Tuesday, September 13, 2011

Changing all the time...

I thot maybe it was time to talk about our new routine here... our new a the moment routine I guess you could call it -- since it could change again next week! And I am not kidding...

Sam is now on a new med regime:
7am ~ 250mg Valproic acid and 250mg Co-Levetiracetam (Keppra)
2pm ~250mg Valproic Acid
9pm ~ 750mg Valproic Acid and 250mg Keppra

With his meds this high it is really setting Sam on his ass. He is so tired that he now sleeps til 9am (or later if needed) and goes to school for 12.30 where he is in  a class where he works on Math and English until 3.30 when school is out. He has football practice on Tues and Wed, games on Fridays -- he is assisting the coaches where he can and on Thursdays he has cadets. If Sam has any troubles with sleep (or lack of it) he is to stay at home and rest. We are trying to make his school stuff as normal as possible but with his high meds, short term memory losses and TBI issues we are concentrating on 2 courses right now -- with the option to add more as he feels he can handle without adding stress into the equation.

On this coming Friday we are off to Wpg for the ESAM annual general meeting AND his keppra doses get doubled to 500mg twice a day then too, so we may have a new routine to follow after that. School schedule may change also... so we will see.

Sam was none to receptive to this new school schedule at first until we wrote out 3 scenarios for him to choose from. He then realized what we were trying to explain to him. Mostly that this is temporary(hopefully only until January) and for his best interest and health.  He is still pretty unhappy about it most days but he realizes (I hope) that there really is no other option. We choose this routine because it enables him to still spend lunch and breaks with friends at school, participate with his football team and cadets AND (mostly) reduces the stress that he feels with school -- that cause the seizures.

Now also add to that he has a full fiberglass cast on his foot -- the doctor thinks he may have fractured his ankle and hopes that this will help it to heal better or at the very least help the swelling to go down so they can get a better read on the xray...

This new routine also means more running to town for  Dennis and I.  Depending on our day and our schedules, one of us drives Sam the 30miles to school and then comes home. I also am running into town for football once a week, cadets (I use this time to visit with Daddy!),  and Friday football games. Hannah has joined gymnastics this year and since she has never asked to join anything really we felt it was not fair to say no to her.... so we are in town 2times every day ... 30 miles one way...

Some days I have done meals, laundry, housework, phone calls, writing, football stuff AND drove 120miles... whew... no wonder I am beat! I know this is just a season and it will all be over with before I know it. I am trying to see the best in each day -- such as Sam is now almost a month seizure free!!!!, Josh is starting to talk with us, Isaac will be 14 on Wed, Hannah is growing into a beautiful young lady....

sigh....

All because routines change...

3 comments:

Caregiver said...

Jodi, good to hear these meds are helping Bill takes probably twice this much or more of both drugs and a few more. Can you see if you can get a medication dispenser that will automatically go off and you can be relieved of some of this chaos? Medicaid might pay if you have that for Sam.
As for the running, it seems to never end does it? Amazed that Sam is this active, and that you and Dennis are able to keep up! Glad Sam has not had a seizure this month...seems like heaven. Good luck to you and here is a HUG for that big SIGH. G

Brooke said...

i tried to comment on your other blog today, but unfortunately those type comments don't work for me. just wanted to send you {{{Hugs}}}

Caregiver said...

Jodi, I added to the Facebook Visible Angels. I cannot get mine to do it yet. I am very limited in friends I accept. How to reach other caregivers? Big question and goal.