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.
3 comments:
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)
...danielle
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.
Cheers!
-Shanna
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