Skip to main content

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!"



Comments

Popular posts from this blog

So much and so little to write about...

When I started this blog I don't think that I could have imagined a time would come in which months would go by without me writing. However, that is what has happened.

So much has changed over the last almost eight years since Ethan's birth and subsequent diagnosis with PBD-ZSD, yet at the same time so much hasn't. Unlike parents of typically developing children we find ourselves still parenting a child with complex medical needs who's developmental skills range anywhere from 9 to 18 months. Ethan still has PBD-ZSD, and right now his uncontrollable seizures are a major issue. We still fight PBD-ZSD the best we can each day with a basket full of medications and supplements and other medical interventions (feeding tube, cochlear implant, AFOs, etc), numerous therapies, school (which Ethan loves), and prayer. We advocate for him and all children and families impacted by PBD-ZSD and related peroxisomal disorders through our involvement in the Global Foundation for Peroxiso…

#PauseForPBD -- October 5, 2017

October 5th is a special day for our family as we celebrate #PauseForPBD, the annual awareness day for The Global Foundation for Peroxisomal Disorders (GFPD). [Jeff's birthday also happens to be October 5th but he doesn't seem to mind sharing it with #PauseForPBD day.] Our son, Ethan, is 7 years old and is one of less than 200 children, known to the GFPD, living worldwide with Peroxisome Biogenesis Disorder (PBD).  Ethan has a contagious smile and laugh, despite the fact that PBD has caused him to have severe cognitive and physical delays. Peroxisome Biogenesis Disorder (also known as Zellweger Spectrum Disorder), is a rare, genetic condition affecting multiple organ systems in the the body. PBD is generally fatal in childhood. As a parent, it is difficult to express the sense of loneliness and feelings of isolation that enter your life when your child has a rare genetic disease that most people have never heard or and has no cure.
However, #PauseForPBD, is a day that brings o…

Faces of Peroxisomal Biogenesis Disorders

This Saturday we are hosting the first annual Pancakes for PBD benefit.  All the proceeds will go to the Global Foundation for Peroxisomal Disorders to help offset the costs for our family and others like us to attend this summer's 2012 Family Support Conference in Orlando, FL.  We hope that this will become an annual tradition and allow us to help raise awareness and money for peroxisomal biogenesis disorders.

Here are just a few of the faces of PBD.