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 felt like such a heel not going with Trevy for his first post hemi EEG. Yeeeeeees...Jonathan went with him. Yeeeeeees...he's just as good as me. But still! He's my baby! I was instead sitting on floor 6 east waiting for Neurology to get their boots here and help me sort out this medicine mess! Seriously it's like a bad joke...how many Neurologists does it take to write a bloody script? And fax prior authorizations? Cause Trevy's been back for hours now. And I'm STILL waiting! Anyway... Jonathan had just stepped out to meet the pizza delivery guy when Dr. EEG made his rounds. Of course I asked immediately if he had read the EEG. Of course he had. That's why he was there afterall. And I cried when he told me... that for the first time in almost two years. For the first time since this whole crazy mess began. my baby's EEG is completely normal! Side Note: It's super fun to sob in front of Japanese men and watch them squirm When I kept repeati...
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...
only MUCH MUCH bigger! I had noticed (yes...I stalk my site meter!) that a government ISP had logged onto Trevor's blog. Whoever it was had spent a good deal of time hanging out too. Followed a few minutes later by a government ISP...hailing from Washington. As in DC! My eyebrow raised. It was just kinda odd. Note-able odd. You know? Anyway...later that day (last week) I was folding laundry & thinking my crazy insane thoughts. Along these lines... I hope I'm not saying anything I shouldn't! Maybe I made somebody mad? Wait a minute! I live in America! I'm allowed to say anything I want! Aren't I???? A shout from the other room interrupted my thoughts before I had a chance to further mull. It was Jonathan. I had just received an email. **Side note...he's always doing that! Reading my emails! Sheesh!*** The said email was from a US Senator's aide! Asking if he could speak with me. Little ole' hardly has time to splash some make-up on ...
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