Jack’s Story

Site created on April 22, 2019

Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.

Newest Update

Journal entry by Nicole Berrigan

Well it looks like quarterly updates are going to be our thing, which is good in a way because it means nothing super challenging has happened in the last little bit!  We were able to wean Jack down to 3 seizure medications, but when we tried decreasing the dosage of the next one, his seizures came back (though very few compared to what he was dealing with before).  Once we went back up on that medication and weight checked one of his other medications, the seizures subsided.  So what that means is that everything he is doing now (keto diet and 3 medications) are all actively helping to manage his seizures and we are going to stay on this track for the foreseeable future! 

In general, has Jack continued to progress and develop.  Jack has experienced periods of regression in specific skills (oral and fine motor) without a known cause and the best we can guess is that it just may be a product of how his brain works.  Thankfully after a period of time, he is tending to be able to resume the lost functions, but the waiting in-between can be challenging.  

He continues to have great head control, enjoys banging on his piano toy, and loves going out on walks in his stroller.  He is also experiencing separation anxiety which is a great developmental step (though challenging in its own right as most parents know).  He especially loves Daddy right now, which is so sweet to see (until you have to hear Jack bawling when he happens to see Pat in the house when our nanny is trying to take care of him).  

With everything going on with COVID-19 we are taking all of the protective precautions seriously as Jack is considered a high risk individual for any sort of respiratory illness.  Both Pat and I are working from home now and pretty much only venture out of the house to go on walks in our neighborhood and go to the grocery store as infrequently as we can.  I am just grateful the weather has been so wonderful here and we have been able to spend so much time outside, which helps us from feeling too cooped up.  Our nanny is still coming to watch Jack 3 days a week, but all other therapies and appointments are cancelled.  Our PT and feeding specialist are trying to get everything in line to do teletherapy which would be great so we don't just loose a month or two of support. In the meantime, we are taking this opportunity to get Jack into a more consistent napping and eating schedule, now that our lives don't revolve around the next therapy or appointment.  That is definitely one of the silver linings of this season of quarantine! I hope you all are able to find your own silver linings in your response to COVID-19 and if anyone is interested in a virtual happy hour/catch up, I'm sure Pat or I would be all about it! 
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