Trevy's Current Med Sched...
AM
75 mgs Topiramate (mixed with applesauce & maple syrup)
1/4 tablet Banzel (mixed with applesauce & maple syrup BUT we should be Banzel free by the end of this week!)
100 mgs B-6 (crushed & mixed with applesauce & maple syrup)
PM
75 mgs Topiramate (same deal as the am)
100 mgs B-6 (ditto)
NEW ADDITIONs
PM - 0.125 mgs (1 tablet) of Clonazpem - Despite my personal feet dragging on this one...we haven't noticed any ill effects since we introduced this newbie last week. And it's a super nice bonus that it's a yummy meltaway tablet!
2x daily - 2 teaspoons of Liquid Dualcitra added to juice 2 -3 times daily. This is to counter the acid increase side effect from Topiramate. We just had labs done last week and Trevy's CO2 levels are back in normal range! I'm SO happy... A) because the thought of Trevor going into metabolic acidosis was freaking me out B) because we have seen positives since the addition of Top and I didn't want to pull the plug
Trevy's Current Therapy Schedule...
Speech Therapy - Mondays at 8 am. Mornings work nicely for Trevy...which explains the insanely early hour! Since tapering off of Banzel we've noticed that Trevor seems more clear. And has been "saying" more...either with signs or attempted words. Although I do want to clarify that none of these skills are done with consistency. It's hit or miss. But each has been seen at least twice...which makes my heart hope-smile!
Some new (and re-emerging) things we've seen in signs:
open
all done
more
eat
Some new (and re-emerging) sounds we've heard:
open (mostly just the "ohhh" but twice I heard the "puh" sound as well!)
bye (appropriately!)
hi (appropriately!)
uh (as in "uh oh" when something falls to the ground)
Physical Therapy - Mondays at 3:30 pm. Working around Trevy's very heavy seizure & med induced napping makes therapy scheduling interesting! And day consuming...
Miss. PT is continuing to work on helping Trevor navigate the stairs. His motor planning is not in sync with the up and down process involved. Nor is his patience! He can manage 1 - 2 stairs on his own...but from there it's anybody's guess if he'll be hurling himself backwards or forwards. He CANNOT do stairs solo. Miss. PT & I have agreed that our goal for Trevy is that he can manage stairs SAFELY solo by his 3rd birthday!
Occupational Therapy - Every other Tuesday.
Playskills Therapy - Wednsdays at 3:30. This is a new addition to Trevy's therapy routine. A teacher from Groden (his Thursday playgroup) is now coming to our home and working one on one with Trevor. I really feel like this is a HUGE benefit on a couple of levels. He is now separating more easily on Thursdays. Which makes it better for me! And it has allowed Miss. Playskills to see who/how Trevy is in his natural environment. Which is MUCH different from Groden Trevy. She has also been more exposed to his seizures. Which I think is SO important to understanding him. Like last week...when he clustered throughout the entire hour. But was such an amazing trooper and STILL tried to work! It wrenched my heart til' the tears squeezed out silently down my cheeks. Watching him seize and then try to put a shape in the sorter. Seize and then try to sign. It's been awhile since I've cried during therapy clusters. But that was just too much for my sappy heart! And I feel like it was an important moment for Miss. Playskills to be a part of.
PlayGroup Therapy - Thursdays 12:30-2:30 at Groden
AM
75 mgs Topiramate (mixed with applesauce & maple syrup)
1/4 tablet Banzel (mixed with applesauce & maple syrup BUT we should be Banzel free by the end of this week!)
100 mgs B-6 (crushed & mixed with applesauce & maple syrup)
PM
75 mgs Topiramate (same deal as the am)
100 mgs B-6 (ditto)
NEW ADDITIONs
PM - 0.125 mgs (1 tablet) of Clonazpem - Despite my personal feet dragging on this one...we haven't noticed any ill effects since we introduced this newbie last week. And it's a super nice bonus that it's a yummy meltaway tablet!
2x daily - 2 teaspoons of Liquid Dualcitra added to juice 2 -3 times daily. This is to counter the acid increase side effect from Topiramate. We just had labs done last week and Trevy's CO2 levels are back in normal range! I'm SO happy... A) because the thought of Trevor going into metabolic acidosis was freaking me out B) because we have seen positives since the addition of Top and I didn't want to pull the plug
Trevy's Current Therapy Schedule...
Speech Therapy - Mondays at 8 am. Mornings work nicely for Trevy...which explains the insanely early hour! Since tapering off of Banzel we've noticed that Trevor seems more clear. And has been "saying" more...either with signs or attempted words. Although I do want to clarify that none of these skills are done with consistency. It's hit or miss. But each has been seen at least twice...which makes my heart hope-smile!
Some new (and re-emerging) things we've seen in signs:
open
all done
more
eat
Some new (and re-emerging) sounds we've heard:
open (mostly just the "ohhh" but twice I heard the "puh" sound as well!)
bye (appropriately!)
hi (appropriately!)
uh (as in "uh oh" when something falls to the ground)
Physical Therapy - Mondays at 3:30 pm. Working around Trevy's very heavy seizure & med induced napping makes therapy scheduling interesting! And day consuming...
Miss. PT is continuing to work on helping Trevor navigate the stairs. His motor planning is not in sync with the up and down process involved. Nor is his patience! He can manage 1 - 2 stairs on his own...but from there it's anybody's guess if he'll be hurling himself backwards or forwards. He CANNOT do stairs solo. Miss. PT & I have agreed that our goal for Trevy is that he can manage stairs SAFELY solo by his 3rd birthday!
Occupational Therapy - Every other Tuesday.
Playskills Therapy - Wednsdays at 3:30. This is a new addition to Trevy's therapy routine. A teacher from Groden (his Thursday playgroup) is now coming to our home and working one on one with Trevor. I really feel like this is a HUGE benefit on a couple of levels. He is now separating more easily on Thursdays. Which makes it better for me! And it has allowed Miss. Playskills to see who/how Trevy is in his natural environment. Which is MUCH different from Groden Trevy. She has also been more exposed to his seizures. Which I think is SO important to understanding him. Like last week...when he clustered throughout the entire hour. But was such an amazing trooper and STILL tried to work! It wrenched my heart til' the tears squeezed out silently down my cheeks. Watching him seize and then try to put a shape in the sorter. Seize and then try to sign. It's been awhile since I've cried during therapy clusters. But that was just too much for my sappy heart! And I feel like it was an important moment for Miss. Playskills to be a part of.
PlayGroup Therapy - Thursdays 12:30-2:30 at Groden
Comments
Sounds like you guys are loaded down with therapies and such. I don't think our area offers much in the way of playgroups -our program coordinator has never mentioned anything like that around here. It would be nice to get Austin out in a safe environment to see how he does in a group.
You're such a strong mama!! Three kiddos, baseball, therapies, meds...you do it all!
Anyway...I'll email you later...
...danielle
I hope the Clonazepam eases these other Rx transitions...As our Dr.Neuro says, "Colby LOVES Clonapin!" (Clonazepam)!!! It is so funny!! It does help him alot....
Now, you need to start resting up...Important things coming!!!
~Cyndi