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...
they grow back curly! Saw the "unknown" flashing on the face of my cell phone and knew who it was. Who it had to be. Dr. Fellow. My eyes met Grams' and I nodded. Grams has a pool, see. For super hot days like today. We're also having a septic installed. Which meant no water or facilities at my place. But those weren't really the reasons I was there. Close to mom. The purple ringing thing in my hand was. Only I wasn't prepared for it to be ringing SO darn soon. Shortly after lunch instead of dinner! I swallowed. Took a deep breath. And clicked connect. Dr. Fellow has a very nice phone tone. Clear. Hint of compassion. If only a stitch of humor were added...it'd be heavenly. But there was no humor. Just business. He's very direct. I'm learning that about him. Which explains his short hello. Followed by immediately pushing into the news. Being that it was a unanimous consensus. The entire surgical committee feels Trevor is a good candidate. And then p...
Especially when you have to cross bridges to get ANYWHERE. Very LARGE bridges. The crests of which I inevitably get stuck at. Speaking of...why is it that at the tippity tops of our bridges...the railings always open up? To reveal an eagle's eye view of the white capped depths below? I HATE that. And sure enough...in route to Dr. Pedi yesterday...they must have seen me coming cause traffic ground to a halt at the top of the Mt. Hope Bridge. Where I felt less than Hope-ish. My palms gushing my nerves onto the steering wheel for a good 15 (felt like forever) minutes. Not just things medical bring out my cowardly lion. Heights do too! Anyway... Grabbed an iced coffee and chocolate cream filled to settle my nerves on the way. And we arrived on time...in one piece. Of course. Dr. Sick-Visit-Pedi breezed in chart in hand. Glanced down. Then at Trevy. Then said... "He has a history of Infantile Spasms?" Surprise and speculation in her voice. We get that a lot. It...
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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