Spaghetti Dinners and Seizure Meds

Well, well, well behold the power of facebook.

To all of you who have found this blog because Karin linked it to the Liam the Lion Fund facebook page welcome and thank you for visiting. Hope you enjoy reading our story.

Yes, to anyone who has not received a facebook message from my wife, on June 5th we will be hosting the Liam the Lion Fund Spaghetti Dinner and Silent Auction at Riverside Congregational Church from 3pm-7pm.

Tickets are $8 in advance or $10 at the door.

Contact Karin{dot}Olson{at}gmail.com or search Liam the Lion Fund on facebook.

The fund will initially help us purchase a wheelchair accessible van to make Liam’s transportation needs possible as he grows bigger and bigger. A van will not only help with transportation to Liam’s countless Dr.’s appointments but also help with trips to the zoo, to the park, and to his Grammy & Opa’s house in New Jersey.

When Liam’s transportation needs are met the fund will help with any accessibility issues in our home. Any funds not used for Liam’s care and needs will be donated to charities and causes helping special needs children any where that we can help.

In addition to ticket buyers, donations of prizes for the silent auction would be greatly appreciated.

This event is only the first of many as we already have plans in place to make an announcement during the event for our next event.  It’s gonna be a barrel of fun so keep your fingers crossed that we get our ducks in a row in time for that.

*****

Followers of my Twitter feed will already know that over the past couple of weeks Liam has been weaned from a particularly complicated seizure medication. It was a wonderful help in Liam’s progress but its harsh side effects give us concern on how long a course of the med we should attempt. Now that Liam is older and bigger and the type of seizures that he experiences has changed we have more choices when it comes to meds. Choices that can give us freedom from the intense decline of motor skills and low muscle-tone that Sabril has given while helping relieve him of his infantile spasms.

Week 1 was a breeze, a drop of 25% of the dose and Liam handled that like a champ. No increase in activity at all. Week 2 however and another 25% drop and all hell broke loose for a few days. Two seizures severe enough to require diastat in three days with a general sense of twitchiness in between. On monday morning Karin spoke to Liam’s neurologist and we started Liam on one of those choices I talked about earlier. By lunchtime the new dose of the new med was on board and Liam was on his way to three seizure free days in a row.  A feat unseen in a fair amount of time. We are holding the wean from Sabril at the week 2 level and will continue at a slower pace until he is off of it completely.

I know better than to think that this new med will make that much of a difference in the long-term picture of Liam’s seizures. Seizure activity will be a lifelong battle and by the time we get the dosing dialed in on the balance between no-seizures and downright sedation, he’ll put on a few pounds and we’ll start the dosing game all over again. But for now, for today, and for this week we’ll take it as a win and say that we are currently fans of his new seizure med.  Ask me again in a week and my answer may change.

*****

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