the half way mark

With all the news lately of controversial police shootings, someone setting homeless men on fire and the FBI deciding Hillary Clinton is above the law, I hardly want to tune in to anything media.  What a fallen world we reside in.  It gets harder and harder to find any feel good, uplifting stories in the news. All I can think to say is Jesus come quickly!

The kids are all home and back into their normal routines of staying up late, sleeping in, working their part time jobs, eating a lot and hanging out with their friends.  It’s all very typical, expected teenage behavior. To think we have already hit the half way mark of summer!  Sidney got her cast last week and is definitely counting down the days until she gets it off.  Four weeks in the middle of summer sporting a cast is no fun for anyone, especially a teenage girl who wants to tube at the lake, float around in the pool and darken her tan.  She has three trips to the lake this month alone so the cast is not really convenient but it is a necessity so she is dealing with it.

Yesterday Travis and I took Ryan for a visit with the neurologist.  We increased the frequency and intensity of his VNS although I am still unconvinced it actually does anything to stop seizures.  We also discussed the cannabidiol study coming up and that only 25 people in the state will be a part of the trial.  He is on the list of candidates but there is no way to know if he will make it through the selection process.  We certainly are not hanging our hats on it although we would love to see him on medical marijuana for the next two years as it has shown amazing results in decreasing seizures.  When the doctor found out Ryan had a stress fracture a few months ago likely from his seizure meds, he decided we need to get Ryan off of the valproic acid he has been on for a few years.  Otherwise known as Depakote, it is a nasty drug and hard to get off of.  With the increased intensity and frequency of his seizures, the doctor wants to put Ryan on the ketogenic diet and take him off the valproic acid at the same time.  We have considered the ketogenic diet in the past but were not able to do it because of Ryan’s oral aversion to many foods.  Then he became dependent on the tube feedings so it was not possible to try.  Well now there is a ketogenic formula so the time is as good as any to give it a whirl.  This diet works for some kids and not for others but we will never know if we do not try. Because Ryan is completely tube fed, this will be easy to implement as the diet is just nasty with a very high fat intake (think  butter, cream and mayonnaise).  In the next few weeks Ryan will be hospitalized at the med center for several days to implement the diet and wean him off the drug.

Summer is flying by and in no time at all the youngest three will be heading back to school then Brad will be moving on to college.  He will love this next season of life, but it will definitely take some adjusting for the rest of us to get used to the void we will feel without him here every day.  Although, after sharing a room for over thirteen years, I am certain Trevor will enjoy having their bedroom and bathroom all to himself!

Much love to you all!

 

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