Wednesday, May 26, 2010

And So It Goes



I have watched this countless times over the last two days.
It depresses the heck out of me, but I love it!
It's not the reference to a lost love, it's more than that. It's loss in general I guess.
There's a part where he says " Everytime I've held a rose it seems I've only felt the thorns". That makes me think of kids like Naomi. There's so many thorns some days I don't stop and enjoy the rose.
There's so much worry. Stupid stuff like meals, bowel habits, medicine weans (after a month I'm sure we're out of the woods), her falling. The stress of her screaming when I change a diaper, comb her hair, put her helmet on. Sometimes I am so sick of the screaming, there's no reason for it. But I understand she can't communicate and that's frustrating. But still, the screaming feels a bit like torture some days.
So here's what's new or not so new
We dropped her Zonegran to 25 mg in a.m. on April 28 and so far so good. She still takes 50 mg at night. That dosage didn't change. I'm supposed to call anytime now and see about dropping another 25 mg. But we are going to a graduation out of state and I really don't want to be in the middle of a med wean while away from home. One good thing is taking away just 25 mg also rid her of the "can't sweat" side effect. I've had her out in 80+ degree weather for over 20 minutes and there was no sign of over heating.
Naomi's stroller is not here yet. It is litterally on a slow boat from China :) When we ordered it they were manufacturing the strollers in China and have since moved it to USA. Which is a nice change! But it's taking FOREVER. 3 weeks ago they said it should be here in 2 weeks. But no word yet! I can't even remember how long it's been since it was ordered. I know I thought we'd have it by the end of April and that didn't happen.
School is almost out! I am so happy! Isaiah has 2 test tomorrow and I wish that was it, but I know he started a new chapter in Social Studies on Monday, so I'd think they'd test on that at some point. They are running out of time!

2 comments:

Fawn said...

I hadn't heard this song before, but I do love Billy Joel. Amazing singer, lyricist, and pianist.

I'm glad to hear that the sweating problem is gone now -- at least that's one less small thing to worry about.

Good luck with the trip.

*hugs*

Lisa said...

I understand your feelings. Elisabeth has been crying SO much lately, and she never was a fussy baby. I used to tell people that she would go days without crying....now it's all she does and I don't know why. But maybe she is frustrated too, like you mentioned in regards to Naomi. I am sure it would be horrible to not be able to communicate...I would get grumpy too!

Anyways, we are blessed to have our little 'roses', aren't we? Worth all the little 'thorns' :)

Have a great holiday weekend!