear friend is going to be sending us a pulse ox, which we will be able to use to check Ethan's oxygen levels during and after a cluster seizure and the administration of the diazepam.
  • I heard back from our DSCC care coordinator, and just like we had both assumed, Ethan is still nowhere near close enough to scoring the points required to be eligible for the MFTD Medicaid waiver.
Now to the fun stuff!


Pictures from the field trip to Bass Pro:

"Look, Mom, I found a door. Can we leave?"

"What do you mean we have to stay? We've been here for 10 minutes already."

"I don't care for bowling, but the lights and this shark were pretty cool."

"Mom, why do you want pictures of me with a shark? Should I be worried?"

"Really, another one?"


"This is as much of a smile as you are going to get from me."



"Can we please go back to school now?"


Pictures from the Playhouse Children's Museum (It was a family night for families of children with special needs sponsored by Easter Seals and we were very thankful that it wasn't crowded and admission was discounted. Ethan had a good time, and we stayed an hour, but that was about all that he could handle.):



"Are you sure you know what you're doing, Dad?"


"I've always wanted to drive a combine. Great Grandpa Troutt will be so proud of me, when he hears about this."


 
"Wow, they put corn in a lot of stuff!"

"Thanks, Dad for helping me play the matching game, but why do they put corn in everything?"

"Light table and magnet shapes - score!"

"You want me to put my hands in there..."

"I'm not so sure about this..."

"Okay, maybe just a little..."

"Look at all the butterflies!"

"They are landing on our shadows."
"How does this work?"
 

 
"Oh, I figured it out!"



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