for at least a few minutes!
Until the clouds rolled in...
and it got chilly again!
To all the parents who have walked through the guardianship process — my heart is with you. Our paperwork is prepped and ready to submit this week. He turns 18 on April 3rd. I've been thinking about this for a year now, but only just mustered the energy to move forward — the loom of his birthday my propellant. Overwhelm has paralyzing effect. I'm struggling to recall the last time I didn't feel overwhelmed. It struck me how all these years of walking through disability beside Trevor should have made me stronger and yet... I suppose it's a different kind of muscle being developed.
Comments
Thank you for the post on our blog! The respite care is a great idea and we might have to check into that! My mother lives nearby and helps as much as she can but she and my husband are both working and therefore I'm the lucky one that has to get up all night long!! I am really wanting to try the melatonin, but our doctor wants us to wait until after the ACTH. Trevor was on a pretty high dose of ACTH...Reagan's on the low dose protocol, it worries me because her doctor is almost too cautious, I just pray it works!!
Take care and keep in touch!
Tera
You know...everything happened so fast with Trev that he was already 1/2 way thru his treatment before I learned about high dose vs. low dose. In a way...I'm glad we just "hit it hard & low" as one neuro here loves to say. Trev didn't have many side affects...and his spasms stopped after the 4th injection. And 5 weeks later...it was over!
I really hope you qualify for respite...I wonder why your neuro is hesitant about melatonin?
Anyway...I know it will get better...just hopefully sooner rather than later! :O)
...danielle
The kids look like they had fun at the beach. We haven't been in a while and we live in San Diego. Pretty sad, huh?
I'm going to post some pics of our day at the Wild Animal Park.
Cheers!
-Shanna