Danielle, 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
Thanks SO much, sweetie! I can relate so much with all the emotions you're feeling...it's so hard with our babies being sick...and then the lack of sleep. Sheesh...talk about the baby blues! :O) 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)
Cute pics and vid. I tried to post a long comment last night and it never went through. Dunno what happened. Oh well, I was mostly just venting anyway. Felt good to get it out, even if it didn't go through. I also vented some more on our blog. Just had one of those days!!
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.
I’ve had several emails today asking if I know Mike W. of Marissa’s Bunny personally. Trevy’s blog was linked on her site. Although it’s not now. I’ve posted here and there at his request. Because…well…we’re a community. Us IS families. And Marissa is wicked cute. Her daddy has a way with words. Also who wouldn’t want the world to know about an iPad give-away? But aside from that…I know about as much as you do. We’ve never met in person. Our only communication has been cyber. I’m a ginormous sap and as such would love to believe that all is right. That the sweet, beautiful families who were promised iPads will be getting them tonight. Tomorrow at the latest. That no one has been lied to. That the personal thank you for your generosity email I sent him on behalf of other IS families I’ve grown to love and was thrilled to learn w...
That's right. You. Sitting there glued. To the computer screen. Getting your Trevy fix. You who hasn't been able to tear your eyes away. The one who checks back here gobs of times a day. Hanging on every post. Especially the dripping with drama or funny posts. Because you need to either laugh or cry alternately. Just like me. And somewhere...sometime...somehow...over the course of these past couple years... ...you found yourself here. Reading about me. About my family. About my Trevy. And slowly you were drawn in. Until you couldn't help yourself. You were head over heels. Unashamedly addicted. Maybe we connected in a support forum. Perhaps we're old college friends. I know we have family following. Hi guys! Some teachers and therapists. Maybe even a medical professional or two. Perhaps our kids play ball together. We might be FaceBook friends. Or you could be a friend of a friend. Even a complete stranger. But to us... you each have a very special pla...
I tend to be a live out loud kinda girl. But sometimes... well...sometimes life is just so heavy. So intense. So overwhemling. That it brings out the recluse in me. Like lately. The thing is...I know it'll pass. It always does. And I'll learn something. Grow. Hopefully. Survive. Certainly. Because I have to. It's just right now. In this particular heavy moment. I would much rather run away to some tropical paradise and sip martinis until Jonathan calls to tell me Trevy's back at home. Happy. And seizure free. With a new head of curls covering the scar and bouncing around the house. I am a coward after all. I've never denied that. And I really don't want to live through this next month. Which is probably why my posts will be random. At best.
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